Musician and Teacher
November 23, 2012
Well, where do I start? In August of this year I had my annual blood work done. The PSA came back high. It went from a 2 to a 9 in one year. My GP called me and wanted me to go to an Urologist as soon as possible. Well, his office referred me to Delaware Valley Urologist and specifically to Dr. Orth. Dr. Orth did a digital exam and said that he did not feel anything too wrong and put me on two weeks of antibiotics and ordered another blood test. The blood test came back with a higher PSA. Since the reading almost doubled he felt that it must be a false reading. So he ordered biopsies done of the prostrate. That was done on November 7th. I went back for the results on November 20th expecting to be told everything was alright. When Dr. Orth came into the room he asked how I was doing. I told him some of the things happening since the biopsy and how since I am diabetic it takes longer to heal. His response was, that is true. Then the words that everyone hates to hear coming from their doctor, “This is the part of the job I hate!” Then, as the train started to run over me he says, “Jim, you have CANCER!”
OH MY GOD!!! Not only did the train hit me but also trucks and automobiles ran over me also! What do you mean cancer? I’m not supposed to get cancer! I worked with, in and around carcinogens for years. If I was going to get cancer I would have had it way before now. CANCER, CANCER, CANCER! The words kept echoing in my mind. No I can’t have cancer! I have too much to do. I can’t take off teaching to deal with this. I can’t stop making some money at this point in time to deal with cancer! CANCER, CANCER, CANCER! I hear Dr. Orth’s voice coming over everything, “Jim, I know that you will not remember most of what I am telling you today. But we will go over it again with your next visit.” Then he starts telling me that out of the 12 samples he took four from the right side came back showing cancer with a Gleason number of 7. He proceeded to tell me about the treatments explaining each and the pluses and the minuses for each. He said “Jim I’m not going to say ‘I’m here for you man!’ but I am not going anywhere. I will only take two days for the holidays. You can make the next appointment before Christmas or after Christmas.” Again he said “I know you will not remember most of this but we will go over it all again next time.” Well, he is wrong about that part… I remember everything because it keeps running through my mind like a bad movie.
As I get up to leave the exam room going to the front desk, my legs feel weak and I just want to breakdown. NO!!! I CAN’T DO THAT HERE!!! Dr. Orth brings me a packet of information and a book called “Prostrate Cancer”. He points out an address of a web site to go to. Dr. Orth is a good man. He has answered the questions I came up with straight answers right away. No bull! I picked up the script for the CT Scan and Bone Density test and set my next appointment for January 8th because I just want to get through the holidays.
As I walk out of the office to get into my truck, I want to scream “I HAVE CANCER!!!” I want to drop on to the floor and cry! NO!!! I can’t!!! I have to get home to Paula. She is not going to take this well. We live only about 1.25 miles from the doctor’s office but it was one of the longest drives I have had. I went into the house, put the literature down on my desk took off my jacket and stood there holding onto my desk chair looking at my computer. Paula, came in, looked at me and asked right away “WHAT?” I couldn’t hold it any longer. “I HAVE CANCER!” I sobbed. She walked right over and grabbed me, holding me. She was not crying, only me. Paula was/is my rock. I got through that wave of crying then we sat and talked. She kept saying that she will be with me through this whole thing. She wants to be in the doctors’ offices with me. She says no matter what she will be there! Paula has gone into her “Work Release Administrator” persona. She is taking charge. Then we both agree that our daughter, Bridget, need to know now. We know that if we don’t tell her she will “kick our butts.” When I got on the phone with her, she had on her Social Worker persona going and right away said “Okay what’s happening?” God has blessed me with two strong women to keep me straight! I understand the next day Bridget chased down any doctor at Lady Of Lourdes Hospital that has to do with this type of cancer and talked with them. Did I say that Lady Of Lourdes is where she is a social worker? And needless to say, she is highly thought of there. With these two women how can I not get through this?
That night was a rough one. “YOU HAVE CANCER!” kept screaming through my mind. Some of my favorite TV shows were on and I can’t tell you what they were about. Needless to say I did not sleep much that night and neither did Paula. About 5:00 a.m. I gave up and went to take a shower. Paula got up during that time and by the time I got out of the shower and dried my hair (I have rather long hair!), we both had breakfast. While I was sitting at the table reading and finishing my breakfast, Paula came over. She looked at me and said, “Can I ask a question? Can I cry now?” We stood there holding each other and cried together. We both tried to make little jokes to cheer up the other but they were lame. After a while we sat and just talked about whatever came into our heads. We seem to be doing that a lot now.
After a while we agreed that we have to get something done. I needed to go to a few stores to pick up things and had an appointment with Dr. Joey DiMenna to have my feet checked out and trimmed. While I was out, Joey’s office called and asked to move up my appointment. Paula agreed for me and then, thinking I was too upset to go there, asked to talk to Joey. By the time Joey called back I was home. I apologized and told Joey about the cancer. I then said that I would talk with him when I got there for the appointment. When I got to his office, we talked while he worked on my feet. He agreed with much that I was saying about my feelings at that point. But one thing he said that I will not forget is “…Look Jim you have no control over this cancer. Only God does! Let Him take care of it, and let Him use the doctors to take care of this.” As he was leaving the exam room, we shook hands like normal but then he stopped and took a hold of me and hugged me. I have to say that in this age where most doctors just seem to move you along like an assembly line, I have some very caring doctors that take the time with their patients.
On my way home from Cherry Hill the traffic was not too bad for the day before Thanksgiving. But I still had the voice screaming in my head “YOU HAVE CANCER!!!” So as I got off the highway I stopped at a liquor store to get a bottle of Scotch thinking that maybe if I have a glass or two it might quite that screaming voice for a little while. When I got home I changed my pants to lounge pants and made sure everything that needed to be taken care of was. As Paula settled down to take a nap, I poured myself a glass of scotch and settled myself down to watch some on-demand TV and maybe some history channel. Well, that first glass lead to another one with some pretzels. By the time Paula got up I was hammered and going for more scotch. By the time I was done, all the TV shows that I wanted to watch made no sense, I finished the bottle, Paula tried to feed me some cheese and fruit, and as I went to the bathroom I passed out on the bathroom floor. Paula always said that the few times that I do get drunk that I am so funny. I am a happy drunk. But that night I was not a happy drunk. As I laid there on the floor, not able to get up, my wonderful Paula, my loving wife, tried the best she could to help and care for me. She kept trying to put a cool damp cloth on my head and feeding me cracked ice each time I came around. She did not get very much sleep that night taking care of me. And to top it off the screaming voice in my head did not shut up! It just got louder, and a chorus of other voice joined that voice screaming all the stupid things I have done in my life. I don’t remember most of what I said or did during this time on the floor, what I do remember of what I thought, said and did was not good.
About twelve hours after I took that first sip of the scotch I started to come around enough to be able get myself up on the toilet. Paula was asleep on one couch and I was able to get to the other. After a few more hours of sleep I made it into the bedroom and slept another few hours while the TV was on. About 6:00 a.m. I got up again my stomach was upset but hungry. I had a lump in my throat, from what I don’t know. And my body was hurting on my left side. I later found out that, when I passed out I fell on my left side and bounced off the tub before hitting the floor. BUT… I did not have a headache! One good thing! But, I still had the voice in my head screaming “YOU HAVE CANCER!” Added to that now was a voice saying, “That was a stupid thing to do!” Who said that choruses were great??? They sure never went through what I just been through or what I am going to be going through.
Well, Thanksgiving Day went by with me taking it easy and watching TV and Paula trying to nap. That evening we went over to Bridget, Mike, and Lexie’s house for Thanksgiving dinner. We had a great time, a great dinner, and great people (even Paula’s ex). I am grateful for Paula, Bridget, Mike and Lexi. I love them so much. I am also grateful for my Doctors and Friends. But it is hard to be thankful when you have that voice screaming in your head “YOU HAVE CANCER!”
We came home from the dinner and tried to relax. Both of us very tired. I kept falling asleep while watching TV so I finally went into the bedroom. However, when Paula came in we were both wide awake. We decided that what we needed was some herbal tea to help us go to sleep. I went to the kitchen to fix it and by the time I got back into the bedroom with the tea Paula was sound asleep. I laughed and went out to the living room to turn on the TV and drink my tea. There I slept on and off all night.
This morning I woke up early like normal feeling better. I still hurt from falling and I still have the voice screaming, but it is a new day. We have Lexie with us today and she does take the bite out of a bad day. Then I sat down and started to write this. So, why am I writing this? I really don’t know. I just felt that I had to write all of this out. Maybe getting it down in writing will help me deal with this new mountain. Will, anyone read this? Again, I really don’t know. I kind of hope someone does. Will this story have a happy ending? I don’t know again! But, with the love of Paula, Bridget, Mike and Lexie I know that the road will be easier than without them. Maybe something good will come out of this. Come back later and see. I will try to add to this all during this journey.
To Be Continued!
November 25, 2012
Yesterday I posted this whole article/journal/blog, I really don’t know what to call it, on the Internet. Thanks to Facebook, I heard from a lot of people that I have loved and known through my years. They have said that I have been added to their prayer list. That is good to hear! Then, today, since it is Sunday I, of course, went to Church.
I went early in order to do some work on the Music Library and also to go over the song we were going to sing that morning. Since I am the whole men’s section of the choir at this point, I end up doing a lot of solos so I need to make sure that I have it right. At the end of the rehearsal we have, because of my strong voice (read big mouth) I am the official “call to prayer” person. When we are ready to go upstairs I call out, “We goin’ pray now!” I then ask someone to lead us in prayer. Today I asked a fellow retired teacher from the Woodbury School system to pray but then added, “Please keep my Wife Paula, Daughter Bridget and myself in prayer. I have been diagnosed with cancer.” As all the jaws hit the floor, I added, “I will be alright. This is a cancer that can be beat! But, it is doing a job on my mind. And it is rough on my wife and daughter.” I could see that there were tears in many eyes as Libby lead us in prayer.
As the prayer ended just about everyone came over to hug me and give me words of encouragement. By the time we got upstairs, waiting for the service to begin, the Lay Leader, a strong man and wonder friend, came over to me, grabbed me and hugged me, again giving me words of encouragement. You know? I am not much of a hugger except for my wife and granddaughter. And most of those words of encouragement I do not remember. But, I remember each hug and found them meaning more than all the words everyone was saying.
Now as to how I am doing? It has been five days since I found out. My emotions are still right on the surface. Whereas yesterday was a real rough day for me emotionally, today was better. I am still ready to sob at any moment but I can keep it in check better. Every time a go to tell someone that I have cancer I start to well up. But today I am better able to control it. Who knows about tomorrow? One thing I do know… I WILL BE ALRIGHT! I am a survivor and I know that God will not let me not survive!
Now if I could just sound off about a gripe. I know that people really do mean well, and they are trying to cheer me up, but when they ask what type of cancer it is, and I tell them that it is Prostrate Cancer caught in the early stages. They proceed to tell me that it is the most treatable type of cancer and the success rate is really high. Look, I know you mean well, but I know all of that. I think the worst part of having cancer, at least at this point, is not the damage it is doing to the body, but the damage it is doing to the mind. I still have that voice in my head screaming “I HAVE CANCER.” I really don’t want to deal with this now. I don’t have enough time to do all the things that I have to do now let along add cancer to it. So, if you see me or anyone else who has cancer, please don’t try to cheer me or them up by saying that the cancer is easy to beat! Ask us how we are doing, listen to us. Sometimes we just need to talk to get our heads straight.
Oh… by the way… I WILL SURVIVE and I do love you all.
Until next time:
November 28, 2012
The past few days have been interesting emotionally. I was over at the WHS on Monday to set up the sound for the Junior High Musical (The Little Mermaid) and I went around to various people who I have taught with telling them that I had cancer. It was interesting because with some of them I could do it without a lot of emotion. It was like I was just reading off a news report. However, for some it was very hard and very emotional. Some people were hugging me; others were coming to me and praying. Just about everyone had their jaws drop open when I told them about the cancer. I do love the caring concern people have expressed, and I know that everyone is meaning well, trying to make me feel better, but I do already know that this is one of the most curable cancers. And thank you for your caring but that does not negate that it is cancer, and it does not take away the fear and anxiety that I am feeling. In fact the only people that have not told me, on the most part, how curable this cancer is, is the ones who have had this or any cancer. In fact I did not understand, no matter how hard I did try, the fear and anxiety that is associated with cancer. Many of you know that I am a man of faith and I know that God will take care of me, and I do appreciate all the prayer lists I am now on, but I still have that voice in my head that is screaming “I HAVE CANCER!” I am paying a lot less attention to it than I did on the 20th but I still hear it. Also know this… I do not even want to look at a scotch bottle now!
On Tuesday, after talking to a few more people at the high school again, I had an appointment with my GP, Dr. Kruger. As I walked in the office he asked me how I was doing. I said “Not too good. I have cancer.” He swung around asking “WHAT?” We sat down and he opened up my chart. We talked a while and he checked me over. I’m okay and I lost 5 pounds. See that some good can come out of this. Although, I think I would rather have the 5 pounds back and no cancer! He gave me some medicine to help me sleep and some to help fight the anxiety. As I left his office, Dr. Kruger told me to keep in touch with him and come back in one month. My normal appointments are every three months. Dr. Kruger was very encouraging, letting me know some things and even laughing at my lame jokes. As I walked out the office door he said “Jim the only way you will beat this is to do what you are doing. Be active and fight back. You are a Survivor.” You know what? Yes I am a survivor, a scared survivor but still a survivor.
Now for my big concern! As some of you know, Paula’s brother is developmentally disabled. There has been a lot done to him over the years that would never be done today, all in order to “make him better.” Well, they did not “make him better” and has even limited any abilities that he had or could have had. In recent years a group home was found for him that really started to help him bloom. Whereas he will never be what anyone would call normal, he was doing better than he has all him life. The people at the group home are very caring people and look upon their charges as part of their family. Especially Kahreem, is the group home administrator and is always there for David as well as family to us. Well, this is something that has always been hanging over Paula’s head since she is his guardian. What I am getting at is that in early October, David was rushed to the hospital with aspirated pneumonia. We thought we were losing David. He did not look good at all. However, with the help of many people and of course our wonderful Social Worker daughter, the lazy, snotty, know nothing social worker at Virtua Marlton was put in her place and after a month David was moved to Silver Care where he is now eating, talking (as much as he can), is out of bed, and they are even getting him to do some walking. Okay, what is all of this getting to? This has been a lot for Paula to handle. But, she has been holding up. Now, we have this with me. I am worried about her. She is not getting the rest she needs. And when she does get a little rest things flare up again requiring more from her. Look, I know that I will be alright. A little different, but I will be alright. However, Paula is taking all of this on her shoulders, great shoulders that they are, but still it is a lot expected of her. So please when you think of me, which I do appreciate, think also of Paula. She is a wonderful strong woman, and wonderful mother and an astonishing wife. Nevertheless, even the greatest get worn down.
Until next time,
December 3. 2012
Well, had the Bone scan on Friday and I am having the CT Scan in about an hour. Just finished drinking the "Berry Smoothie" Barium suspension. Believe me... it is not a Berry Smoothie!!!
December 4, 2012
The last few days have been rough. As I said I had the Bone Scan on Friday. Well, I must have had a slight reaction to the isotope because that evening I was just not feeling very well and did not sleep very well. Saturday I was very tired and still did not feel the greatest. When I went to go to bed that night I took a sleeping pill to help me sleep but soon after I got in bed and started to fall off, my stomach started to hurt and that started my night in the bathroom. As I said before I AM the men’s section of our Church Choir, so I had to be at Church. Well, needless to say I did not make it through the whole service. Right after we sang, I left and came home. At that point I did not want to eat or anything except sleep, which I did for a few hours. By evening I was starting to feel a little better but that did not last long. At midnight I had to drink half of the Barium “Berry Smoothie” because I was having the CT Scan in the morning. It is unnecessary to say that did not taste like a smoothie. Not a good night’s sleep again. I was not allowed eat and at 7:30 I had to drink the rest of that stuff. When I got to Booth’s Radiology they gave me more to drink then hooked me up to dye IV. With a start like this my day was not really good and of course when you are not having a good day more things go wrong. And they did. I will not go into it here, but let’s just say it was not a fun day. Then to top off the night, I again spent it in the bathroom. But this time I did not take a sleeping pill. So, today I do feel a little better and I do apologize to my wife for the last few days. I know that it is also rough on you.
As I sit and think about what has been happening, I think that there are many different “little things” about this cancer verdict that has been given me. The first is the pronouncement. When the doctor said those words “you have cancer.” In our society we are so conditioned that when we hear the word cancer we “KNOW” that it is a death sentence. It doesn’t matter what the doctor says after those three words or what anyone else says, you now have that fear of death. Now I know that I am not going to die from this cancer, but I still have that fear and the realization that I am mortal and will not live forever. Yes, some day I will die!
The second “little thing” is the testing. I kind of think that if the cancer doesn’t get me the testing will. Now, I have had two knee replacements and I thought that I lost all modesty but I was wrong!!! The doctors, nurses and techs think nothing of telling me to drop my pants and underwear. And then the stuff that you have to drink or that they pump into you really should not be in you. You body does what it can to get rid of it and you really don’t feel too well while it is doing that. Subsequently, since these tests are suppose to tell how advanced the cancer is I start to think that it is a lot worst then it probably is. The mind is a wonderful thing to destroy yourself with!!!
The last “little thing” that I can see right now is the treatment. Now, I have not gotten to that point yet but I am sure that it is not going to be a wonderful experience.
Alright, now that was the negative part of my thoughts right now. How about some positive parts? I need to look at the positive also. I might not want to but for every negative there needs to be some positive. My wife Paula has been wonderful and is the biggest positive in my life. It is very rough on her, yet she is there for me, putting up with my bad moods, my shouting and my over all nastiness. She keeps encouraging me, loving me and telling me that I am stuck with her. Who could ask for a better person to spend their lives with?
I also have to remember Bridget and Mike, our daughter and son-in-law. They are there to listen to me and encourage me. Bridget was right there finding out what she could about this cancer and making sure I am getting the right information. When I talk about Bridget and Mike I also have to include Lexi. One look at that face, one hug from those little arms and all the negative goes away and I know that it is all worth it.
Finally I have all the students that I have worked with over the years, the teachers, and staff who I have taught with, the many friends that I have from Church and other places. As well as the wonderful neighbors that have contacted me. I have received many e-mails, phone calls and Facebook messages that have expressed love, comfort, and encouragement toward me that have meant so much to me. And each one seems to come just when I need them. Gee, I wonder who or what has orchestrated that? MMMMM, do you think that it might be a higher being that I like to call GOD???
Bridget said something interesting today. She said that just as Anne Evens, Jake Davis, Jerry Lancaster, and others who have gone through cancer have contacted me to encourage me, when I am done with this, I will be able to encourage others. That is so true because no one really understands what it is like to go through this unless you have gone through it.
Thank you everyone for your help.
Until Next time.
December 7, 2012
I went back to the urologist today to get the results of the Bone Scan and CT Scan. I think I have feared this visit more than the others because this is the appointment where we find out how far the cancer has spread. I kept dreaming about it all night in all sorts of weird ways and settings. When I got up this morning, I woke up tired with a headache. Then add to that my arthritis is really acting up and my whole body is hurting.
Okay… what did the test show? The Bone Scan showed that there was no invasion into the bones. BUT… I have arthritis in my shoulders! IT TOOK A BONE SCAN TO SHOW THAT??? I could have told them about that without the scan. I have it all through my body! Alright, now the CT Scan… That was a different story. Dr. Orth said the report showed some lymph node involvement. He took the CD of the scan and went to go look at it. When he returned he said that it does look like a little involvement but nothing to worry about. We then sat there for the next 25 minutes going over what we talked about last time, for Paula’s and my benefit, and answering questions that we had. Since November 20th Paula and I have been reading and researching everything we could find on Prostrate Cancer and as we asked Dr. Orth about these things he seems to know about even the most obscure things and stated facts and statistics about everything we brought up plus a lot more. In the end Paula and I agreed that maybe the best way for us to go is radiation with hormones. Right away Dr. Orth gave us a list of Radiation Oncologist and we elected to stay with the Delaware Valley Urology group and go to their center in Cherry Hill. Dr. Orth set up an appointment for us to meet with the Radiologist to have an evaluation and second opinion. Dr. Orth said that he insist on second opinions because when we go he is sure that they will agree with what he says and then we will think he is so wonderful. And if the second opinion disagrees with him we will think that he is so smart to send us to get a second opinion. We had a good laugh on that one. That is something about Dr. Orth that I like. He is truthful, factual, and tries to put you at ease during some of the most stressful times of your life.
So… where do we stand now? I go see the Radiation Oncologist next Friday, December 14th. If everything is okay I then come back to Dr. Orth for the markers to be placed in my prostrate and to start the hormone treatment. Then soon after that I start the Radiation, five days per week for about six weeks. Dr. Orth said that I would receive hormones every six months for I don’t know how long. Then we watch my PSAs closely for the rest of my life I guess.
Again I want to repeat that I will be alright. I will come out of this battle, a little changed but I will come out of it. I keep saying that. I don’t know if I am trying to convince myself or what. But this cancer will not take me out. Yesterday, the day I teach at South Jersey Christian Academy, I was outside waiting with the kids for their parents to pick them up. A parent came over to me and asked if I minded if their whole family prays for me each night. Naturally I said of course not. I can use every prayer that is made in my behalf. She then proceeded to pray for me and Paula, right then and there. You know what? It is people like this parent and all of my friends from school, the neighborhood and those I have met along the way, along with Bridget, Mike and Lexi and most of all Paula that will get me through this. I have no doubts about that. Now I know that the next six or so months are going to be rough for Paula and me. But, we will come through this. And I cannot think of anyone better to go through this with than my wife, my soul mate, my life partner, my love, my Paula! She is my rock!
Until next time,
December 10, 2012
This weekend was interesting. I was very tired and my arthritis was really kicking up. But I was still pushing on. God bless my wonderful wife Paula, she saw me and then said that she was tired and needed to rest the whole day so I did also. Even though it was a day of a lot of pain I was still able to get some strength back and able to do a few things on Sunday, like go to Church!
I had a dear friend come up to me at Church and say that she thinks that I am over thinking all of this at this point. I have talked about this with Paula and you know what? I agree. But, how do I stop? I have over 260 college credits, three degrees, and five teaching certifications. I am always reading and I have great retention of what I read. I have had just about every psychology and sociology courses offered by the colleges when I was there. I have been taught how to research almost anything and with the advent of the Internet, my abilities have increased so much. This is stated not as a brag but as background in asking the question… How do I stop thinking about it? I am loaded with questions and when I have questions, I find the answers. I know that I do not look or sound like the typical intellectual but God did give me a brain. I just cannot believe that he gave me this brain just to take up space in my head. I believe that he gave it to me to use it to the fullest ability that he has given me. Many years ago I listened to what people told me I should do, how I should be a Christian, and what I should believe. I made a lot of mistakes doing that! No, I take that back I didn’t make mistakes! I just plain messed up!!! After some big shakeups in my life I started to use this brain that God gave me. I study and research, the Bible and all available information on the subject I am looking at, and I THINK. Doing this, I have found, has allowed me to do the right things.
However, now I have the “BIG C!” Cancer! So, I ask you again how can I not think about it or even “over think” about it? Add to that the fact that Paula and I have a lot to think about and decide. Over the next six months or so there is going to be a lot of changes to my body and life style. Not that my body cannot use a lot of changes, not necessarily what is going to happen, but we do have to be prepared for that.
I have said it before, and not to be mean, harsh or insulting, but nobody can understand what it is to have cancer until you have it. Family members and friends understand some of it but not all that is going on in your head. Also friends do not really understand what the family goes through either unless they have a close family member going through it. How can anyone understand how, out of the blue, that voice screams in your head “YOU HAVE CANCER!!!” And you start to cry. There is nothing to trigger it. It just is there. Or, who can understand the peace that your granddaughter or grandson can give you just by hugging you, or by just playing with her or him. I never understood that until I heard those words, “you have cancer.”
I often ask myself; “why did I get cancer?” Well, I might be over-thinking this again, but, maybe it is so I can understand these things. A friend once said to me, when I told him I had cancer, “Well, Jim, this is not a good thing, but welcome to the club!” I understand what he and many others have gone through and are going through now. Maybe that is why I am writing this… so that others will understand.
Until next time,
December 16, 2012
This has been a busy and enlightening week. As many of you know I still take care of the auditorium and the web page for the Woodbury School District. And both things were very busy this week. We are in the middle of our Winter Concert Season and everybody is finding thing that need to go on the web page. Also our Church Choir had their Christmas Musical today so we did two services along with a long rehearsal on this past Thursday. But the big thing was the Doctor’s appointment with The Radiation Oncologist on Friday. While I was waiting to see Dr. Hirsh, I gained two shocking pieces of information. The first was the shooting at the Sandy Hook Elementary School in Newtown Connecticut. Totally blew me away. I have commented on this other places so I will not repeat it here. The second was a two part set of information. First, Dr. Hirsh was going to perform a digital exam of my prostrate. I was not expecting that since Dr. Orth already did that and I had all of the other test. The second was that Dr. Hirsh was a woman! I like to say that I lost all modesty after two knee replacements but I am wrong. While I was sitting there, in a gown with no back, stressing about this, it hit me. Women go through this all the time with male gynecologist! So I kicked myself in my pride and got over it and took it like a …. Well, I don’t know what I took it like but she kept saying, “I’m not going to hurt you!” Ladies, I am appreciating you more each day!
After the exam was over, I pulled up my pants and proceeded to the consultation room and they called Paula in. Dr. Hirsh then went over everything and pretty much said what Dr. Orth said. The only thing is that she spent more time on the Radiation treatments and the side-effects. Paula took extensive notes while I listened intently. In the end we agreed to go with the Radiation along with hormone treatments. Within 15 minutes, a LPN came into the room gave me the prescription for the first part of the hormone treatments, had an appointment set up in two weeks with Dr. Orth for the first shot of the treatment. Then he also had set up the appointment for the makers to be place in my prostrate in six weeks after the hormone shot. Then two weeks after that an appointment with South Jersey Radiation for a CT Scan and then right after that, the same day, an appointment back with Dr. Hirsh for setting up of the machine and my Tattooing! Yes folks I need to get three tattoos! Don’t get too excited they are just three little dots that will fade over time! Then after that, Dr. Hirsh said that there will be 8 to 9 weeks, 5 days per week of radiation.
Let me now address something else that I found out this week. When I first heard of hormone treatments, I immediately thought that I would need to start to wear a bra and would not have to shave any more (well not having to shave would not be bad). Well I was wrong about that! The hormones that they will be giving me will not be estrogen. It is a hormone that will block the production of testosterone. Since testosterone is what feeds prostate cancer, blocking its production will slow if not stop the growth of the cancer. But, like everything in medicine there are side effects. They are: hot flashes, decreased sexual desire, loss of bone density and increased fracture risk (osteoporosis), erectile dysfunction, fatigue, increased risk of diabetes and heart attacks/strokes, weight gain, decreased muscle mass, anemia, and memory loss. Cholesterol, especially the LDL cholesterol, tends to rise, and muscle tends to get replaced by fat. From what I have read, that is a lot of the same things that women go through during and after menopause. And when you think about it menopause is when the women’s body stops producing estrogen. Well, my body will stop producing testosterone so that makes sense. However, I already suffer some of these side-effects without the hormone treatment! Have you seen me lately? ;->
Through my years of teaching I have taken great pride in having an understanding and open ear for my students. Because of my many life experiences I could understand what many of these “kids” were going through and was able to offer understanding and someone to talk to that would not judge. Last time I tried to explain how I am learning what it means to be going through this cancer journey. Well, this week I see that maybe I will understand what women go through a lot more than I have. Of course I will not understand everything, but I will have a lot better sympathetic. It seems to me, at this point in time, this is why I am on this journey. I am gaining more experiences so that I can have a better appreciation of what people are going through and be able to offer an empathetic ear.
Until next time
December 19, 2012
Feeling very depressed today. A friend and fellow teacher at Woodbury Junior/Senior High School has passed on today. She was a wonderful teacher, friend and person. She found out that she had cancer this past June and succumbed to the disease in six months. This is the fourth friend that has died of cancer in the past six months. And, I cannot tell you of all the friends and family of friends that I have heard either had or has cancer also. This all brings a few things to my mind.
The first is that it frightens me. I can’t help but ask, “am I moving quickly enough on my cancer?” I know prostrate cancer is a slow growing cancer but my PSA went up very quickly. Could I have a quick growing type? I know the doctors all say that I am going to be alright. And I do believe that. BUT… that fear is still in me. Am I the next to go? I know… I know, this is ridicules to feel this way, but I just can’t seem to help it. I do have a strong faith, born of a life time of rough times. And I do trust that I will come through this alright. But that voice is still there, “You have cancer!” And of course we all know “Cancer Equals Death!” At least that is what is drummed into our heads in our society. I don’t want to believe that. I want to believe that I will be alright. But, that fear still lifts its ugly voice in my head.
Now on the brighter side… I have been told by two friends these past two weeks that, after their battle with prostrate cancer, they have been declared cancer free. That is great news. One of these friends had surgery and the other is going the route that I am going.
So, yes I know that I am going to be alright. But, that does not negate the fear that I am feeling. Again, not to sound rude, I really don’t think that you can understand that unless you have had cancer. I know I didn’t. And that is why I am writing this.
Until next time.
December 24, 2012
Well, here it is Christmas Eve. My thoughts are on the child whose birth we celebrate, the few gifts that I bought to give, not too many this year, Paula did all the shopping, and going to Bridget and Mikes to enjoy an evening with them and most of all Lexie. But still that ugly reminder of the cancer keeps coming to mind. I’m thinking about all the friends that lost the battle, those who are still fighting the battle and those who have won the battle.
Now you might be saying, “WOW, what a downer!” But, not really. Sure I miss those friends that have lost the battle with cancer as well as those others that have lost other battles. However, I am encouraged and given great joy by those who are gallantly fighting the battle now and those who have won! I am grateful for all of these friends. I am also thankful for all the friends and people I have just met who have been so encouraging to me and holding Paula and me up in prayer. Nevertheless, I think that I am most appreciative of my family. Bridget and Mike are both always there for me. Bridget is looking out making sure that I am doing the right things, doing her Social Worker thing with me! Mike is encouraging, egging me along when I am down. Then of course there is Lexie. That little girl has super powers. When you are down and not feeling good, just seeing that face perks you up and you feel so much better. Last but far from least is my wonderful wife Paula. From the time I got home telling her that I had cancer, all through this LONG first month, she has been there. She has said she wants to be there every step and appointment along the way. She has listened to me, held me, took my abuse (not aimed at her), yelled at me, and generally pushed me along. She even stayed up all night looking out for me when I was STUPID and drank a whole bottle of Scotch. So yes the cancer is a terrible thing, but there is so much more good that is coming out of it. And if you have been following this blog you can see what I am saying.
Therefore, with this being Christmas eve, I would like to just say that I am grateful for each and every one of you and I cherish your friendship and prayers. I also want to wish you all a Merry Christmas. Enjoy it with your family and friends.
Until next time
January 4, 2013
A New Year
Well, here it is 2:00 in the morning and can’t sleep. Therefore I think that I will bring this up-to-date. Last Friday, December, 28, 2012, I went to Dr. Orth for the first hormone shot. Even though I have done all of the reading and have a pretty good idea about what was going on, I still did not really know what to expect. Consequently, I had some questions for Dr. Orth. When he entered the exam room he greeted me asking me how I was doing. I said I was making it. But, then he did something that I have not had anyone ask me. He pointed to his temple and asked “how are you doing up here?” This caught me off guard and I replied, “I’m working on it. It is rough but it is coming along.” And I quickly added “I know I’m going to be alright!” His reply was “Good! This is something that is rough to take.”
As he was preparing the injection I said I have some questions. He told me he will answer the best he can. My first was, since I know all the bad side effects of the hormone treatments, is there any good ones such as having to shave less. He let out a big laugh and said, “Yah I hate shaving also. Yes in time you will have to shave less but not right away.”
Next I asked about nutrition helping with cancer treatments. His reply was that he did not know much about the nutritional end of cancer treatment but felt that it must help. He cited a few cultural studies of nutritional effects on cancer and said, “Look, there is no money that can be made by the big drug companies in studying nutrition. I mean they can’t charge you big money for an apple so they are not going to be doing big studies on it.” That makes a lot of sense to me. The way things are now, the government will not fund any studies unless someone is making money on it. Dr. Orth ended this conversation with, “But, you probably know more about this nutrition then me because you are reading the book on it. You are doing well reading ligament books and web sites on this.”
My last question for the day was, since him and Dr. Hirsh both said that they did not feel any roughness or tumors with my prostrate, does that mean the whole prostrate is filled with cancer? Dr. Orth’s answer was, “No. Since only four of the 12 samples showed cancer, that means that we caught it early. Even though it is in the mid range on the Gleason scale it is still early.” That was something that was good to hear.
At that point I dropped my pants and took the shot in the end. As Dr. Orth left the room he said, “I will see you at the end of the radiation treatment.” That will be in about six months and I only get these shots every six months. I left the office thinking that I will kind of miss seeing him because he seems to be the only one that really understands what I am going through. Asking about my emotional state does not seem to be something that is utmost in the minds of most doctors or even the best intentioned friend. A friend of mine just told me that her mother has stage one cancer. I told her; “Hug her a lot and don’t stop!!! Let her talk. Let her cry. Let her curse! And then hold her more telling her that you love her. Don’t tell her she is going to be alright. She knows that! She needs to feel your love, and to know that you will be there always for her!” I might be over stepping some and projecting on to others, but I think that is what most cancer patients need. We know that we are going to be alright. Most of us will beat this. So, don’t tell us that we will be alright, that this is curable. Don’t tell us to suck it up, even in nice ways. We are sucking it up but we have to release sometimes. Please feel flattered that we do look to you to talk, to cry, to shout and curse. And yes even when we are nasty to you and say things that hurt, be flattered that we feel that we can depend on you in such a way and know that you will forgive us. Hug us and hold us and never let go. Make sure that we feel your love for us and that you will always be there for us when we need you. Keep reinforcing this because those feelings are fleeting. In a moment that feeling of love and security can be gone and we are back to feeling alone and abandoned. And I don’t care how strong a person’s faith is, we still need that reinforcement a lot. Do you want to help someone beat cancer? Your arms and ears are you greatest tools. Even if the battle is lost for some, of whom I still greave, hugging and listening will make the battle go easier.
As I close I would like to welcome all of you to 2013. I am glad to see 2012 go because it has not been the best of years. However, I know 2013 will be a better year because that will be the year that I beat cancer. YES, I WILL BE ALRIGHT!!!
Until next time.
January 8, 2013
Is It The Cancer?
Because of various problems around here I am at a stand-still for now. Therefore, I thought that I might do some writing today.
As I said before I am learning all sorts of things right now. As I tell people who ask how I am doing, I am on hormone treatments right now. No, I am not taking female hormones; the treatment that I am on is a hormone that blocks the production of testosterone, which feeds the prostrate cancer. Therefore, there are some changes taking place in my body. These changes are akin to the changes that take place in women when they enter menopause. In menopause, the woman’s body stops producing estrogen. Consequently, many women will experience “hot flashes,” loss of muscle tone, muscle replaced by fat (oops too late for that already! Already fat!), loss of bone density, etc… I don’t think I need to go on about that, most of you ladies already know about it either first hand or from family. Well, I am experiencing the same thing along with some male related issues. But, you know something? I can live with all of that as long as it is beating the cancer. I also have to add here, God bless my wonderful wife, who has to sit there and watch me go through all of this, be the brunt of my emotional outbursts and is still ready with a hand-hold and a hug. When I get through this she will be the biggest reason why I beat this cancer!
Now I mentioned the emotions. By nature I am an emotional person but I have learned to hold them in until I am alone or I release them while I am playing music. After all I am an artist. Well, that has not been so lately. My emotions are on the surface and I can’t seem to control them as well. Whereas, they are not focused at Paula, she is still there many times when they are released now. I ask her all the time to forgive me. She is the last person I would want to hurt. However, it just seems like I can’t control them sometimes.
That brings me to my next point today. A friend, while a group of us were talking about what is learned having cancer, said; “… every little thing that happens you wonder ‘is it because of the cancer.’ Every little cough, every little sniffle, every little ache and pain. You wonder if it is the cancer.” She was so right! I have a headache, is it because of the cancer? I have the stomach bug, is it because of the cancer? My joints hurt, is it because of the cancer? We have a major plumbing issue in the house, is it because of the cancer? I think you get my point. Whereas the cancer seems to aspirate these everyday issues, the cancer did not cause them. Where my emotions are telling me that it is all because of the cancer, my rational mind is slapping me on the back of the head Gibbs style telling me to get some perspective. I think, maybe, that the worst part of the cancer at this point for me is the emotions. The negative emotions are the strongest and are always there and the positive emotions, as I said last time, are fleeting. I am very fortunate in that I have family and friends that keep reminding of their love and care for me. Especially, my wife, Paula is always there holding my hand. Maybe, that is the greatest weapon any cancer warrior can have in the battle against cancer, family and friends reminding him or her of their love for them.
Just a few thoughts.
Until next time
January 19, 2013
As I look at the dates I notice that it has been a while since I wrote. There have been many things running through my mind over the past eleven days but I have just been busy with everyday things. I finished the round of the hormone suppresser Biclutamide on Tuesday and was hoping that I would feel a little more like my old self. However, I am still having the hot flashes, headaches, sleepless nights, high emotions, and my stamina is not what it use to be. But, billions of women and many men have gone through the same things and have come out alright, and in the long run it will make me better, so I have no real room to complain.
There is something that I am very grateful for and touched about. I have been told by so many people that they are praying for me. They say I am in their thoughts and prayers. Even friends who are not believers have told me that I am in their thoughts. As I said I am so touched with this and it has caused me to do some “out of box” thinking.
As many of you know, I am a “Born Again Christian.” I know that is an old term and many times brings up negative connotations, but I am not the type that will push my beliefs on others or tell everybody they are going to hell unless they believe as I do. No that is not my “job.” I have no room to judge anyone. From my understanding of the Bible, I am not to judge anyone that is God’s job. My job is to live a life as close to what Christ would have lived as I can. In other words I try to Walk the Walk and not talk it! Do I mess up? Of course I do! But from my reading of the Bible I also have forgiveness when I ask for it. And it is up to me to try to do the best that I can in this walk. So, I also ask you that if I have messed-up with you somewhere along the line, please to also forgive me. As the saying goes: “God is not done with me yet!”
With that out of the way I would like to get to the point that I was thinking about. At the Christian School that I am teaching at one day per week, I was teaching a Bible lesson from the Book of James; “For where jealousy and selfish ambition exist, there is disorder and every evil thing.” (James 3:16 NASV). As I am teaching the lesson I started thinking about the people who say they are praying for or thinking of me. In our society we tend to be thinking of ourselves most of the time. It is something that is seen in the media where someone asks for something and the answer is: “what’s in it for me?” In fact we have a generation in our society that is called “The Me Generation.” Our society seems to be infested with “jealousy and selfish ambition…” as well as “disorder and every evil thing.” Now, I know that you are thinking that this is a very gloomy outlook. Well, just hold on, I’m getting to my point. It accrued to me that when you are praying for someone or thinking of them, you are not thinking of yourself. WARNING! WARNING! What I am going to say next is just my observations and opinions. When you are thinking of only yourself and what you can get out of something you are slowly killing your own spirit or life-force. And as that spirit slowly dies it takes with it your physical body. We have all heard the stories and known people who were very selfish who were shriveled up in spirit and body. However, when you stop thinking of only of yourself there seem to be a force that seeps into your spirit and body. It seems to pick you up and renews you. To me this is God telling you that you are now doing what God wants you to do. Remember what Jesus said that you are to love your neighbor as yourself? There are so many places in the Bible that tells you that you should be caring for others more than yourself. I once heard a preacher say that when you pray for someone to be healed, there is always a healing taking place. Maybe the person you are praying for doesn’t always get healed but with you praying for them (or can I add, thinking of them) there is a healing taking place in you. I thought that I understood it then, but, now I think I understand that better.
So, I will now bring this little “sermon” to an end, I hope that I have not offended anyone, but these are some of the thoughts I have been having. If you are keeping Paula and me in your thoughts and prayers, please continue. You are helping us but don’t stop there. There are so many other people who also need your prayers and thoughts. And you know what? If you continue, before long you will be feeling better and doing as was said before, loving you neighbor as yourself.
By the way… you are in my thoughts and prayers also!
Until next time.
January 28, 2013
It seems that I just posted on here not long ago but as I look at the dates it has been nine days. Time does fly.
So, how am I doing? Well, not much change from last time. However, the side effects of the hormone treatments are getting stronger. You know when I was growing up and as a young man I heard many older women complain about the “Change Of Life” and the hot flashes, headaches, sleeplessness, emotions, etc… I would think to myself… “How bad could it be? You are still doing what you want to do?” As I got older I became more sympathetic as I saw more women my age going through menopause. I also started to understand more of what changes were taking place in a woman’s body. BUT, I really never truly understood because I never could or would ever experience it. WARNING!!! WARNING!!! The following is from my observation and opinions. From what I understand, men are not as attuned to changes in their bodies as women are. The testosterone mainly prepares men’s bodies for hunting, fighting, and sex, with manual labor to give them something else to do. They don’t have the drastic changes to their bodies that women have. Therefore women are, can I say, prepared for changes in their bodies all their lives. So, you see, I never expected that I would be experiencing the symptoms of menopause. Whereas I have always tried to understand what other people experience, I now understand this a lot better. When we talk about hot flashes, it is not just getting a little warm. The sweat flows and it is like you are burning up from the inside. And as it builds it seems like everything is drained from you. In order to move it takes pure force of will. The headaches, if not active pain, are right on the edge; ready to blow you head apart. Whereas I was not a great sleeper before, now, even with a sleeping pill, I am awake most of the night. Then we really don’t want to go on about the emotions. They pop out as anger, or depression at anytime without warning. Well, now I will not go on because you get the idea. In fact it has popped into my mind that since I am trying to get rid of the testosterone since the cancer feeds on it, I might ask the doctor for some estrogen so that some of these side effects could be reduced. ;-> So what am I trying to say here? It is this… ladies please forgive me for my past ignorance, as well as the rest of the male population. There is no way to understand it unless you lived it. I now have a much greater respect and understanding of you and what is going on in your bodies.
There has been another thing on my mind over the past few days. As I look into the mirror now I am seeing someone who is getting old. It’s funny I don’t feel old in my mind. Although when I try to move or do things I have done all my life, my body is telling me that I am not as young as my mind tell me. Where did the time go? It seems just like a few years ago that I graduated from the then new Deptford Township High School. Now I go by the school and it looks so different. It seems like it was just not too long ago that I was picking a couple hundred pounds like it was nothing! Now if I look at something 50 pounds I start thinking how can I move it without picking it up! Because I can’t pick it up! And you know, if it was not for the hormone treatments I would not even notice anything from the cancer. So what happened to me? When did I get so old? I know I’m not as old as some of my friends, but I am having a hard time understanding how I got into my 60s. What happened to the 30s, 40s, and 50s? Time does fly!!!
Until next time
January 29, 2013
I just thought that I need to clarify something about the posting for the 28th. The generalization that I made about menopause is just that a generalization and not all women suffer the same symptoms and just like everything else everybody is different. Not all men go through what I am feeling on hormone therapy either. I have just been blessed. Also yes I can still pick up 50 pounds and even more but it is not as easy as in the past. I was just trying to make a point. But, I still look for other ways of moving heavy things now instead of just picking them up! ;->
February 5, 2013
Let’s see… How am I doing? Well, I guess that I’m alright. I have my good times and bad times. I am suffering from many of the side effects of the hormone treatment, such as: hot flashes, swinging emotions, headaches, lack of sleep, and fatigue. One of the most frustrating is the memory. I am forgetting names and words I want to use while I am talking. Now I really don’t know if that is because of the treatments or just because I have so many things on my mind. It seems that I start to think out one thing and before I know it I am thinking about something else. I guess that I am having problems with concentration because of all the things that are happening now. But, like everything else, I will get through this also.
There have been a few wonderful things that have happened this past week. First I was contacted by Joyce Woodrow, a teacher that I have taught with for years, asking if we could meet for lunch with our spouses. She said she had something for me. We met on Friday at a local restaurant and she gave me a gift bag. When I opened it, it was a prayer quilt. It was created by the Prayers & Squares Prayer Quilt Ministry of the First Presbyterian Church in Woodbury Heights, through the request of Joyce Woodrow. The way this works is that there is yarn inserted in the quilt and everyone that ties a knot in the yarn says a prayer for me. WHAT A GREAT GIFT!!! I have written before about the importance and power of Prayer so you will understand why I think that this is such a great gift. Thank you Joyce, The Prayers & Squares and the members of First Presbyterian for your expression of Love.
The second thing that has been wonderful is that my wife Paula, seeing how much pain and discomfort I have been in, has stated to give me back massages. I have not asked her for it she has just been doing it. This is something that really has made me feel better and even put me to sleep. I think that this is so wonderful because, first, even after all these years together I prize and am thrilled by her touch. Second, she is expressing her love for me in a deep and personal way. I have a friend who says that a good massage is better than a great meal. How true!
Now, why am I bringing these two things up? That is easy… They are expressions of Love and Caring. My friends, it does not matter if you are healthy or in ill-health, we all need to have expressions of Love made toward us, as well as each one of us making those expressions toward others. We are social creatures. Yes, I have heard of hermits, and I even want to be away from people many times, but we still need to have human contact. As a person with cancer, I have found that the expressions of Love and Concern seem to mean so much more to me now. I also found that I also need to express my Concern and Love more. Why is that? I have written about this before, it is because I am afraid. Yes, yes, I know I will be alright. But, still that fear of the cancer is underneath every thought, worming its way into my every thoughts. With the receiving and expressing of Love and Caring it knocks that fear back so that it is not at the forefront of my thoughts.
Therefore in closing this entry, I would just like to thank you for your expressions of Love and Caring. And when I do hear of your concerns I do try to remember you in prayer.
Until next time
February 11, 2013
The last couple of days have been rough. Because of these weather fronts coming through so fast, my arthritis is really acting up. That has caused me to pop pain pills that I really don’t like to take. That has nothing to do with the cancer, but when you couple that with the side-effects of the hormone treatment it does not help. So, arthritis pain, hot flashes, headache, sleeplessness (about one hour over the whole last night) and then depression. I stood for a half hour this morning in the shower with the water as hot as I could stand, with it beating on my head and back. That helped some but the pain and everything else is still there. Here it is 10:30 in the morning and I am still in my night clothes. I might get dressed later but I really don’t know. All of you out there, especially you Ladies, that go through this like it is nothing, I admire you. I wish I was as strong as you.
Okay, let’s talk about depression today. Depression is that feeling inside of you, true or false, of not being good enough. It can also be described as a feeling, again true or false, of not being accepted or loved. Depression is truly irrational and you really cannot rationalize someone out of depression because it is illogical. Many people say that if you have Faith in God you will not be depressed. To me these statements are made by people who really don’t care about you or who have never been depressed. I am a person of faith. I have also battled with depression all my life. As I think back to many of the times that depression has reared its ugly head it was due to surgeries, or because of something tragic that has happed in my life. I remember when I had my knees replaced. I spent a lot of time crying my eyes out due to depression. Nobody told me to expect that! And, you know something? As I look back at the times I was depressed I get depressed again. So, let us not discuss those times, let us talk about now.
Having cancer is very depressing, and having the hormone treatments is also depressing. So, right now I am getting a double whammy. As a result, what am I doing to combat this? Well, I do a lot of sitting in silence, thinking and praying. I try to keep myself busy. My wonderful wife Paula keeps reinforcing her love for me (and I for her). However, I think that the biggest help is writing this blog. Getting my feelings out and trying to explain them does a lot in letting me see them for what they are. After I am done writing this, I sit and read it through a few time (believe it not!). I see things that I want to add, I also see things that I take out. As I post this I enjoy seeing peoples’ responses, and I want to encourage it more. This blog is not meant to be just something to help me but I want it to help others. I would love to hear (read) the stories that others have to tell. That is the wonderful thing about Facebook, it is so easy to add comments. I would like to see this blog go farther than it is now. I was thinking of adding interviews from other people who have had cancer. I have said it before and I will say it again, everybody’s experience is different.
So, please respond to this and share you experiences and thoughts. Let us all help each other.
Until next time
February 20, 2013
Age is Arbitrary
I keep getting asked by everybody how I am doing? My stock answer now has become: “…Menopause is hell!” Then I get this evil laugh from the women. Men just look at me with a weird look, like: “what are you talking about?” Well, at least I am making a little more than half of the population laugh!
Any way… how am I really doing? I am feeling old. Yah, I know, like the title to this edition says, “Age Is Arbitrary.” As I think back over my life I find that to be very true. Back in 1951 when I was born, I weighed in at 12 pounds and started growing fast. They brought me home in the clothes of a one year old. I always looked older than I was so when I did not do things that people thought I should be able to do they were not impresses with my abilities. I always hung around with people much older than me and was thought of as being that age. In fact, I remember being twelve years-old and going to see my grandmother in a nursing home and a nurse’s aide made a pass at me thinking I was about 18! That was good for the ego but… Now this did come in handy when I started to play music in clubs (read that as dives!). Because I looked older, nobody questioned this high-schooler as he walked in to the place carrying an instrument.
Most of my life because of my appearance I was accepted as a peer by the older people I have hung around with. I tended to enjoy them and learned much from everyone I have met. But, somewhere along the way my temporal age and appearance age started to get closer together. Now I am told by many people that I do not look like I am in my sixties. Not that the sixties are all that old, but I really can’t believe that I am in my sixties either. Where did the time go? I remember when I began this cancer journey, Dr. Orth and I were talking and one thing he said kind of made me laugh. He said that my prostrate is older than the rest of me. WHAT??? Here we go again Age is Arbitrary! I have arthritis, had both knees replace, wear progressive eye glasses, hearing not as good as it use to be, type 2 diabetes and now prostrate cancer!!! And people say that I don’t look that old, and the numbers say that I am not all that old. However, when I look into the mirror each morning I see an old man looking back at me. Where did he come from?
I guess since I was told that I have cancer I have been examining my life a lot more deeply. I thought, when I retired, that I could slow down a little and get more time to do things that I always wanted to do. Well, you know something? I have slowed down…a lot more than I wanted to do. I need to get some of my energy and desire to do back. Over the next three or so months, as I go through the radiation treatments I am going to need all the energy that I can get, without drugs! So, keep me in your prayers and I will spend a lot of time praying for you and all those that I meet.
Until next time
February 26, 2013
Okay… I entered the next phase of my cancer treatment yesterday. I had three 18k gold markers implanted in my prostrate. But this did not go off without some hitches. On Sunday afternoon, as I pulled out the instruction sheet out for the preparations needed for this procedure, I read that I was suppose to take antibiotics on Sunday, Monday and Tuesday. However, I didn’t have the antibiotics!!! I was not given a prescription for them, nor was a prescription called in. This, needless to say, upset me but really upset Paula who was already very sick. Emotionally, getting myself ready for this procedure all week had put me in a pretty deep funk but this development really kicked the depression into high gear, and I went really deep. Well, Monday morning I had to go over to the High School to set up the auditorium so I left there and went right to the Doctor’s office and got there about 8:30. Well, before they were suppose to open. They asked me what the problem was and I explained it to the intake receptionist. She asked me to wait a minute and in a few minutes she came back with three antibiotics and told me how to take them and said that they would see me back at 1:30! Good think that I hadn’t eaten since 8:30 Sunday night. The only other hitch was that Paula had to drive me, I don’t know why, but we also had to take Lexi with us. She was such an angel!!! She can brighten up the worst of situations!
Alright… 1:30 came and I was called into the back exam rooms. They then said to take off my pants and underwear. Well, since I have now lost almost, if not all, modesty I did and got on the table. Now, I am not going to go into details about what took place now. However, just let it be said that it was not fun and would not want to do it again.
Let me stop here and talk about what these markers are for. As I go through radiation treatments, my prostrate will be changing its size. These markers are reference guides so that they may be able to track the changes. They are place in a triangle formation so that as they do the treatments they can tell how much the prostrate changes and in what directions. Now the only problems with this are, first I am very tender right now and having to go to the bathroom a lot!!! Second, Paula is up-set about it because when she had the markers placed in her breast, they were titanium and mine are gold. Lastly, she is now wondering how much she can get for me at these “We Buy Gold” places!!! ;-> No, not really.
Since I had not eaten since 8:30 Sunday night, my sugar was very low, I had a headache, I felt very weak, and I was very hungry. Now, another problem arose. I was so hungry that between 2:00 and 5:00, I ate enough food for the whole day and my stomach was not feeling too good! That is why you should not skip meals when you want to lose weight!!!
Therefore, the next steps will come on Friday, March 8th, when I report to South Jersey Radiology at 7:40 in the morning for a CT Scan and then back to Delaware Valley Urology Radiation Oncology office in Cherry Hill at 9:00 for the setting up of the machine and my Tattoos. Never thought I would get any tattoos! Heck, never thought I would have cancer or go through menopause either!!! You know… I am an advocate that we should all be learning every day and every way. I also believe you can learn something for everybody. As a teacher I always believed that I also learned from my students. And that the students not only learn from their teachers but also from the office staff and maintenance/custodial staff. For that reason I can really say that I am learning a lot. As a friend would say to me when I was learning new programs, my learning curve is very high. Well, if you look at my learning curve now it would look like Mount Everest.
Until next time, when I will probably have tattoos,
March 10, 2013
The last time I wrote I told you about the markers being placed in my prostrate. As of Friday March 8th I am also marked externally. Yes I received my tattoos. I never thought that I would be tattooed but here I am with three of them. It was kind of funny to me that after the tech did the first one on my left side and was moving to my belly the pain of the first one hit and I yelled “Yo, that hurt!!! It took a while for the pain to reach my brain and by that time she had the one on the belly done. The one on my belly and my right side I didn’t really feel. But that first one was a delayed doozy!!!
Through the whole morning of Friday between South Jersey Radiology and Delaware Valley Urology Cancer Treatment Center, I spent about three hours in “The Tunnels.” And during that whole time Paula waited for me in the waiting rooms. She said that she was able to talk to other wives that were there with their husbands. Some were coming near the end of their treatments (44 treatments plus a consultation) and others were just starting. Paula said that she was touched by one woman whose husband was in his seventh week of treatment, the wife said that she has been there for each treatment and she added “…we are a team!” Paula wants to do that also but because of me working one day per week she will not be able to do that. But, she says she will be with me as much as possible. I do love that woman!!! I am so happy that she agreed to marry me!!! I think that that was the best idea I ever had!!!
Now, don’t think that the whole thing was fun. It was not!!! As I said it was about a total of three hours in the “tunnels” of two machines, one for MRI and the Other CT Scan. Because of the weather my arthritis was kicking me hard, and I had to lay still with my arms high on my chest. Needless to say I was having a lot of pain and when I could get up I did not move well. Also, all of this brought the cancer forward in my mind and lying there all that time, I entered the darkness of my depressions and anger. I spent a lot of time the rest of that day crying. I tried to keep myself busy, but I still spent a lot of time crying. That night I did not sleep well and when I did sleep I had dreams that I never want again. I can’t remember details but I do remember waking up crying. The depression is slowly (too slowly) easing up some, but I know if it was not for my faith in God and the love of Paula, Bridget and Lexi… Well, I don’t know but I do know it would not be nice.
I was at Church today and was overwhelmed with people hugging me and so many saying that they are praying for me. I am so grateful for all of these signs of love. However, I was totally floored when some of the ladies stopped me and took me over to the prayer quilt that was there and told me that it was for me. There were people around it tying knots with prayers and one person even tied a bow and I laughed saying that it would be suitable for my hair!!! ;-> All of this means so much to me. I have talked about my belief in prayer and how important it is for the person being prayed for as well as the person doing the praying. Let me say this again and be clear with it… I WILL BE ALRIGHT!!! I WILL BEAT THIS CANCER!!! GOD WILL HEAL ME USING THE DOCTORS AND OTHER MEANS. My problem right now is in my head and getting past all of this baggage that I have. And getting past my anger! But with God’s help, the prayers of so many people and the love of my wonderful wife, this too will be conquered!
So until next time…. (Maybe I will talk about my anger next time,)
Wednesday, March 20, 2013
And So It Begins!
Happy first day of spring. Things are beginning and ending all the time. I have been a little busy since I last wrote. Last Thursday, Friday and Saturday Woodbury High School put on the musical “Hairspray.” The kids did a wonderful job and really got into it. As to my part, I was Technical Director (light and sound design and heading up the tech crew) and I played in the pit. The crew that I had in the booth was great plus the assistant director was back there during the shows. However, playing in the pit took a lot out of me. Being an up-right bass player takes a lot of work with your hands and since I was given the music for the electric bass there were a lot of modifications I had to make to the music. I ended up with three blisters, one on top of the other, on my index finger and now a lot of calluses. Also standing through the whole performances and rehearsals did not help my back and legs. Needless to say I have been in a lot of pain. But the kids did a wonderful job and the house was full for all four performances. I’m very proud of the Woodbury drama kids.
Okay, let’s get down to treatment. Monday, I had a dry run in the machine. It all went well and took about fifteen minutes. I got there real early because I thought it would take longer to get to the treatment center, but when I got there they took me right in and walked me through everything. From what they said, from that point on all I have to do is show up, the receptionist checks me in and I go right back and get ready. No waiting in the waiting room. And now I start my forty-four treatments today. The only problem that I see is that I have to drink sixteen oz. of water one hour before my treatment and hold it until it is done. That has been a problem for me lately. At this point, I KNOW most of the bathrooms and lavatories around! :-/ Hopefully as the treatment continues I will find that this will not be so much of a problem. Last time I said that I would be discussing anger. All my life I have dealt with anger issues. I don’t really want to get into what they were at this point but know that through a lot of prayer and introspection, I dealt with most of that anger, finally, almost thirty years ago. That is when my life seemed to change and I met my wonderful wife, Paula. Was life easier? Well, in a way because I had Paula to share it with. But, we still had a lot of problems and my anger would flare from time to time. As Paula can tell you, I get very vocal when I am by myself in the house or car and vent my anger then. That is the way I usually hander my anger along with a lot of prayer. That is until recently.
Let me back up a little and give you a little back ground. In 1986 I was diagnosed with high blood pressure. Not a big thing, a lot of people have it. Then in 2003 I was diagnosed with diabetes. Okay, I controlled it with diet for years and then went on medication. I have arthritis though out my body and as you can see, I am not skinny. However, I have great Cholesterol! High, highs and low, lows. I was handling all of this well, I would get frustrated with not being able to do the things I know how to do, but nothing tragic. That was until I was told that I had prostrate cancer! My anger is back full force!!! I will blow up on the smallest thing. And it is like I am watching someone else wondering what am I being so crazy about? At the same time all of my old resentments are coming back. That makes my anger even more intense.
So, what am I doing about that anger? Well, first off I am recognizing it and talking and writing about it. That is a first step. I am also praying about it. As I have said many times you don’t have to be kneeling down with hands folded and eyes closed to pray. I find myself praying a lot during the day for forgiveness and for help. Those are the two big things to help with this anger. It is not happening right away but I know that it will in the long run. If any of you have more suggestions, I am more than willing to hear them.
I have got to add before I close that I really do appreciate the multitudes of love expressions that I have received. They do mean so much to me. Some of you respond to these blogs and that also means so much. Lastly, I really don’t think I could go through all of this if it were not for Paula, Bridget, Lexi, Mike, and all of my friends. You keep me pushing and don’t let me give up! You are all special to me. One last thing before I close… People say that God does not give you any more than you can handle. I just wish that he did not have such a high opinion of me! :->
Until next time
Wednesday,March 27, 2013
It Has Started!
Well, it has started! I have had five radiology treatments and one run through. I have thirty-nine more treatments left. These treatments are kind of interesting. When I arrive at the treatment center, about seventeen mile from home, I come in and wave to the receptionist who know my name (that checks me in) and just walk in to the changing area and change into my sweats. The other men I meet there are all there for the same reason. As one man said when I asked how he is doing, “the same as you!” It is fascinating observing the different men there. Some look more scared than me and others look so cool that you would never know anything is wrong. One gentleman that I was talking to was transferred into this area five years ago from Louisiana. He seems a lot more up-set than I am and is up-at-arms over every small side effect. There is another man who is from Williamstown area, about 14 miles from Woodbury, who when you look at him and watch his actions, it is like nothing unusual is happening. When asked how long he has got to go, his answer is: “Oh, I don’t know. I’m about half way through.” I also met another man who was very up-set with his family Doctor. His family Doctor never let him know that his PSA numbers went up, let alone let him know what the numbers were. The doctor’s office just kept saying it was alright! He ended up going to an Urologist on his own because things just did not seem right. Come to find out the Urologist found cancer in six of the twelve samples taken of his prostrate.
The point that I am trying to make is that each man has his own story, fears, angers and “joys.” I would also venture to say that it is the same for all people affected with cancer. I still have my fears, and I am still dealing with my anger, as I said last time, and yes I do have my joys. Just yesterday, after a long and rough day, I came home late and there was a card in the mail from a member of our Church choir telling me that she was thinking of me. Earlier this week, while I was eating lunch, I received a call from a friend here in town, telling me that she was thinking of me and wanted to hear my voice. This past Sunday at the end of Church, some of the members of the Church were asking me how I am doing because of the hot flashes and other side-effects I cannot sit through the whole service, so I go up into the Music Library and listen to the rest of the service where it is cool. As I was talking I made a light joke about it costing a lot in gas to get to my treatments. Well, the next thing in know is that one person is slipping $10.00 into my hand and another is taking down my address to send me money. I tried to refuse but they walked away saying that is what family is for. I have also been told by the Pastors and members of at least five Churches in this area that they are lifting my name up in prayer regularly. What more can you ask for.
Now, I don’t know it any of the other men have experienced these same “joys” or not. All I do know it that each incident means so much to me. Add to that the e-mails that I have received from our daughter, Bridget, the hugs from our granddaughter Lexi, the encouragement from our son-in-law and most of all the things that my wonderful wife has done for me (including the back massages, which are great!), are all stored in my heart and I look back at them all the time. Do I still have fears and anger? Yes! Do I still have depression? Well, yes since it is a side-effect of the hormone treatment and my natural inclination. However, with all the signs of love that have been shown to me, it makes the fear, anger and depression easier to handle. I guess it is a lot like what some people have said to me, “… if you have to get cancer this is the way to get it!” I KNOW that I will beat this cancer into the ground! I have a lot more things that need to be done! And with the love that has been shown me I know I will get them done!!!
Until next time
Friday, April 5, 2013
I am going to start off with a warning this time; this will not be a happy entry. I fell asleep last night in bed for the first time in a few day because Paula had the flu, and at one point fell and sprained her ankle. So I let her have the bed the whole night and slept, if that is what you want to call it, on the couch. Now, I normally end up out on the couch because I cannot lay in one place for long. So usually sometime between Midnight and 5:00 a.m. I end up out on the couch. But I digress… Last night a dream woke me up about an hour after I fell asleep. Well, again I generally have strange dreams anyway but this one really frightened me. Don’t ask me what it was about because I just can’t remember but I was terrified! So all through the rest of the night I was on the couch with really strange dreams when I did fall off. That is between trips to the bathroom.
Again I keep digressing… Well, when I did get up my head was splitting, I was so very tired, my legs hurt, and I was very depressed. I took a HOT shower, sat and dozed for a few more hours while watching the news, ate my breakfast, and got some work done. I didn’t even get out of my night clothes until about 1:00 and that was because I had my treatments to go to.
SO! What am I depressed about. Well, one thing is that yesterday I found out that I will be losing one of the jobs I enjoy doing so much. Webmaster of Woodbury School District. They want to do more with the web site and in order to do that they would need someone full time. Therefore, they are going to contract it out to one of these big web services. I understand and from what was said it would be too much for me alone to take care of. So with the new school year that will be gone. Secondly, the teachers at Woodbury High School have put together this Couch To 5k run to raise money for cancer research. They are calling themselves “Team Jen” after Jennifer Jones who was a 6th grade teacher there for many years and died a few months ago from Colon Cancer. I was friends with Jen and thought she was a wonderful teacher who would do anything for her kids. I bought two of the “rubber” bracelets with “Team Jen” on them. That got me thinking of other friends that I have lost to cancer. Judy Bean, a teacher who beat cancer once and it came back. She sang in the Kemble Choir with me. Dan Miller, a teacher, sang next to me in the Kemble Choir and kept me on my note all the time. Helen Gatton, again a teacher who beat Cancer once but then developed Alzheimer’s. She also sang in the Kemble Choir. Carol Fuller, another teacher who sang in the Kemble Choir. Her Husband Doug sang on the other side of me from Dan. Then of course there was our Choir Master/Director Ken Steele. Here again he was a teacher. He taught me so many things and always had an ear to hear you and listen to your pain and praise. Two weeks after finding out he had lung cancer he passed away. There was also many more that my addled brain just can’t remember the names of now. But I can remember each and every face. I am also thinking about many of my other friends who have beat cancer and are living testimonies.
I miss the ones who have not won the battle and have gone on, hopefully to a lot better place. So, if they are in a better place, why am I so depressed? The first think that jumps into my mind is that I HAVE CANCER! I know, I know, it is the most curable type of cancer, and if you are going to have to get cancer that is the type you should get. I know all of that, however, I still have cancer! And cancer kills! Believe me; I know I am going to be alright. But… I’m not going to go on about this. However, you get the picture. I guess the other thing is related to that. I am tired of the treatments and not feeling good. That thirty-three mile traffic filled round trip is no fun. The laying there on that table for twenty minutes while radiation is shot into me. The side-effects of the radiation and the hormones are taking their toll on me. And I get the distinct feeling that the two young doctors who I am suppose to consult with every week think that I am dumber than… well I will not go there. I could go on a real rant about that, in fact I just did and erased it! So I will not inflict you with it. Just to sum it all up, I think the reason I am so depressed right now is that I am tired. I am tired of many things. And this coming week does not look like it will let up much.
See that I warned you at the beginning this was not a happy entry. Maybe you should just skip it this time. Oh, wait, you already read it. Well, I did warn you. I will try to be more upbeat next time. Until next time… maybe I will be out of this funk!
Saturday April 6, 2013
A few interesting things happened since my last posting last night. First, yesterday I thought that it might have been one of my worst postings. I was really down and frustrated. Today I’m a little better but still down and frustrated. HOWEVER, the responses I got to the posting were the most I have gotten for one entry since I started posting. Please know that each one of your responses were wonderful and very meaningful. I really don’t think that I could make it through all of this without all of you who responded. And, excuse me while I make a little family comment, Bridget I love you very much and I was doing so well not breaking down and crying until I read your response. Well, you made me cry and maybe that is something I needed. It shocked your Mom and she didn’t know what to do when she was trying to talk to me and I was sobbing so deeply. Even in writing our “Super Social Worker” knows what to say and do!!!
Next, if you remember back a few postings I wrote about all the Churches and people that are praying for us? Well, today I went to the Bar Mitzvah of a friend’s son. Never been to one before and found it very interesting. We came to the part where various names were lifted up in prayer and Sharron Knauss, my “Sister” as everybody thought, added Paula’s and my names to that list that was being lifted up. So we not only have Churches lifting our names in prayer but also now a Synagogue. That is great because God hears all prayer.
Until next time – See I told you this one would be better!
Wednesday, April 17, 2013
What To Say?
I was going to write in this blog on this past Sunday but I did not get around to it. I was going to write on Monday, but the day flew by. And then there was the bombing in Boston! Tuesday I really did not know what to say after the bombing. Therefore, today I will try.
A former student of mine, who is in very poor health, said that he saw a woman he was in therapy with pass out and he went to say a prayer for her and he could not remember her name. He said that he was very embarrassed about that and felt really bad. As I read what he said the Bible verse from Romans 8:26 came to mind; "[ Our Victory in Christ ] In the same way the Spirit also helps our weakness; for we do not know how to pray as we should, but the Spirit Himself intercedes for us with groanings too deep for words;" In other words, God really does not listen to your words when you pray. He listens to your heart and mind. You really don’t need any words when you pray. If you can’t think of the words that you want to say just let your heart and spirit take over the prayer. God will understand!
Now, why do I bring this up? I have talked before about prayer and as I have said I am a big believer in it. (Please don’t sing that old Monkey song!) Monday a horrible thing happened in Boston. Some cowardly nut set off bombs that killed and maimed people who were there just for a race. It really hurts to think about this and I feel for those involved. I also praise the first responders and everyone who jumped in to help those injured. But, what can I do personally here in little ol’ Woodbury, NJ? I think the biggest thing I can do, or anyone can do is to pray for those people involved and their families. Some of you know people who were there, but, how effective will my prayers be with me not knowing any of the people involved. They can be very effective by letting God hear you heart and spirit. Sit quietly and let your heart and spirit speak to God
Now those of you of other faiths or those who do not believe at all don’t get off the hook. You can also do something that is positive. Open your mind and allow positive thoughts about Boston come and the people involved. I do believe there is power in thoughts also. So I am not leaving you out just because you do not believe as I do. Although everyone should believe as I do because I am right!!! ;-> NOT!!! I am right for me. You have to find your own way. But be positive with your thoughts because they do have power.
Okay, with that said, how am I doing through this journey? Well, I am not as depressed as I was before. Still have some depression but not as bad. I am tired and not sleeping well. Spending a lot of time in the bathroom, and I am having real bad hot flashes. The other night one hit me so bad I had to get up and walk around and then for no reason at all I started to cry. I don’t know why. I just started to cry. I was not overly depressed as before or anything. I guess it has to do with the hormones and the swing of emotions. Ladies, maybe you could explain it to me.
One last thing before I close, I received a real nice “thinking of you” card that was signed David. There was a note on the other side of the card saying how they are all thinking about me and to keep my faith up. It was then signed D. Butler and Staff. This old brain of mine has been radiated and bombarded with hormones so my memory is not what it once was. Dave Butler does sound familiar but I just cannot place him. The card had no return address but it had a Swell, NJ postmark. Is there anyone out there that can help me identify Dave Butler? I would really like to thank him and his staff. Oh the joys of this journey!!!
Until next time
Tuesday April 23, 2013
Good and Bad
It has been an interesting week filled with good, bad and neither. I seem to have entered a phase where I cry at the drop of a hat. Most of the times when I cry I don’t even know why I am crying. I am not overly sad or depressed. I’m not overly happy. I just start to cry. One time my wife was trying to talk to me and I started to cry. She looked at me and I just said I don’t know why! Then she said “hormones!” Well, Ladies… I guess I am understanding more even though I don’t understand it. I am understanding the feelings. I will tell you this… it is SO UNMANLY! But then again there have been so many changes to my body and besides I never worried about being unmanly before. I am who I am and that is all. To me a true man is honorable, trustworthy, truthful, considerate of others, and in short loves and treats other as he would want to be treated and loved. Come to think of that… that is a definition of a true woman also.
The next thing is that I have been really having problems with the side-effects of my treatments. Both hormonally, like the sort described above (add to that hot flashes real bad, emotions, depression, sleeplessness, etc…) as well from the radiation. I have reached a point where I am debating if I should run cable TV into the bathroom or place a hopper in the living room! My prostrate is really swollen because it is being irritated, and my colon is so irritated also. They have me on all sorts of medications to stop me from going and that it was not really working. Therefore, they gave me Friday off from treatment so that my colon could calm down some over the three day weekend. I was doing alright until I drank some whole milk on Saturday morning and ate some fruit at lunch on Saturday. That started me up again. I am on what they call a BRAT diet, Bananas, rice, potatoes, toast some meat and no vegetables at all. I really do miss my vegetables and fruit which I do enjoy. I am also drinking Soy Milk. Not too bad with a little sweetness. Come to find out, sweet Soy Milk has less sugar than regular whole milk. I guess that it will be better for me anyway. So to sum it up I am still in the bathroom a lot but not as much. Such a pleasant subject!
Alright, let’s talk about something that is a lot more pleasant. On Friday the 19th, I was tagged by a former student Dave Carl on Facebook. Some of you might have seen it: “Today, at my last WVU Relay for Life, I will be relaying for my mentor, and friend, James Krauss. Kraussie inspired me to follow the career path that I am on and, more importantly, always pushed me to be better in everything that I do. He was one of the best teachers I've ever had and is still, to this day, a great friend. I have no doubt in my mind that he will beat this disease, and I'm here to do my part in helping him do just that. Here's to you, Kraussie!” This was followed by a multitude of likes and comments. I called my wife over to read it also and we both sat there and cried (see the above comments). He then followed that up with a picture of his banner. I cannot tell you how honored I am by this and how touched I am. David, Rob and so many of the others have given me credit I don’t think I deserve because it was their talent and drive that carried them on. I was just there to listen to them and push them in the right direction when they got off course. But, this is what I think a teacher is. A teacher is not someone who makes you memorize a bunch of facts and dates. A teacher should be someone that will guide you in the right direction and listen to you when you need help. However, I digress into one of my pet peeves about education in this country. So I will not go there now. Therefore, let us just say that maybe I have achieved what I view as my mission with these former students. My students, past and present, mean a lot to me and I am so glad that I was able to help them some. It is also a great thing when your students move on to also be your friends. David, Rob, Mark etc… I said it before and I mean it, you honor me.
Until next time
Saturday, May 4, 2013
I am Angry!!!
I AM ANGRY!!! Who am I angry with? Myself!!! First off I am angry with myself for being so TIRED. I have never been so tired in my life. I keep wanting to do things around the house but when I get ready I am too tired to do anything. We have a service that is coming around to cut the grass, and my wonderful son-in-law came to clean up the yard some one day, which is more than I should ask him to do. But thanks to my neighbors’ gum trees my yard is still a mess with all the gumballs all over the place. I would love to get a garden going for my wife and granddaughter but there just is no energy left in me. After all of these years, learning how to do things for myself I now have the knowledge to do all the things needed to do around here but I just don’t have the physical ability. I really do hate to ask people to help because they all have things in their own lives they have to do. And I just don’t have the money to pay people to do things.
The next thing I am angry with is that I am losing control of my body. My balance has never been the greatest because of all of my ear problems (wonderful thing for a person who use to walk steel to say). However, lately my balance has been off. When I get up quickly or turn quickly I have to grab something to hold on to until I get my balance back. That is not a good feeling. Also I have lost a lot of control over my bowels and bladder. Luckily, I have not lost control of the bowels while I was away from the house, but it does not help knowing where every public lavatory is when I have lost control of my bladder to the point that I have to leave where I am and come home fast with wet pants. Dear Paula does not understand my embarrassment and anger about this but it really makes me extremely angry. I am a grown man!!! I should be able to control this simple act. And it embarrasses me to be in the adult diaper aisle and then try to check out with a package of them. I was in CVS trying to check out with this package and they made me stand in line forever even when they opened a new line. Then when I get up to the counter to pay, she puts the package in a translucent plastic bag with it sticking half way out. I ask her for a bigger bag and instead of just putting the whole thing in a bigger bag she takes it out of the small one and puts it in a bigger one that you can see through. And then smiles at me. Can they make my embarrassment greater?
The third thing that I am angry about is my loss of control over my emotions. Poor Paula! She is not the brunt of my anger but she is there as I am having my temper tantrum. She tries hard to calm me and tries to get me to relax but the anger is still there. Then if my anger is not flaring I am crying my eyes out. Why am I crying? I DON’T KNOW!!! I’m just crying. Over the past several decades I have taken some pride in being able to control my emotions so that I can do my job to the best of my ability. Well, that seems to be gone now!
The last thing, for now, that I am angry about is that because of all of the above, Dear Paula has to do more. All the various balls that I have dropped she has pick-up plus more. She is doing too much. And I just can’t take the pressure off of her. As many of you know, my brother-in-law, Paula’s brother, has autism and lives in a group home. Well, because of, due to the lack of a better word, stupidly and laziness of the administration of the group home and the of the State Of New Jersey Division of Developmental Disability, Paula is getting calls and mail about every day about their mess-ups. And on Fridays, in the mail which does not arrive until after 5:00 p.m., we get a big envelope with papers to fill out again because they lost the ones we filled out before! Many of you know that I am not a violent man, but I am ready to head out and find these people to punch them out! BUT, I will not!!!
So, where does that leave me then? I really don’t know!!! I do know that I have to get control of myself again. My anger will be the death of me. Some anger can be good but this is getting to be too much. I need to get myself doing again. This house is a mess and getting worse all the time. Me giving in to my tiredness is going to make us lose everything we have worked for and Paula does not deserve that!
I know, I know… you’re saying that I am sick and need to give in to this sometime and that in time it will get better. I really can’t accept that! There are millions of people going through the same thing that I am going through and are still doing and not having the anger that I am. But, how do they do it??? I’ve got to work it out! Those of you who say that I am in your thoughts and prayers, I thank you so much. And ask you to please continue. I think that this might be the hardest journey/fight of my life! So, your thoughts and prayers mean more than you will ever know.
Until next time
Sunday, May 05, 2013
Thank you and Clarification
Yesterday I wrote about my anger issues. I thank you all so much for the comments and offers to come over and put in a vegetable garden for me. You are all so kind and thoughtful and I am really appreciative of your kind offers. But, I really did not list that in my anger list to get help. The garden will wait until next year when Lexi is a little older and can do things in the garden herself. I did go out yesterday and worked on the Fish Pond some and got it clear, but it took me five times longer than normal to get it done and I didn’t do all the work that needed to be done. That will also come later. So working out in the sun all that time did give my skin a little color so that my hair (long as it is) is now whiter than my skin!
My friends, you do blow me a way. The love that is shown to me is what is going to make me get through this battle/Journey. As I have said many times, I am learning so many things from this struggle. One of the things I am learning is that it is almost impossible to get through this by yourself. You need support from family and friends. And my Friends you are giving me the support that I need.
The last thing I would like to add is that I am not mad at anyone. Well… I’m not happy with our legislators but that is another subject all together. However, the only person I am angry with is myself as I said yesterday. And I will eventually come to terms with that in time. With all due respect to members of the psychological professions, doing this blog is a lot cheaper than sitting in their offices while I say the same thing that I am saying here with them falling asleep on me and charging me $300+ per hour. Yes I am a little cheap that way!!! ;-)
Until next time
Sunday May 12, 2013
Thirty-four down with ten to go!!! That’s radiation treatments. The people at the treatment center are wonderful people, even though I not that crazy about the doctors I have to see each week, but the techs, nurses and secretaries are really caring people. What I think is that these doctors, that they have me see, are in residence and are really trying but I just feel they have a lot to learn yet. I must also say that the other men I have met there are wonderful to talk to. Each one of us have a different story but we are all sharing this journey together. Some are ahead of me, some are behind me and some are along side. Some have a cancer that is not as advanced and others have very advanced cancer. Some have had cancer before and others, like me, are on our first voyage. Some are older while some are younger and still some are about the same age. We come from all walks of life, are of all races and religions. There is one gentleman, we all try to talk to but he only speaks Spanish. With my limited understanding I get “Ola” out and that is about it!!! I feel bad because when we are in there waiting, we just kind of look at each other and smile. Because we just don’t understand each other. This is one experience that I will never forget. Even with my hormone and radiation riddled brain this experience is burned into it forever. Another experience that is burned into my brain is being one Rt. 295 and the traffic with people just stopping for no reason. I swear it is enough to make the calmest God fearing person start swearing and screaming! Someone please explain to me why you are going 70 mph and all of the sudden the traffic stops and craws for about a half mile and then they are back up to 70 mph right away and then stops again after about a mile??? There is no reason to stop but the traffic still stops. I always hated having to commute to work, therefore when we moved into Woodbury, about a mile from where I taught, I thought it was great. I could even walk to school with no problems. And there has been times when I have had a lot longer commute for a short time but this one is really getting to me now.
Back on May 4th I wrote about my anger. Right now I have that anger somewhat under control. Maybe that scream I let out Friday afternoon in the traffic on Rt 295 helped. But there are times when I go into some very dark places. However, I’m going to get into that here. What I want to tell you about is that I have had friends, after reading that post, offer to come over and do my yard work for me. I really do appreciate that so much. But, also like I have said before I have problems asking for help on things like this. However, something else happened. On the 6th of May, my wife got a phone call from Woodbury High School. I was at treatment so she talked to the person on the phone and they said that they have students in the Alternative High School that need to fulfill the graduation requirement of so many hours of Community Service. So someone brought up my name to see if I could help out here. All the students in Woodbury High School now have to have so many hours of Community Service. Well, since the Alternative High School meets starting at 3:00 p.m. they are having problems getting their requirements in. So the school asked if they could come over and clean up my yard and do whatever work I need done. This was appealing to me because I will be able to help some of these students out in a little way. They are coming over on May 15th to do what work I have and will come back as much as I need them.
While I am being excited about this my wonderful Son-In-Law, Mike Taylor, contacted me and told me he was coming over on the 9th to wash my siding, which was quite green. He did a wonderful job. And here I was wondering how I was going to do it since I don’t have a power washer. Mike thank you so much!!!
Alright, now you heard about all the wonderful events, friends and family that I have. I am so grateful for all of this. I am able to get outside more now and I am seeing the beauty of spring and of God’s world. I see the baby birds with their mouths open wanting food and various animals paring off to raise young. I see my wonderful wife, who is always trying to do things to make me feel better. And most of all we have this wonderful little girl named Lexi, who is so loving and gives her Opa hugs and likes have him read to her. SO!!! Why do I feel like crying so much??? Yah, I know, it is the hormone treatment. But, Ladies, is this what you feel like at times??? If so please forgive me for not understanding. Not that I really understand now, but I would really understand what you are feeling like and would like to get that under control again. Nevertheless, with all the fantastic things in my life, and with God’s help, I guess we can work around this.
Until next time,
Tuessday May 14, 2013
I was just sitting in Glassboro waiting for my granddaughter’s bus to come and soaking up some sun. I brought a book to read but didn’t really feel like reading it so I listened to some music on WRTI. Just so happens one of my favorite groups were playing, the Canadian Brass. While I was sitting there just listening, I saw a red tailed hawk fly by with two mocking birds chasing it. I guess it finally got out of the area that the mocking birds were defending because I then saw it back just soaring on some up-currents. There he was, not even flapping his wings, flying in decreasing circles rising ever higher. I have often thought how wonderful it would be to soar like that. I then started to notice the fluffy clouds in the sky, not a lot of them but just enough to make it interesting along with the green of the grass and the trees. The air was so fresh with the slight scent of the blooming flowers and bushes. I could not help to hear in my head Louie Armstrong singing “What A Wonderful World.” http://www.youtube.com/watch?v=2nGKqH26xlg
Winter this year has been especially tough for me. I am not a fan of winter but this one was real rough for me. A lot of people keep telling me that I am an up person. Well, I haven’t been feeling like it most of the time of late. Today I am neither up nor down. I’m just kind of mellow (no not “Mellow Yellow”) and very grateful. I am grateful for the birds, trees, grass, and clouds with the wonderful blue sky. I am grateful for so many friends who have been praying for me, and encouraging me. I am grateful for a great medical staff that are taking care of me right now. I am grateful for a wonderful family who are behind me and loving me and helping me when I can’t do. But, I think that I am most grateful for my amazing wife Paula. She has and is there when I am at my lowest. She is there ready with a massage, a meal, or just a loving touch with soothing words. But, maybe the hardest is just listening to me as I rant, rave, complain and/or cry. When I make it through this and get the all clear it will be because of God, friends, family and especially Paula.
Paula my love, I think the smartest thing I ever did was ask you to marry me. I love you, always have and always will.
Now I was just debating if I should post this on my blog page ( http://www.facebook.com/KraussCancerJourney or on my time line. Maybe I will do both.
Until next time.
Friday, May 24, 2013
Well, it has been a while since I last wrote. Needless to say I have been busy. I have had a Choir concert, promenade, Spring musical at Sicklerville, Band concert and Bridget’s “Hooding.” We are so proud of Bridget because she has accomplished so much and continues to accomplish much. Nobody can ask for a better daughter.
We have now had the kids from the Woodbury Alternative High School come out to the house two times so far. They are earning service credits toward graduation. They have been cleaning up the yard and the rain gutters and the house is looking great. I am told that they are having trouble finding service placements for these kids because they are with the Alternative High School. Well, okay, they have had some problems in the regular high school setting but that does not really mean that they are “bad” kids. They can learn, and do, it is just they have to do it a different way. WOW! What a concept!!! Making education fit the need of the student instead of the student fitting the needs of the Education System. I am sorry to digress but it does fit into my belief that we should teach the students how to learn not how to take test! None of us adults take test to get our paychecks. We have to do, to produce. That is what we should be teaching our students!!! I am very much a practical teacher.
Alright, let’s move on to my disappointment. Today was to be the last of my treatments. Paula was going to go with me to the treatment and be there when I ring the bell. Then we were going out to dinner to celebrate. As I was setting out to go to my treatments from school yesterday I returned a phone call I got earlier. It was the treatment center and they had to cancel my treatment for the day because the machine broke down!!! So, instead of finishing up today I will be finishing up on Tuesday. We will have to take Lexi with us, which is no heartache and I really love having her with us, but we will not be able to go out to celebrate. Oh well! I guess we will celebrate in three months when I am tested again and I am declared free of cancer! Now, it is my understanding that I will have to be receiving hormone treatments for a few years to be sure that the cancer does not come back. However, I think I can live with that.
This week has also been rough for Paula and me because of Arthritis. We are both hurting because of these weather fronts that have been coming through. During the past few days my back, that hasn’t acted up too much over the past few years, really flared up. I had problems doing anything. It was so bad that I thought many times about calling in sick to school. But I made it in and with the help of everybody there made it through the day. Towards the end of the day, right before I left, one of the parents/aids asked me how I was doing. I told her about my lumbar pain and she stopped and started praying for me right in the middle of the class of sixth and seventh grade students. Before I knew it most of the class was around me, laying hands on me and also praying. The pain in my back started to ease up. I was able to walk around with more ease. That evening the pain gradually eased up more and more. By the time I went to bed most of the pain was gone and I was able to have a fair night’s sleep. In fact, even though I got up a few times for the bathroom, I slept until about 6:00 this morning. Not back for someone who wakes up at 4:00 all the time!!! I still feel some tightness in my back but it is not bad at all and I am able to move around again. See that!!! Prayer does work!!!
Until next time
Wednesday, May 29, 2013
Rang the Bell
Yesterday, May 28, 2013, I rang the bell. Well, really Lexi, Paula and I rang the bell as you can see in the photo below. That means that I finished my radiation treatments. After forty-six times going to Cherry Hill and fighting the traffic coming back home, fifteen minutes going up and over a half hour coming back, thirty-three mile round trip, I don’t have to do it again until September eleventh when we discuss my PSA test results. That last treatment was a long one also because they were backed up with the machine acting-up, and a newbie who had other physical problems also took longer and need more care than the rest of us were needing. So the whole visit took over an hour. The wonderful thing about it, as I said, we had Lexi with us and she was good as gold. After an hour Paula took her outside to walk around and to splash in the rain puddles some. When I came out to tell them we were ready for the ringing, Lexi start to run toward me pulling Paula along. I was and am so happy Lexi and Paula could be there for me for this step. To me having Lexi there, this young life so full of energy, joy and hope to ring this bell with me, signifying my continued life, finding joy and hope in her, means so much. Paula and I are tired after a day with Lexi, but she brings so much joy and energy into our lives. Thank you God and thank you Bridget and Mike for this wonderful gift.
Okay so what is next? Well, I’m not totally sure. I am waiting for return phone calls about some of it, but I think that at the end of June I will get another hormone shot and will get them every six months after that. The end of August I get the blood test again and then talk with both Doctors from Delaware Valley Urology about what will follow. Until then… I will just have to wait and see. That is one of the worst things about having cancer! The WAITING! Until then I guess I will keep writing and letting you know what is going on. And looking at this wonderful picture and remembering what it is all for.
Until next time
Tuesday, June 04, 2013
Well, it has been one week since Lexi, Paula and I rang the bell. During this week we have had what some people have complained about as being hot weather. I personally really enjoyed it. It has brought back life to a body that has been ravaged by radiation and hormones. During this week, also, I realized how much that radiation treatments have taken out of me. I am slowly feeling a little bit like my old self. Friday, Paula noticed that the local farm stand, DeHearts, was open and selling strawberries. She asked me to go and pick up some for here. While there I noticed a six pack of tomato plants and bought them on a whim. I use to have big gardens in the past but have not planted anything for a while. Come Saturday afternoon I went to Home Depot and got some more plants and supplies. Then I worked for over four hours in the yard planting and loving it. Did I overdo it a bit? Yes, but I loved it. Right now I have this need to plant things. I have a need to be around life, of something growing. Today I went and bought some Bell Pepper plants and Egg Plants. A little while ago I came in from putting them in the ground, and it felt good! For the next few days I will be tied up with no time for the yard and then the weather for Friday and Saturday is going to be bad, so they say. So this will have to do for a while.
So, I’m thinking, why am I feeling this way? As I said, I am now seeing that I was sicker than I thought I was. Oh, sure I knew I was sick, but I just thought I was tired and a little moody. I now look back and see that I was in a cloud most of the time. People, I don’t think, noticed it that much, but a few did, like Paula! Even though this is a slow moving cancer, it is still cancer and it has had a big effect on my body. Of course the treatments, both radiation and hormone, also had/has a big effect on my body also. The accumulation of all of this has made me aware of my mortality. I now realize, with much greater depth, that even though I am here now, tomorrow is not promised. Whereas, I have always believed in the power of prayer, I have become so much more aware of it now. Also, now I find myself taking more time each day thinking and praying for people that I know.
Therefore, what is this thing in me needing to do all of this planting? Well, I will still be under treatment for a few years by having hormone shots to keep the testosterone away. I will still have side effects (menopause is hell!) but I will be alive. Doing all of this planting is me connecting with the life that comes from the earth. And it is letting my body know that it is not time to give up yet. Remember, I told you six months ago that I will beat this… and I will!!!
You know something? I’m getting good at getting all this therapy for nothing! I vent on the blog and I connect with life through plants and of course kids at school and my granddaughter. Wow, if everyone did this therapist would be out of work! NOT!!! Just kidding. Good therapist are something that will always be needed. Especially good Social Workers such as Bridget Taylor!!!
Until next time, I’ll be out planting something!
Sunday, June 09, 2013
I Didn’t Expect That
I haven’t been planting much since I last posted because I have been busy and my energy levels have been going up and down. This is graduation season and there are not only graduations but also award presentations. This coming week we have 8th grade graduation at SJCA, Sports/Activities Awards at Woodbury, Preschool graduation at SJCA, and 8th grade promotions at Woodbury. Next Week I have a graduation, dance recital rehearsal and then two recital shows. In between all of this I have to fit in some doctor’s visits. Now add into that Paula’s birthday, which I would like to make special but can’t because of other things happening. You know what??? I am supposed to be retired!!! RIGHT!!!
As to my health… As I said my energy has be up and down. They told me when I finished my radiation treatments that it will take about a month to get back to “normal” again. What they never told me was that my body will start to dump the poison that is in my body when I least expect it. Thursday I went to South Jersey Christian Academy, as normal, feeling pretty good. Got everything set up and got ready for my first class and then my body said, “Time to get rid of some of this poison. I kept trying to flag down others to cover my classes so I could run. I could not eat lunch and just made it home where I spent the rest of the evening and night between bed and the bathroom Almost like “Bed, Bath and Beyond!” My own version. Paula kept asking me what I wanted to eat and I kept saying “NOTHING!!!!” By late that night I slowed down and was able to sleep. I was able to do some things on Friday but spent Saturday and Today resting because it seemed like I was starting again. So those of you who are getting radiation, don’t be surprised after your treatments if this happens.
Now for something a little on the funny side. My Love, Paula, never went through all the side symptoms of menopause when her time came. So it was kind of funny that now I am getting all the symptoms of menopause because of the hormone shots. The really funny part is that now she is starting to share my side effects!!! I talked to the doctors at the radiation center about that and they said that it was not uncommon for the wife to suddenly get the sympatric effects with the husband. So it is the joke in our house that I have contingence menopause.
There are a lot of things that I am thankful for. One is Paula along with Bridget, Lexi and Mike. They are always there for me, encouraging me, listening to me rant and cry, and just being the family everybody needs. I am also grateful for my friends. I have received many e-mails, cards, phone calls, as well as post on my Facebook blog. All of these good people telling me that they are keeping me in their thoughts and prayers. Then there are the ones who tell me how helpful this blog is to them or to those they know going through similar battles. That is one of the main things I wanted this blog to do. Help others who are going trough life’s battles. Letting them know they are not alone and that they can do it! When I finished my radiation treatments they gave me a leather bracelet that says “I’m Living Proof!” I told you in the beginning of this blog that I am going to be alright and I will be! And so will you with your battles!
Now I am going out and sit in my yard and enjoy the beauty of God’s world! Take a little time to smell the roses!
Until next time; “Keep Fighting The Good Fight!”
Tuesday, June 18, 201
Keep Overdoing It
The yard is looking pretty good and our crops are starting to bare some fruit. Last night Paula cut some fresh Basil and some of our pepper plants have baby peppers on them. I’ve clean out our garden shed so that I can get to my tools, cleaned out the pond, dug up some old gardens and cultivated them, trimmed some bushes, planted some Moon Flowers, and watered the plants and birds every day. I have also been playing with Lexi when she is over and yesterday got her into her wagon and took her for a ride (for her and walk for me) around bell lake. We saw a lot of geese and ducks with their young, and turtles on floats in the lake. However, that walk home, up the hill on Girard, was a killer for me. I have noticed that I keep over doing it. I can’t seem to stop doing things in the yard. I want to plant, I want to dig in the ground, I want to trim the bushes, I want to do things in the garden. I resent people wanting me to do other things right now. I am resenting the rainy weather we have had. I just want to work around the yard. But, you know what I really resent? The way my body runs down so fast. However, hard head that I am I will not take a hint from my body and just do a little bit. There is something in me that just keeps pushing me. Then when my body can’t take anymore and just shuts down. I just push a little more and then I am down for a few days. Whereas, the way this weather has been does not seem to matter too much, nevertheless I really want to do more.
At this point in time, when I am worn down it seems to attack my “gut.” I get stomach aches, I get into another relationship with bathroom, I am very tired and sleep a lot, and I am just downright irritable.
Speaking of my “gut,” I am really getting tired of being on this B.R.A.T. diet. I need some veggies and fruit! It has only been three weeks since my last treatment, and I know they said it would take about a month for my body to go back to “normal,” but I really need to get some of these great Jersey fruits and veggies. In fact, I am missing them so much, that even though I am a good Jersey boy, I will take them from anywhere now!!! So I am starting to include fruits and veggies into my diet again, and if it is too soon, you might have to come to that little water closet in our house to talk to me. I think I will get cable installed in there!!!
As you know the school is winding down and a lot of kids will be taking their first steps away from home and going to college somewhere. Many of these kids I will miss seeing around but to all of them I wish the best that life can give them. Don’t get too tied up in making your way in life that you forget to enjoy the world that God gave us. It will keep you grounded (pun intended).
Until next time
July 1, 2013
Digging and Sweating
It has been a long time since I wrote anything here. It has been a real busy time for me and a lot of things have been happening. As I am sitting here thinking of where to start, Paula has just given Lexi a bath and as she came out of the bathroom Lexi had the most precious laugh that it draws my thoughts away from this to her. That has been part of what has been happening. Lexi’s school ended on June 18 and instead of having to go pick her up after school for three days per week Bridget has dropped her off about 8:30 each day. This week she started the summer session of school so we are back to picking her up at about 10:30. When she is here I have a hard time getting things done because I just love being around her and playing with her. She is such a happy child and she just makes you feel good to be around her. Plus she always wants to play on my laptop!!! So she makes it tough to do any writing when she is here, but I still love having her around. Alright, let’s see what has been happening. Woodbury High School had their Convocation and Graduation on the 20th of June. I was just going to go to the Convocation because it does take place in the Auditorium so I have to man the booth. Just as convocation was ready to begin the Director of Pupil Services told me that a hundred dollar scholarship has been given in my name by a parent who is impressed with my teaching and wants to remain anonymous. I was shocked and honored. So I stayed for Graduation also to see who won the award. He was a student that worked in the booth with me on Fridays during Town Hall Meetings. I felt that he was a good choice since I know so many who also deserved it and this was one decision I did not have to labor over.
That Friday and Saturday was taken up with the rehearsal and two recitals of the Act One Dance Studio where I was manning the booth again. Sunday was my day for giving the children’s sermon follow by a an Administrative Council meeting about the Church web site. This meeting reminded me as to why I hate going to Church meetings. Whereas I was the webmaster and took care of the web site for the Church by myself, incorporating suggestions from others, I am now the chair of the Web Site Committee. And I have to give reports to the Administrative Council of the Church. Now, I have set up a new web account with a new service provider and we, as a committee of five, are to redesign the web site. Didn’t I read somewhere that the wildebeest is an animal that God let a committee design? Oh well, I guess this is also an honor. The rest of the time during the past two weeks, I have spent in the yard. I have been planting, trimming, and pulling out old bushes that are past their time. Paula is complaining that I am like a mad man out there. I have been planting tomatoes, four different types of peppers, eggplant, and flowers like anything. Also I have planted herbs in the flower bed as well as a hanging pot. I am now thinking that the yard does not look bad at all. But, I cannot stay out of it. I am loving having my hands in the dirt, of smelling the fresh soil, the smell of the plants (I really love the smell of the tomato plants), and the feel of the sun. Yes, even in this heat, I have enjoyed working in it. Paula is worried that I am doing too much. However, I keep telling her that when it gets to be too much, I sit down. Nevertheless, the yard work and the heat are making me feel alive. I don’t want to stop.
As to my health, it is going pretty well. I went to my G.P. last week and he was happy with what has been happening with me. He also likes my new attitude. I enjoy my yard and instead of worrying about the work that needs to be done, I can now sit in the yard or on the porch and enjoy it. Whereas I am doing a lot of work, if it does not get done…Oh Well!!! I do have some rough days where my body seems to be getting rid of more poison but on the most part I am feeling good. I think that the biggest complaint that I have is the rain we have been having. It is really depressing to me. With extended rain like today, I can’t really get out and my mind starts to think of all the bad things again. I really have to work on getting out of this funk.
Oh, by the way… I bought a new Charcoal Grill and we have been grilling ever since… when it stops raining long enough. So far out of five dinners we have grilled four times and the fifth time we had Chinese! It is a good one and I am using lump charcoal which gives an all together different taste to the food. Again, I am really enjoying it.
Until next time, planting, trimming and grilling and enjoying it.
July 10, 2013
Time Moves On
Well it has been a long journey so far, but a short one. It has been just over seven months since Dr. Orth made the statement that this was the worst part of his job, telling me that I had prostrate cancer. Since that day I have cried, Paula has cried, we have cried together. My daughter Bridget has bugged every doctor at Lady of Lourdes finding out about this cancer. I passed out drunk from single malt scotch (don’t think I will do that again… woooo!). I have had digital exams (the doctors felt nothing wrong), bone scan (told me that I had arthritis in the shoulders and no knees! Had the knees replaced years ago), CT scans (showed nothing), placed on hormone pills and finally had THE hormone shot (menopause is hell!). Then had 18k gold clips placed in my prostrate (fun, fun, fun!!!) and then had an MRI which finally showed the cancer (and a degenerative lumbar which started when I was in high school!) That was then followed by 44 broad scan radiation treatments which brought on all sorts of side-effects and a new relationship with the bathroom! Made it through the radiation treatments and rang the bell with my wife Paula and granddaughter Lexi on May 28th. Since then my health and energy has been returning and I am now realizing how sick I was. Paula says that I have been a mad man working around the yard as my energy returned. I have been planting tomatoes, peppers, egg plant, herbs, and flowers, along with trimming bushes and even digging old bushes out. I just can’t seem to stop working in the yard, my skin is a lot darker than my normal white, and I am feeling good as I look at what I did. AND now when I go outside I can sit and enjoy what God has created, both visually as well as the sound of the birds. Is all the work done? No, but I can now enjoy being in the yard and don’t care if all the work is done. It will get done in time. I am taking time to see and smell God’s world as well as hearing God’s symphony.
Next, as of yesterday, July 9th, I started the next phase of this journey, maintenance. I received my second hormone shot and talked with Dr. Orth for a while. I asked Dr. Orth what if the radiation did not work. His reply was that he was not concerned about the short term results of the radiation treatments because he knows that it did work, it always did. His concern was did it work enough to push the cancer away for the next twenty or thirty years. Besides they have more treatments in their tool bag. So he did ease my mind some there since I will not know how it worked until the end of August. We also talked about the importance of family members to the treatments and recovery. Paula has helped me so much. Dr. Orth said that it was because she could be my support when I was falling apart. And yes she has been. Paula has pushed me along to get things going with the treatment, held me while I cried, encouraged me when I was down, and in general was there when I needed someone. I was thinking that I had a pretty good team going there. Dr. Kruger pushing me to get to Dr. Orth when my PSAs where high, Dr. Orth pushing for the samples of the prostrate when the exam showed nothing and the PSA was still raising, and lastly Paula with pushing me to get started with treatments when I wanted to put it off. I know some of you will not understand or agree with this statement, but I know God put these people together for me as I have gone through this journey. I have been learning many lessons that I never thought that I had to learn. I am so very grateful for all of this support and lessons that God has provided. I am also so very grateful for all the prayers and thoughts that have been sent my way. I have always been a believer in prayer, but now I can actually say I believe on prayer. Let me explain that… Many years ago a dear friend of mine explained the difference in believing IN and believing ON. When a person looks at an elevator that person can say that he or she believes the elevator is safe and will take him or her where he or she wants to go as far as up and down goes. But that person is only talking until that person actually gets on that elevator and rides it to the floor that he or she wants to go. When that person does that he or she then believes ON that elevator. Therefore, I have changed that from me believing IN prayer to believing ON prayer.
In the beginning of this posting I said that it has been a long journey but a short one. As I look back at what has happened over the last seven months, the time has not been long. However, it seems like I have lived another life time. Yes, I still have that voice inside me screaming that I have cancer. But, it is not as loud as it use to be. Now, I also have the voice that is getting louder all the time saying; “You have survived, you are surviving, and you will survive!” It is going to be a constant battle/journey that I will have all my life until I am called home. I was just thinking that maybe this is something that every person with cancer should remember to keep them going; “You have survived, you are surviving, and you will survive!”
Until next time, the journey continues
July 25, 2013
It has been fifteen days since I posted. Hard to believe that much time has passed. I have been busy and I have had some highs and some lows during this. Let’s get to some of the highs first.
Along with the gardening I have been really getting into grilling. We bought a new grill back at the beginning of July, and since then I think I have tried to grill everything. I’m using lump charcoal and it give an altogether different taste everything. I have grilled steaks, pork chops, ribs, brisket, pork loin, hamburgers, chicken, etc… Just about any meat I can get my hands on. However, the big thing that I am fascinated with is grilling fruits and vegetables! I can’t seem to pass a farm market without stopping in and getting something. I have grilled pineapples, peaches, pears, tomatoes, eggplant, squash, potatoes, sweet potatoes, peppers, etc… Anything I can find. Last night I tried something different, Grilled Stuff Jalapeno Peppers. Paula has been thrilled with most of what I am trying (the brisket could have been better) but she really loved the Stuffed Jalapenos last night. I am not one for hot peppers but because I took all the seeds out of these they were just right for me also. I think that I will be making a lot more of these.
I have also been making a lot of salsas. They all have a lot of fruit in them and they are coming out pretty good. Not only are they good for eating with chips but also on hamburgers and other hot sandwiches as well being a marinade for the meat. I tell you, between Paula with her pickling and cooking and me with my salsas and grilling we are a cooking team. The problem is trying to get into our small kitchen that only has room for one person at a time. But we work it out.
The other great thing is that I have been with Lexi a lot. She is so wonderful. I pick her up three days per week from the school bus in Glassboro where they live and bring her back to our place until her mother picks her up in the evening, after work. We have this little pool for her and she loves it. She plays with the toys and tries like anything to get Opa wet! And she does!!! When she is ready to come out I wrap her in a towel and carry her up to the porch and she loves it, laughing all the way. There is nothing better for the soul than to hear a child’s laugh!!!
This leads me into some of the bad things. Around the tenth I ran out of some of my medications and between not having the money right away for the co-pay and the pharmacy not having it in stock, I went a week without some of my meds. Well, Wednesday I started to take them again. I was alright at first but when I got to our daughter’s house to pick up Lexi I started to get sick. I ended up waking up my wonderful Son-In-Law, Mike, who works nights, to drive Lexi and me back to Woodbury. I ended up sleeping quite a bit and being waked by Lexi crawling into bed beside me to play on one of our Kindle Fires. I did enjoy her snuggling up to me but I could have done without feeling sick. So lesson learned… don’t run out of medicines! The next thing wrong is related with this, because I came down sick, Paula postponed out vacation, which was suppose to start on the next day. She postponed it for two weeks. Well, maybe it is for the best. It was HOT last week!!!
That now leads us to the cancer. I think that I have come face to face with my mortality. I have been having a lot of depression and anxiety of late. I have been thinking about what Dr. Orth said about hoping that the cancer stays away for the next twenty years. Then I came across an article in the New York Times titled “Anxiety Lingers Long After Cancer,” found at http://well.blogs.nytimes.com/2013/07/12/anxiety-lingers-long-after-cancer/?_r=0 . There is one paragraph in the article that really hit me hard: “Dr. Laura B. Dunn, a professor of psychiatry and director of psycho-oncology at the University of California, San Francisco, said that although cancer is increasingly labeled a chronic illness, ‘it’s different from arthritis in that it’s more of a chronic threat. Some of us are wired to be attuned to threat.’ The anxiety is understandable, she said, because ‘no one can guarantee you a cancer-free survival.’” I am not really going to get rid of this thing! I am going to die with it. Maybe not today, or next year, but eventually I will die with it. Then my thoughts turn to Paula. What will happen to her when I am gone? How will she cope with it? We have become so close and depend on each other so much. I know, I know we all are going to die sometime but right now it is just becoming so real to me. I have lived 62 years so far. The doctors are hoping for another 20 years for me. TWENTY YEARS??? That is nothing. But we all die!!! Before the cancer I never really thought of it. “Yah, Yah, I will die some day. Oh well!!!” That was my thoughts. Now, each day is a gift. As I am firing up the grill to grill something else, I spend a lot of time looking at the garden and the trees. Yes each day is a gift. Yes, I am going to die someday, and all I can do at this point is enjoy the time God gives to me, enjoy the wonderful wife and family God has given me and trust God to take care of things that I have no control over. Yes, I have a chronic illness, but it does not have to rule over me.
Until next time
Monday August 5, 2013
It has been a while again since I have written. It seems that I just don’t have enough time to get things done that I should be doing. Of course when we are watching Lexi, I do not get much done inside of the house because if I sit down to the computer she thinks that it is for her. We distract her with our Kindle Fires, but if I have the computer going that is even better than the Fire. This past Monday, Tuesday and Wednesday were the last three days of her summer school for Lexi. When she is in school we pick her up from the bus in front of her house and bring her back to Woodbury will her mother picks her up in the evening. Now with not school, her mother will be dropping her off earlier in the morning. I don’t know if any of you realize it but Lexi has this magical power to make you feel better no matter how tired or depressed you are. She is a total sweetheart and I love having her around the house.
Speaking of depression, that has been my story for the past few weeks. I seem to be going in cycles where I feel good, my thinking is clear, I am happy and I get a lot done. Then changes take place where I feel not really sick but I don’t feel good, it takes me longer to figure things out, I don’t feel like doing much and I am very depressed. I know this drives my wife nuts but I can’t seem to help it. At those times I also feel very claustrophobic and feel very irritable when I am in crowds, even in the car. There are times when I am sitting watching TV when I just have to get up and go outside. I just can’t stand being in the house any longer. Paula says that there is little wonder after being in that machine for my treatments for forty-five days. I don’t know… that treatment was over two months ago. Although, some days I still feel the results of the radiation treatment. Those days I ask myself, “Will I ever be right again?” I know I will never be the same mentally or emotionally. Who could not go through all of that without changing? I keep telling people that I do have a new attitude, “ if it does not get done… oh well!!!” I just do the best I can do. And if I just want to sit and enjoy my yard or surroundings, just thinking about various things... I do.
Last week, thanks to our daughter, Bridget, son-in-law Mike and granddaughter Lexi, we were about to get away to Lewes for a short three day vacation. We got a lot done like shopping and going out to the Bay down at the Cape Henlopen State Park. We then had dinner Friday night at the Buttery, our favorite restaurant where we had a wonderful meal. The Hotel where Bridget and Mike arranged for us to stay in had a nice little veranda on the edge of the pond where I was able to sit and read some. Did not get as much reading done as I normally do but did finish one book I was reading. Thank you again Bridget, Mike and Lexi for the time away. Paula and I needed it.
Also, on Sunday, September 15th, I have been asked to talk a little about having prostrate cancer at the Health Fair held at Christ Episcopal Church here in Woodbury. Paula will be with me to give the wife’s point of view. As most of you know, I really do have a lot to say on the subject. And since most men really don’t like talking about it, I hope that God gives me the words and the opportunity to tell many about it.
Until next time, the cycles continue
Sunday, August 11, 2013
Tomorrow I go for my first blood test since my treatments. This is to see if my PSAs have gone down into the normal range. I will not know the results for two week when I go back to see Dr. Orth. Needless to say Paula and I are very apprehensive about it. I really don’t know what I will do if my PSAs have not come down. Of course it does not really end there if it is okay. I will need to get tested in January and July. I need to have low PSAs for a year to be declared clean. I think one of the worse parts of this journey is the waiting. Waiting for results, waiting for test, waiting to start treatment, waiting to be tested again. Waiting, Waiting, WAITING!!!! WHY CAN’T THIS JUST BE OVER???
I am sitting here trying to write about what I am feeling and I keep coming back to this blood test. You know that I have faith in God, and I know that he will take care of me. Just like the old hymn “God Will Take Care Of You.” However, that still does not take away my fear and apprehension. I just can’t seem to concentrate on anything else right now. So I will not boor you with my ramblings. I will post again soon and maybe talk about happier things.
Until next time
Thursday, August 15, 2013
Today I received some of the results from my blood test on Monday. If you would remember when I found out that I had cancer my PSA was 16 and going up. Now, I still have to consult with Dr. Orth and Dr. Hirst at Delaware Valley Urology, but from what I understand, my PSA number now is …. Ready for this??? 0.1!!! Paula and I are crying for joy and thanking God.
Until Next time
Tuesday, August 27, 2013
In A Daze
It has been twelve days since I posted and I have been in a kind of daze this whole time. Today I go see Dr. Orth to get his interpretation of my test results. During this time, also, I have been working in my yard, helping to watch Lexi, started to put in a new raised garden (now just need the money to get the wood) and grilling just about every night. As I do my digging I have to rest quite a bit (not quite in the shape I was in twenty or so years ago) so I think, as I prepare the food to be grilled, I think, as I am waiting for the charcoal to catch, I think, and as I wait for the food to cook, that’s right, I think. What do I think about? I think about all the people that I love and who love me (especially Paula, Bridget, Mike and Lexi), I think of what God has given me, I think about how wonderful the world is, but most of all I think about what has happened to me this past year.
Needless to say, this has not been a great year for me. I do praise God for what He has done for me mentally, emotionally and physically, BUT, I have never been so hurt in my life. I have had so many things happen to me over the years and it all has expanded my experience bank to overflowing. However, this past year has left me feeling ravaged. I have been probed in ways that was never meant to be, samples taken, clips inserted, irradiated, and my basic maleness taken away with hormones. Don’t get me wrong I am still all man, but it is just that I am experiencing things that most men just don’t experience and I just don’t have the same feelings I had before.
So!!! Where does that leave me? Even though I am grateful to God for what he has done I am still going through periods of deep depression. And in fact sometime I feel that I am swinging back and forth from elation to depression like a pendulum of a clock. I do hope that in time that does decreases. I also don’t feel like doing anything but working in my yard and grilling. This is causing me a problem now because we are starting the school year soon and I have lessons to prepare. I just don’t feel like it. One of the questions I keep asking God is, since I have always enjoyed working in the yard and planting things, why did I get away from it? I even taught it in my classroom for years, and the kids loved doing it. Why did I get away from it?
Well, I have to get ready for my appointment with Dr. Orth, and then do something to prepare for my classes. Please continue to pray for me along with praise for what God has done.
Until next time
Friday, September 13, 2013
It is hard to believe that it is September 13th already. I wanted to write many times but it just seemed that there was no time. I really want to keep this blog up because, from what I understand, this cancer will really never leave me but we have knocked it dormant. But I seem to be getting ahead of myself. Let me go back and start at August 27th.
This is the day I had my appointment with my urologist, Dr. Orth. Paula and I got to the office early so we had quite a wait before we were taken into the exam room. When Dr. Orth came into the room, he was as jovial as ever. When he opened my file to look at my PSA results he went: “WOW!!!” “This is good!” We talked about the results and he said that this will raise some over the next year but it should stay below one. And that I should continue to receive the hormone shots for another year or more, so that we can keep it under control. When we left we exchanged very pleasant platitudes and set up my next appointment for January. We walked out and I felt like a ton of weight has been lifted off me. When we got home I had something ready to grill and we enjoyed a wonderful grilled meal. I did not worry about lesson plans or anything else. I just wanted to enjoy my yard and grill.
I started teaching again, one day per week on Thursday, September 5th. I still am not up to where I should be in my lesson plans, I have enough done, it is just not enough for me. So, I have been mainly thinking about that and putting them together, grilling almost every night, and tending to my garden. We have started to harvest a few tomatoes and peppers and even two egg plants. I am still waiting to get that money I need to finish the raised garden, but there is not a rush on that because it is for spring anyway. That will bring us up to today.
Today I had an early visit with Dr. Hirsh, my Radiation Oncologist. It was very nice to see everyone at the treatment center, but I did not want to go back and see the machine again. That I don’t care if I ever see again!!! After the nurse took us into the exam room and took down the basic information, Dr. Hirsh came in. She, like Dr. Orth, was very pleased with my PSA and very pleased with my progress recovering from the radiation. She laughed when we told her that Paula says that I am like a mad man around the yard. She said that was the best information to hear. I also told her that I have been asked to talk about prostrate cancer and Dr. Hirsh really perked up saying they would love to get something like that going but they are bound by patient privacy. We then told her about this blog and she was very interested and asked the nurses to take down the address. After we walked out of the office I was thinking that I have made a few comments during my treatment that was not flattering to their office, but you know what? They were comments that I was feeling at the time. So, that is the way it is. When we left everyone kept saying that we should come back and visit just to say hi. You know, I do like the people there but my time there did not leave a lot of fond memories of the treatment. I know that this is confusing but, as I told Paula, this cancer has hurt me more than I have ever been hurt in my life. This is saying a lot because I have had a lot of pain, both physically and emotionally, in my life. And there is still that voice in my head, it not very loud, but still saying…”You Have Cancer!” From what I have read and what Dr. Orth has said. It will always be there. We will just keep it under control.
There is something that I need to repeat, the Doctors and staff of both the Urology Center and the Radiation Oncology Center are fantastic people and have gone out of their way to treat me. They treated me with professionalism and care but they did it with a real concern about me. I once asked Dr. Orth why he got into this field of medicine. His response was that he liked it because he didn’t just see the patient and treat him or her, in this position he gets to follow the patient all the way through the treatment and follow-ups, all the way to the end. Both of these centers show this kind of care of concern.
By the way… I have been asked to attend a health fair being held at Christ Church here in Woodbury and to talk about prostrate cancer with the people there. Paula will also be there to talk about what a spouse goes through and thinks during this time. I am told that the fair will begin at 11:30 and I do not know when it will end. The Church is located on Delaware Street in Woodbury just past the County Court House. If you can, come on out and say Hi.
One last thing before I close, as we were saying good-by to Dr. Hirsh, she looked at me with a big smile and said that she was happy to say that I no longer have to come to see her. That made both Paula and I laugh.
Until next time
Tuesday, September 17, 2013
I have been doing a lot of thinking lately and noticing a lot of things around me more. I’ll tell you one thing, after having cancer your perception of things and your attitude goes through a lot of changes. I have talked about this before, that I am looking at things that need to be done and instead of getting all up-set about not getting it done, I now look at it a say “I’ll get around to it.” And I do get around to it. I am just taking one thing at a time. My attitude also has changed about people. I want to tell them positive things. I want to be positive. On Facebook I try to just be positive. And where before I was not one to block people, now if their negative comments keep up-setting me I just block them. I really don’t need their “negativeness” in my life because life is too precious and short.
Last time I told you that Paula and I were presenting about Prostate Cancer at a health fair that was held at Christ Episcopal Church in Woodbury. Well, that went well. Although a lot of men tended to shy away from our table, however, we button-holed many of the wives and told them about it and to make sure that their men get checked. We had a lot of good responses. I even challenged Fr. Burgess and his wife Denise. I know she will drag him to the doctor’s! I also made some contacts with a group that presents about cancer and they said that they were looking for someone to present about Prostate Cancer. So, I might be doing more of this. That is good! I feel that I was allowed to have this cancer so that I can help others and understand what they are going through. After all, isn’t that what we should be doing, helping others? Unless you have been through this you just don’t understand the pain and embarrassment that is attached to it. Now I do and now I can help.
Until next time
Saturday October 5, 2013
Well, it has been a while since I have last posted. I have been busy, busy, busy!!! There is always something to do. I am getting my lesson plans done before I teach my classes, but sometimes the final touches are done right before class starts. We have been having some money problems with someone getting Paula’s checking account number and racking up charges with TD Bank okaying them when there is not enough money in the account. I have to say TD Bank did not handle this well or timely! I think we will be changing banks soon. Also, someone has gotten a hold of both of our Capital One cards and started charging. BUT, Capital one jumped right on it and called us right away. They handled it well and the accounts have been changed. Funny how Capital One could handle it well but TD Bank could not. One time when Paula was on the phone with TD Bank they told her that they don’t have fax machines or supervisors there!!! Can you believe that a multi-national, multibillion dollar bank can’t afford a $100 fax machine? As I said I think we will be changing banks. In spite of this, we are getting back on our feet now.
Most of the rest of the time I have been grilling or dinners and helping to take care of Lexi. I have been taking her down to the playground at Red Bank Battle Field just a few miles from us. This little girl really knows how to wear out her Opa! But I would not trade it for the world. Today we did a three mile walk for Autism Speaks as part of Lexi’s Ladybugs. About half way through it really started to wear on me because I get tired so easy but I push through and also pushed Paula through. We support each other. The two of us are a team that keeps each other going. Anyway, it was great to see so many people there walking for Autism. There were even a group of Firefighters who did the whole thing in full turn-out gear. Tanks and all. What do you expect from people who put others first? Thanks to all.
So, how is my health doing? I am doing well! As I said, I do get tired faster than before the cancer, but I just push through or I rest for a few minutes and then push through. One of the problems that I am having is with the hormones. I had the shot back in July but it seems to be really hitting me now. I am “hot flashing” like you would not believe. It seems like I am wet all the time from sweat. Also my emotions are right on the surface and I am ready to cry all the time. For example; today when I saw the firefighters gearing up for the walk I started to cry because of what they were willing to do. Now is that any reason to cry? NO! But I do! It can be very embarrassing. I am glad my glasses turn dark in the sun! Oh, there I go again, tearing up just reading over this!
Another thing that is getting me is that my memory is not what it was. Today and friend of Bridget’s joined the walk. We were introducing ourselves and she already knew me. Turns out she was a friend of Bridget’s in high school and hung around in that group. I could not and cannot remember her. I try to remember names and I keep forgetting them while I am talking about them. I was just looking through my old High School year book and as I went through the pages, there was about half of the class I could not remember. These are also ones who signed my book! I keep kidding about it, saying that my brain has been radiated and shot full of hormones. But, it is starting to worry me. I have always remember people even when they don’t remember me. Is it really the radiation and hormones doing it? Or is it something else? Is it just that I am thinking of too many things at once or just don’t care to remember things anymore? I know I have not slept well for over the past 30 plus years, could that have something to do with my memory? I just don’t know!!! Nevertheless, I am going to have to find out. I really don’t like this feeling.
So, until next time, if I remember…
Wednesday, October 9, 2013
This is a short posting but it is something I have been thinking about. Since I was told that I had cancer I have become so very aware of anything that has to do with cancer. I rejoice when I hear of those who win the battle and I grieve when I hear of someone who loses the battle with cancer (Rest in Peace Woodbury Fire Chief Bill Wakeman) and I get upset seeing these ads for cancer treatments. I have noticed lately that you see ads telling women to get mammograms, and to see their doctors for check-ups. This is good, but what do I see for men? Not to get checked but to take this over the counter stuff so that you don’t go to the bathroom as much. Also you see the OTC ads for testosterone helper or something to help men with their sex lives. Then later you see ads for cancer treatment.
What I am getting at is that women are pushed for early detection and/or prevention of cancer, which they should. But, men are pushed to just ignore problems with their prostrate or colon until it is too late. Men are not told to get their PSAs checked. All it is, is a blood test! And there are even people in the government that is trying to limit that.
Look men, I understand it is not a pleasant thing to think about, let alone talk about it, but we must. Look women have been thinking and talking about breast cancer for year. And women have learned that just because they have had breast cancer or any other type of cancer it does not make them any less of a woman. Think about it men, if the woman you love has had cancer do you look at her as any less of a woman? I don’t think so. It is the same thing with you! Get you PSA checked. If it is high and turns out you have cancer you can catch it early before in involves other organs and bones. And you will not be any less of a man. The woman you love and who loves you will not love you less. In fact this cancer that I had has brought my wife and me a lot closer. We have survived this battle together. The thing that made it better for me was that it was caught early and is now in total remission.
So men, show cancer who is the real boss and tell your doctor that you want your PSA tested and get it tested every year. You might think that you are too young for it but I now know of men in their 40’s who are getting cancer. Do it for you and do it for your family, you will not regret it.
Until next time
Tuesday, October 21, 2013
A Little Offending
Time really seems to fly by. I have been meaning to post on here but two weeks fly by before I know it.
Like I talked about a few posting ago, I am having a battle with the hormones. However, first let me set the record straight here. When I say that I had a hormone shot, it is not estragon or any other female hormone. What I am getting is Anti neoplastic. Anti neoplastic is a hormone that blocks the production of testosterone. Prostate cancer feeds off of testosterone. In the old days before they discovered Anti neoplastic they use to castrate the men to keep the cancer from spreading. So this is like a chemical castration. Consequently, without the testosterone being produced I am going through much of what women go through when their bodies stop producing estrogen. The think the reason I am having a hard time dealing with this right now is because I got this shot back in July and it is now really hitting me hard. The other day I was sitting outside in shorts and polo shirt with the wind blowing and the temperature at 70 degrees. I was sweating like you would not believe. My emotions have been ready to burst at any moment, I go from being very angry, to very happy to crying for no reason. I also have a hard time sleeping at night, night sweats, headaches, and even bloating!!! Let me see I think that is it… oh yah, like I said before I am having problems with memory! Oh, Ladies, Ladies, Ladies!!! I understand so much more now!
Paula and I were talking about this the other night. And our discussion was very frank. She was telling me things that women don’t normally discuss with men. Why don’t they talk to men about it? Because, men just don’t understand what women do go through. Those who know me know that I feel that everybody is equal no matter what. And I also feel that everyone should be treated the same. However, I really doubt that there will ever be lack of prejudice between the sexes. Now Ladies wait a minute let me finish!!! What I am talking about is because of the physical differences. No, I am not saying one is better than the other just different. Men just don’t understand what takes place in the female body that affects the way women reacts to things and women just do not understand the things happening in a man’s body that affects the way a man reacts to things. Men don’t put up with the changes that women have from puberty through menopause. These changes take place every month and sometimes it is very bad. This will affect a woman’s response to things just like extreme pain will effect a man’s reactions. But, men, because of the testosterone, tend to handle things with more aggression and will tend toward trying to fix something or hitting it. Now I am making some extreme generalizations here but I think you get my point. Therefore, going back to my original statement about lack of prejudice between the sexes, I would like to draw you attention to common discussions by groups of women about men having no clue and that they don’t understand why men do what they do (that is in some very general, nice words). And groups of men say that they don’t understand why women do what they do (again in some very general, nice words). I have been in situations where I was the only male in the setting as well as in all male settings, and through my observations; do you know what I found out? They are both right! An old saying goes that you never understand a man until you walk a mile in his shoes. Well, in this case that will never happen between men and women. The best we can do is take time to try to understand each other and try to remember what the other is going through. Right now I am understanding menopause very well and I think I understand what many women have gone, are going, and will go through. But I don’t recommend this for everyone because menopause is hell.
Until next time, I will try offend less people.
Tuesday, November 19, 2013
Well it has been since October, 21 thatI last wrote. This might not be too great since I am so tired and have my normal November Cold. It is amazing that my body is so tuned to the seasons that I still get my major colds in November and March. There are so many reasons for me to not like November and getting a cold every November is one.
First off, I would like to tell you about something that I do like about November. Tomorrow, November 20, 2013, is celebrating the greatest gift Paula ever gave me. Her name is Bridget. I missed out on a lot of Bridget’s earlier life but was able to be there for her during adolescence and her high school and college years. She is a wonderful, intelligent, loving, caring and giving woman whose highest priority is to change the world just a little bit in order to make it a better place to live. I wish that there was so much more I could do for her, her husband and her wonderful daughter. Happy Birthday Honey! I am so proud of you and love you.
Next up is something that is not so pleasant. The hormone shots have been playing havoc with me. Hot, Cold, Sweating, Angry, Maudlin, Tired, and totally lacking any energy. This is playing hard on Paula and me and we have discussed it many times. Nevertheless when the emotions kick in it is like I’m sitting on the side watching someone else going crazy with no ability to stop it. Sometimes I feel like I should be locked-up way from everyone. But, then my wonderful Paula takes my hand, stroking it talking to me and listening to me. She will massage my back and shoulders or stroke and play with my hair. This will calm me down, but then I feel so bad for my craziness.
As many of you know I have not had the easiest of lives. However, with the grace of God I have survived things caused by my own stupidity, or situations that have been thrust upon me. But, this past year has been the worst! My finances have hit rock bottom, and I have been having difficulty keeping up on my bills, thankfully that is coming to an end now and I am grateful to all the local business that have understood and been patient with me. The other thing that has made this year so bad is that, tomorrow, November 20th, marks one year since I was told I have cancer. I still can’t write or say the world without crying. Oh, I have gone through the radiation treatments and taken the hormone shots and the cancer is contained, or as some say “in regression. But, I still have the cancer and we don’t expect to see it pop up for at least another 20 years, however it is still there and that little voice in the back of my head still shouts out “you have cancer!” And then there is still the side-effects of the shots which I listed above along with weight gain. Just what I need… another reason for my body to gain weight!!! And there is also the bathroom issues. I have to urinate a lot. Everywhere I go I got to be near a bathroom or if I know I will not be near one for a while I need to slip on a diaper. Believe me it is not pleasant. Far from it!!! Also I have to find a bathroom with even the tiniest of inkling that I might need to go soon or everything becomes wet trying to get to the” loo” as the British say
My friends, I am 62. That is old to some but not really old, especially to some of my friends in their 80’s and 90’s. Nevertheless, I never thought that I would be going through what I have been through this past year. Paula and I are praying thatt his year turns out better for once.
Until Next Time
Saturday January 11, 2014
I guess I should start off this entry with Happy Thanksgiving, Happy Hanukkah, Merry Christmas, Happy Kwanzaa, Happy Boxing Day, and Happy New Year! (If I forgot anything forgive me and have a happy whatever,) It has been a while since I have had time to sit down to write or even want to write. So, let’s get down to business.
I had my 6 month blood test in the middle of December and got the results back at the end of December. My PSA was still 0.1. And this Tuesday, January 14th, I go back to see Dr. Orth. I will be getting another hormone shot and I really do hope that it is my last. I guess that my next blood test, which should be in June, will decide if it is or isn’t. I am getting tired of the shots and how they make me feel. I am tired of the hot flashes, depression, mood swings, the sleeplessness, the feeling of being tired, the lack of ambition and crying jags for no reason!!! I know ladies, you are sitting there laughing at me. I have been going through this for over a year now and enough is enough. I guess I will be having it for at least six more months so I should be use to it. Oh well, at least the PSA is good!
Things have not been going the greatest for me and as I stated before, I am having a real problem with people and being around people right now. Some of it is me, I know, but most of it is people being people. Recently I have had friends turn on me, which really threw me for a loop because I did not really see it coming. Another is someone is dragging me to court because we had a three minute disagreement with them doing all the yelling. Court was canceled once because of the weather after I traveled for an hour in the snow and now it is moved to the beginning of February. This has me very upset because it should never have taken place and it is a waste of my time and the court’s time.
The thing I am having more problems with that is because of me, is that, since my treatments, I cannot stand to be around groups of people and have found that I am tending to be very claustrophobic. I hate spending so much time inside now. And where we live is just feeling very crowded to me. Today I took a ride through Swedesboro and out into Salem County. Big open fields, a lot of farms and open land. Even though the windows to the truck were closed it was like I could breathe again. I even opened the windows to let the air blow through the cab. What a feeling!!! Now, I have always loved the openness of Salem County and even loved it in Gloucester County just a few years ago, but Gloucester County has become just one big housing development. It seems like people think it is evil if a piece of land does not have a house on it. But now, it seems like these feelings are getting so worse than I have ever had. I am starting to think that maybe I should find someone professional to talk to about it. I don’t know… That all cost money and there are so many other things that are more important, or interesting, to spend it on or use the money to do something that will help more than just me. I guess I have to think about that more. Therefore, if you see me screaming my way down Kings Highway toward Salem County you will know that it all just got to be too much for me!
Until next time
February 11, 2014
I’ve Been Shot… Again!
February 11th! I can’t believe that it has been a month since I have written. So much has been happening. I have resigned my position at South Jersey Christian Academy and I have resolved the court mediation case that was connected to South Jersey Christian Academy. I don’t want to get into all of that here; however, suffice it to say that things were just not right there for me anymore.
What about my health? A lot has been happening. If you remember last time I said that my six month PSA came back as 0.1 again and that I was hoping that this visit to Dr. Orth would be my last visit to get a hormone shot. On January 10th and 12th I was hit with unbelievable pain in my right kidney. One Sunday the 12th, Paula took me to the emergency room and I was shot up with all sorts of pain medication because I had a 5mm kidney stone. I was sent home with some very strong pain medication and ordered to see my urologist. That was easy to do because I was set to see him on Tuesday the 14th anyway. I walked into Dr. Orth’s office and when I said I had a kidney stone, he jumped up, went and got to records and films from the emergency room (they are in the same network) and said we have to blast that thing!!! So they set up a date to have it blasted, the following Monday, and gave me more medication.
There I am trying to get things done while in pain and being goofy because of the medication. Then late on Friday I get a call from my primary Doctor saying that they will not allow the blasting take place until I am cleared by a Cardiologist. I now can’t get a hold of anyone because it is late on a Friday!!! So, now I am spending another weekend in pain. I get through to my Doctor’s office on Monday and they make me come in to make an appointment with a cardiologist. The first appointment I can get is on Thursday.
On Thursday I go to the Cardiologist and he does clear me but because I am Diabetic, have high blood pressure, over weight and have family history of heart problems, now I have to get an echo cardiogram and stress test after they take care of the stone. I said okay and since he was in the same building as Dr. Orth, I went right up-stairs and set up for the stone blasting.
If you have not had a stone blasted, it is called Lithotripsy, it is a blast! They have what they are calling “A Stone Blasting Center.” And that is all they do there for various Urologist. You go in and they prep you by hooking up an IV and EKG leads. You go in and lay down on a table in a machine that looks like an x-ray machine. They bring the head down to press against your belly and then the next thing you know they are waking you up. You have a big red mark on your belly and you feel like you have been kicked in the kidney, many times. For me it was 2,500 times in fact. The people at the center were great and very kind and attentive. When I was awake enough they sent me home with Paula, with scripts of more pain pills and a cup/strainer to urinate into in order to catch the pieces of stone as I pass them so they can analyze them. Now this was the fun part. The cup was like those old collapsible drinking cups we use to have. But, this was made of plastic with a screen on the bottom. Urinating into this was one thing but the stinking thing kept coming apart and I would have to fish it out of the toilet. After the fifth time of fishing it out of the toilet I gave up. I had a few pieces of the stone and I was calling it quits at that point.
So, that brings us to today. I went to see Dr. Orth and he said that the stone is gone! I do feel a lot better. And he is very happy with my PSA reading. BUT, I will still need the shots. So I was shot again today. He did say that maybe we could stop the shots for a few years after the next one but will have to start them again in about ten years. It looks like I will have the longest menopause in the history of manhood. Wait a minute! What about the cardiologist? Well, I have been practicing for this stress test over the last few weeks with all this snow we have been getting. However, I go for this starting tomorrow. It will go over two days. Tomorrow afternoon I go for a resting scan. From what I read they inject me with radioactive dye and take pictures of my heart. Then on Thursday I go back and they inject me again taking the echo cardiogram and then give me more dye to have chemically induced stress like running on a treadmill and take more pictures. Thursday should take about four hours they say. That is if the snow will let me do this on Thursday!
Therefore, to me, all of this goes to show that Rosanna Rosannadanna was right, it is always something!
Oh! By the way. Paula now needs a lot of dental work done. So I get to take care of her!
Until next time
March 18, 2014
I have fallen way behind in keeping this blog up to date. As I have said last time, a lot of things are happening and for some reason I just don’t seem to have time to do everything that I want to do. I am at the point where I am fully retired from teaching except for working with my wonderful Granddaughter Lexi. Every day we are together we take time to work on vocabulary words. I really never worked with someone so young before but she is so willing to learn that it is a pleasure. Speaking of Lexi, my wife Paula and I take care of her three day per week. She does take a lot of work, as any four year old does and Paula and I are tired at the end of the day, but as soon as she walks out that door with our daughter, her mother, we miss her. It is funny how a child can do that.
You get the idea that I have been very busy and as soon as this weather breaks I will be getting busier. I am really looking forward to working in the yard and already have seeds started and others ready to plant. Being inside all this time has not helped in the depression department for me. I am trying to get out as much as I can to get some sun, but then again the weather has really been a hindrance to doing that. Therefore, that brings us to the health department and my battle with the cancer.
As I wrote last time, I received my third hormone shot after we took care of the kidney stone. As a reminder, when I talk about “hormone shot” I am not getting hormones as such. The shot blocks the testosterone which feeds the prostate cancer. Now I have explained the side effects of this before so I will not go into it here. However, I would like to make a few notes about them. First off the side effects don’t start right away. They start about a month after the shot. Second, you never know when they will hit. Earlier this month, Paula went to a play at the Walnut Street Theater in Philly. Everything was great; we had a good meal with a friend and were ready for a good play. Well, about a half hour into the play the hot flashes started and started hard. We had to leave the theater because I thought I was ready to pass out. That is just one example, and one side effect. Sometimes the side effects can be very embarrassing. I was playing in the pit of Godspell. The music I was using was written for electric bass, so since I play double bass I have to augment the music to fit the bass. If you know Godspell, you will know that some of the music is very beautiful. Well one night I really got into the music and my emotions went crazy. At the end of the show I could only sit there on my stool. Then one of the band member asked if I was alright and all I could do was bust out crying. I know that I will be having problems with my emotions but it is one thing for it to happen when I am along or with my wife who understands. But in front of others it is different. The band members that were there were very gracious and shared with me. But, after all I am a MAN and I am not supposed to do that. Boy, am I finding out so many different things. Yes I am a man that has been told by many women that now I understand what they go through! I do try to understand what others feel and go through so I guess that is good.
Today is kind of a celebration in a weird way. One year ago today I started my radiation treatments. These treatments have left a lasting impression on me in good and mostly bad ways. First, they have taken my PSA way down. I have friends who have had the operation to remove the prostate and their PSA is the same as mine. That is the good part. The rest starts out with the bathroom being a very familiar room to me. And I know where almost all public restrooms around very well. Whereas that is a real pain, especially at 3:00 and 5:00 in the morning, I think the worst part is I have become very claustrophobic. Where I never liked being in small places, now I can’t stand be closed in or being around a lot of people. Last month I had to have a stress test and echo cartogram and being in some of those machines and getting x-rays really makes me feel like I am going to freak out. But, you know? I keep thinking that at least it got the cancer under control. I guess that is good. However, if you see me speeding down Kings Highway toward the wilds of Salem County screaming the whole way you will know that I totally lost it being around so many people.
Until next time
March 18, 2014
Having A Different Look
About a year and a quarter ago, when I was talking with Dr. Orth about the course of treatment for my cancer, we discussed the final route that I did take of radiation and hormone treatment. As I investigated the side-effects of each I also talked with him about all of them. Finally I asked him; “At least will I get to the point where I don’t have to shave?” He laughed and said that he hates shaving too. And yes my beard will grow slower and slower over time. I asked this of him because anyone who knows me knows that I really, really, hate shaving. However, I also hate having facial hair. Now I know that I am luckier than most men because, naturally, I only had to shave every other day or more. I never had a heavy beard.
This morning while I was showering and shaving, I noticed that even though I have not shaved since Monday, I could get by without saving for another day or two. Maybe I could even get by even longer. Then the thought hit me that there are women, and this is not to be critical of them, that have to shave not only their legs but also their chins even more than I do. As in all things… it all depends how you look at it.
Until next time
Friday May 23, 2014
Well, it has been over two months since I have written in this blog. Why haven’t I been writing? The answer to that question is and old answer… I have been very busy. I started very early this year with the garden. I started in the end of March planting Beans and Peas. By the beginning of April I built a raised bed out of cedar and got it into the ground. Then I filled it with A LOT of dirt from my compost pile that I have been building for over 20 years. Started to clean up the yard from the rough winter we had and waiting for the last frost of the year to be over with. During the week of April 14 I went to a local green house and bought tomato plants and lettuce plants. I was all ready to plant them the week after Easter. Then IT hit!!! I was mowing the front lawn the day before Easter and my back was hurting some. Not a big thing, my back has hurt on and off for most of my life. When I was done cutting and before I started to clean up, I sat down to rest for a while. When I went to get up I could just barely walk. So I got most of everything cleaned up and struggled into the house. I took a shower, letting the hot water beat on my lower back for a long time. I felt a little better and then went to sit and watch some TV. Well, Paula took care of me again and I did not move much, when I did the pain to so bad that I could hardly walk. After a sleepless night, when Paula got up I told her to take me to the ER.
What fun! Spending Easter morning in the ER!!! After many hours, X-rays and CT Scans, They came in and said that my lower lumbar is degenerated, with arthritis, bulging disk and a Lumbosacral strain! Oh, great!!! I messed up my back when I was a teenager but though that I built it up enough over the years. Well, guess not! So more pain pills, muscle relaxers, and steroids, and go to a back doctor!! Therefore I start to push things again, not hard but, trying to do something outside. The next Sunday I wake up with a sore neck. Okay, so I slept wrong. Monday it was still sore but stiffer. By Monday afternoon I was spasms in my neck that was putting me down on the ground and causing me to cry. Back to the ER!!! I walked into the ER and a spasm hit me and put me on the floor again. They got me into a wheelchair and took my information. Well, they got me back, give me a shot and some meds to stop the spasms. They said I had Torticollis, which is having spasms for no reason, and Degenerative Joint Disease. Great I have blown out my back and my neck and have arthritis in both. They also said to go see an orthopedist.
Well, I called the orthopedist that took care of my knees. Now, I have not been to see Dr. Maslow in over ten years. I walk into the office and it is as if time has stood still. The entire office staff and assistants are the same and have not changed at all outside of being a little older. WOW!!! They saw me and remembered me and they all took care of me like they always have. And Dr. Maslow has not changed. He listened to me, and examined me. He said he is worried about my lower back because of the cancer. The cancer and treatments might have weakened the bones and muscles. So he wants MRI done of the neck and lumbar. That will be next week.
That brings me back to the gardens and yard. I have someone coming in every two weeks to cut the grass, but I am working the gardens a little at a time. I have been harvesting lettuce for lunches. There is nothing better than eating what you have grown. The gardens are doing well and do hope to harvest even more things as we get into June.
Earlier I told you that I have just been too busy to write. That is partly true. The other reason is that I have been having some very low days. I wanted to write but just could not make the words flow. Nor did I really care about it. I know that the hormone shots have really been taking a toll on me this time but it seems like there is something else wrong and I just can’t put my finger on it. My moods have been very dark. I try to cheer up and Paula and Lexi do all they can to cheer me up, and I respond well. However, when I am alone I seem to go even deeper than before. It is kind of funny because I don’t want to be around a lot of people but when I am along … well, you get the idea.
Maybe I need to change family doctors because I am not happy with the one I have now. I can’t seem to talk with him about anything without him telling me that I got to lose weight. Look I know I am fat and if I could lose weight don’t you think I would? So, if anyone has any suggestions please let me know.
Well, until next time, maybe I will be doing better
Thursday August 14, 2014
Shot Another Time
Okay, the last time I posted was in May and now it is August. It just seems that I am running out of day and energy to get things done. When I retired I thought that I would do things that I wanted to do but never had the time to do. That is what I THOUGHT!!! There are so many things happening in my life, but I really don’t want to go into them here. This blog was set up as my record of my thoughts, feelings, and procedures, on this road I am on in fighting cancer. Sometimes I have gone off the track and wrote about other things in my life but on the most part I have tried to stay on the cancer trail. So let’s see what has been happening.
This past Tuesday, the 12th of August, I saw Dr. Orth, my urologist. My PSA has risen a little to a 0.2 which he said is expected. He was happy with my reports which included reports on the Kidney Stone, which is nowhere to be seen now. I know that has nothing to do with the cancer but to me it is all together. We then discussed the hormone shots that I have been getting every six months. He told me that we could take a “holiday” from the shots but in a few years I will have to go back on them again. I told Dr. Orth that this cancer really does scare me. He then abruptly said that we should just continue them then. He also said that if this will ease my mind some that we should continue. There are studies and reports supporting both continuing the shots and discontinuing them. Dr. Orth then said that the biggest thing in fighting cancer is the mind set. If there is something that can ease your mind and make you little easier we should do it. My thoughts are that yes, I get all the side effects like I am in menopause for about two months, but I can live with that. Really!!! So I am going to keep getting the hormone shots every six months from now one I guess. Lately, with the death of Robin Williams there has been a lot of discussion in the media and on social media about depression. Those of you who know me, know that I have not had the easiest of lives. Through a large portion of my life I have battled depression. I think that is one reason I am a musician, because I can release these feelings with my music and hear the beauty that chases the darkness away. However, when I found out that I had cancer I went into a darkness where there was no light. I felt that my life was done. That was one reason I started on the Scotch that night in November 2012. I felt that would end it all. I kept telling Paula to find someone else. What pulled me through was the grace of God and my loving wife Paula. She was there for me all the way and during the worst of times she was there holding me as I cried my heart out.
Those of you who are reading this that have cancer, know one thing you are not alone. There is always a way out, there is always someone who does love you. Those of you who are friends and/or family of someone with cancer, be there for them, listen to them, let them know you care and will be there for them. And when they start to cry, hold them, let them cry and tell them that you love them. Cancer is a terrible disease that also effects the emotions and causes depression. Many people forget about the emotional part of the disease. Please, please don’t you forget. I will never forget when I went to see Dr. Orth at the beginning of my treatments, he came into the room and asked how I was doing. I said I was doing alright. Then he said no “how are you doing? “ as he was pointing at his head. Dr. Orth has got it!!! Do you understand? Please try to.
Until next time
August 28, 2014
I have just been looking over this blog and noticed a few things interesting. First let me tell you that when I write in this blog I first type it out in one long document and then copy and paste it into my web page and into my Facebook Blog page. This blog document now covers over 70 pages since I started and over 38,000 words. I have covered every procedure that has been done to me, all of my thoughts and feelings, good, bad, right or wrong. I have even shared with you things I have done, some I am proud of and some that I am ashamed of. Most of all I have tried to be honest hoping that in doing so I can help someone else who is going through treatment for Cancer. I have tried to explain all the side-effects of the treatments and what I was going through right then. When I started this Blog I stated that it was to be a release for my feelings. I also hoped that it would a help to others going through Cancer treatment generally and Prostate Cancer treatment in particular. Some of my posts have been positive while other were very negative. This journey that I have been on has been very rough physically as well as mentally. However, I have tried to be up-beat even if I did not feel it.
That brings me to what I would like to discuss today. I have always thought that cancer was a horrible disease that no one deserves to get. However, I never thought much of it because I didn’t have it at the time and I “knew” that I was not going to get it! Then came that November day in 2012 when I was told that I had Prostate Cancer. My thinking changed drastically. I was now a member of a special “club” that nobody should belong to. And as I started to tell people that I had Prostate Cancer, the comments that were well meant, and that I probably used myself, started to hit me: “Well, Prostate Cancer is one of the most curable cancers. You will be alright.” That is when it accrued me; people really don’t think that this is a bad Cancer. It can be cured. Hello!!! The cure is cutting out part of me, and I end up having a lot of other problems. What kind of cure is it when you lose part of your body? Cancer is Cancer no matter where it is in the body and how well it can be cut out. I elected to have radiation and hormone treatments. That means that the Cancer stays with me but we keep it contained. It is not easy living with it because it is always in the back of your mind. However, the thing that kind-of gets me up set is the way people rate Cancers. “Well, now your Cancer is not too bad.” “You can get that Cancer cut out!” Or “You can just get that Cancer zapped and you will be alright!” Let me tell you that it is not that simple. Cancer affects your whole body and mind. Things start happening to your body that you never thought would happen. You have thoughts that you never had before. Over time most people who have Cancer become stronger and fight their way through these changes. But, that is not always the case. Some people never get that strength and they give up. What do you say to them? “Well, you are alright without the prostate. At least you are living.” You are alright without your breast. At least you are living.” “You are alright without part of your colon. At least you are living.” And so on and so on. No it is not alright without part of your body. When it is gone you do miss it!!!
So, what is my point? When someone tells you that they have Cancer, no matter what type it is, do not trivialize it by saying; “Well, it is a very curable Cancer.” Cancer is Cancer and it is changing that person’s life forever. In fact Cancer can take that person’s life at any time. So, please, when someone tells you that they have Cancer, realize that they scared, if they admit it or not, and need you support not you telling them that their Cancer is not bad.
Until next time
Thursday, September 25, 2014
It has been almost a month again since I last posted. There have not been a lot of changes since the last two postings. I was thinking though, that I got my last shot about a month ago and this time this shot really affected me fast. If you would remember I said that normally when I get a new hormone shot that I will have about a month and a half to two months before I start feeling the full effects of the hormones. Then I will put up with all of the side effects for about two months and then go two months feeling like myself again. Well, this time I got not only the hot flashes right away but also the moodiness, depression, tiredness, low ambition and a lot of anger. However, I really don’t think I can blame it all on the hormone shots this time.
The first thing that adds to my ills is, I think, a result of the radiation. I really do think that they got my colon some because I am really having a problem with going all the time. When you spend the better part of the day in the bathroom it does have a tendency to depress you some.
The second thing that adds to my ills is my diabetes. I was doing good and had it well under control but since my radiation my sugar has been climbing. In fact it has been so out of control that the doctor has put me on the needle once per day along with all the rest of my medications. To say that I am not happy about that is a very gross understatement. I hate giving myself needles as it is and doing this is very tough for me.
So what am I saying at this point about the cancer. Well… I am questioning if I did the right thing electing for radiation and hormone treatments as compared to having surgery. I really did not want to go under any kind of surgery again if I did not have to. And with the radiation I really did not have any down time. I was still able to do thing just slower. However, with all these other things happening after the radiation… I just don’t know. If/when the cancer becomes active again I will not have the surgery option open to me again. I just don’t know!
This blog is supposed to help others that are going through what I have and am going through. What can I say to anyone who is just starting their journey with cancer? Just that you have to look at all the options offered and go after that cancer with everything that is open to you. I cannot tell you what you should do. You have to decide what is best for you. Would I do what I did again if I had it to do over? A year ago I would have said yes, but now I just don’t know.
I know that I am ending this entry with more questions than before, but these are things that go through my mind. Cancer will always be tucked away in the dark corners of my mind and does come forward often. But, there is one thing I do know, I have survived cancer and I will continue to fight it for as long as I can.
Until next time
Wednesday, November, 12, 2014
I AM TIRED! Do you hear me? I AM TIRED!!!
I am tired of having cancer. Why did I have to get cancer? Sure my prostrate has been radiated, and I am getting hormone shots every six months. They tell me what they will do, not IF the cancer becomes active again, but WHEN the cancer becomes active again. How would you like living under the Sword of Damocles? It is not if the sword falls it is when the sword falls. That is not fun at all. I am tired of that sword!
I am tired of having High Blood Pressure. I am tired of having loads of medicines that I have to pay my with right arm, just to pay the co-pay. And then the top of my head still feels like it will blow off at any second. Before the radiation and the kidney stone, I had my Blood Pressure under control. Now it is out of control. I feel nervous all the time, my head aches a lot of the time, my neck is also hurting and stiff. I am tired of my head blowing off!
I am tired of having Diabetes. I am tired not being able to eat the things I enjoy. Every cooking program shows you how to make wonderful dishes that are loaded with sugar. I am tired of the medicines. “Here take these pills they will make you sugar go down. What do you mean they will not let you leave the bathroom because you keep pooping all the time?” “Well, than take these pills that should do away with the pooping! What do you mean you can’t pass a bathroom because you have to pee all the time? And you keep peeing yourself? Well then get some diapers!” “Still can’t get your sugar down? Then here stick yourself with these needles. The will not hurt.” Don’t you believe it!!! They hurt!!! My sugar started to go wild after Radiation again. Yah, nothing will change! I am tired of these changes because of radiation.
I am tired of the arthritis! I am tired of all the pain I have in my joints and it seems like nobody cares. I go to the doctors’ and they just say; “well you just have arthritis. That’s nothing to get excited about!” They give me more pills that don’t really touch the pain. My strong hands that I play my Double Bass with are hurting all the time and I have trouble picking up things and holding them. I am tired of the pain and lack of movement.
I am tired of doctors looking for things wrong with me. “Well, now you might have had a heart attack. We better go in and look at it!” WHAT!!!! If I had a heart attack I would have known it and you would be the next person to know it! “Well, you have Sleep apnea! We got to test you and have you buy and wear all this junk at night so you can sleep!” First of all, with all that junk on me I will not be sleeping. Secondly, I worked shift work for years and it wrecked my sleeping patterns. They are just finding this out now that if you work shift work you could wreck you sleep for the rest of your life. Mine was wrecked!!! I am tired of doctors!
With all of this tiredness you would think that I could just lay down anywhere and sleep. Well it doesn’t happen that way. Take tonight for example, I was so tired that I was falling asleep earlier in the day, but I stayed awake. Then tonight when I was getting ready for bed I took a sleeping pill. Well, you see how much good that did. Sometimes I just wish that I could go to sleep and just keep right on sleeping. Oh, don’t worry about me that way. I have seen that darkness and I don’t want to see it again. And I love my family too much. I will not give up!
So, what does it come down to? It is 1:30 in the morning and I AM TIRED! I guess I just have to keep on going even though I am tired. That is because not all of my tiredness is physical and there is no way to get rest for the other type.
Until next time
Saturday, December 13, 2014
Well, another month has gone by and I am just getting to this again. My last entry was kind of negative. KIND OF NEGATIVE??? Heck it was big time negative. I was going through a rough patch and everything was getting to me. I have days like that where everything piles up and it is all released at once. And one month ago it let loose in the middle of the night. But, right now I’m not doing badly. My emotions are not going crazy and I have been working on my guitar and arranging some music for the guitar. Music is very special to me on many different levels. However, I am not going into that here. I will write about that in my other blog “Random Thoughts of James Krauss” which is also on Facebook.
So, let’s get down to what we are suppose to discuss here, the Cancer! As I said I have been having a rough time this time around with the hormone shots. Where it normally takes about a month and a half to two months to take effect, this time it came in right away. And normally it only last for about two months, this time I am feeling the effects right straight through. So I have been moody, emotional, sleepless, having night sweats and hot flashes almost all the time. Along with that my blood pressure and blood sugar has been going crazy and the arthritis is hurting a lot. I know I am driving my wife nuts but I just can’t help it. I can’t even stay in bed for more than a few hours at a time.
Now, there was something very good that did happen. My high school class of 1969 from Deptford Township had a class reunion on black Friday. Forty-five years! Do you believe that? I have a hard time believing it. Anyway, I was able to talk to a lot of old friends from my high school days and catch up with what they are doing. One friend that I have been in contact with was Gary Troughton. Gary is a fellow Cancer survivor. He did not have the same cancer as I did, his was in the throat. But, we were able to talk and share our experiences. We were also able to encourage each other. I think this is something that I need to do more. Because when I encourage someone else I get encouraged.
Therefore, I am going to close with that thought. Who have you encouraged today? Try to encourage someone each day and I think you will find encouragement for yourself.
Until Next time
Sunday, January 4, 2015
Last night, Paula, my wife, and I went to see the Musical “Mary Poppins” at the Walnut Street Theater in Philadelphia. It was a wonderful show with great dancing, singing and just plain fun. However, as I was reading the Play Bill, I took particular notice of the short biography of the actress that was playing Mrs. Banks. The actress has been in 13 productions at the Walnut and listed some of them in the short biography. Then she wrote that the greatest gift she received in 2014 was to be told that she was cancer free! WOW!!! What a great gift!!!
You know, the funny thing about cancer is that once you are told you have it, your whole attitude changes. Things that you did not notice before you now notice. Also many things that you are used to seeing look different, and you see the beauty in everyday things that you did not see before. Another thing that I find interesting is that there seems to be a connection or a bond if you will, with others that have also fought the cancer battle or are fighting it now. You rejoice with those who have been declared cancer free, and you greave for those who have lost the battle. When you meet someone and are told that he or she has been fighting the battle also there is a bond established because you both have gone through many of the same things no matter what type of cancer either of you had. Both of you have experienced the same emotions, the same ups and down, The same joys and depression and the same fear of death. When you first meet someone who has fought the fight the first question you ask each other is, “where is your cancer!” Or “What type of cancer do you have. Then you start to share what you have been through while the other is shaking their head having been through the same thing. Many people who have not had cancer will think that this is crazy to be reliving this tragic part of our lives, but it is an important thing to do in order to encourage each other.
Do you know why all of this is so? It is that we have cheated death. It doesn’t matter if we were close to death or not, we cheated death this time! We understand our mortality, our finite existence. We stopped thinking that we are immortal, that death is far away from us. We now really know that we are here but for a short time, so we try to make the best of what time we have.
In closing I would like to say to that actress, whose name is Rebecca Robbins, and to all who have survived cancer, Bravo!!! You have fought a good fight. Now enjoy what you fought for. Make every moment special.
Until next time
February, 20, 201
I know, it has been more than a month since I have written, but then again I received some news about as month ago that I did not really want to talk about until I talked with my Doctor. As I have reported before I am continuing my cancer treatment by having a blood test for the PSA levels and them receiving a hormone shot every six months. If you will remember that the results for by PSAs after my radiation treatment have been 0.1, 0.1, and 0.2. However, the result this time was 0.7. Now, in a person who has never had cancer that is a wonderful reading. The ideal reading would be a 2.0 but no higher than 4.0. I went from a 2.0 in June of 2011 to 9.0 in June of 2012 to 18 in November of 2012. That is where my cancer journey started.
So what am I worried about with a 0.7 reading now? Well, that jump is in six months. I saw Dr. Orth this past Tuesday, and as we were talking he told me he was sitting outside of the room I was in, for a while, thinking of what to say to me. As he put it, after the radiation and the continual hormone shots he would expect to see a bump here and there but it should still be negligible. Meaning that reading should still be down to 0.01 or 0.2.
So what do we do? The first thing he said is that we should not stop the hormone shots, so at that point he picked up the needle and said; “drop them!” So I dropped my pants and leaned over the table and took it in the end! And we continued to talk. Interesting situation I was in at that point! Well, you know me and Dr. Orth knows me by now, if I find something I want to know about I start researching it. I do not mean to go to Wikipedia, I go to Prostate Cancer foundation, The American Cancer Society, and other sites that have article that are peer reviewed so that I can get the real information. I told Dr. Orth what I read and he agreed with it very much. We retest in three months instead of six months, using the same lab. Then see if a pattern is developing or if it was just a fluke.
What do we do if the readings keep rising? From what Dr. Orth has said and from my reading, there are many more treatments that we can use that range from more radiation, surgery, and different types of hormone treatments that will work on shutting down the Androgen producing cells. Androgen is what fuels the growth and spread of prostrate cancer.
I think the worst thing about having any disease is the waiting time between testing, treatment, testing. I know my wife and every woman goes through this with mammograms, and it can drive you up a wall waiting for the results. That is where I am now, playing the waiting game! So, if you hear from me or see me and I sound irritable, please forgive me. I am in the middle of climbing the walls while I wait for results.
Until next time
May 12, 2015
Well, it has been a while since I have been on here. I am trying to keep my word and only talk about my Cancer Journey, so that is why I have not been writing. In my last entry I talked some about the waiting for results. The waiting continues.
Last time I reported that my PSA reading went up to about 0.6. In someone who has never had prostate cancer that would be a wonderful reading. But I have the cancer, I have been through radiation and hormone shots every six months. My reading should be around 0.1 or 0.2. So, Dr. Orth and I decided to wait three months and get the reading again and then decide what to do.
Now the three months are done and I got my blood test two weeks ago. Then I got the reading one week ago… it went up again! It is now 1.4. Again not high for a normal person, but for me that is high, doubling in a matter of three months. Today I saw Dr. Orth. He said that he is not happy about the reading but he is not really worried yet. He wants to watch it for another three months to see if this raise is a pattern or just one of those flukes that he sees from time to time. Again I have read a lot about a rise of the PSA after radiation and hormone treatment and there are many, many other hormone treatments that we can work with along with other radiation. And there are many new treatments coming out every day. Therefore, there is no real rush to jump into things right now. We will wait and watch and see what is going on.
Another thing that seems to be happening is called sudden incontinence. To put it bluntly I pee myself without any warning that I have to go. This is very embarrassing and it doesn’t happen all the time. Therefore I do not know how to keep it from happening. In fact sometimes it happens when I am trying to get my pants undone! You know???? I think some of these manufactures of men’s pants know this happens and put in more buttons, hooks and snaps so that it takes longer to get your pants undone!!! Yah, I know if it is not you it is funny as anything. But it is me, so it is not funny to me… until I think about it!!! But I digress… Any way… they did an ultrasound to find out that my bladder was empty, which I could have told them, and gave me some medication to try for a month and then go back.
Look I know, incontinence is not the most pleasant thing to be talking about but I promised when I started this blog not to hold anything back about this journey that I am on, even though it is embarrassing. And I will tell you that you don’t know what embarrassing is until you go into the store to get the supplies you need (pads and/or adult diapers) and you take it up to the counter to pay for it and there is this young teenage girl cashier that takes the package and puts it in one of those see through plastic bags that is too small for the package and half of it is hanging out. Then she hands it to you with a metal braces smile saying “have a good day!” You talk about wanting to crawl under the tiles on the floor!
So we will watch, wait and continue to be embarrassed for now.
Until Next Time
August 14, 2015
Well this will not be a long one. I got my results from my blood test from the 5th of August. My PSA was 1.7. Now for someone who has not had prostate cancer that would be great. However, since I have had radiation and get the hormone shots every 6 months it should not be that high. Add to that the fact it has gone up from 1.4 to 1.7 in a little over three months. That is not a great jump that most people would be concerned with but it is setting a pattern. My readings have been, 0.1, 0.1, 0.2, 0.7, 1.4 and now 1.7. That is not looking good. Well, I have an appointment with Dr. Orth next week and hopefully we will do something other than sit a watch. It is driving me out of my mind.
Until Next Week
August 19, 2015
Wait and See
I went to see Dr. Orth yesterday. He was kind of introspective. He said a lot of things so I think what I will do here is list them and then talk about what is happening and some of my feelings.
So what do I do now? I wait and see. Well, that is all and good but that wait part is really getting on my nerves. Oh… and by the way I got my six month shot too, so here I go into those side-effects. Anyway, Doctors seem to be good with this wait and see thing. They just don’t seem to get that it drives the patient totally nuts with the waiting. Your mind does all sorts of things to you and you imagine that every little thing that happens is because of the Cancer. Here I was thinking, okay I got the Cancer, I’ll just do the radiation and get some shots and I will be okay. Some things will change in my body but I can live with that. A lot of people live with that. Dr. Orth did say that the Cancer might come back in about twenty years but by then I will be up in my 80’s and it will take another twenty years to grow to a problem. By then I will most likely not be in this life anymore anyway. However, here it is coming up on three years since I found out that I had the Cancer and it seems like it is rearing its ugly head again.
So… what am I going to do? I guess I will just go on living my life, trying to do as much as my body will allow me.
The other day I said to my wife that maybe I should have had the surgery instead of the radiation. Her response was: “could of, would of, should of!” She is right! No sense looking back at what I should have done. All I can do is take one day at a time and don’t look back at what I should have done.
Until next time
September 24, 2015
Hello again. I am going to break a rule that I set down for myself and talk about something that I don’t know if it has to do with the Cancer or not.
I have been having some problems lately. My feet and legs have been swelling, I have been short of breath, I walk a short distance and my legs feel like I have ran a marathon. Also I have been having some small pains in my chest. They are not something that you call 911 saying you are having a heart attack, but they are still small pains. So I called my cardiologist and made an appointment. I saw him on September 9th and he said that we have to find out what is going on with my heart. Therefore, tomorrow September 25th I go into Inspira Hospital, here in Woodbury, at 7:30 in the morning for cardiac catheterization. To say that I am not too happy about this is a gross understatement!!! I am scared. I went to my GP today and told him about it and he said that I did the right thing. I told him that I am scared and he said there is nothing to be scared about. It is something that is done so commonly now that they really don’t have any problems. Then he said “… of course I’m not the one having it done!” Well, that made me feel great! However, from what I understand from the people I know that have had it done, I should come out of it feeling better. But, if I need to have stents put in, they will ship me over to Lady of Lourdes in Camden. That is not that bad because our daughter, Bridget, is a Social Worker there. And they are one of the top heart hospitals around.
Now, let’s get back to that statement that I made above. I don’t know if it has to do with the Cancer or not. I really don’t know. You see, I am a diabetic, with high blood pressure. Between those two things and the treatment for the Cancer that I have been through, and the six-month shots, that can be a lot on the heart. The cardiologist says that I already had a heart attack, even though I don’t ever remember having one. Was it during my radiation? Was it while I was sleeping? But, I have a big question now… Will I have a heart attack after the catheterization or maybe during it? The questions keep popping up in my head.
Well, I guess we will find out tomorrow. This week has seemed so long. At this point I just want to get it over with. One of my friends told me that I am brave. I really don’t think so. It’s just something I have to go through. There really is nothing else I can do. It is out of my hands and it those of the Doctors and most of all God.
The last thing I will leave you with is: getting older is not for wimps!!! I had the idea that when I retired I would be able to do things I always wanted to do but didn’t have time or money for. I was really fooled… I still don’t have enough money and my time is taken up with all sorts of things like going to Doctors!!!
Until Next Time
September 27, 2015
What Do They Want To Do Now?
So that you all know, I came out of the catheterization good. I have no blocks what-so -ever and all I have from it is two holes, one in my wrist and one in my groin. I'm still a little headachy but non-the-worse for wear. Have to call my cardiologist and see what he wants to do now but I guess I go back to my normal routine and start to get some exercise.
Till Next Time
November 16, 2015
I know it has been a while since I last wrote but I am still in the waiting game. First let us revisit the cardiologist.
Dr. Padder felt that I should have a sleep study done because he thinks I have sleep apathy. I keep telling him that I keep wakening up during the night because I have to go to the bathroom and I am in pain and need to change where I am sleeping. But he did not believe me. So last week I went in for a sleep study. I went in at 9:00 p.m. they hooked me up to 36 sensors all over my body plus Oxygen up my nose and a clip-on sensor on my left index finger. I looked at the tech and said… “You really expect me to sleep with all of this?” Her answer was just a simple, “yes”. Well lights out was just before 11:00 p.m. and I turned over on my left side, like I normally do, and placed my left hand under my head, like I normally do, and tried to sleep. First off, when I turned over it felt like I was wrapping up in the wires. The sensor on my finger was digging into my head and the sensors on my left leg were digging into my leg. I tried to sleep but could not. So, what do I do? Of course I turned over to my right side. Now I didn’t have the sensor on my left hand digging into my head, but the sensors on my right leg was digging into my leg now and I felt like I was getting more and more wrapped up in the wires. Again I tried to sleep but too many things were attached to me and poking into me. So I turned on the TV and figured that I would fall asleep to the TV as normal. After about an hour more I gave up. I just could not go through another six hours of this. So I called the Tech in and said that I was going home. They took all the sensors off of me and I went home. Still had that junk in my hair that they used for the sensors and after I got home I had to take a shower just to try to get most of that glop out of my hair. So that did not work out.
By the way, when I went to get my blood test for my PSA I was able to pit up all of the test they did for my catheterization. My LDL is very low, my HDL is high and my over all was very low. The cardiologists are very disappointed!!!
Okay, so let’s get to the cancer. I picked up the results of the blood test today. My last PSA, if you remember three months ago, was up to 1.7. Which is not bad for someone who does not have cancer, however since I have had radiation treatments and chemo/hormone treatments I should be reading about 0.1 or there about. Well, my PSA came back today as 2.5! Up again!!! I go back to see Dr. Orth tomorrow morning. I don’t know what he is going to say or do but I really don’t want to continue this waiting game. This waiting game is really getting on my nerves, I have a lot of work to do around the house and I just can’t get up the energy to do it. My weight is going up and I can’t seem to bring that down. The hot flashes are driving me nuts and my depression is getting real bad. Something positive needs to be done with this cancer!!!
Okay I am going to close this off right now and I will try to report to you tomorrow about my appointment. I want to leave you with something positive and maybe give you a little laugh; however that is kind of hard right now. How-about thinking of me with all those sensors in my hair, all around my face and shoulders and legs, trying to sleep while getting wrapped up in the wires? That should give a little chuckle or two.
Until next time
November 19, 2015
Starting Our Attack
Okay went to the Urologist the other day. There was a mess up at the lab and he did not get the PSA results. It was a good thing that I pushed on Monday with my GP’s office to get those results. I gave him my copy of the results and he just let out air. He then said this is rising faster than I would have ever thought. As he was typing in to my file I told him that I am kind of tired playing the waiting game with this. It was at that point when I remembered his words from a visit over a year ago. He said then that the cancer will come back and start growing again, but that will not be for another 20 years. As I was remembering this he stopped typing and looked at me and said we are done with the waiting game. He told me that the thing we will do now is choose between three different oral meds or infusion. I had to ask him what infusion was at this point. He said what they do with infusion is take your own plasma put a tag on the cells and pump it back into you. And the tags attack the cancer. However now he is going to give me an oral medication by the name of Xtandi. I will have to take four pills per day and it first has to be approved by my insurance company. So they called it in to my Pharmacy. Dr. Orth said when I get the call from my Pharmacy run right over there and get on the pills.
Okay so I get the call from the Pharmacy and I went right over. They then told me that they could not fill that prescription. It had to come from a special pharmacy. Then I call the insurance company and they transfer me to the special pharmacy. They told me to have the Doctor’s office fax the prescription to them and then they will call me back to arrange shipment. That was yesterday. I have not received as yet a call from them to arrange shipment.
So, what is this Xtandi? From what Dr. Orth told me, it blocks the receptors for the androgen. The androgen is like food for the cancer cells. Xtandi, known as an Antiandrogen, blocks the effects of testosterone or related androgens. If the amounts of androgens are reduced it is possible to slow down or shrink the cancer. I read about some of the side effects and a lot of them I am dealing with now with the 6 month shots. Therefore, nothing new there. There is a chance it will affect my appetite and there might be some weight loss. WEIGHT LOSS???? Hey bring that on!!! Everybody wants me to lose weight so maybe this will literally kill two birds with one stone. Kill the cancer and reduce my weight!!! Well, that seems to be all that I can tell you right now. I will keep you up-to-date on the treatment after I get the meds.
Until next time
November 28, 2015
Hang On, Here Come The Bumpy Ride!
Here we go! The Xtandi came in today. And I took my first dose. I am feeling kind of light headed and goofy right now. I hope to get use to the meds soon so that I can keep going with my life. But there is a whole story about getting these pills.
If you would remember I was at the Doctors on November 17. They sent the prescription for this Xtandi to my pharmacy. My Pharmacy called me and told me that they could not fill my prescription because it has to come from a special pharmacy. So I called my insurance company and they put me in contact with the special pharmacy that they have called Accredo. Accredo told me that the doctor had to fax the prescription to them. Then they gave me their fax number and told me that they will call me when it is ready to ship. I then called my doctor’s office and gave them the fax number. The doctor’s office called me back later and said that they faxed the prescription. Now, this was Wednesday the 18th.
I received no calls the rest of that week except telemarketers, and some of them did not like what they heard from us!!! So come Monday the 23rd I stated calling people. First I called the insurance company since Accredo never gave me a number to call them. I was then hooked up to Accredo where they told me that they never received the prescription. I read back to them the fax number I was given and was told that that was the wrong plan fax number. They then said they were putting in an exception for my regular pharmacy so that they could issue the Xtandi. Alright, now I called my Pharmacy back and told them about it. They said that was very unusual, but okay. Then my Pharmacy called me back later and said that their supplier cannot carry it so it had to come from the manufacturer. They called the manufacturer, and the manufacturer said that they would send it directly to me as soon as the Pharmacy sent them all the insurance information for me and that they would call me when it is ready to ship. Another waiting game!!!
Now soon after that, I get an e-mail from my insurance company saying that they got the order and it will be shipped soon. Okay whose or first, I don’t know is on second and so forth!!! Thanksgiving came and went and I get a computer call on Friday the 27th telling me to call some number right away and then said the number two times fast and by the time I got to my desk to write it down they hung up!!! What do they expect that you come to the phone with paper and pen in hand??? So I called the number that the insurance gave me last time for a direct call. I got someone on the phone there and I kind of feel sorry for her now because I was getting fed up trying to get this stuff!!! I told her this whole story, two times and she finally understood. She took all my information and said that the medicine would arrive today! And it did!!! At 10:30 am, the UPS truck pulled up and the driver got out of his truck, started to walk to the house, turned around walked back to the truck, got back out started to walk towards the house then turned around and walked back to the truck, got out of the truck for the third time and started to walk to the house and again turned around and went back to the truck. I was thinking that this time he has to make it to the house. For the fourth time the driver got out of the truck with my box and the thing for me to sign and made it to the house.
I had my meds!!! As I opened the box there were a lot of papers for me to read first and then I got to the bottle of pills that was in a yellow plastic bag marked with the Bio Hazard symbol with a big C and the words “CHEMOTHERAPY DRUG! Observe Safety Precautions For Handling And Administration. After Use, Dispose Of In Accordance With Established Procedures.” Well I got 30 days to learn the “Established Procedures” I guess.
So, now I have it and I have read in the papers that were in the box that I have to watch what I eat and they gave me a web site to help. So I will be taking the drugs and Paula will be watching what I eat. Maybe I can lose some weight. It would be nice. I mean I have been on all sorts of diets over my life time and I think over the years I have lost a few people. So… maybe this time I can lose a person also and keep it off. Yah!!! Sure!!!
Until next time… I got to go pop a pill
December 2, 2015
What Am I Doing?
Today I did something I am not proud of and in fact very ashamed of. I went to the Acme and on my way out I saw a friend from Woodbury City Public Schools. I told her that the Cancer came back again, and she said that she had been reading my blogs. I then said. “then you know all about it” and walked away. I can’t believe I did that!!! The only excuse I have is that my mind was someplace else. And that someplace was/is I have Cancer and I am on Chemo!
Back on November 23, 2012, I spoke about that little voice in your head that keeps yelling ‘YOU HAVE CANCER. Well over the last two years that voice has gotten softer and was not yelling at me all the time. There were even days where I didn’t even think about having cancer. Which is really saying something since the television has all of these ads for places to go if you got cancer, or how to know you got cancer, etc…? If you have cancer or diabetes, which I do, the commercials on TV will not let you forget it. In spite of that there were times that the little voice was not very loud. However, since my last visit with Dr. Orth and starting on the Chemo that little voice has come back screaming louder “YOU HAVE CANCER FOOL. YOU ARE GOING TO DIE!!!” Well, I know that I am not going to die right away, but it is still in my mind. Even though I know I am not going to die right away, there are still many times now that I want to just brake down and give up. However, know that I will not give up. I will continue to fight. I want to see Lexi grow-up, I want to keep seeing all those students that I have had in the past continue to succeed, but, most of all I want to spend more time with that one person God gave me for a wife, Paula.
So… if you see me and greet me along the way, and I seem a little rude or short with you, please forgive me. I am fighting a battle that I really don’t know how to fight, add to that the rules keep changing and I never know what is coming next. Therefore, when you ask me how I am doing, know this: I have been worse but I have also been a lot better.
Until next time
December 16, 2015
Yesterday, Tuesday, December 15, 2015, I saw Dr. Orth again. When he first sat down and opened his laptop he looked at my file and then said…”I didn’t see this question!” He looked at me and said “take the Xtandi all at once.” I said I was taking 2 in the morning and 2 at night. His response was that there was no harm done, just take them all at once and get it over with. I will talk about this later. But I had questions for him right off. Now I am going to list them just as I asked him and give his answers:
At one point in our discussion he offered to send me to another oncologist saying that he might have something different. I told him no, that I am happy with what he is doing.
Earlier I said I would talk about the Xtandi some. The side-effects of Xtandi are quite extensive but I am not going to talk about all of them, just the ones that I seem to be enjoying. Headaches appears to be one of them and while I really don’t have a headache, I feel like I am on the edge of one at all times. I have been having a stuffy nose and I am experiencing tiredness with a huge lack of energy and ambition. There is also the joint pain which is ever present. The joint pain I have had all along has been somewhat under control before I was taking Xtandi, but now it is really all the time in just about every joint. When I was taking the Xtandi two times per day I noticed these side-effects seem to wane about two hours before my next dose. I mean, I started to get my ambition back and started to feel like doing something. But, then I would take my next dose and down I went again. Therefore maybe taking all four before bed will allow me to get some things done during the day. This is my first day of doing that and I don’t feel too bad. My nose is still stuffy and the headache is still on the edge, but over all I don’t feel too bad.
So, since this seems to be the way my life will be until things change, for better or worse, I am going to have to take charge of my life and force myself, with the help of Paula, to get things done if I want to or not (as I sit here in my night clothes typing this). I just can’t sit around and let the cancer take control of me totally. There are just too many things that need to be done. And that is just why I write these blogs. This is a way of me giving myself a good talking to. Along with helping anyone else who is going through all of this. If you are one of those who are fighting with cancer take charge of it and fight with all that is in you and don’t stop, no matter how tired you are. My high school mascot, as many of you know, was the Deptford Spartans. The Spartans of ancient Greece had a fighting spirit that was matched by none. The kids I want to school with were a great bunch of kids who had that same fighting spirit. They are now adults, senior adults if you will, that still have that fighting spirit. So those of you who are in this same battle as I am, I challenge you to take on that fighting spirit and do anything and everything you can do to fight this enemy that we have. We all will come to our end sometime and this battle will be over. However, until then, as Dylan Thomas wrote; “Do not go gentle into that good night, Rage, Rage against the dying of the light.” Fight on Spartans, fight on!!!
Until next time
December 23, 2015
My Christmas Prayer
My dear friends, many of you I have grown up with, some are friends that I have gathered along my journey through Life. Many others I have had as students and are now friends, and of course there are those who are the family that love so much. Many of my friends have gone on to something much better while the rest of us are here missing those who have gone on. This Christmas I have a very special prayer. This is that all those that have been attacked with cancer rise over that horrible disease and beat it into submission so that it never raises its horrific head again. I know the greatest Christmas gift all of you is to be told, in truth, that all cancer has been cured, not just cut out, but cured and will never come back again. Merry Christmas my friends and may you all have a Happy New Year.
Until the next time
January 17, 2016
One Day At A Time
People have been asking me how I am doing, and at the same time I have also been in contact with other people who just found out that they have cancer. So I thought that I would talk about both of these subjects this time.
How am I doing? Well, I have not fallen over dead yet. No, no, no, let me take that back. I am hanging in there. This is a battle, and sometimes I do feel that I am losing the fight but I keep pushing along. My energy level is low. I am trying to push myself to keep very active for a few hours per day. Some days I can do it others…. Well, let’s just say I watch a lot of TV and type on the computer. The other day I took Lexi for her swimming lesson down here at River Winds. I just picked her up from her school bus in Glassboro and drove back to Woodbury. Paula put her into her swimming suite and put her street clothes over it. We went to River Winds and I had a time getting her settle down enough to get her street clothes off and keeping her from jumping into the pool until here swimming teacher got to her. So she had her lesson, for which she was not too focused, and came running out of the pool at the end of her lesson into my waiting arms which held the towel. I took her into the family locker room to change her clothes. By the time I got her bathing suit off, dried her off and got here street clothes on I was totally worn out!!! It wasn’t anything Lexi’s was doing wrong, she was just being a six year-old; I just don’t have the energy I use to at this point. I think at this time, that is my biggest complaint. I also have the beginnings of headaches all the time but that is not too bad. The other big thing is that my nose is running like you will not believe. Yes, I can hear you now saying that I better catch it before it gets a way!!! But my nose really hurts now. And yes that is a side-effect of the chemo. I really don’t understand how this chemo is causing my nose to run but that is what is on the list of side-effects. So, as a short answer to the question of how I am doing… I am hanging in there!
The second thing I want to address is this apparent rash of cancer diagnoses. It seems everywhere you look today they are talking about cancer. I can’t watch a TV program without ads talking about some treatment center for cancer, or children having cancer, or women having cancer, or lung cancer, or, or, or, or… You get the picture. I have this voice in my head that is always reminding me that I have cancer. And if by chance that voice in my head goes quite for a while, there is always someone or something to remind me. I really don’t know if it is better diagnoses happening or just the media making everyone more aware of it. And, you know, it’s not that I don’t want people to ask me how I am doing, in fact I welcome it. Because in telling them I could be reminding them to get checked themselves. It seems to me that BIG MONEY has taken over the treatment of cancer and therefore there is more media coverage. Now, I really don’t know if that will be good or bad in the long run. But, money is being made on the suffering of others. I just found out that the chemo that I am taking each day comes out to over $9,000 for a 30 day supply. Thank God that I have insurance that will cover that. Otherwise I don’t know what will happen. Hey, there we go, $9,000 is being paid so that I don’t feel too good!!! That is kind of funny. I really hope this chemo is working for that amount.
Now, I don’t want this entry to be a downer, I am really just reporting some of the things that are happening and some of my feelings. I do hope that this blog is helping someone along the way. Therefore, if you are reading this blog and have cancer know this, do not give up!!! As long as there is breath in your body keep fighting. You will have down days but there will also be up days. For me, this is Sunday night, and my happiness will be with us tomorrow. Find your happiness and hang on to it. To paraphrase John Wesley, if you can hang on to happiness for one minute you can hang on to it for two. Just take it one minute at a time and one day at a time. “One Day At A Time”??? Sounds like a TV show!!! But it is good advice.
Until next time
March 15, 2016
Ides of March
Here I am, typing this and thinking that it is the Ides of March. The day that Julius Caesar died or at least so the story goes. It has been two months since I have written and the main reason for that is because there has not been that much to write about. Or so I felt. I have been on Xtandi since November 28th and I am very tired all the time, have no ambition, my back hurts a lot, I feel like I have a headache starting or have one. My nose is stuffy all the time. And right now, because of the schedule of last week, I am over tired, having trouble focusing, with my emotions right on the surface. I am ready to blow up or fall down crying at any time. I guess I better back up and tell you what has been happening.
Over the past few months, because of the Xtandi, I have been very tired and have accomplished very little around the house. My dear wife Paula has really been worried about me along with problems that our daughter is having, our granddaughter’s autism and my brother-in-law’s health problems. Therefore we have been having a rough time holding each other up but we are doing it. Last week I had the wonderful opportunity to play in the pit for Woodbury High Schools presentation of RENT. Now this was two rehearsals and four shows. For this whole week all I did was play and sleep. The kids were wonderful and I would never trade playing for them to do anything else. BUT, it took a lot out of me. And then Sunday, after a two show Saturday, I had to stay at Church two and a half more hours because we were having a rehearsal for this coming Sunday’s Easter cantata. So needless to say I have been doing a lot of sleeping the last two days.
Now, in the midst of all of this I had to go get my PSA tested to see how well the Chemo is working. If you remember my PSA was up to 2.5 back in November. Now normally with someone who has not had cancer that would be good. But after my radiation and hormone treatments I should be some place near 0.1. That was why Dr. Orth placed me on Xtandi. Well, my results came back as 0.5 this time. Great news!!! The Chemo is working. Now I just have to learn to deal with the side-effects, which I already listed above. So, I went to Dr. Orth today and he gave me another hormone shot and said he was very happy with the results. I was telling about the side-effects. Also that I had pneumonia and that the makers of Xtandi contacted me wanting access to my medical records about the pneumonia. He said that they have to do that to make sure nothing is serious. He also said he had a patient that was on Xtandi to five years and he was 93. 93!!! How did he do that???? But, as I left Dr. Orth he said if I had any questions contact him.
So, there you go. Good, Bad and So-So news. As I said at the opening of this entry I am still very tired and I am having problems keeping focused. So I will close for now and when I am less tired I will write again.
Until next time
March 31, 2016 -11:30 p.m.
I Am Tired Again!
Well, it looks like sleep is not high on my body’s list of things to do tonight. Although sweating is very high on that list. To be truthful with you I have always been an easy sweater. I don’t mean a little wetness under the arms or on the face. When I sweat it is like I was just under a waterfall. But now, since I am take this Chemo, the sweat is rolling off of me at 50 degrees. My wife looks at me and thinks I’m nuts because she is all bundled up and still cold and I am in short sleeves and shorts and still sweating. But it is a side effect of this stupid Chemo and Hormone treatments. And I am very tired of being sick. This is the second cold I have had this year that has gone into pneumonia. I have no energy what so ever. And when I try to do things I am our of breath and want to just fall down. I am tired of being sick. I am tired of having cancer. I am TIRED!!!
So what am I going to do? Well… I am going to post this and then go lay down and try to sleep again. Maybe I will post when I am in a better mood.
Until next time.
Thursday, April 7, 2016
Okay, this is not a good post and I will be asking some questions. If you have some answers please post them.
Today I was told about the passing of a childhood buddy of mine. This is the second in about a little over a month. The first was from Cancer. The second, I am not sure of, but from what I was told it was also Cancer. To say that I am upset is an understatement. There are so many from my high school class that are fighting Cancer, have fought Cancer and “won,” or have fought the Cancer and lost that battle. So many are saying we have come so far in our battles with Cancer. I am sorry but I really don’t see it! When they talk about cures it means that they have cut you open, cut out part of your body, subjected you to radiation and Chemo, which is nothing more than pumping you full of poison, and when the Cancer stops growing you are pronounced Cancer Free! You are CURED! Yah, you are missing parts of your body, you have radiation side-effects and side-effects from the poison, but what a cure! It is almost better to have the Cancer! And when you die from the side-effects, at least you were “cured” of the Cancer.
You know, there are a lot of good people in this world and they try to do good. They do different activities to raise money for research to find a cure for Cancer. They give their money and time for this cause, but, the only thing that seems to happen is that Cancer victims are cut-upped, radiated and/or poisoned. What I see is that the drug companies are getting richer. I see Cancer doctors getting richer, And researchers getting richer. What I don’t see are cures being found or caused for cancer being found.
I grew up in a generation that has been exposed to all sorts of carcinogenstics. Things we were told were good and would not hurt us. Then they find out that all that stuff caused cancer. So what are we left with? Cut-upped, radiated, poisoned bodies and kids that I grew-up with dying too young. And that is not taking into consideration our children now that are also dying with Cancer, or going through the “Cures!”
So I ask you… What can we do? WHAT CAN WE DO? I am a person of faith and I do believe in the power of prayer. But, besides prayer what can we do? It bothers me so much that people get rich on the pain of others, but again what can we do? If you have an answer please post it here. There has to be something that we can do as individuals or in mass.
Until next time keep praying for those with Cancer and think about what can be done!!!
April 15, 2016
How You Doin’?
There is something I have been noticing. People, when they ask you how you are doing they expect an answer: “ I’m doing good.” Or just plain good. I normally broke that up by saying “just ducky!” People then stop and look at me and smile or laugh. And then I say “I am quacking up!” Then I get a little chuckle from them. Of course you know you can put all sorts of inflections in your voice when you say “just ducky.” It can mean that “I am doing great,” “I’m doing good,” “I’m alright.” “It’s not a great day.” Or even “Don’t even ask!!!” I picked up the term a few years ago and it has really come in handy, and caused a few smiles.
Now when people say how am I doing, depending on the day. I will say good or alright, because I really don’t feel like going into all that is bothering me. And I really do mean it depends on the day. Some days I am feeling good and have a little energy to get some things done. Then other days I am really feeling bad and have no energy at all. Then there are the days in between. I have even started days feeling good and about half way through feel like a Mack Truck hit me. So I just get into the habit of saying “all right!” And people think I am doing alright. In fact I have been slipping up, and when I go to see my doctors and they ask “how are you doing?” I automatically say alright. I get this feeling that I am complaining too much. But, I guess I should complain to the doctors. Maybe they can do more for me. But, you know the doctors are so busy with so many people to see each day that they just don’t pick up on that “I am saying that I am all right but I’m not really” reply. Now I also understand that a lot of Cancer survivors fall into the same trap. We all have to watch out for that. So if you have Cancer, when someone asks you how you doing? Just say “It’s a good day” or “ It’s not a good day.” And if they want to know more they will stop and talk with you. Also when you go to your doctors be up front with them and tell them, “Look, I’m not doing well. I need some of your time!” Or “I’m doing good today.”
Something we all need to think about.
Until next time… It’s a good day!
June 15, 2016
First thing I want to do is to apologize to everyone who have been coming here to see if there was a new entry. Things have not been going too well and it has been hard to write about it.
First the Chemo has been really kicking my butt. I am tired all the time, having to pee all the time, depressed all the time, my joints and back are aching all the time and I can’t even sleep in my own bed. And even as I type this my hands are shaking and I am having trouble getting the right letter pressed without all the other letters around that letter showing up, like thiesw! I went to my GP last week and he said that it sounds to him like I have sleep deprivation. And that is because I am up every hour or so at night going to the bathroom. Also during the day I am going about once per hour or so also. Upps be right back!!! …Back!! And when I got to go I get about 20 seconds of warning before it starts to flow. Another thing is that when I do have some energy to do something around the house it last about an hour with a lot of rest and then I have to come in and sleep for an hour, not very inductive to doing things around the house. Another thing is I feel that there is this chemical odor about me. I smell it all the time. I get Paula to sniff me but she says that she does not smell anything. But to me it is there all the time.
Dr. Krugger says that I need to go back to see Dr. Orth. Well, I agree but I have an appointment for September 13, and you know how hard it is to get an appointment with any doctor this time of year. I told Dr. Krugger that I know that this Chemo is working to extend my life, but my quality of life at this point really sucks. And it has me wondering if it is all worth it. Don’t get me wrong I am not thinking of taking my life, but is taking these Chemicals to extend my life worth spending the rest of my live looking at nothing but the inside of a bathroom door? When I go anywhere I know where every bathroom is, OH! And the dippers, sad to say don’t really work for me. I know that this is not very pleasant thing to be talking about but it is part of this whole Cancer thing. Now, there is something that is a little more pleasant that happened… ready for this? Drum roll please!!! I lost 6 pounds over the past month!!!! WEEEEEEEEEEEEEE!!! That is still not the quality of life that I am looking for.
Dr. Krugger says that there are other Chemos that can be used so to talk to Dr. Orth. What I must decide now is if I should just wait it out to my regular appointment or call for a new one. Or even if I should send him an e-mail which is something I have done before. Or am I just crying too much about all of this.
Well, anyway I told you that I will try to be honest with this blog and I feel that I am being honest on how I feel, even at 2:00 a.m. So until next time I am still here and I am:
Friday, September 16, 2016
Don't Want To Go Yet
So, here it is September 16, 2016, and I went to see my Urology Doctor today. No, no it was not Dr. Orth, it was Dr. Ebert. I was informed about a week or so ago, after I wrote a long e-mail to Dr. Orth that he is no longer with the practice. So my lot fell with Dr. Ebert and I wrote him the same long e-mail. I put in the e-mail the things that are happening such as:
Now Dr. Ebert says that the problem is with my Diabetes drugs. They keep me going until the sugar is out of my system. GREAT!!! Now I have to wait till my next GP appointment to get that changed. The rest of the things I listed are side effects of the Chemo and Hormone treatments that I am on.
Next I had a few questions:
Dr. Ebert says that we can not get the cancer because it is outside of the prostrate sort of floating around. The only way to treat it is the way we are treating it now. In other words I will be on the Chemo and Hormone treatments for the rest of my life and I have to get use to the side-effects. And the urinating I have to get with my GP the change my diabetes drugs.
Alright, you know finding out that I had cancer in the first place was a blow that I will never forget. Then finding out that it came back right away took the wind right out of my sails also. I kind of always knew that I still had the cancer from what I have read, but finding out that the cancer is kind of floating around in my body and I will never, ever get it out of me. It makes me wonder if this cancer will attack other organs. Will it just sap away every bit of me until I just fall over? If so how long will that take. That is the part that is really up-setting me. I don’t want to kick the bucket anytime soon. I have too many thing I want to do. I just found the talent to write poems and to compose music. I don’t want to die before I get all those words and music out of my heart. I want to see my granddaughter grow up to be a self-sufficient young woman. And I don’t want to leave my wife alone. Maybe I am being selfish but that is what in my mind and heart right now. There are too many things I want to do that I never had the time to do all of my life because I was busy working.
I was going to close this posting today by saying something like “Think about it.” But, I really don’t know if you would really want to think about it. I really don’t but I can’t help it because it is deep in-side my head. That voice is back, very, very loud saying; “You have cancer fool!!!” I leave on vacation tomorrow, let’s see if I can maybe think of it less.
Till next time.
September 26, 2016
Questions in my Mind
Here it is about 1:00 in the morning and I am wide awake. Well, that should not be a surprise since I slept about 13 hours from 9:00 on Sunday night. After our vacation I was so tired that all I could do was sleep. Paula tried to wake me up with breakfast but I just could not get up, In fact about 9:00 a.m. I did wake up enough to be very hungry that I age a bowl of cereal and then went back to sleep for about two hours. When I finally got up I had a headache, felt very bad and was still tired. But, I tried to stay up the rest of the day and finally went back to bed about 8:30 p.m. I did sleep for a while before having to go to the bathroom and a little after but here I am still awake. I have the Man From U.N.C.L.E. on, on the Decades Channel. They had a marathon of the old show this week end and I always loved the show. Next week is Police Woman which I never cared for. Any way while I was laying there trying to sleep I got to thinking. Remember I wrote right before we went on vacation that I saw the Urologist and got some questions answered. The one question that I asked was why can’t they just go in and get the cancer out of me now. From what I understand the prostrate is all withered away like a raison now. If it is still putting out the cancer cells just take them out now. Well, Dr. Ebert said that the cancer cells are floating free in my blood system now. Now, I know that this sounds simplistic but, why can’t they hook me up to a filtering system and kill the cancer cells and take them out of my system? I really don’t expect anyone to answer me. I know I do not know as much about medicine as the doctors do (well maybe a little more than some) but I am wondering if they are missing the simplest answer.
Well, any way our vacation was alright, I have trouble sleeping as usual and we had guest. It seems like when we have Lexi with us neither Paula nor I will sleep well. Because she starts sleeping with Paula she gets no sleep because Lexi is an active sleeper like Paula. And then I worry about them and wonder around checking on them both. Even when Lexi is in her own bed or couch I am still checking on her. Also the weather was not great down in Lewes. We had rain, a lot of overcast skies, and heavy winds. I only got one book read. It was called “The Flying Tigers: The Bad Boys of the Sky.” It was a good book even if it did not have any plot at all. It just told how the Flying Tigers of World War II were formed and a little bit about each one evolved. I thought it was funny that the Japanese thought there were over 300 Flying Tigers but over the whole them they existed there was only about 50 total. They shot down in the hundreds the Japanese planes but the Japanese only shot down about 5 of them. Interesting book about crazy bunch of guys.
Until next time
November 10, 2016
The Rest Of The Story
I think it is about time to tell about what has been happening with me over the last few weeks. Now this might look funny at times because, while playing on my computer, my granddaughter lost the key with the period and closed carrot on and typing “L” and periods are kind of hard.
So, with that in mind let’s go through time and space to October 20, in Dr. Padder’s office. This is where he told me that I had A-Fib. He was hoping to take care of it with meds but it did not look like that was going to happen. That evening I directed the Church Choir for the first time in rehearsal and almost passed out. I took it easy on Friday, picked up Lexi and that was about it, Saturday I rested and we went to the show at the Walnut Street Theater. It was at this point that I decided to stop taking the Chemo because it was making me feel so bad. Then Sunday came I directed the Choir in our Worship service. I came home and slept the rest of the day. I Had a hard time sleeping that night because I could not breathe. I took Monday easy and wrote Dr. Ebert that I stopped the Chemo and why. That night I could not sleep again because I could not breathe and I had chest pains.
I got up early got dressed and woke Paula to take me to the hospital. As I walked into the ER, they took one look at me and they threw me into a wheeled chair, ripping my shirt open and hooked me up to an EKG. At the same time hooking me up for BP and got me into a bed. Then I hear them on a phone saying get a room ready. They wheeled me down the hall, I saw nurses that I knew, they are all asking me questions that Paula took care of and they plugged me into a wireless EKG and plugged IV drip (I call that one Ralphie, like the little brother you had to take everywhere,) And the automatic BP cuff on a pole and thing on the finger (I called the other Georgie because he was like the neighbor kid you could leave behind sometimes). Then they told me that they were keeping me and they had a bed all ready for me. So here I am, Raphie on one side and Georgie on the other and nurses coming in every few minutes to give me a shot or draw more blood, And the bed was the total worst there was. Needless to say I was not a happy camper. I was a sick puppy, but not a happy camper. Now let me inject here that the Nurses and Aids were wonderful. You could not find better anywhere. That night was my night in HELL!!! My roommate and I created a choir of moans and groans. The Nurses and Aids were trying to do all they could do to help us but there was just nothing they really could do but give us more shots and take more blood. The next two days were about the same. Then on Thursday they said I could go home (I guess I was a big enough pain in the butt) and they will shock me in the office. Well, I did not hear the word “shock.” So Paula drove me home and tried to take care of me but I would not let her. Until come Saturday morning, again I cannot breathe and I am having pains. She rushed me back into the ER and all the Nurses and Aids are saying “Wait a minute you were just here!!! So here I go again they, plugged me into a wireless EKG, and back with Ralphie and Georgie. Then when they say that they are keeping me to get shocked on Monday, and my room was ready, they took me up to the same room I was in before, same bed, and same roommate. Everyone saying “what happened? You were sent home.”
So I was there Saturday, Sunday and Monday, again in HELL!!! But this time sleeping in the chair, I just could not sleep in that bed so my feet puffed up because I had them down all the time. Then came Monday afternoon when they took me down to the OR recovery room where they put me to sleep, put a camera down my throat looking for clots, and then shocked me until my heart started to beat the same rhythm. I woke up feeling a lot better, and they thought that I was crazy because I was saying that I could hear the music in my head again. You see I have had music in my head all my life, until the trouble with my heart started. So once I got my head clear enough I started to pester everybody to let me go home. And as soon as I got home I jumped into the shower, shaved and shampooed, and I have been home since. I am slow doing things and get tired fast, and I am driving Paula nuts because she wants to take care of me. But I am starting to get my life back around all the doctor appointments. It is funny how you just don’t know how sick you are until you are just about knocked out.
Well, another Doctor’s appointment now. How do I close this? When your heart is out of sync it will put the rest of your life out of sync also. Forgive me if I missed an L or a period here or there. It is hard typing without them.
So, unti next time!!!
December 9, 2016
Heart vs. Cancer
Greetings again my friends. I would like to bring you all up-to-date as to what has been happening to me. The problem is that I am having a hard time knowing where to start. First off, I can use my L key and period key (even if it is missing still). So, I should not be missing any L’s through this discourse.
Let’s start off by talking about my heart. I am still in A-fib but it does not seem as bad now. I am on a new medication that might be doing some good. However, because this new medicine will attack other organs I was sent for a lung test. The results are that my lungs are normal and full capacity. I say that is because I sing in Church a lot and even though I have not played any of my wind instruments for a while, I still have my lungs built up for playing them.
I think that this whole heart thing has me the most scared of all my ailments. It has come on me so fast, and totally took my strength away. I am pushing to try to get back into the swing of life again, but it is very hard when you don’t have the strength. I have to ask the Doctor about the Cardiac Workouts that I have heard so much about. I will have a hard time fitting it in to my schedules, but I think it is something that I will have to do.
Alright now, let’s get on to the cancer. This week has been a week of test. Besides the lung test, I have had a bone scan of my pelvis, blood test galore, CT scan with contrast and whole body bone scan. Right now I am radioactive from the whole body bone scan, and will be for 24 hours. So when I urinate, the urine is radioactive.
It is amazing what they put the body through in the name of curing the person. After almost a year of Chemo, I have come to wonder if the doctors are trying to cure me or kill me. All of these tests I have gone through this week has awaken a lot of emotions in me. These are the test that I went through when I first found out I have cancer. These emotions are not pleasant memories either. I have been spending a lot of time crying lately. I do it where nobody can see, or hear me, but I am still doing it. I really don’t know if this will be my last Christmas on this mortal coil, or if I will have many more. I would like to think that I will have many more, but all these health problems have me upset and emotional.
I feel that at this point I need to acknowledge all those that have been helping me, encouraging me and most of all praying for me. I don’t think that I could have gotten through any of this so far without your support. But most of all I must acknowledge my wife Paula. She has been there for me all the way and taking up the slack of things I just don’t have the energy to do. When I go to her in the early morning and wake her up saying “I am in trouble!” She is up dressed and putting me into the truck to take me to the hospital. This woman hates hospitals with a passion, and I don’t blame her, but she would sit with me for hours, then when I get home she fusses about me. I know I aggravate her a lot because I will not let her wait on me. I am such an independent person I always have to do for myself when I can. But, Paula is still always there for me. Something I have not always had.
I am going to close for now. Next week I have two doctor’s appointments, one for my cancer and one for my heart. I will keep you informed.
So until next time
January 23, 2017
Doing Something Right
I am starting this entry with some good news. My heart seems to be beating in rhythm for now. It has been about a week and a half since I was last shocked. Each day I am feeling stronger and more of my old self. Also about two weeks ago I went to a nutritionist and discussed how to change my every day diet to help my heart and diabetes. At one point I was up to 318 pounds I am now down to 304 pounds. So, I am losing some weight. All my life I have watched everything that I ate because I felt that I was fat, I have done many different diets and I figure over the years that I have so many pounds that I lost about five people. But, they were sure to come back on with even more weight than I lost. But, this time I have to take it off and keep it off because of my heart, diabetes, high blood pressure and general quality of life. And as soon as I get the okay from my cardiologist I will start working out again. I really will!!! No kidding!!! Okay you can stop laughing about that now. Anyone who knows me knows that I am not one for working out. I will start and go to the gym faithfully for a while. Then I will miss a day, then two, then ten, and then just forget to go altogether. But this time I will have to keep it up!
Now I have a small gripe. I have been through a lot these past few months but I really did not know how bad I was. This past Sunday in Church, I announced that the last shock worked and that my heart is beating in rhythm. People kept coming up to me telling be how much better that I am looking now. They said that I was looking so bad that they were really worried about me. I tell them thanks, I am feel a lot better, but I think to myself, “geez, when I was looking so bad you were telling me that I looked good! Why didn’t you tell me that I looked like death warmed over?” I never realized how bad I was. Maybe if someone told me that I was looking bad I might have done something earlier. I guess they were trying to make me feel good. Gripe is done!!
So, my heart is beating away, my cancer is in regression I am getting my Diabetes under control again and the blood pressure is not bad. I guess that I am doing something right at this point.
Until next time
December 13, 2016
I went to my cancer doctor today and I have good news to report. The doctor came into the room and said that all my bone scans came back negative and my CT scan also came back negative. My PSA is less than 0.1, and my bones are strong. So I will still be getting my six month shot but I don’t have to come back to him for six months. We discussed the Xtandi that I was taking. We agree that it did do its job with the cancer but it also damaged my heart. He said that is an unfortunate side-effect of the Xtandi. As we parted he said that I really don’t need to worry about the cancer too much now but I need to get the A-Fib taken care of. I think I would agree with him there.
I know that this blog is supposed to be about my cancer journey, but I think that the stress of this blog will be moving more to the problems with my heart since in a roundabout way my heart problems are caused by the cancer. However, I will be posting updates on the cancer as they come about. Therefore, tomorrow I will see my heart doctor and I will be posting again about what is said there.
So until next time
December 14, 2016
More (Sort-of) Good News
I went to the heart doctor today. He looked at the EKG and said that I still have A-Fib but it is a lot better. That is the good news! The sort-of good news is that Monday I go back into the hospital to be zapped again. He said he thinks it will hold this time because my heart rate is slower and I am not misfiring as much now. He said that as soon as I wake up from being zapped I can go home.
I have been doing some reading about A-Fib and I asked him to allow me to explain it to him what all of this is so that I can make sure I understood it. So I went on, pointing to the chart on the wall, that there are cells in the atria that fire off electrical charges causing the atria to contract. With A-Fib some of the cells go rouge and start firing at odd times. It is like a marching band where everyone is out of step and facing different ways. Everybody starts to step on each other and banging into each other. Now when that happens in the heart, the blood is not pumped it just kind of sloshes around. The medicines they have been giving me are trying to get those rouge cell to get back into time with the others. It is like you start yelling at the band “Left… Left… Left, Right Left.” But there are always a few who cannot get in step. So the shocking is like a slap on the head to get out of step band member back into step. Now, if those cells just will not get into step what they will do is send a catheter up into my heart and take out those cells that are misfiring. But the doctor does not think that will be needed. By the time I finished my explanation the doctor was smiling saying I got it right. Therefore I am sharing it with you so that you can understand what is happening with me.
As I said in the beginning this is sort of good news. And I really do praise God about it. But I will still need a lot of prayer and we will see what happens on Monday. I am looking forward to not feeling my heart being kind of gushy in my chest. I really do want to feel normal again and be able to do things again.
So, until next time
March 29, 2017
I am sorry for not posting but things have been busy for me. The last time I posted was January 23rd and it seems that a lot has happened since then. First of all my heart has been in rhythm for over two months now. I have started to walk a half mile; not each day but as much as I can, especially with the weather. The last time I was taken to the hospital was quite an adventure. It was not my heart, it was my breathing. I was not expelling enough CO2 in order to get enough oxygen in my lungs. So what happens when you don’t get enough oxygen to the brain? I went out of my head. My wife tells me this is about the way it went; I started to feel real bad and I had enough sense to call 911 and the wake up my wife. At that point I went out of my head and did not know what I was doing. My wife said that the EMTs and Paramedics arrived and I was refusing to get on the stretcher or put on the oxygen mask, and I started to fight them. They call for backup, that is six adult men how wrestling with me. My wife finally convinced me to lay down on the stretcher. They put the restraints on me and took me to the ambulance. By the time they got me in the ambulance I had the restraints off and was getting up to leave the ambulance. All of the sudden I was asleep. I sort of remember going into the ER, where they know me very well by now. I remember they gave me a shot and I was out. When I woke up hours later I was under a blanket and I realized I did not have a thing on, not even underpants!!! After a little while they took me up to ICU, gave me a gown and some food. I was there for about two hours and then moved down on to the regular floor where I spent another night and day. The last time I saw my cardiologist he said that I stayed in rhythm the whole time I was going through this. I have an appointment with a cardiologist over at the University of Penn on May 2nd, but I think that I might be alright as long as I keep taking the meds they give me.
Okay, so that is about my heart. Let us talk about my cancer a little. I went to my urologist on March 10th for my six month hormone shot. It was a short time in the office, got my shot and told me my PSA is less than 0.01!!! Wow, that is better than after the radiation. So the cancer is in complete remission.
Now as I read over what I just wrote it seems to me that this is a very positive posting. I have been through a lot these past few years, but I seemed to have come out of it alright so far. Remember the saying I have posted on my blog page? I survived, I am surviving, I will survive!!! I am not done fighting. God still has work for me to do!!!
Until next time
April 11, 2017
What I Have Been Through
This past Sunday a friend came to me who was just diagnosed as having prostate cancer. We started to talk and then we were both called into different directions. I left off telling him to go to this page and read some of my blog. As I look at this blog now, it is 99 pages long with 55,500 words. This is longer than I ever thought it would be. However, I must say that I have stayed true to my promise to all of you of not holding back anything. I have tried to be honest, and even if what I am talking about embarrasses me I still include it, and sometimes writing something because the treatment really caused me to think in a strange way. Some of this I am proud of some of it no so proud. BUT I have had many people tell me that this blog helped them in their journey or in understanding this journey that their loved ones are taking. That has been my goal of these 99+ pages I have been writing.
So, what about my friend. He is about to begin radiation at the same place I did. I told him how wonderful the people there are and how the treatment and machine has affected me emotionally; I still get sweaty when I drive past the center. Oh, how I wish I could have talked with him more on Sunday. This Sunday and every Sunday afterwards I will be checking on him and talking with him. It is something about cancer survivors… We have this sense about other cancer survivors and we encourage each other. It may not be always in big support groups, but more likely than not it will be just two people talking and caring.
If you have had cancer, share with others about it. Let other cancer survivors know they are not alone. That road we are on is a long, lonesome road and we need to remind other that we are here for them,
Now, if you will excuse me, I have another survivor friend I need to write to and tell him he has the strength to keep going.
Until next time
June 13, 2017
Some Good News!!!
I went to see my doctor for advanced cancer today. He looked at all the results of the test, reviewed my records, and when he came into the room asked me how I was feeling. His next statement was: “Since your PSA is zero, and there is no sign that the cancer is active we are releasing you for now. That is not saying the cancer will not come back but for now you are in remission. You will still need to see Dr. Ebert in Woodbury to get your six month shots, but you are looking good!!!” I said thank you very much, shook his hand, shook the nurse-navigator’s hand and said goodbye, and got my tail out of Dodge!!! At last some good news. Now, just waiting for a call later this week or early next week to go over to the UofP to get my ablation done! Could it be that things are looking better for me? We will see!
Until next time
June 14, 2017
It’s Been A-While
Well, outside of the short entry from yesterday, it has been a while since I have added to this blog. It is hard to explain what has been going on with me since I last wrote. There have been a lot of days where I just have not had the energy to do anything, and those days when I had energy I was busy with other things. So let us just deal with what has been happening recently.
As I reported yesterday the doctor said that my cancer was in remission. If you remember I was told that once before but my cancer decided to come back and I was placed on Chemo Therapy. Well, I am off the Chemo since October, and my hair is growing strong again (I had big clumps breaking off with long hair all over the house). But, being told that it is in remission this time I have a better feeling about it. It was funny, my wife, Paula, said to me today after I got home from the doctor’s, that I seemed a lot happier than I have been. She asked: “has this been playing on your mind that strongly?” I told her of course. I have said it before and I will say it again… nobody understands what it’s like to have cancer, and the job it does on your mind unless you have had cancer. And no matter how strong a person you think you are, nor how much faith you think you have, there is still that voice in your head saying: “You’ve got Cancer! You’re going to die!!!” That is why those of us with cancer or had cancer can pick out each other and start sharing our stories.
Now with that said, it does not mean that you cannot be sympatric to what those with cancer or had cancer is/was going through. I have a lot of friends asking me how I am doing, knowing that I am also have problems with my heart. I tell them that I have good days and bad days, which is true. However, one of the things that does get to me is when someone asks me how I am doing in the “pity voice.” I always give a short answer of “alright.” To be truthful, even though I dislike that “pity voice,” it might be my own fault. You see, when I am in pain or not feeling good it shows strongly on my face and the way I move and people are really trying to be kind and express concern for me, and the “pity voice” comes out without them knowing it. I just have to try to keep that in mind more.
At this point, why don’t we talk about my heart a little? As you may remember I developed A-fib after being on the Chemo for about eight months. I was admitted to the hospital six times with it and shocked five times trying to get my heart beating like it should. Finally my cardiologist referred me to University of Pennsylvania Hospital. I went over there and saw this Cardiologist who is suppose to be the top of his field. He said that I need ablation and to get off the medicine that is keeping my heart in rhythm because it is harming my other organs. Ablation is when they go up both sides of your groin to get into both sides of the heart and then kill some of the triggering cells that causes you heart to beat. So, I said okay let’s get it done. Now to have this top Doctor do it, it would take waiting on a “List” for six months. To have one of his associates do it, it would take a month on the “List.” I elected to have the associate do it. It has now been a month and a half and I am waiting for this call at the end of this week or beginning of next week. I will keep you informed.
The last thing I would like to cover is, a lot of people come up to me and ask what they can do. My answer is prayer. I am a person of faith and I believe in prayer a lot. I have seen and had some wonderful results from prayer. Therefore, I suggest that if you want to do someone with cancer or heart problems, even if they do not believe in God, is to tell them that they are in your thoughts and prayers. They don’t have to believe, just you. And believe me, God and I have had some real knocked down and drag out discussions, normally with me being knocked down a few pegs. Try it!!!
Until next time
September 13, 2017
I am going to start off with the first paragraph from last time since it applies this time also. “… it has been a while since I have added to this blog. It is hard to explain what has been going on with me since I last wrote. There have been a lot of days where I just have not had the energy to do anything, and those days when I had energy I was busy with other things. So let us just deal with what has been happening recently.”
One of the things I am busy with is Doctors’ appointments, visiting Nurses, and Physical Therapist. Where I thought that cancer was the worse thing in the world to get, I now have a damaged heart and diaphragm. All because of doctors screwing up. Well, I am getting a little ahead of myself so let me back up some. You will remember that I was on Chemo for about 8 months and developed A-Fib. I went into the hospital 6 times for this and was shocked 5 time to try to get my heart back into rhythm. My heart did get back into rhythm but it was because of a medicine that was harming my other organs. So I decided to go into the University Of Pennsylvania Hospital and have Ablation done. I had my choice of having one of the top Cardiologist in the country, Dr. Marchlinski take care of this, which would take 6 months, or have one of his associates do it which would only take a month. I elected to have the associate. After all they are under his supervision and he will be available it there is a problem.
I went into the Hospital at 6:00 a.m. expecting to just spend the night. When I woke up, I was being pushed down the hall in a bed by about six or more people, I have all sorts of tubes in me and I had oxygen on and a respirator mask on. I tried to move some and I just could not. I finally got someone to understand that I was asking “what happened?” They said that they had to do intubation twice. Now I was still half asleep and wacky from the sedatives, but I knew that meant they had to put a breathing tube in me two times. They got me into ICU and everyone was poking me and prodding me but as I said I had too many drugs in me at the time. I did find out that that was Tuesday the 25th. I was back asleep and the next time I woke up was Wednesday morning. When the nurse (God Bless All the Nurses!) came into me I asked her what happened? She told me right from the beginning, even that they damaged the nerve that controls the right side of my diaphragm. I was breathing only on one side of my chest! During this whole time Paula was kept in the dark.
It was Thursday or Friday that they decided to move me to a regular floor, but in a private room. I was still not understanding totally what was going on but I found out later that I also had congestive heart failure, and had all sorts of fluid around my heart. Friday night I freaked out. Three Nurses were trying to get me to calm down, and I was on the phone with Paula at Midnight. They finally got a Doctor to come in and lie to me to calm me down and give me some drugs. They also called in a special nurse just to take care of me. When I woke up the next morning I was in total hallucinations. I will not go into that now but it was scary.
Well, while I was in that room I had all sorts of doctors, nurses, and techs coming in to see me and ask me all sorts of questions and listening to my chest. By this time Paula contacted Lawyers and they took an interest right away. By my second Wednesday the Lawyers sent a car for Paula to bring her up to the hospital and they met her there. They witness some of the stupid things they were doing with me, and witnessed me being taken down for electro conversion which they decided, when I was down in the Lab, that I did not need it, and brought me back to my room.
When I was released on Friday I had a hard time getting into the car because I was freaking out again. From that point on every time I got into a car or truck I was freaking out. I just could not breathe. By the time I went to Dr. Marchlinski on August 23rd, I was having a real problem with cars, wheelchairs, along with sitting back in a chair. The Doctor said that it sounded like my diaphragm was starting to move some. But it took them a long time to get me into a position to do an EKG because I could not sit back since I could not breathe.
Let us skip a head to August 30th and 31st. I was having a real hard time breathing and could not get into a position to breathe easily. Finally on the 31st Paula called 911 because I was freaking out for the reason that I could not breathe. The EMT and Paramedics, with a lot of difficulty got me to the hospital. These four young people were fantastic with me. They moved me around, tried the best they could to calm me, and did it all with care. At the hospital they started me on Lasix. As the drug worked I started to feel better and I calmed down. I had congestive heart failure and the University Of Pennsylvania Hospital released me with all that fluid on my heart. When I was released by Inspira I could breathe again, sit in the car and sit back in a chair. All I can say is that when I went into the University Of Pennsylvania Hospital I came out worse than I went in. When I went into Inspira I came out better than I went in.
So as of right now I am in recovery. They say it will take anywhere between 7and 12 months for that nerve to heal, if it does. Paula is exhausted playing the part of Mother Hen, taking care of me and doing all the things I normally do. My love for her is never ending. As time goes by I will be doing more and more as my Physical Therapist gives me more things to do. She says that I have to build up endurance. Slow but sure.
Until next time
October 4, 2017
Last night I was getting ready for bed, as I looked down at the bed I realized how angry I am. Because of a doctor’s screw up I now cannot lay down without feeling like I am suffocating unless I have my mask on which can be very irritating at times. The reason I am feeling like I am suffocating is because of my diaphragm on the right side is paralyzed and when I lay on my back or side gravity pulls everything down and my left cannot do the work of both sides and my lungs do not inflate right. When I put on the BY-PAP mask that keeps a constant positive pressure in my lungs so that the left side can do its work. I went to my Lung Doctor last week and I just got the results of the x-rays and it shows no changes since July. There are many other things also happening now because of this screw-up but I will not go into them now.
I know that the doctor, who is very young, did not mean to mess up and that he does feel bad about it. But, that knowledge does not lessen my anger. Many years ago a Doctor butchered my ears with three surgeries. I had to pay for that with two more surgeries and battles with infections. It is funny how there are so many jobs, that when you mess-up real bad, they still get your money, and at times even get more taking care of their screw-up. I wish I had a job like that!
When I retired I had visions of spending more time playing music, being with my wife and doing things together and doing things with our granddaughter. But that did not work out. Since my retirement I have seen more different doctors than my entire life before. Dr. Orth said to me once that I am at that age when you collect doctors! Well, I will tell you something… I don’t want to collect doctors, and my life would be great if I never saw another doctor again. But I am off to see my cardiologist tomorrow, and then the doctor who did the screw-up next week.
Sorry that this posting is no negative but Paula and I are both very angry: first, the way I have been treated, second the way she has been treated, and third the apathetic attitude by the doctors. Look I understand that all of these doctors have many patients to take care of and it is hard. However, I have had a few doctors in the past that made me feel like I was their most important patient. Isn’t that what they are suppose to do?
I will close now and try to do something about my anger. Lord you know you are going to have a rough time with me this time.
Until next time.
Up-dated October 4, 2017
James Krauss designer and Webmaster