February 19, 2010
I was originally scheduled to start treatment in the late afternoon but the day before they phoned and offered me the opportunity to come in mid morning. I thought about sitting around all day waiting for the first treatment and said yes even though it meant I would have to go without Cherie. I figure there will be lots of need for support later as I begin to suffer from fatigue and possibly feel the need to be on the toilet way too often. It worried Cherie who knows I don't ask enough tough questions about things but she went along with it. I am blessed. It is curious but will not come as a surprise to anyone who has lived with a serious illness that your life is a mixture of the ordinary and the disease and that you shuttle back and fourth at random and sometimes bizarre times. My trip to Sunnybrook began with me being determined not to pay their outrageous parking fees. I parked at CNIB and walked to the Odette Cancer Centre which is right at the front of the campus so it was easy. I paid 4 bucks instead of 16. Yeah!
It is amazing that even when you are doing something like going for cancer treatment and you are a rookie that you worry about looking cool. I went to the wrong counter on the wrong floor but they very nicely directed me to one floor down and the correct counter. I discovered that my health card won't scan giving me a choice. I have to talk to the person at reception or go to College Park and get it fixed. I probably will so I have options. Not for the first and undoubtedly not for the last time I tried to explain my name is Peter, not Carl. The woman won't agree to change the name on my hospital card though another clerk at assessment said it could be done. Nobody in my life calls me Carl except cops who have pulled me over and people in health. I should have changed my name to Peter Carl Crosby years ago. I spend a few moments sitting in the very large waiting are with dozens of others waiting for radiation. The centre has a large open floor with galleries around and you can see all the way up to skylights 3 or 4 stories above. It's clear that thought went into making it a reasonably pleasant space. I've come equipped with puzzles book and Ipod so I feel I am good at this waiting.
I was called in to the treatment area quickly and first got a repeat of the conversation I had already had in my assessment a few days earlier. I didn't mind because I had a few more questions. It's not pleasant listening to the list of things that can go wrong and some side effects that are more likely than not. How about, "If you feel like you're peeing through broken glass tell us and we"ll prescribe antibiotics. When your bladder gets irritated by the radiation there is a risk of opportunistic infection."
Broken glass in my penis and I'm going to keep it a secret, I don't think so. Still it was good because without the prep I can imagine thinking I have been burned beyond any hope of repair. Then it was on to the dressing room to take off my pants and underwear and emerge wearing two hospital gowns, the inner facing back and the outer forward. Clothes but not valuables go in a locker. In the treatment room the outer gown and your shoes come off before you get on the shiny hard bed. I am greated in a friendly fashion and my date of birth and address are checked to make sure they have the right person. I am explaining again my name is Peter.
They have prepared a special mold for me to put my legs into to help me stay completely immobilized while being irradiated. I like the care for my protection this signifies. I had 3 tattoos placed on my body at assessment to guide the orientation of the machine and my job is to stay as immobile as possible while the treatment is on. Instructions are to come to treatment with the bladder full and the lower bowel empty. This helps to reduce the impact on body parts not implicated in the quest to kill cancer cells. I don' t think I said this earlier but we are operating on the assumption that I have only local microscopic cancer in or around what doctors call the prostate bed. This includes whatever lymph nodes remaining and since all this tissue is close to my colon and my bladder/urethra the risk of unwanted damage is fairly high. How high? I prefer not to know in detail. I have been assured that my chances of getting through this with a modest level of harm are pretty good. If the treatment loosens my bladder control how the hell am I going to stick to the regime. How am I going to crap in the afternoon. I always go in the morning?
I am informed that the set of gizmos which circle me on a circular track monted on the wall will first check that the info from my assessment is accurate by scanning me and then will deliver the radiation. Just relax they tell me and as in other experiences on hard beds with machines circling me I actually fight to stay awake. Is it a way of dealing with the anxiety, an aspect of my chronic sleep deprivation or am I really that relaxed? I like door number 3. I have to stay awake because if I go to sleep I will probably move and that would be a disater. Pop rap music is playing while the treatment goes on and I think I'm going to bring these guys a Notes to Self CD. They'll be impressed.
Soon enough it's over and I am free to go. This kind of stuff is always anticlimatic as you leave and go back to your life. I walk up the hill to CNIB and confirm my parking savings. Then I forget you can't go east down the street to Bloorview Kids beacuse the street is gated and I have to turn around to go back to Bayview. Determined to be strong and virtuous I go straight to the Metro Store to buy groceries and I'm there when Cherie calls me to be about pick up arrangements at her work. The first one is over. Life is different and it's not.
Tuesday, February 23, 2010
A brief history of my prostate cancer
Feb 18, 2010
I guess the first thing is to clear my personal space so I can write in the present about what is happening to me and how I am dealing with it. I’m going to do a brief history of what got me to this point where I am going to radiation treatment at Sunnybrook Monday through Friday for 6 and half weeks. I was diagnosed with prostate cancer in October 2002 at a routine annual check up. My friend and doctor diagnosed it tentatively with a finger up my ass. A few days later it was confirmed with an over the top PSA and a biopsy 3 days later. A month after diagnosis I had my prostate removed surgically. Cherie, my wife says when I got the news from Dr Singal the urosurgeon from TEGH I said, I’m fucked, I’m fucked.” I can’t remember that but I know I was terrified and then I nearly passed out. I had to lie down on his examining table.
The timing was terrible because I was about to compete for the top job at my agency and I felt the ground slipping out from under me. I managed the surgery and I managed the recovery with lots of help from friends and family. I went back to work about six weeks later as the interim ED and did that for 7 months. I didn’t get the permanent job which may have been a blessing. I go back and fourth on that. I know I impressed myself with how after that initial panic I took it all in stride. For the last seven years I like to tell people that I have used the mail capacity for denial well. I have been living life fully and feeling okay. I surfaced from denial for appointments with Dr Singal where my latest PSA was reviewed and then largely forgot about it in between. I didn't really see msyself as having cancer. My plumbing hasn't been up to the presurgical standard but I have been able to live with that.
There was more to deal with. My PSA didn’t go back to 0 meaning in some ways that the surgery didn’t work. Cancer has leaked out of the prostate into the surrounding tissue and surgery apparently didn’t clear it all out. I lost my seminal vesicles and some lymph nodes which in all fairness may be a part of why I have been healthy for the last seven years. I did go on hormone suppressants for about a year and a half and I adopted a special diet for which Cherie gets all the credit. My PSA went back to 0 on the suppressants and stayed there for several years.
Sometime in the last couple of years it reappeared and it has gradually been creeping up at a rather slow rate. Eventually Dr. Singal began to talk about the possible use of radiation and talked me into a consultation with a radiation oncologist. I was not keen and didn’t bite immediately and given that my PSA change rate was slow he let it ride for awhile. At 0.48 , having seen Dr. Szumacher from Sunnybrook and with recommendations from rounds and something with the awful name of tumor boards I said yes.
Actually I sent the email below and he replied as below
Hi,
Do you have anything from the tumor boards?
Peter
Peter
Yes the feeling was that it probably is a good idea, probably hard to quantitate (sic) the benefit but everyone agreed that you have never followed an expected course. The best explanation is that maybe the 2 years of hormones destroyed any micro metastatic disease and that we now only have local disease. I think I would encourage you to do it but you have to be comfortable with the potential toxicities.
RS
Well this was not exactly do this and you’re cured but his honesty has always impressed me. The truth is I’m risking the toxicity based on a number of assumptions, any or all of which could be wrong but when I think of sitting around and waiting for metastasis it seems like a better alternative. For the record I think the diet Cherie researched for me and which I have stuck to like glue may well have played an important role in keeping cancer down in my body. High soy, lots of fresh fruits and vegetables, no red meat, occasional skinless and boneless chicken, no egg yolks, no dairy products, no nuts and not oil but olive oil. No restrictions on carbohydrates. Essentially we are talking high soy, high anti-oxidant and low fat. I couldn’t stick to the green tea and I eat dark chocolate.
As for the toxicity lots of things could happen and I should know more about the probabilities that I do. On the up side this can be short term pain for long term gain or it could be long term pain and no gain. I won’t bore you with the details just now.
I’m committed to 33 sessions of focused x-rays Monday through Friday for six and a half weeks. To get it I have to go to Sunnybrook which is not bad going from work but, unless I drive, a pain from home. This brings us up to session 1.
I guess the first thing is to clear my personal space so I can write in the present about what is happening to me and how I am dealing with it. I’m going to do a brief history of what got me to this point where I am going to radiation treatment at Sunnybrook Monday through Friday for 6 and half weeks. I was diagnosed with prostate cancer in October 2002 at a routine annual check up. My friend and doctor diagnosed it tentatively with a finger up my ass. A few days later it was confirmed with an over the top PSA and a biopsy 3 days later. A month after diagnosis I had my prostate removed surgically. Cherie, my wife says when I got the news from Dr Singal the urosurgeon from TEGH I said, I’m fucked, I’m fucked.” I can’t remember that but I know I was terrified and then I nearly passed out. I had to lie down on his examining table.
The timing was terrible because I was about to compete for the top job at my agency and I felt the ground slipping out from under me. I managed the surgery and I managed the recovery with lots of help from friends and family. I went back to work about six weeks later as the interim ED and did that for 7 months. I didn’t get the permanent job which may have been a blessing. I go back and fourth on that. I know I impressed myself with how after that initial panic I took it all in stride. For the last seven years I like to tell people that I have used the mail capacity for denial well. I have been living life fully and feeling okay. I surfaced from denial for appointments with Dr Singal where my latest PSA was reviewed and then largely forgot about it in between. I didn't really see msyself as having cancer. My plumbing hasn't been up to the presurgical standard but I have been able to live with that.
There was more to deal with. My PSA didn’t go back to 0 meaning in some ways that the surgery didn’t work. Cancer has leaked out of the prostate into the surrounding tissue and surgery apparently didn’t clear it all out. I lost my seminal vesicles and some lymph nodes which in all fairness may be a part of why I have been healthy for the last seven years. I did go on hormone suppressants for about a year and a half and I adopted a special diet for which Cherie gets all the credit. My PSA went back to 0 on the suppressants and stayed there for several years.
Sometime in the last couple of years it reappeared and it has gradually been creeping up at a rather slow rate. Eventually Dr. Singal began to talk about the possible use of radiation and talked me into a consultation with a radiation oncologist. I was not keen and didn’t bite immediately and given that my PSA change rate was slow he let it ride for awhile. At 0.48 , having seen Dr. Szumacher from Sunnybrook and with recommendations from rounds and something with the awful name of tumor boards I said yes.
Actually I sent the email below and he replied as below
Hi,
Do you have anything from the tumor boards?
Peter
Peter
Yes the feeling was that it probably is a good idea, probably hard to quantitate (sic) the benefit but everyone agreed that you have never followed an expected course. The best explanation is that maybe the 2 years of hormones destroyed any micro metastatic disease and that we now only have local disease. I think I would encourage you to do it but you have to be comfortable with the potential toxicities.
RS
Well this was not exactly do this and you’re cured but his honesty has always impressed me. The truth is I’m risking the toxicity based on a number of assumptions, any or all of which could be wrong but when I think of sitting around and waiting for metastasis it seems like a better alternative. For the record I think the diet Cherie researched for me and which I have stuck to like glue may well have played an important role in keeping cancer down in my body. High soy, lots of fresh fruits and vegetables, no red meat, occasional skinless and boneless chicken, no egg yolks, no dairy products, no nuts and not oil but olive oil. No restrictions on carbohydrates. Essentially we are talking high soy, high anti-oxidant and low fat. I couldn’t stick to the green tea and I eat dark chocolate.
As for the toxicity lots of things could happen and I should know more about the probabilities that I do. On the up side this can be short term pain for long term gain or it could be long term pain and no gain. I won’t bore you with the details just now.
I’m committed to 33 sessions of focused x-rays Monday through Friday for six and a half weeks. To get it I have to go to Sunnybrook which is not bad going from work but, unless I drive, a pain from home. This brings us up to session 1.
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