It’s all over but the testing. As yesterday I arrived early and was in and out very quickly. Most of the regulars were there on the radiation therapy team and I was glad about the chance to give my gift and card to them. They received it graciously but had not opened the card when I left. I was a little disappointed in that and gave myself a talk to remind me that they have many, many patients and their warmth and individuation of me doesn’t mean I’m special. I am going to miss them.
I got my follow up appointment slip for July 22 and a voucher for blood work which apparently has to be done at Sunnybrook. Too bad because it’s much less handy than my local lab. Leaving for the last time I looked around the atrium and felt my distancing happening. When I come back I’m sure it will feel like returning to a school you went to where it’s familiar but you don’t belong. I know it sounds bizarre but I feel let down about it being over. It was good to hear from a friend who has been through the same experience for breast cancer that she too enjoyed the caring and felt a sense of loss and let down at the end. There is some crazy comfort in the routine and good things happened as a result of it. Probably the best was driving Cherie and my son Patrick to work several times. We had the time together and both of them were very appreciative.
As soon as I turned the corner onto Bayview Avenue for my walk to CNIB I began the anticipatory process for getting the news on July 22nd. Perhaps it was because it was a cold rainy day, hard enough after the unusually good weather we’ve had, but I quickly got to a bad news place and shut off the rehearsal. These rehearsals take the form of imaginary conversations with Dr. Szumacher. In my first one she has a big smile and announces that my PSA is zero. In effect I’m cured. I find this course too difficult to stay on because of my fear of being crushed if I am too optimistic. That meant the cure fantasy was immediately followed by a second dialogue in which my PSA has actually risen slightly and she recommends a return to hormone suppressants. After that I focused on tuning in to my surroundings and imagined going into the ravine to look for fiddleheads.
As disconnected as this sounds it comes from a memory of a friend, Doug, and I being in the ravine behind Sunnybrook picking fiddleheads many years ago. Somehow he learned it was place they could be found and with pleasant childhood memories of picking and eating them I joined him readily. We gave it up when it was clearly no longer a secret place because we were joined by dozens of others. Then a memory of reading a piece that fiddleheads are carcinogenic popped into my mind. Fortunately I reached CNIB and was distracted by that experience. Maybe, just maybe, I will make a donation to CNIB in view of all the money they saved me on parking.
Post Script
I haven’t decided yet if I will keep this up during the waiting period. I am thinking probably yes but at less frequent intervals when I feel the need or think I might actually have something to say. The trouble is that to be in the state of denial which puts me back into a more ordinary life I need to stay away from reflection. On the other hand some of it will undoubtedly happen. I can’t always push down the fear and that is probably a good thing. To those of you who have been kind enough to read my blog so far thank you.
Peter
Friday, April 9, 2010
session 32
This was my second last session and I can feel myself beginning to separate from the experience with help from everybody from reception to the therapists. I mean by this that everybody brought it up as soon as I met them. My 5:10 appointment was ahead of schedule and since I was there early I was out at 5:15. After that I headed over to Gus and Suzi’s for a brief visit and played some basketball. I enjoy the remarks about what trooper I am but I feel a little fraudulent when I get them .The truth is that apart from the minor physical issues I’ve describe it hasn’t been that tough. At basketball I’m shorter on energy than is typical but the reality is that I haven’t kept up with my fitness routines through this so who knows which has the most impact on my level of energy. Next week, weather permitting I’ll be back into regular cycling to work. Today I bought some chocolates and candies and a thank you card for the therapists.
Tuesday, April 6, 2010
Sessions 28-31
Sessions 28, 29, 30, 31,
Go figure, but as the end of sessions drew near my interest in writing waned. Perhaps it was the lovely weather. Last Wednesday is blurry. The weather was beautiful and my late afternoon session was on time. Thursday was at 11 and Patrick came with me. How that happened is an interesting story for another time, but I was delighted. In the young person way he took it all in stride and I delivered him up to a Notes meeting after we were done at Sunnybrook. It was a one day work week for me after a week off which was good but kind of disorienting. Being a part time employee with a Blackberry makes one part actor in the play and part voyeur in the workplace. I think reading emails when off a lot is not a good thing.
We had a long Easter weekend of glorious weather as most of you reading this know. For me it was also a three day break from sessions but with only four left it hardly mattered. Friday night Cherie and I and our friends Dan and Ruth went to see ART at the St Lawrence Centre. It was an interesting, even riveting, take on male friendship, triangulation in relationships, art and ego .Lately the words of Fritz Perls have been popping into mind, not just any words but the mantra that,” I am not in this world to meet your expectations and you are not in this world to meet mine etc.” This “prayer” has been mocked/criticized as the sociopath’s prayer focusing on the implied permission to do whatever I want regardless of the cost to others. But it was created for white western liberal intellectuals wrapped in a deeply entrenched sense of obligation to do the right thing by others. In Art we see interesting tensions played out as Marc who hates modern art is outraged that his old friend Serge has the audacity to pay a very large sum of money for a white on white abstract canvas. His view is unabashedly that Serge should meet his expectations while Serge though not as much a bulldozer believes he has something good. Throw a younger man in the mix who is all about pleasing everybody and you have lots of humour and pathos as the triangles slip, slide and lurch crazily around the stage. It’s a lot like what has gone on in my head most of my adult life and I’m sure lots of other people’s too whether they chose to admit it or not.
Strangely going through this experience has served to calm my inner chatter somewhat. It’s not that I have mellowed out completely and I am now philosophical about everything. I still want things. People still make me mad. I can still be fearful but I am at least for the moment less divided internally. I won’t go so far as to say more integrated just yet. Maybe it is just a function of going every day and seeing so many people be ill and vulnerable in one place. It is so humbling. When people compliment me on how well I am handling all this I know because I see it every time I go to Sunnybrook that what I am dealing with is nothing compared to some of my fellow patients.
Yesterday I was really late for my session for the fist time in 31 sessions. Partly I left late and partly it was parking hell at Sunnybrook. I went straight there instead of Sunnybrook instead of CNIB because I wasn’t sure they would be open on Easter Monday. I could have checked but I didn’t. The receptionist rebuked me very gently by asking me to be on time next time. Of course I bristled but managed to contain myself pretty much. When I apologized to the crew they said it didn’t matter because they were a little late too. I have learned so much about grace from this crew.
Today was my last review. The doctor was not there and I admit I felt a little cheated though my nurse is competent and very nice. I found out I get my follow up appointment on Thursday and when I asked she told me that typically they would keep on following me. I protested because I don’t want to give up my 7 years with Rajiv Singal for a doctor, who although very nice, I barely know. The nurse was a little surprised and said most people want to stay on. She allowed that once we get through the first few months I could perhaps alternate. I’ll have to think about that. She advised me to consider myself as cured while I’m waiting for my first PSA result. I doubt if I can pull that off but I’m pretty sure I can forget about the whole business until a week before I get tested. Denial can be so functional. By the way I have built the better bird feeding station which with any luck is squirrel proof. By, by the way I'm going back to imodium. That metamucil is disgusting. In two weeks and two days the side effects will wane.
Go figure, but as the end of sessions drew near my interest in writing waned. Perhaps it was the lovely weather. Last Wednesday is blurry. The weather was beautiful and my late afternoon session was on time. Thursday was at 11 and Patrick came with me. How that happened is an interesting story for another time, but I was delighted. In the young person way he took it all in stride and I delivered him up to a Notes meeting after we were done at Sunnybrook. It was a one day work week for me after a week off which was good but kind of disorienting. Being a part time employee with a Blackberry makes one part actor in the play and part voyeur in the workplace. I think reading emails when off a lot is not a good thing.
We had a long Easter weekend of glorious weather as most of you reading this know. For me it was also a three day break from sessions but with only four left it hardly mattered. Friday night Cherie and I and our friends Dan and Ruth went to see ART at the St Lawrence Centre. It was an interesting, even riveting, take on male friendship, triangulation in relationships, art and ego .Lately the words of Fritz Perls have been popping into mind, not just any words but the mantra that,” I am not in this world to meet your expectations and you are not in this world to meet mine etc.” This “prayer” has been mocked/criticized as the sociopath’s prayer focusing on the implied permission to do whatever I want regardless of the cost to others. But it was created for white western liberal intellectuals wrapped in a deeply entrenched sense of obligation to do the right thing by others. In Art we see interesting tensions played out as Marc who hates modern art is outraged that his old friend Serge has the audacity to pay a very large sum of money for a white on white abstract canvas. His view is unabashedly that Serge should meet his expectations while Serge though not as much a bulldozer believes he has something good. Throw a younger man in the mix who is all about pleasing everybody and you have lots of humour and pathos as the triangles slip, slide and lurch crazily around the stage. It’s a lot like what has gone on in my head most of my adult life and I’m sure lots of other people’s too whether they chose to admit it or not.
Strangely going through this experience has served to calm my inner chatter somewhat. It’s not that I have mellowed out completely and I am now philosophical about everything. I still want things. People still make me mad. I can still be fearful but I am at least for the moment less divided internally. I won’t go so far as to say more integrated just yet. Maybe it is just a function of going every day and seeing so many people be ill and vulnerable in one place. It is so humbling. When people compliment me on how well I am handling all this I know because I see it every time I go to Sunnybrook that what I am dealing with is nothing compared to some of my fellow patients.
Yesterday I was really late for my session for the fist time in 31 sessions. Partly I left late and partly it was parking hell at Sunnybrook. I went straight there instead of Sunnybrook instead of CNIB because I wasn’t sure they would be open on Easter Monday. I could have checked but I didn’t. The receptionist rebuked me very gently by asking me to be on time next time. Of course I bristled but managed to contain myself pretty much. When I apologized to the crew they said it didn’t matter because they were a little late too. I have learned so much about grace from this crew.
Today was my last review. The doctor was not there and I admit I felt a little cheated though my nurse is competent and very nice. I found out I get my follow up appointment on Thursday and when I asked she told me that typically they would keep on following me. I protested because I don’t want to give up my 7 years with Rajiv Singal for a doctor, who although very nice, I barely know. The nurse was a little surprised and said most people want to stay on. She allowed that once we get through the first few months I could perhaps alternate. I’ll have to think about that. She advised me to consider myself as cured while I’m waiting for my first PSA result. I doubt if I can pull that off but I’m pretty sure I can forget about the whole business until a week before I get tested. Denial can be so functional. By the way I have built the better bird feeding station which with any luck is squirrel proof. By, by the way I'm going back to imodium. That metamucil is disgusting. In two weeks and two days the side effects will wane.
Tuesday, March 30, 2010
Session 27, March 30
Session 27
Today was Tuesday, a review day. I saw the nurse and declined to see the doctor. She advised me to stop taking Imodium and try Metamucil. Did I say I was taking Imodium? What’s this, I ask, “Isn’t that to make you loose?” The nurse told me that it my situation by soaking up liquid in the gut it can make you regular. I’m going to try it so we’ll see. She advised me to do lots of kegles, something I’ve had to do before so I’ll get right on to that I also learned that the effects of the radiation which are largely inflammation last about two weeks after the last treatment.
Only 6 more to go but will be another eight weeks after that before I know if all this agro actually achieved anything. I had a whole line of questioning on this subject which went right out of my head but I can ask many questions next week at my last review. Yes that’s right it’s all over next Thursday. What will I do with myself? After treatment I went to Rona and found my flange. I had to go back again and exchange it because I bought one size too large. I thought I was so smart because I used a Vernier caliper to measure the pipe. It turns out I know shit about using one. I was actually worried my flange was too big and yes my tongue is in my cheek.
Today was Tuesday, a review day. I saw the nurse and declined to see the doctor. She advised me to stop taking Imodium and try Metamucil. Did I say I was taking Imodium? What’s this, I ask, “Isn’t that to make you loose?” The nurse told me that it my situation by soaking up liquid in the gut it can make you regular. I’m going to try it so we’ll see. She advised me to do lots of kegles, something I’ve had to do before so I’ll get right on to that I also learned that the effects of the radiation which are largely inflammation last about two weeks after the last treatment.
Only 6 more to go but will be another eight weeks after that before I know if all this agro actually achieved anything. I had a whole line of questioning on this subject which went right out of my head but I can ask many questions next week at my last review. Yes that’s right it’s all over next Thursday. What will I do with myself? After treatment I went to Rona and found my flange. I had to go back again and exchange it because I bought one size too large. I thought I was so smart because I used a Vernier caliper to measure the pipe. It turns out I know shit about using one. I was actually worried my flange was too big and yes my tongue is in my cheek.
Session 26 March 29
Session 26
Nothing too remarkable about today except that it was the quickest session yet. I was in and out in less than half an hour and it could have been quicker if I had been ready quicker. I couldn’t find an empty locker and wound up use part of someone else’s. Overall I continue to feel pretty good except for some gastric upsets. It’s embarrassing to admit but I am also having trouble controlling my bladder, inflammation of some nerves or muscles or maybe both. Also getting so piles but not too severe; enough of that.
I saw the young man at CNIB who told me I shouldn’t be parking there but he just smiled and nodded from behind his reception desk. Later in the day I began my attempt to build a more squirrel proof bird feeder with a trip down to a scarp yard to by a piece of 10 foot pipe. I didn’t find it there or at the building supply store they sent me to but the electrical supply store they sent me too had exactly what I wanted. Now all I need is a flange for the end of the pipe. That will be yet another voyage of discovery. With the weather getting warmed again and me with time that has to be taken before March 31 it’s a great time to be out of doors and playing.
Nothing too remarkable about today except that it was the quickest session yet. I was in and out in less than half an hour and it could have been quicker if I had been ready quicker. I couldn’t find an empty locker and wound up use part of someone else’s. Overall I continue to feel pretty good except for some gastric upsets. It’s embarrassing to admit but I am also having trouble controlling my bladder, inflammation of some nerves or muscles or maybe both. Also getting so piles but not too severe; enough of that.
I saw the young man at CNIB who told me I shouldn’t be parking there but he just smiled and nodded from behind his reception desk. Later in the day I began my attempt to build a more squirrel proof bird feeder with a trip down to a scarp yard to by a piece of 10 foot pipe. I didn’t find it there or at the building supply store they sent me to but the electrical supply store they sent me too had exactly what I wanted. Now all I need is a flange for the end of the pipe. That will be yet another voyage of discovery. With the weather getting warmed again and me with time that has to be taken before March 31 it’s a great time to be out of doors and playing.
Sunday, March 28, 2010
Session 25
Today I had a long lunch with my old friend Bob, who then drove me to my treatment appointment. This continues the theme from yesterday with the warmth and pleasure of friendship keeping the cancer and the radiation in perspective. Yes that's true Bob even with our gloomy conversation about the failures of the Liberal party, the fear of the Harper crew and our regaling each other with our illness stories. I arrived early and had to wait quite a long time because they were late. I didn't mind. It was Friday and I had two days off. Best of all I already knew Cherie was coming to pick me up and when she did, apologizing because traffic was bad I didn't care. I was happy just to see her.
Saturday, March 27, 2010
Session 24
Session 24 March 25
Today is Pat’s birthday and would have liked to do breakfast for him but instead I dropped Cherie at work and went for treatment. It was fast, less than an hour in and out. I headed back home but Pat was gone already. I felt down and tired and puttered around doing not much for awhile. I knew I had to clean up to go to a retirement event for Liz Janzen, a wonderful nurse retiring from long service in leadership roles at Public Health. I sat with Liz on the Board of the Woman Abuse Council of Toronto and knew her as an excellent person. Following that it was on to a restaurant to meet the rest of the family for our traditional birthday dinner out followed by cake and presents at home. After talking to Cherie on the phone I realized she was going to be up against it coming home at 6 to bake cakes (there are always 2 cakes because of my diet restrictions). I decided to surprise her by doing the baking but in the end I had to let her in on it because I didn’t know where the recipe for her excellent carrot cake was. Still I did it and I got in to it. Fatigue fell away driven out by virtue and a sense of adventure. Cherie is an excellent baker. I got it all done and everything seemed okay. I sampled mine, baker’s privilege, cleaned up, put up the birthday banner and took the car to Cherie. She dropped me at Gerrard and Coxwell for the streetcar and headed home to frost the birthday cake. It was lovely to have a half hour on the streetcar. Many people don’t like transit but for me it is privileged time. I read, I do puzzles, I listen to my IPod and I observe the other passengers. Sometimes I even have conversations. I regard the time as a gift.
The event was fun as colleagues of Liz paid tribute, often in humorous ways. I was sad that no one told of her huge contribution to WACT but I also realized that it was one a many things where she made a difference for people who were not getting equity and inclusion in society. It was also good that my daughter in law Sara was there and a friend, Linda, from ballroom dancing. In an amazing small world experience it turned out that Liz’s daughter is a friend of Sara and my sons. After that it was birthday dinner at a new east end restaurant Cherie discovered and which worked out very well. I heard an amazing story from Patrick about how he had scored the winning basket at the buzzer in the league he and Matt play in. This had happened about an hour earlier and what a birthday present. Cherie had used her extra time to pick them up at the gym and we all made it in good time with Sara driving the two of us. So complicated but it worked so well. At home my cake was approved and Patrick loved his new computer speakers and two new games for PS3. So much excellent family and friend life. It puts the radiation in perspective.
Today is Pat’s birthday and would have liked to do breakfast for him but instead I dropped Cherie at work and went for treatment. It was fast, less than an hour in and out. I headed back home but Pat was gone already. I felt down and tired and puttered around doing not much for awhile. I knew I had to clean up to go to a retirement event for Liz Janzen, a wonderful nurse retiring from long service in leadership roles at Public Health. I sat with Liz on the Board of the Woman Abuse Council of Toronto and knew her as an excellent person. Following that it was on to a restaurant to meet the rest of the family for our traditional birthday dinner out followed by cake and presents at home. After talking to Cherie on the phone I realized she was going to be up against it coming home at 6 to bake cakes (there are always 2 cakes because of my diet restrictions). I decided to surprise her by doing the baking but in the end I had to let her in on it because I didn’t know where the recipe for her excellent carrot cake was. Still I did it and I got in to it. Fatigue fell away driven out by virtue and a sense of adventure. Cherie is an excellent baker. I got it all done and everything seemed okay. I sampled mine, baker’s privilege, cleaned up, put up the birthday banner and took the car to Cherie. She dropped me at Gerrard and Coxwell for the streetcar and headed home to frost the birthday cake. It was lovely to have a half hour on the streetcar. Many people don’t like transit but for me it is privileged time. I read, I do puzzles, I listen to my IPod and I observe the other passengers. Sometimes I even have conversations. I regard the time as a gift.
The event was fun as colleagues of Liz paid tribute, often in humorous ways. I was sad that no one told of her huge contribution to WACT but I also realized that it was one a many things where she made a difference for people who were not getting equity and inclusion in society. It was also good that my daughter in law Sara was there and a friend, Linda, from ballroom dancing. In an amazing small world experience it turned out that Liz’s daughter is a friend of Sara and my sons. After that it was birthday dinner at a new east end restaurant Cherie discovered and which worked out very well. I heard an amazing story from Patrick about how he had scored the winning basket at the buzzer in the league he and Matt play in. This had happened about an hour earlier and what a birthday present. Cherie had used her extra time to pick them up at the gym and we all made it in good time with Sara driving the two of us. So complicated but it worked so well. At home my cake was approved and Patrick loved his new computer speakers and two new games for PS3. So much excellent family and friend life. It puts the radiation in perspective.
Session 23
Session 23 March 24
Today was busy in spite of ostensibly being a day off. My morning was spent on household stuff and catching up on blogs for Monday and Tuesday. Then I went shopping for Patrick's birthday present on College followed by a pleasant hour and a half in Gus and Suzi's backyard, with them of course. I headed up to my 23rd at 5 and confirmed I could not park at CNIB because the building would be closed when I came out. How inconsiderate of them. Not surprisingly for the end of the day SYN1 was running very late, not because of patients but because of system crashes. My team was apologetic but I knew it was through no fault of theirs. Naturally I was parked in the $2/half hour lot and before I got in for treatment had to make a trip to the lot to pay for earlier optimism. By the time we were done it was $16.
My therapists confirmed that this was session 23 and the change would start on Thursday. They also reminded me that even though the field of irradiation would be smaller the effect of radiation is cumulative so warned against looking for immediate relief of side effects. I got out about 7 and went to the Metro at Eglinton and Bayview for groceries, strongly wishing I had done the shop in the morning. Cherie called while I was there and we agreed on fish for supper. I got some very expensive organic salmon, but hey we’re worth it. She had the veg. ready when I got home but it was well after 8 when we ate. The weather was good and I cranked up the BBQ for the first time in a while. Still it was late; I was bone tired and had to be back at 9:20 the next morning.
Today was busy in spite of ostensibly being a day off. My morning was spent on household stuff and catching up on blogs for Monday and Tuesday. Then I went shopping for Patrick's birthday present on College followed by a pleasant hour and a half in Gus and Suzi's backyard, with them of course. I headed up to my 23rd at 5 and confirmed I could not park at CNIB because the building would be closed when I came out. How inconsiderate of them. Not surprisingly for the end of the day SYN1 was running very late, not because of patients but because of system crashes. My team was apologetic but I knew it was through no fault of theirs. Naturally I was parked in the $2/half hour lot and before I got in for treatment had to make a trip to the lot to pay for earlier optimism. By the time we were done it was $16.
My therapists confirmed that this was session 23 and the change would start on Thursday. They also reminded me that even though the field of irradiation would be smaller the effect of radiation is cumulative so warned against looking for immediate relief of side effects. I got out about 7 and went to the Metro at Eglinton and Bayview for groceries, strongly wishing I had done the shop in the morning. Cherie called while I was there and we agreed on fish for supper. I got some very expensive organic salmon, but hey we’re worth it. She had the veg. ready when I got home but it was well after 8 when we ate. The weather was good and I cranked up the BBQ for the first time in a while. Still it was late; I was bone tired and had to be back at 9:20 the next morning.
Wednesday, March 24, 2010
Session 22 (or is it 23?)
Session 22, March 23, 2010
Session 22 was a land mark appointment. On a humorous note I went in for treatment having forgotten to take off my underwear after 21 straight times of doing it. Was my unconscious at work protecting me from butt exposure? The therapists were as usual very graceful and when I apologized because they had to pull it out of the way to see my tattoos they said no big deal.
I’ve had not gas problems since blanding (new word) my diet and taking enzymes but bowel upset continues to be an issue. Here’s the big news. The worst is over. I was reminded by my doctor when I did my Tuesday review that the last 10 session are more narrowly focused on the prostate bed. The first 23 are broader and include the lymph nodes in the surrounding area. A consequence of this change is that the wall of my colon will be much left affected by the radiation. According to my doctor I should gradually experience less and les gastric upset. I do have to check in because I believe she said I had completed 23 but by my count that doesn’t happen until the next one.
Another consequence of reaching this milestone and seeing the end is in sight is that my perspective shifts to the future. In the beginning and on into the middle of treatment I was entirely preoccupied with getting through the treatment. My initial fears subsided as it became apparent both from my experience and the stories of others further along that I was unlikely to have sever side effects. Still the end seemed far away. Suddenly that is not the case. The end seems near and now I am focusing spontaneously on the impact of the radiation. Will it cure me; have no impact or something in between? I hadn’t thought about it but I know from previous experience that the weeks of waiting after the treatment before I can get a meaningful PSA result will be long and in some ways harder than the treatment.
Session 22 was a land mark appointment. On a humorous note I went in for treatment having forgotten to take off my underwear after 21 straight times of doing it. Was my unconscious at work protecting me from butt exposure? The therapists were as usual very graceful and when I apologized because they had to pull it out of the way to see my tattoos they said no big deal.
I’ve had not gas problems since blanding (new word) my diet and taking enzymes but bowel upset continues to be an issue. Here’s the big news. The worst is over. I was reminded by my doctor when I did my Tuesday review that the last 10 session are more narrowly focused on the prostate bed. The first 23 are broader and include the lymph nodes in the surrounding area. A consequence of this change is that the wall of my colon will be much left affected by the radiation. According to my doctor I should gradually experience less and les gastric upset. I do have to check in because I believe she said I had completed 23 but by my count that doesn’t happen until the next one.
Another consequence of reaching this milestone and seeing the end is in sight is that my perspective shifts to the future. In the beginning and on into the middle of treatment I was entirely preoccupied with getting through the treatment. My initial fears subsided as it became apparent both from my experience and the stories of others further along that I was unlikely to have sever side effects. Still the end seemed far away. Suddenly that is not the case. The end seems near and now I am focusing spontaneously on the impact of the radiation. Will it cure me; have no impact or something in between? I hadn’t thought about it but I know from previous experience that the weeks of waiting after the treatment before I can get a meaningful PSA result will be long and in some ways harder than the treatment.
Session 21
Session 21, March 22, 2010
Session 21 was routine although on one of the few occasions I was early they were quite late. It was annoying mostly because I started a week off and was sitting around the waiting room unequipped for waiting, i.e. no IPod and no puzzles. I was early because Matt made a call to take him to his dentist downtown, having made himself potentially late but going to the subway station without his Metro Pass and needing to go back home again. I decide to go straight on to my appointment but could easily have gone home first, Patrick had offered to go with me and I could have used the company.
Session 21 was routine although on one of the few occasions I was early they were quite late. It was annoying mostly because I started a week off and was sitting around the waiting room unequipped for waiting, i.e. no IPod and no puzzles. I was early because Matt made a call to take him to his dentist downtown, having made himself potentially late but going to the subway station without his Metro Pass and needing to go back home again. I decide to go straight on to my appointment but could easily have gone home first, Patrick had offered to go with me and I could have used the company.
Monday, March 22, 2010
Session 20
Session 20 March 19
This Friday session was most notable for being at 8:20 in the morning. It worked for me because it freed up my morning so I could be available for March madness with Matt without interruption. It required a big accommodation from Cherie and she stepped up, allowing me to drop her at work before 8. This allowed me to use the car. Support comes in many ways. I was in and out in less than an hour and continued on my run with no comment on gas in my colon. My enzymes and my diet shift seem to do the trick. My gut doesn’t feel good but it’s doing it without gas. The whole business about full bladder and empty colon is always coming up in the waiting area and the teams don’t always handle it the same way. For example I’m on Syn1 and wait in the same area as Syn2. The therapists from that team are always asking about when patients last drank water and last voided. People have to drink more and wait. My impression is that this is rare for our Syn1 group although this is not a scientific sample. Sometimes you have to wait a long time past your appointment when they are busy and on occasion you just have to go. I’ve done that and popped a few cups of water, gone in a few minutes later and not had a problem. Is this team culture at work?
It was good on Friday to know that I was done until Monday and could loosen up a little on diet for the rest of Friday and Saturday. March Madness with Matt was a lot of fun. The May like weather continued and we went for little walk, not too much time away from the games.
This Friday session was most notable for being at 8:20 in the morning. It worked for me because it freed up my morning so I could be available for March madness with Matt without interruption. It required a big accommodation from Cherie and she stepped up, allowing me to drop her at work before 8. This allowed me to use the car. Support comes in many ways. I was in and out in less than an hour and continued on my run with no comment on gas in my colon. My enzymes and my diet shift seem to do the trick. My gut doesn’t feel good but it’s doing it without gas. The whole business about full bladder and empty colon is always coming up in the waiting area and the teams don’t always handle it the same way. For example I’m on Syn1 and wait in the same area as Syn2. The therapists from that team are always asking about when patients last drank water and last voided. People have to drink more and wait. My impression is that this is rare for our Syn1 group although this is not a scientific sample. Sometimes you have to wait a long time past your appointment when they are busy and on occasion you just have to go. I’ve done that and popped a few cups of water, gone in a few minutes later and not had a problem. Is this team culture at work?
It was good on Friday to know that I was done until Monday and could loosen up a little on diet for the rest of Friday and Saturday. March Madness with Matt was a lot of fun. The May like weather continued and we went for little walk, not too much time away from the games.
Session 19
Session 19 March 18
I’ve fallen off the pace of blogging for the first time in since near the beginning of treatment. It’s Monday morning and I can barely remember what Thursday was like. I know I elected to work from home because I was without car and owed time by the agency. The Lawrence bus worked brilliantly though I may already have said that. The weather continued to be May like and I write this it has returned to more seasonal March weather. I recall that when I arrived the Atrium was fuller than I’ve ever seen it and then a few minutes later emptied almost magically. My appointment was a t 12:10 and I suppose people went for lunch. I had a lovely conversation with an elderly woman, originally from Guyana. She tried a little bit to engage me in a conversation about God but when I steered away accepted it with easy grace and we talked instead about treatment and I learned a little of her life in the country before coming here. She uses a walker and Wheeltrans and I as I learned how much margin she must allow for treatment times I was reminded how lucky those of us who are temporarily able bodied are.
I’ve fallen off the pace of blogging for the first time in since near the beginning of treatment. It’s Monday morning and I can barely remember what Thursday was like. I know I elected to work from home because I was without car and owed time by the agency. The Lawrence bus worked brilliantly though I may already have said that. The weather continued to be May like and I write this it has returned to more seasonal March weather. I recall that when I arrived the Atrium was fuller than I’ve ever seen it and then a few minutes later emptied almost magically. My appointment was a t 12:10 and I suppose people went for lunch. I had a lovely conversation with an elderly woman, originally from Guyana. She tried a little bit to engage me in a conversation about God but when I steered away accepted it with easy grace and we talked instead about treatment and I learned a little of her life in the country before coming here. She uses a walker and Wheeltrans and I as I learned how much margin she must allow for treatment times I was reminded how lucky those of us who are temporarily able bodied are.
Thursday, March 18, 2010
Session 18
Session 18, March 17
Sporting a green sweater for St Patrick’s Day I rushed off to my session on a gorgeous March day. Only a question from Cherie got me there on time since for some reason I was thinking treatment was an hour later. It felt like May. Of course the therapists with the exception of the person who came out to get me never saw my greenery. I was in my gowns as usual and as I often do I wondered if there isn’t a way to eliminate the cost of washing thousands of hospital gowns that are worn for only a few minutes. I suppose washing is better than disposable but there is still the water, the labour, the chemicals and the energy for washing. The solution would have to involve more privacy for patients than the change and sit in a public area allows. Maybe it could be done like a psychiatrist’s office with separate in-doors and out-doors; in this case with a change room before the in-door. It might at least cut it down to one gown per patient. I suppose there are experts looking at process design all the time for these things given the continual pressure to cut hospital costs. Maybe the washing machines could be powered by excess patient gas or hot air as in this case.
What one therapist did notice was my new and very short hair cut. When I said my wife doesn’t like it so short this generated a whole conversation among the 4 of us, all male.
Sporting a green sweater for St Patrick’s Day I rushed off to my session on a gorgeous March day. Only a question from Cherie got me there on time since for some reason I was thinking treatment was an hour later. It felt like May. Of course the therapists with the exception of the person who came out to get me never saw my greenery. I was in my gowns as usual and as I often do I wondered if there isn’t a way to eliminate the cost of washing thousands of hospital gowns that are worn for only a few minutes. I suppose washing is better than disposable but there is still the water, the labour, the chemicals and the energy for washing. The solution would have to involve more privacy for patients than the change and sit in a public area allows. Maybe it could be done like a psychiatrist’s office with separate in-doors and out-doors; in this case with a change room before the in-door. It might at least cut it down to one gown per patient. I suppose there are experts looking at process design all the time for these things given the continual pressure to cut hospital costs. Maybe the washing machines could be powered by excess patient gas or hot air as in this case.
What one therapist did notice was my new and very short hair cut. When I said my wife doesn’t like it so short this generated a whole conversation among the 4 of us, all male.
Session 17
Session 17 March 16
Over the half way hump today with 16 more to go. I wrote a longish essay in manuscript sitting in the Atrium before today’s session but have not had time at the computer and the notebook at the same time so maybe the material will turn up somewhere at a later time. I had my review with the doctor first and since things are going well there wasn’t much to talk about. Treatment was uneventful too except that having slept badly the night before I managed to fall asleep on each of the seven treatments while trying to count the number of hits for each placement. Each time I would wake when the linear accelerator changed position. The guys agreed it would be okay for me to use my phone t0 video the machines rotating in the pre-scan stage. If O can make that work maybe I can put the video in my blog to give others a sense of what it is like on the table. No promises. PC
Over the half way hump today with 16 more to go. I wrote a longish essay in manuscript sitting in the Atrium before today’s session but have not had time at the computer and the notebook at the same time so maybe the material will turn up somewhere at a later time. I had my review with the doctor first and since things are going well there wasn’t much to talk about. Treatment was uneventful too except that having slept badly the night before I managed to fall asleep on each of the seven treatments while trying to count the number of hits for each placement. Each time I would wake when the linear accelerator changed position. The guys agreed it would be okay for me to use my phone t0 video the machines rotating in the pre-scan stage. If O can make that work maybe I can put the video in my blog to give others a sense of what it is like on the table. No promises. PC
Tuesday, March 16, 2010
Session 16, March 15 half way through
Session 16 March 15
I’m writing at 6:15 AM following a futile attempt to return to sleep beginning at about 5. This kind of early morning insomnia has plagued me off an on for years, coming and going with stress levels and sometimes for no apparent reason. It could be some of both just now I suppose. I did get up at 7 yesterday and went to co-facilitate a group on my day off. Doing the group wasn’t stressful but it was a significant change to my normally lazy Monday routine. It happened because it is hard to get relief on a Monday morning and we needed relief for the relief. Of course we just shifted to day light saving time as well and my body is convinced it is later than the clock indicates Yesterday’s treatment was unremarkable except the therapists told me I had gas again, not as much as before I changed my diet but more than the end of the week. I don’t have a clue why, maybe the couple of beers I drank over the weekend. I’ve also wondered if I have some less virulent version of the stomach flu Cherie is still recovering from since many of my digestive problems of late are similar but less severe.
Today I’ll have my 17th session and pass the half way mark. Inevitably I find myself reflecting a little on the impact of this radiation. Its one thing to be tolerating it well but the question of its impact on my PSA (aka cancer growth) remains to be seen and won’t be known for weeks. I’ll have a review today but as long as treatment goes without complication there isn’t much to talk about. Sunday I had a disturbing conversation with a friend about a friend of his who has been taking hormone suppressants, post radiation. This man, whom I don’t know and who lives elsewhere apparently experienced memory loss and internal bleeding from the treatment, something I did not suffer 7 years ago when I took them. I did not recognize the product name and it may be something quite different. Still it does make me uneasy because it’s been suggested to me that I may have to go back on hormone suppressants. What I remember is the post menopausal physiology, puffiness, hot flashes and the loss of muscle mass. Still my life continued very positively and here I am years later, a very vigorous 66. I truly do understand that in the scheme of things I am lucky.
I must remember to ask for an early time on Friday so I can do the March Madness marathon Matt has invited me to share. Try saying that three times fast. It’s going to be fun.
I’m writing at 6:15 AM following a futile attempt to return to sleep beginning at about 5. This kind of early morning insomnia has plagued me off an on for years, coming and going with stress levels and sometimes for no apparent reason. It could be some of both just now I suppose. I did get up at 7 yesterday and went to co-facilitate a group on my day off. Doing the group wasn’t stressful but it was a significant change to my normally lazy Monday routine. It happened because it is hard to get relief on a Monday morning and we needed relief for the relief. Of course we just shifted to day light saving time as well and my body is convinced it is later than the clock indicates Yesterday’s treatment was unremarkable except the therapists told me I had gas again, not as much as before I changed my diet but more than the end of the week. I don’t have a clue why, maybe the couple of beers I drank over the weekend. I’ve also wondered if I have some less virulent version of the stomach flu Cherie is still recovering from since many of my digestive problems of late are similar but less severe.
Today I’ll have my 17th session and pass the half way mark. Inevitably I find myself reflecting a little on the impact of this radiation. Its one thing to be tolerating it well but the question of its impact on my PSA (aka cancer growth) remains to be seen and won’t be known for weeks. I’ll have a review today but as long as treatment goes without complication there isn’t much to talk about. Sunday I had a disturbing conversation with a friend about a friend of his who has been taking hormone suppressants, post radiation. This man, whom I don’t know and who lives elsewhere apparently experienced memory loss and internal bleeding from the treatment, something I did not suffer 7 years ago when I took them. I did not recognize the product name and it may be something quite different. Still it does make me uneasy because it’s been suggested to me that I may have to go back on hormone suppressants. What I remember is the post menopausal physiology, puffiness, hot flashes and the loss of muscle mass. Still my life continued very positively and here I am years later, a very vigorous 66. I truly do understand that in the scheme of things I am lucky.
I must remember to ask for an early time on Friday so I can do the March Madness marathon Matt has invited me to share. Try saying that three times fast. It’s going to be fun.
Monday, March 15, 2010
Session 15
Session 15 March 12, 2010
The good news, Cherie’s getting better. The bad news, I haven’t been able to make the kitchen faucet work at Matt’s place. My 14th treatment was a perfect in and out on schedule. The exciting thing about the trip was robins. On the CNIB grassy slope in front of the building I spotted one on my way to Sunnybrook and felt the irrational lift of this harbinger of spring. On the way back I saw not one, not two but five robins looking for worms in the grass. I got a new time for Monday and I just realized I may have a conflict with a dental appointment but I can’t remember the time of the appointment. It’s my fault entirely for not keeping track. I’m sure 90% of the hassles in my life can be traced back to things I should have done and didn’t and things I did and shouldn’t have, a sobering thought.
I was happy that Matt got up to date on my blog today and was touched that he was touched by it. He said he laughed out loud a couple of times which pleased me. I was startled when he said he was surprised t o see so many names, especially doctors, named. I saw an article recently about people’s willingness to disclose themselves on blogs. The article was not overtly critical but it triggered something in me that made me question the wisdom of doing this. I felt vulnerable and when Matt talked about exposing others, more curious than critical on his part, I still thought perhaps I’m going too far and without anyone’s consent. I have been thinking about this on and off all evening. On reflection I’m okay with what I’m doing. I won’t be fighting any wars on these pages and people are accustomed to me being frank about myself.
It’s Sunday now, I fixed the faucet on the second attempt on Saturday evening and blew it on installing a new doorknob. Lesson here, don’t assume very old memories are accurate, read the instructions. I now know how to install it. Cherie and I missed a lot of dance opportunities and a party this week but it looks like we’ll be able to get back at it Thursday.
Dan & Ruth, far away I miss you.
The good news, Cherie’s getting better. The bad news, I haven’t been able to make the kitchen faucet work at Matt’s place. My 14th treatment was a perfect in and out on schedule. The exciting thing about the trip was robins. On the CNIB grassy slope in front of the building I spotted one on my way to Sunnybrook and felt the irrational lift of this harbinger of spring. On the way back I saw not one, not two but five robins looking for worms in the grass. I got a new time for Monday and I just realized I may have a conflict with a dental appointment but I can’t remember the time of the appointment. It’s my fault entirely for not keeping track. I’m sure 90% of the hassles in my life can be traced back to things I should have done and didn’t and things I did and shouldn’t have, a sobering thought.
I was happy that Matt got up to date on my blog today and was touched that he was touched by it. He said he laughed out loud a couple of times which pleased me. I was startled when he said he was surprised t o see so many names, especially doctors, named. I saw an article recently about people’s willingness to disclose themselves on blogs. The article was not overtly critical but it triggered something in me that made me question the wisdom of doing this. I felt vulnerable and when Matt talked about exposing others, more curious than critical on his part, I still thought perhaps I’m going too far and without anyone’s consent. I have been thinking about this on and off all evening. On reflection I’m okay with what I’m doing. I won’t be fighting any wars on these pages and people are accustomed to me being frank about myself.
It’s Sunday now, I fixed the faucet on the second attempt on Saturday evening and blew it on installing a new doorknob. Lesson here, don’t assume very old memories are accurate, read the instructions. I now know how to install it. Cherie and I missed a lot of dance opportunities and a party this week but it looks like we’ll be able to get back at it Thursday.
Dan & Ruth, far away I miss you.
Thursday, March 11, 2010
Session 14
Session 14 March 11
Today was another great meeting day. Our working group gelled and became both more expressive and more creative. I arrived a bit late because I had to to make sure Cherie’s work calls were made to inform people she was still ill and arrange for my older son Matt to come over. My trip to Sunnybrook late in the day was uneventful. I got on the right bus and got there on time. Only one of my regulars was there and the woman who was subbing was a little less smooth on the machine adjustments. She more than compensated with her caring attitude. I was delighted to hear from a man older than me and clearly less fit that he had already had 27 treatments with no side effects. His experience may have no relevance to me but I was happy for him and encouraged for me notwithstanding
Going home on the TTC was less than perfect because of a slowdown on the TTC Yonge Street subway. Trains were being stopped at Bloor because of a problem at Queen and for some reason this made it very slow to get to Bloor. A young woman next to me pointed out that the TTC announcer told two different stories about what was happening. The first account was that there was an injured passenger at track level. The next one announced a power outage leading to speculation someone had jumped and the first announcement had been a mistake since the TTC usually keeps it quiet about suicides. I hadn’t been paying much attention being more interested in Paul Simon on my iPod but I started listening. Interestingly after one more announcement of power outage the announcer went back to injured passenger. One can only imagine the frenzied behind the scene conversations that lead to the changing messages. When I talked about it to a friendly street car driver on my last stretch home his response was to laugh and to say nobody has any idea what is going on. Let’s hope he’s wrong.
At home Cherie was still quite ill but maybe a little better and Patrick had cared for her all day though Matt had been willing to do more. We spent some time watching TV and this was a victory for Cherie who had previously felt too ill to leave her bed. As I write at 12:30 I realize again that in the press of life even with these daily trips to the big machine in the basement I am able to stay in the present almost all the time. I am not programmed to belief I will have a bad outcome and I hope that belief has some influence on my body and this struggle to eliminate rogue cells. I’ll find out soon enough.
Today was another great meeting day. Our working group gelled and became both more expressive and more creative. I arrived a bit late because I had to to make sure Cherie’s work calls were made to inform people she was still ill and arrange for my older son Matt to come over. My trip to Sunnybrook late in the day was uneventful. I got on the right bus and got there on time. Only one of my regulars was there and the woman who was subbing was a little less smooth on the machine adjustments. She more than compensated with her caring attitude. I was delighted to hear from a man older than me and clearly less fit that he had already had 27 treatments with no side effects. His experience may have no relevance to me but I was happy for him and encouraged for me notwithstanding
Going home on the TTC was less than perfect because of a slowdown on the TTC Yonge Street subway. Trains were being stopped at Bloor because of a problem at Queen and for some reason this made it very slow to get to Bloor. A young woman next to me pointed out that the TTC announcer told two different stories about what was happening. The first account was that there was an injured passenger at track level. The next one announced a power outage leading to speculation someone had jumped and the first announcement had been a mistake since the TTC usually keeps it quiet about suicides. I hadn’t been paying much attention being more interested in Paul Simon on my iPod but I started listening. Interestingly after one more announcement of power outage the announcer went back to injured passenger. One can only imagine the frenzied behind the scene conversations that lead to the changing messages. When I talked about it to a friendly street car driver on my last stretch home his response was to laugh and to say nobody has any idea what is going on. Let’s hope he’s wrong.
At home Cherie was still quite ill but maybe a little better and Patrick had cared for her all day though Matt had been willing to do more. We spent some time watching TV and this was a victory for Cherie who had previously felt too ill to leave her bed. As I write at 12:30 I realize again that in the press of life even with these daily trips to the big machine in the basement I am able to stay in the present almost all the time. I am not programmed to belief I will have a bad outcome and I hope that belief has some influence on my body and this struggle to eliminate rogue cells. I’ll find out soon enough.
Session 13
Session 13 March 10
Today was full of small lessons. I spent the day with folks from other agencies running PAR programs from around Ontario and some key planners from the Ontario Victim Services Secretariat. We are a provincial advisory group looking at potentially large changes to the programs we run. I have been getting more excited than I imagined about possibility in spite of the usual there is no new money I left a bit before the group ended its day to make my 4:30 appointment. .
My first small lesson came at the Davisville subway station when I wound up on a bus that went to Bayview and stopped. I thought only buses going up Bayview through Sunnybrook stopped at the platform I was at. The lesson was look at the signs and the bus numbers.
I got a transfer and went to a stop on Bayview for a bus that never arrived. At about 3 minutes before my scheduled appointment I caught a cab. I had been standing there chatting with a visually impaired woman (caring a white cane) and I offered her a left, saying I supposed she was going to CNIB. She politely declined saying she was just going to Eglinton. Once again I was caught by stereotyping (or maybe she wasn’t about to take a cab with a strange man). Somehow I don’t think that was the issue. On the way up two stop lights were out and I realized why the buses were so slow, as traffic was at a crawl as we neared Eglinton and continued past what used to be Hogan Pontiac, a casualty of the GM bankruptcy.
I was late but my therapists didn’t seem to mind. I was also worried. I made big dietary changes to get gas out of system, cutting out fresh vegetables and whole grains. Everything ground to a stop and I felt awful. I was sure it would b e problem on the treatment table but treatment went ahead and the guys said I had never looked better inside. Another lesson learned; discomfort doesn’t necessarily mean gas.
When I left I tried the Lawrence bus for the first time in case the lights were still out. It worked very well so I should find out how frequently it runs. Not long after I arrived home Cherie turned up somewhat early and very ill. She had been forced to send clients home in mid session because of stomach flu. Patrick arrived shortly after and turned out to be a marvelous care giver, taking the role until late in the evening. It was a long and difficult night for Cherie but although I had to get up in the night to assist her Patrick’s support earlier really helped. Just the day before this sudden onset flu Cherie had been tenderly supporting me and will no doubt again. I love my family.
Today was full of small lessons. I spent the day with folks from other agencies running PAR programs from around Ontario and some key planners from the Ontario Victim Services Secretariat. We are a provincial advisory group looking at potentially large changes to the programs we run. I have been getting more excited than I imagined about possibility in spite of the usual there is no new money I left a bit before the group ended its day to make my 4:30 appointment. .
My first small lesson came at the Davisville subway station when I wound up on a bus that went to Bayview and stopped. I thought only buses going up Bayview through Sunnybrook stopped at the platform I was at. The lesson was look at the signs and the bus numbers.
I got a transfer and went to a stop on Bayview for a bus that never arrived. At about 3 minutes before my scheduled appointment I caught a cab. I had been standing there chatting with a visually impaired woman (caring a white cane) and I offered her a left, saying I supposed she was going to CNIB. She politely declined saying she was just going to Eglinton. Once again I was caught by stereotyping (or maybe she wasn’t about to take a cab with a strange man). Somehow I don’t think that was the issue. On the way up two stop lights were out and I realized why the buses were so slow, as traffic was at a crawl as we neared Eglinton and continued past what used to be Hogan Pontiac, a casualty of the GM bankruptcy.
I was late but my therapists didn’t seem to mind. I was also worried. I made big dietary changes to get gas out of system, cutting out fresh vegetables and whole grains. Everything ground to a stop and I felt awful. I was sure it would b e problem on the treatment table but treatment went ahead and the guys said I had never looked better inside. Another lesson learned; discomfort doesn’t necessarily mean gas.
When I left I tried the Lawrence bus for the first time in case the lights were still out. It worked very well so I should find out how frequently it runs. Not long after I arrived home Cherie turned up somewhat early and very ill. She had been forced to send clients home in mid session because of stomach flu. Patrick arrived shortly after and turned out to be a marvelous care giver, taking the role until late in the evening. It was a long and difficult night for Cherie but although I had to get up in the night to assist her Patrick’s support earlier really helped. Just the day before this sudden onset flu Cherie had been tenderly supporting me and will no doubt again. I love my family.
Tuesday, March 9, 2010
Session 12
Session 12 Mar 9
I don’t know if it was the pasta or the Ace Bakery toasted bits, or the bread I made and ate a lot of if. Something gave me more gas the than an Alberta well. I was up in the night twice and awake a bunch of times. It was not good. The truth is I don’t know what caused it. Among other things it followed my first treatment in 3 days and on the weekend my gut settled down nicely. My bread didn’t mix properly in the machine and was very dense and probably full of unutilized yeast. The garlic is a possible candidate. Maybe I just ate too much. Since I am already on highly restricted diet eliminating fresh veggies, spice and acidic foods limits my options. Yesterday I was bored and pigged out on bread in various forms thinking it was bland and safe. Not so much safe.
Today I felt much better though a little sleep deprived and made my treatment without having to get up walk. I was apparently not perfect but adequate, the story of my life. My doctor came in to check, maybe because I gave her the pep talk today about a clearer protocol for proceeding when the scanner doesn’t work. She took the feedback with great grace and offered me wisdom about diet and other means of controlling my bowels. I’ll spare you the details. Write if you are as anally preoccupied as me. I have a feeling I am going to have to discipline myself a lot before this is over
The crew on the machine were their usual courteous and cheerful selves and responded very well when I asked for later times on Wed and Thu so I could go to the all day meetings I want to attend. Instead of missing and hour and a half in the middle of the day I will now only have to leave a half hour early. Thanks guys. I have to say that the level of warmth and courtesy from everybody at the Odette Centre is impressive. From reception to therapy they clearly grasp the vulnerability of the people they serve.
A couple of people have responded to reading my blog. I enjoy writing so hearing from you is an appreciated bonus. I’m a little worried about getting repetitious. I have a deeper understanding now about the difficulty of autobiography. I often think of something I’d like to say but realize that I would be sharing not only myself but the people in my life. I haven’t sought that permission so I won’t do that except to say many people who love me have demonstrated that love not about my blog but about me as I get through these days.
PS while looking for the spelling of farfalle I discovered this great pasta list at Wikipedia. Check it out, it’s fun. http://en.wikipedia.org/wiki/List_of_pasta
I don’t know if it was the pasta or the Ace Bakery toasted bits, or the bread I made and ate a lot of if. Something gave me more gas the than an Alberta well. I was up in the night twice and awake a bunch of times. It was not good. The truth is I don’t know what caused it. Among other things it followed my first treatment in 3 days and on the weekend my gut settled down nicely. My bread didn’t mix properly in the machine and was very dense and probably full of unutilized yeast. The garlic is a possible candidate. Maybe I just ate too much. Since I am already on highly restricted diet eliminating fresh veggies, spice and acidic foods limits my options. Yesterday I was bored and pigged out on bread in various forms thinking it was bland and safe. Not so much safe.
Today I felt much better though a little sleep deprived and made my treatment without having to get up walk. I was apparently not perfect but adequate, the story of my life. My doctor came in to check, maybe because I gave her the pep talk today about a clearer protocol for proceeding when the scanner doesn’t work. She took the feedback with great grace and offered me wisdom about diet and other means of controlling my bowels. I’ll spare you the details. Write if you are as anally preoccupied as me. I have a feeling I am going to have to discipline myself a lot before this is over
The crew on the machine were their usual courteous and cheerful selves and responded very well when I asked for later times on Wed and Thu so I could go to the all day meetings I want to attend. Instead of missing and hour and a half in the middle of the day I will now only have to leave a half hour early. Thanks guys. I have to say that the level of warmth and courtesy from everybody at the Odette Centre is impressive. From reception to therapy they clearly grasp the vulnerability of the people they serve.
A couple of people have responded to reading my blog. I enjoy writing so hearing from you is an appreciated bonus. I’m a little worried about getting repetitious. I have a deeper understanding now about the difficulty of autobiography. I often think of something I’d like to say but realize that I would be sharing not only myself but the people in my life. I haven’t sought that permission so I won’t do that except to say many people who love me have demonstrated that love not about my blog but about me as I get through these days.
PS while looking for the spelling of farfalle I discovered this great pasta list at Wikipedia. Check it out, it’s fun. http://en.wikipedia.org/wiki/List_of_pasta
Session 11
It was a beautiful day today and I had a great long weekend without treatment. The weather was extraordinary for early March with lots of sun and quite warm. Cherie and I had a great walk on Sunday and I was able to work in an errand as a part of it. This enabled me to connect my son, Patrick, to the internet. After a frustrating and ultimately unsuccessful foray into wireless connecting I hard wired his computer to the router in using problem solving skills that give me so much pleasure.
Last night I watched some Academy Awards, but not much I confess. I haven’t seen enough of the movies and the show of itself was deadly. For the record I don’t get all the hype about The Hurt Locker. I saw it. It was a good movie. It was very American and in my view not a powerful antiwar movie; too much mystique around the hero/antihero. The Academy loves a David vs Goliath contest and when younger ex-wife beats out older ex-husband for the big prizes I guess that’s good. I should have seen more of the other contenders.
I was happy to accept an offer for a 12:30 appointment rather than the one originally scheduled for 5:20. Parking up the hill at CNIB and walking down to Sunnybrook in the sunshine worked to perfection. Although the sign said 40 minutes delay I went in on time and although I was worried about my gas quotient the treatment proceeded routinely. Parking was $3.75 instead of $9.00.
It is really quite remarkable how this stuff becomes just a part of your life. Without going into details I am very clear that the stressors in my life are much more complications at work and in family life. As long as the treatment unfolds well it is mainly an inconvenience. Of course if I have more problems with my gut that could all change.
Later in the day I walked down the hill to meet Cherie at her office and escort her back home. It was very pleasant and marked a return to more exercise after a period of relative inertness. We made an original pasta for supper of farfalle, mushroom, tuna, garlic and olive oil. I recommend it but I’m not sure about the impact on my gut. I’ll let you know tomorrow.
Last night I watched some Academy Awards, but not much I confess. I haven’t seen enough of the movies and the show of itself was deadly. For the record I don’t get all the hype about The Hurt Locker. I saw it. It was a good movie. It was very American and in my view not a powerful antiwar movie; too much mystique around the hero/antihero. The Academy loves a David vs Goliath contest and when younger ex-wife beats out older ex-husband for the big prizes I guess that’s good. I should have seen more of the other contenders.
I was happy to accept an offer for a 12:30 appointment rather than the one originally scheduled for 5:20. Parking up the hill at CNIB and walking down to Sunnybrook in the sunshine worked to perfection. Although the sign said 40 minutes delay I went in on time and although I was worried about my gas quotient the treatment proceeded routinely. Parking was $3.75 instead of $9.00.
It is really quite remarkable how this stuff becomes just a part of your life. Without going into details I am very clear that the stressors in my life are much more complications at work and in family life. As long as the treatment unfolds well it is mainly an inconvenience. Of course if I have more problems with my gut that could all change.
Later in the day I walked down the hill to meet Cherie at her office and escort her back home. It was very pleasant and marked a return to more exercise after a period of relative inertness. We made an original pasta for supper of farfalle, mushroom, tuna, garlic and olive oil. I recommend it but I’m not sure about the impact on my gut. I’ll let you know tomorrow.
Thursday, March 4, 2010
Session 10
Session 10 March 4
I would have made it back easily for my 2 o’clock meeting from my 12 o’clock session but my bowels didn’t cooperate. For the second time I had too much gas in my colon. What interesting things this treatment brings. We go about in our lives having been trained assiduously to keep our gas in out of politeness and here I am being told to get up, get out in the hall and fart. Of course the language was less graphic but that’s what it’s about. So did what I needed to and paced the hall getting off a couple of good ones. It was enough apparently because I got back on the bed and they did the whole thing. After when I asked, I heard I still had a lot of gas further up but the local area was okay. There was an amusing moment as I left to do my thing because I was so determined to get out there and pass wind I forgot to put on my second gown. One of the therapists suggested I do it or start charging for the view. Everybody has to have humour in this business.
When they told me its time to radically alter my diet I was not surprised. No more broccoli and Brussels sprouts, no more beans for the duration. What they don’t know but my friends and family do is that I have to change how I eat as well as what I eat. I eat way too fast. I always have, having learned from my dad. Chewing everything and eating slowly makes me crazy but I’m going to do it because I don’t want to have to get up and walk and fart and I don’t want by colon damaged any more than necessary.
Waiting for the Bayview bus I started thinking about an article in the Star this morning, one that reported on American doctors not supporting annual PSAs or even digital exams and expressing the most the most concern about biopsies. The concern is about potential harm and unnecessary expense coming from false positives. Surgery carries with it the risk of serious damage as well. As usual the article included a sentence about how most prostate cancer is slow growing and unlikely to cause significant harm before something else kills you. As it happens, I am reading a book called Struck by Lightning on the subject of randomness and probability so the whole issue of risk resonated.
I guess, but do not know for sure that these medical opinions are based on rigorous large scale studies which weigh statistically the chance of harm vs. protection/cure stemming from early detection and maybe surgery or early radiation treatment. My own cancer is not slow growing. I have always kicked my butt because I missed an annual check up and may have missed earlier detection. There is a lot of this stuff in my family, a brother and a first cousin and I worry about my sons. My intellect is at war with my emotions on this issue. It is very hard to take a laid back logical view when it is having a profound effect on your own life. I can’t decide what to make of all this.
I wind up thinking that the kind of article I saw in the paper is dangerous because most of us men prefer denial to risk analysis when it comes to personal health. We need more and better ways to distinguish between those with slow growing cancer and those with aggressive varieties without causing harm through the finding out. Awareness building on prostate cancer should give a more differentiated picture.
Meanwhile there is the big drawing on the drop ceiling tile above the machine. A boy and a girl or a man and a woman ( I can’t tell which) are floating or flying above the CN Tower and holding a bunch of helium filled balloons. Clearly the balloons are not holding them up because the strings are slack. I can’t decide what to make of this picture either.
Tomorrow they are servicing the machine and I get the day off. It is a nonworking day for me so I am looking forward to it.
I would have made it back easily for my 2 o’clock meeting from my 12 o’clock session but my bowels didn’t cooperate. For the second time I had too much gas in my colon. What interesting things this treatment brings. We go about in our lives having been trained assiduously to keep our gas in out of politeness and here I am being told to get up, get out in the hall and fart. Of course the language was less graphic but that’s what it’s about. So did what I needed to and paced the hall getting off a couple of good ones. It was enough apparently because I got back on the bed and they did the whole thing. After when I asked, I heard I still had a lot of gas further up but the local area was okay. There was an amusing moment as I left to do my thing because I was so determined to get out there and pass wind I forgot to put on my second gown. One of the therapists suggested I do it or start charging for the view. Everybody has to have humour in this business.
When they told me its time to radically alter my diet I was not surprised. No more broccoli and Brussels sprouts, no more beans for the duration. What they don’t know but my friends and family do is that I have to change how I eat as well as what I eat. I eat way too fast. I always have, having learned from my dad. Chewing everything and eating slowly makes me crazy but I’m going to do it because I don’t want to have to get up and walk and fart and I don’t want by colon damaged any more than necessary.
Waiting for the Bayview bus I started thinking about an article in the Star this morning, one that reported on American doctors not supporting annual PSAs or even digital exams and expressing the most the most concern about biopsies. The concern is about potential harm and unnecessary expense coming from false positives. Surgery carries with it the risk of serious damage as well. As usual the article included a sentence about how most prostate cancer is slow growing and unlikely to cause significant harm before something else kills you. As it happens, I am reading a book called Struck by Lightning on the subject of randomness and probability so the whole issue of risk resonated.
I guess, but do not know for sure that these medical opinions are based on rigorous large scale studies which weigh statistically the chance of harm vs. protection/cure stemming from early detection and maybe surgery or early radiation treatment. My own cancer is not slow growing. I have always kicked my butt because I missed an annual check up and may have missed earlier detection. There is a lot of this stuff in my family, a brother and a first cousin and I worry about my sons. My intellect is at war with my emotions on this issue. It is very hard to take a laid back logical view when it is having a profound effect on your own life. I can’t decide what to make of all this.
I wind up thinking that the kind of article I saw in the paper is dangerous because most of us men prefer denial to risk analysis when it comes to personal health. We need more and better ways to distinguish between those with slow growing cancer and those with aggressive varieties without causing harm through the finding out. Awareness building on prostate cancer should give a more differentiated picture.
Meanwhile there is the big drawing on the drop ceiling tile above the machine. A boy and a girl or a man and a woman ( I can’t tell which) are floating or flying above the CN Tower and holding a bunch of helium filled balloons. Clearly the balloons are not holding them up because the strings are slack. I can’t decide what to make of this picture either.
Tomorrow they are servicing the machine and I get the day off. It is a nonworking day for me so I am looking forward to it.
Session 9 March 3
I was very pleasantly surprised today because I attended a 4:40 session and went in almost immediately. The session itself went smoothly. There was no music and it seemed to confirm my hypothesis about the role of music because I wasn’t as drowsy in spite of it being late in the day. I enjoyed some banter with the radiation therapists about the Olympic hockey. One of them, a Muslim woman from her hijab, was teasing both me and the male therapist by saying we were just lucky to win the gold. She introduced women’s hockey and said she was surprised about the criticism of the women’s team for partying on the ice. Her understanding was that it happened after the crowds were gone and she saw it as not big deal (A view I share). I was surprised and delighted to have a stereotype of mine burst by her. I think I expected her to have a more conservative perspective.
I’ve learned as I’m sure everyone does to associate the sounds of the machine with particular stages of the treatment. First there is the whirring of the electric motor which turns the big heel on the wall and moves the scanners and the irradiator around, Following that are a couple of clicks indicating that treatment is about to start. If I don’t hear the clicks pretty soon I know there is a problem, likely too much gas in my colon. When treatment starts there is a sound like a servo-motor followed by a higher pitched sound which I think are the X-rays being administered. I don’t know how this is done but my curiosity and my science background will drive me to find out. There are seven positions for the treatment ending with the big irradiator pointing straight down on my groin. When it’s done the lights come on and its time to go.
Today I took the bus and subway over to Gus’s house where I was fed and otherwise cared for and then Gus, Howard and I went down the street to play basketball. At least Howard and I were playing; Gus is prohibited until his heart beat irregularities are sorted out. This is understandably hard for him since he is a real basketball junkie. I was delighted to find both my sons there. I had expected one but not the other. Being able be at least respectable on the court with them is a joy I can’t overstate. It will end soon I’m afraid, not because of cancer but because of my failing knees. I had wondered about fatigue being a factor but it wasn’t. In fact this evening I packed it in early because my knees hurt. At 9, Matt and I headed home together on the subway and were joined by Chris, one of the terrific young men I’ve met through basketball and my sons. We all parted company at Main Station and went on to our separate homes. Chris had another 40 minutes of travelling to East Scarborough but Matt and I were nearly home.
I was very pleasantly surprised today because I attended a 4:40 session and went in almost immediately. The session itself went smoothly. There was no music and it seemed to confirm my hypothesis about the role of music because I wasn’t as drowsy in spite of it being late in the day. I enjoyed some banter with the radiation therapists about the Olympic hockey. One of them, a Muslim woman from her hijab, was teasing both me and the male therapist by saying we were just lucky to win the gold. She introduced women’s hockey and said she was surprised about the criticism of the women’s team for partying on the ice. Her understanding was that it happened after the crowds were gone and she saw it as not big deal (A view I share). I was surprised and delighted to have a stereotype of mine burst by her. I think I expected her to have a more conservative perspective.
I’ve learned as I’m sure everyone does to associate the sounds of the machine with particular stages of the treatment. First there is the whirring of the electric motor which turns the big heel on the wall and moves the scanners and the irradiator around, Following that are a couple of clicks indicating that treatment is about to start. If I don’t hear the clicks pretty soon I know there is a problem, likely too much gas in my colon. When treatment starts there is a sound like a servo-motor followed by a higher pitched sound which I think are the X-rays being administered. I don’t know how this is done but my curiosity and my science background will drive me to find out. There are seven positions for the treatment ending with the big irradiator pointing straight down on my groin. When it’s done the lights come on and its time to go.
Today I took the bus and subway over to Gus’s house where I was fed and otherwise cared for and then Gus, Howard and I went down the street to play basketball. At least Howard and I were playing; Gus is prohibited until his heart beat irregularities are sorted out. This is understandably hard for him since he is a real basketball junkie. I was delighted to find both my sons there. I had expected one but not the other. Being able be at least respectable on the court with them is a joy I can’t overstate. It will end soon I’m afraid, not because of cancer but because of my failing knees. I had wondered about fatigue being a factor but it wasn’t. In fact this evening I packed it in early because my knees hurt. At 9, Matt and I headed home together on the subway and were joined by Chris, one of the terrific young men I’ve met through basketball and my sons. We all parted company at Main Station and went on to our separate homes. Chris had another 40 minutes of travelling to East Scarborough but Matt and I were nearly home.
Tuesday, March 2, 2010
Session 8 March 3
Every day has its joys and its challenges. Today’s routine with a 9:20 appointment involved dropping Cherie off and going to a 9:20 appointment. We were late starting so when I got to Sunnybrook I dropped my original plan to return to CNIB parking and opted for the $8 an hour lot. I gave the meter $9 which gave me an optimistic 70 minutes. I got in, not immediately, but in good time. I’ve been refining my technique for changing and it is easier now that I leave more clothes in the locker before I get to the change room. I was pleased for him but disappointed for me to hear that one man I liked to chat with will be done tomorrow. I was scanned and irradiated and decided to put my question about the treatment with no scan to the technicians first. I started feeling that taking it up with the doctor first was a little bit like ratting them out.
The explanation I got was reassuring but still left me thinking they could improve their protocol to be more respectful of patients. They said they knew treating without the scan increased the risk a little but a single treatment was not a big risk since it isn’t very intense radiation. They said if it came up again the doctor would probably say not to treat that day. I thought that they should have shared the pros and cons and given me the option rather than assuming that it was more important to stay on schedule. I decided that since I had talked to them I could now take it up with Dr. Szumacher since she apparently calls the shots.
I went out and headed for the waiting area for my meeting with the doctor. She was actually fairly quick to see me but in the interval I had a conversation with a staff or volunteer in the area who told me a horror story about a $50 ticket for being overtime in the lot. When I sat down with Dr. Szumacher I had about 5 minutes left on the meter and it took precedence over everything else. I did not plan this reaction but it was strong and I went with it. Apparently that pleasant young woman in the parking office does not mirror actions of the attendants who have been trained by ruthless capitalists to squeeze out every penny. I started off my review with the announcement that I was practically done on the meter. The doctor was sympathetic. I informed her I still felt good and had no questions. We ended and I rushed out without a word about treatment with no scan. The conversation about protocol can happen next week
In the parking lot I had no ticket and the attendant was arguing with someone else who was waving one. I left feeling pleased with myself and went to work. In the afternoon I took a lunch so long with old friends I will be taking half a vacation day. We wound up talking about our personal religious histories all of us having ended up as non-believers. One of them I hadn’t seen socially in nearly 40 years and hadn’t known him well. Notwithstanding that, our conversation was open and reflective. I really enjoyed it. I felt shy about sharing my treatment story and didn’t do so. I’m glad about that. I’ve had more than enough of those conversations for now.
Tonight I took Cherie to choir practice at Roy Thompson Hall for the concert Amadeus is doing with the TSO and Patrick to his old apartment to pick up a few things and clean the room. I got to hang out with Gus, Suzi and Carmen while I waited for Patrick to bring the car back and pick up Cherie for the ride home. Gus and Suzi have read my blog and liked it. That felt good. I got a great email from another old friend, Diana, to whom I had sent the link. It's been a good day.
Every day has its joys and its challenges. Today’s routine with a 9:20 appointment involved dropping Cherie off and going to a 9:20 appointment. We were late starting so when I got to Sunnybrook I dropped my original plan to return to CNIB parking and opted for the $8 an hour lot. I gave the meter $9 which gave me an optimistic 70 minutes. I got in, not immediately, but in good time. I’ve been refining my technique for changing and it is easier now that I leave more clothes in the locker before I get to the change room. I was pleased for him but disappointed for me to hear that one man I liked to chat with will be done tomorrow. I was scanned and irradiated and decided to put my question about the treatment with no scan to the technicians first. I started feeling that taking it up with the doctor first was a little bit like ratting them out.
The explanation I got was reassuring but still left me thinking they could improve their protocol to be more respectful of patients. They said they knew treating without the scan increased the risk a little but a single treatment was not a big risk since it isn’t very intense radiation. They said if it came up again the doctor would probably say not to treat that day. I thought that they should have shared the pros and cons and given me the option rather than assuming that it was more important to stay on schedule. I decided that since I had talked to them I could now take it up with Dr. Szumacher since she apparently calls the shots.
I went out and headed for the waiting area for my meeting with the doctor. She was actually fairly quick to see me but in the interval I had a conversation with a staff or volunteer in the area who told me a horror story about a $50 ticket for being overtime in the lot. When I sat down with Dr. Szumacher I had about 5 minutes left on the meter and it took precedence over everything else. I did not plan this reaction but it was strong and I went with it. Apparently that pleasant young woman in the parking office does not mirror actions of the attendants who have been trained by ruthless capitalists to squeeze out every penny. I started off my review with the announcement that I was practically done on the meter. The doctor was sympathetic. I informed her I still felt good and had no questions. We ended and I rushed out without a word about treatment with no scan. The conversation about protocol can happen next week
In the parking lot I had no ticket and the attendant was arguing with someone else who was waving one. I left feeling pleased with myself and went to work. In the afternoon I took a lunch so long with old friends I will be taking half a vacation day. We wound up talking about our personal religious histories all of us having ended up as non-believers. One of them I hadn’t seen socially in nearly 40 years and hadn’t known him well. Notwithstanding that, our conversation was open and reflective. I really enjoyed it. I felt shy about sharing my treatment story and didn’t do so. I’m glad about that. I’ve had more than enough of those conversations for now.
Tonight I took Cherie to choir practice at Roy Thompson Hall for the concert Amadeus is doing with the TSO and Patrick to his old apartment to pick up a few things and clean the room. I got to hang out with Gus, Suzi and Carmen while I waited for Patrick to bring the car back and pick up Cherie for the ride home. Gus and Suzi have read my blog and liked it. That felt good. I got a great email from another old friend, Diana, to whom I had sent the link. It's been a good day.
Monday, March 1, 2010
Session 7
Session 7 March 1
For the first time I’m blogging up to date having keyed in five sessions earlier today on one of my two days off. I'm at Sunnybrook, the Odette Center, The glass roof of the Atrium is lovely with blue sky and white clouds above it. It’s far less busy in the late afternoon as I wait for my call. It’s, 4:40, my appt. time but the digital sign says SYN1 is 40 minutes late. Today I don’t even mind, I’ll just sit here and write. No evidence here of the big hockey win by Canada. We’re all sitting around looking a little glum and impatient or resigned. Mostly we’re old though the occasional younger face can be seen. There’s a table with jig saw puzzles I didn’t see before with half completed puzzles, a communal effort I guess. I wonder why all the glass panels in the roof are clear except for a small section where the windows look absolutely filthy. It can’t be accidental because the surrounding panels are clean as a whistle.
There are names on some of the pillars, contributors to the cost of building the center no doubt. I’m always ambivalent about this custom of awarding people with wealth. I wonder about the many volunteers who contribute 1000s of hours of support whose names will never be seen. There are pillars with no names making one wonder if there could be a system of celebrating volunteers at least for a period of time. Growing up poor I don’t think one ever forgives the rich for being rich or maybe I should make than more personal.
This was an eventful weekend for our family because my younger son came home for awhile after a year away. We moved on Saturday in the rain with slush underfoot. Fortunately U-Haul gave me a truck because the van I ordered wasn’t returned in time. My original request was for a van in the morning. We were late reserving so I was given a 4PM reservation. Getting a truck meant we had tons of room. Three of us, my son, a friend and me slugged stuff down the narrow stairs from his apartment and crowded in the truck cab for the drive to the east end. We had pizza and pasta thanks to Cherie and then I returned the truck and drove my son and his friend back west. Sunday Cherie and I danced and I got upset because I couldn’t remember steps I knew very well. The hockey overtime was intense and ultimately a rush after giving up a goal with the game nearly over. We got home just in time for overtime.
As I sit here names are called and people go in though so far I have recognized only on for SYN1. The call just came so I am saving in a rush. Treatment was uneventful. I’ll have to write about the noises of treatment soon.
I’ve been back at home almost 5 hours. For the most part I haven’t thought about cancer or treatment since. I have been too busy shopping, cooking eating and trying to get my son’s computer connected to the net. After an hour and half including a call to Bell I discovered we are missing an external card for wireless access. It might be back at the apartment or in a box. Who knows? I don’t really care I was ravenous and I ate. I worked on solving problems which I love. My friend Gus called which was a bonus and Cherie is home from practice so I’m secure and it’s time to go to bed. Living life is the best way to deal with this so far. That is both a cliche and the truth.
For the first time I’m blogging up to date having keyed in five sessions earlier today on one of my two days off. I'm at Sunnybrook, the Odette Center, The glass roof of the Atrium is lovely with blue sky and white clouds above it. It’s far less busy in the late afternoon as I wait for my call. It’s, 4:40, my appt. time but the digital sign says SYN1 is 40 minutes late. Today I don’t even mind, I’ll just sit here and write. No evidence here of the big hockey win by Canada. We’re all sitting around looking a little glum and impatient or resigned. Mostly we’re old though the occasional younger face can be seen. There’s a table with jig saw puzzles I didn’t see before with half completed puzzles, a communal effort I guess. I wonder why all the glass panels in the roof are clear except for a small section where the windows look absolutely filthy. It can’t be accidental because the surrounding panels are clean as a whistle.
There are names on some of the pillars, contributors to the cost of building the center no doubt. I’m always ambivalent about this custom of awarding people with wealth. I wonder about the many volunteers who contribute 1000s of hours of support whose names will never be seen. There are pillars with no names making one wonder if there could be a system of celebrating volunteers at least for a period of time. Growing up poor I don’t think one ever forgives the rich for being rich or maybe I should make than more personal.
This was an eventful weekend for our family because my younger son came home for awhile after a year away. We moved on Saturday in the rain with slush underfoot. Fortunately U-Haul gave me a truck because the van I ordered wasn’t returned in time. My original request was for a van in the morning. We were late reserving so I was given a 4PM reservation. Getting a truck meant we had tons of room. Three of us, my son, a friend and me slugged stuff down the narrow stairs from his apartment and crowded in the truck cab for the drive to the east end. We had pizza and pasta thanks to Cherie and then I returned the truck and drove my son and his friend back west. Sunday Cherie and I danced and I got upset because I couldn’t remember steps I knew very well. The hockey overtime was intense and ultimately a rush after giving up a goal with the game nearly over. We got home just in time for overtime.
As I sit here names are called and people go in though so far I have recognized only on for SYN1. The call just came so I am saving in a rush. Treatment was uneventful. I’ll have to write about the noises of treatment soon.
I’ve been back at home almost 5 hours. For the most part I haven’t thought about cancer or treatment since. I have been too busy shopping, cooking eating and trying to get my son’s computer connected to the net. After an hour and half including a call to Bell I discovered we are missing an external card for wireless access. It might be back at the apartment or in a box. Who knows? I don’t really care I was ravenous and I ate. I worked on solving problems which I love. My friend Gus called which was a bonus and Cherie is home from practice so I’m secure and it’s time to go to bed. Living life is the best way to deal with this so far. That is both a cliche and the truth.
Session 6 Feb 26
I arrived by car for an 11 o’clock slot and found the parking lot very crowded. One spot disappeared in front of me. I went round to the other side where someone else was leaving. A pickup truck came in the lot and stopped for the same spot. Because of the way the spot was vacated I was able to take it. A young woman jumped out of the pickup truck and was furious saying her father had his signal on for the spot. I replied that I had been in the lot first and this did not impress her. She said she believed in karma and I would be affected by this. I felt terrible but I was close to appointment time and did not offer to move. Part of me believed and still believes my position was logical and ethical but I hated her being so upset and angry. I thought she was there with her dad to support her treatment. They came in to the Atrium and sat near me. We pretended to ignore each other. I was called in changed A few minutes later in she came rather than her dad. She was the patient! I felt terrible all over again and debated with myself about whether to go and apologize. I was still debating it when I was called in. In the meantime I had another pleasant conversation with another prostate patient, an elderly man, (I use that term in awareness of being 66) who came in using a walker. He sat in his street clothes until a technician admonished him to get changed. He had a sense of how long it was going to take.
When I went in for treatment I was worried because I had not had a crap and told them so. Sure enough when they did the scan they said there was too much gas in my colon and a risk of burning it. They sent me out to try to empty my colon, my first ever order to go out and fart. To my surprise I was able to go to the can and comply. Of course I had to start drinking water again like crazy because one doesn’t easily do one without the other. Too much information you scream, it will probably get worse as time goes by. I had to text Cherie to explain events and say I would be late for picking her up, no problem at her end.
The young woman was still there at the other end of the hall. I decided I would go and apologize, saying that my concern about being late made me rude and since we were both sitting waiting I was obviously being silly. Just when I had screwed up my courage and was getting up she was called in. I will probably get another chance another day. Soon I was called in and this time all was well, meaning bladder full and bowel empty.
Here is the new twist on the scan. Since they used it to decide they could not go ahead on Friday why was it okay to go ahead on Wednesday? Nobody asked me if I had the right things full and empty. For sure I will raise it on Monday or maybe Tuesday with Dr. Szumacher or Nurse Adams.
I arrived by car for an 11 o’clock slot and found the parking lot very crowded. One spot disappeared in front of me. I went round to the other side where someone else was leaving. A pickup truck came in the lot and stopped for the same spot. Because of the way the spot was vacated I was able to take it. A young woman jumped out of the pickup truck and was furious saying her father had his signal on for the spot. I replied that I had been in the lot first and this did not impress her. She said she believed in karma and I would be affected by this. I felt terrible but I was close to appointment time and did not offer to move. Part of me believed and still believes my position was logical and ethical but I hated her being so upset and angry. I thought she was there with her dad to support her treatment. They came in to the Atrium and sat near me. We pretended to ignore each other. I was called in changed A few minutes later in she came rather than her dad. She was the patient! I felt terrible all over again and debated with myself about whether to go and apologize. I was still debating it when I was called in. In the meantime I had another pleasant conversation with another prostate patient, an elderly man, (I use that term in awareness of being 66) who came in using a walker. He sat in his street clothes until a technician admonished him to get changed. He had a sense of how long it was going to take.
When I went in for treatment I was worried because I had not had a crap and told them so. Sure enough when they did the scan they said there was too much gas in my colon and a risk of burning it. They sent me out to try to empty my colon, my first ever order to go out and fart. To my surprise I was able to go to the can and comply. Of course I had to start drinking water again like crazy because one doesn’t easily do one without the other. Too much information you scream, it will probably get worse as time goes by. I had to text Cherie to explain events and say I would be late for picking her up, no problem at her end.
The young woman was still there at the other end of the hall. I decided I would go and apologize, saying that my concern about being late made me rude and since we were both sitting waiting I was obviously being silly. Just when I had screwed up my courage and was getting up she was called in. I will probably get another chance another day. Soon I was called in and this time all was well, meaning bladder full and bowel empty.
Here is the new twist on the scan. Since they used it to decide they could not go ahead on Friday why was it okay to go ahead on Wednesday? Nobody asked me if I had the right things full and empty. For sure I will raise it on Monday or maybe Tuesday with Dr. Szumacher or Nurse Adams.
Session 5
This was my first trip to Sunnybrook from work by TTC. I had a busy morning with a job interview at 9 AM, a meeting at 10 and treatment at 12. One subway and one bus trip later I made it early! No delays were posted on the sign and sure enough I was in quickly. Sitting there waiting I struck up a conversation with a very pleasant man who is also getting treatment for his prostate and is two weeks ahead of me. It was thrilled to hear he has no side effects yet. We chatted about the ins and outs of the hospital routines, the arbitrary time shifts and about the whole experience. He wound up talking about the blonde woman Cherie and I had observed a few days earlier and we agreed her story was painful and at the same time she wasn’t easy to relate to. Then she turned up. This time she came with two family members and what a difference. She was cheerful and related strictly to her family. It was a lesson for me on the critical importance of support as you are dealing with serious illness and potential death. I went in for my treatment including the scan and was back at my office for a two o’clock meeting with a little sushi in between.
Oh, I promised a new insight on why I fall asleep on the treatment table. I think it may have to do with how I deal with early morning insomnia. I put on my iPod on low volume and usually I go back to sleep after a few minutes, albeit sleep filled with interesting dreams. In the treatment room they always have music playing softly and when I lie there this may be simple behaviourism. I am programmed to sleep with the combination of bed and music.
This was my first trip to Sunnybrook from work by TTC. I had a busy morning with a job interview at 9 AM, a meeting at 10 and treatment at 12. One subway and one bus trip later I made it early! No delays were posted on the sign and sure enough I was in quickly. Sitting there waiting I struck up a conversation with a very pleasant man who is also getting treatment for his prostate and is two weeks ahead of me. It was thrilled to hear he has no side effects yet. We chatted about the ins and outs of the hospital routines, the arbitrary time shifts and about the whole experience. He wound up talking about the blonde woman Cherie and I had observed a few days earlier and we agreed her story was painful and at the same time she wasn’t easy to relate to. Then she turned up. This time she came with two family members and what a difference. She was cheerful and related strictly to her family. It was a lesson for me on the critical importance of support as you are dealing with serious illness and potential death. I went in for my treatment including the scan and was back at my office for a two o’clock meeting with a little sushi in between.
Oh, I promised a new insight on why I fall asleep on the treatment table. I think it may have to do with how I deal with early morning insomnia. I put on my iPod on low volume and usually I go back to sleep after a few minutes, albeit sleep filled with interesting dreams. In the treatment room they always have music playing softly and when I lie there this may be simple behaviourism. I am programmed to sleep with the combination of bed and music.
Session 4
For the first time I went to my treatment from work. My appt. was at 1 and I was fearful of a long wait. I had the car thanks to Cherie’s generosity and I got there very quickly up the Bayview extension. When I got there the sign said Syn1 was on time. I regretted not bringing my laptop and started doing potential blogs in handwriting to be transcribed later. I had to begin with Monday’s (session 2) because time is harder to find than I imagined. I wound up then and there deciding to shorten up my rant on the Olympics in the light of sober second thought. I had to acknowledge that even though I had chosen to go to a U of T playoff basketball game instead of watching Canada vs. Russia in hockey I had found myself checking scores on my Blackberry. Not only that but I was thrilled and relieved to hear the lopsided score for Canada.
I took another look at the digital sign and saw to my horror that Syn1 was now delayed an hour. How could that have happened so quickly? Visions of spending the afternoon at Sunny brook and falling behind at work flooded my mind. Ten minutes later they called me in to change. How could this be? The machine has two parts, the technician explained, and only the scanner is broken so we can still irradiate. Only people needing the scanner were being delayed. As I entered the room I began to worry and asked if they were confident they could still be precise. They assured me they could. A couple of days later I realized I had asked the wrong question. Later that night lying in bed as Cherie and I reviewed the day she asked if they could do the treatment without the scan why do they do the scan adding more radiation? It was a good question for which I had no answer. Cherie’s “good” shoulder is hurting a lot which is worrisome. Falling asleep in bed I had a new insight into why I fall asleep on the treatment table. More about that later.
For the first time I went to my treatment from work. My appt. was at 1 and I was fearful of a long wait. I had the car thanks to Cherie’s generosity and I got there very quickly up the Bayview extension. When I got there the sign said Syn1 was on time. I regretted not bringing my laptop and started doing potential blogs in handwriting to be transcribed later. I had to begin with Monday’s (session 2) because time is harder to find than I imagined. I wound up then and there deciding to shorten up my rant on the Olympics in the light of sober second thought. I had to acknowledge that even though I had chosen to go to a U of T playoff basketball game instead of watching Canada vs. Russia in hockey I had found myself checking scores on my Blackberry. Not only that but I was thrilled and relieved to hear the lopsided score for Canada.
I took another look at the digital sign and saw to my horror that Syn1 was now delayed an hour. How could that have happened so quickly? Visions of spending the afternoon at Sunny brook and falling behind at work flooded my mind. Ten minutes later they called me in to change. How could this be? The machine has two parts, the technician explained, and only the scanner is broken so we can still irradiate. Only people needing the scanner were being delayed. As I entered the room I began to worry and asked if they were confident they could still be precise. They assured me they could. A couple of days later I realized I had asked the wrong question. Later that night lying in bed as Cherie and I reviewed the day she asked if they could do the treatment without the scan why do they do the scan adding more radiation? It was a good question for which I had no answer. Cherie’s “good” shoulder is hurting a lot which is worrisome. Falling asleep in bed I had a new insight into why I fall asleep on the treatment table. More about that later.
Session 3
After Monday’s marathon Tuesday was a breeze. I dropped Cherie at her work and went on to Sunnybrook. I was there early for 9:20 and went in almost immediately. The treatment was followed by a chat with my nurse. I had expected Dr. Szumacher but nurse, Lauran Adams said they both do the reviews. That was okay with me, I was happy to meet her and so far no issues. Reviews are scheduled every Tuesday morning so at least one appointment is likely to be stable. She clued me in on weekly parking passes for $40 a week and I went and got one way down the underground corridor that connects the many Sunnybrook buildings. It’s a bit of a risk given since I will sometimes TTC it but at $4 a half hour with many appts. running to more that 1.5 hours not much of a risk
After Monday’s marathon Tuesday was a breeze. I dropped Cherie at her work and went on to Sunnybrook. I was there early for 9:20 and went in almost immediately. The treatment was followed by a chat with my nurse. I had expected Dr. Szumacher but nurse, Lauran Adams said they both do the reviews. That was okay with me, I was happy to meet her and so far no issues. Reviews are scheduled every Tuesday morning so at least one appointment is likely to be stable. She clued me in on weekly parking passes for $40 a week and I went and got one way down the underground corridor that connects the many Sunnybrook buildings. It’s a bit of a risk given since I will sometimes TTC it but at $4 a half hour with many appts. running to more that 1.5 hours not much of a risk
Session 2
Today Cherie came with me to my appointment. I told her I really want to save the support until later but it was great to have her come and see what it is like at the Odette Centre. We left for a 4;20 appointment on the first real snow day of the winter and I parked at Sunnybrook because of the wind and slush. No walking down the hill from Sunnybrook on this day. I put an hour and half on the meter in the parking lot assuming we’d be a bit late.
It was a whole new experience from my first session. On that day in the morning everything was on time . This time we checked in and sat down in the Middlefield Atrium (the big waiting area and I noticed a digital sign board. After saying welcome to the Centre it began announcing the delays on the various machines. Mine, Syn1, was the lowest at 40 minutes. Cherie had a choir practice at 7 so we were immediately into calculating the latest she could stay. She had to go home and then downtown and the roads were a mess. Also my parking payment may have been optimistic. We settled in anyway and Cherie bought herself a date square and me a coffee. She’s a date square connoisseur. It was good to have her company The coffee was a calculated risk. I needed a full bladder but I was drinking a diuretic and if the wait was too long I could wind up drained. I started in a Sudoku I found in the Star among a collection of papers, one Cherie had already done earlier.
While I was sitting waiting I found myself ruminating about the Olympics. I’ve kept my distance from the Olympics I think because I have been repelled by the hype, especially the Own the Podium slogan. People have had difficulty understanding my distancing and I’ve tried to explain it. Some of it goes way back to my childhood and growing up poor. I am hypersensitive to people puffing themselves up and making fools of themselves when other people are privately sneering. I feel like we are doing that as a country. I see that we have already had unprecedented success and I am not opposed to subsidizing the opportunity for elite athletes to compete. I guess I see our pretensions taking away from our athletes’ successes because somehow we were supposed to do more. With hockey it is a whole different thing. I yearn to cheer for our hockey team and will probably wind up doing so in spite of my enormous distaste for what the NHL has done to hockey. Enough ranting.
Not long after 5 we’re called into the inner waiting area for Syn1, a lot less glamorous than the Atrium. I’d seen it but Cherie hadn’t. We started recalculating drop dead departure times for her and I fretted about the possibility of a parking ticket. We decide to ignore the possibility thinking the snow would deter the attendants and possibly make it hard for them to see times on tickets. After I change into my gowns and returned to my seat Cherie let me know I had just mooned all the waiting patients and supporters when I bent to put my clothes in the locker. The gowns aren’t that long and mine was pulled up in the back. We had a laugh and I gave her permission to tell the story to friends.
A woman a few seats down struck up a conversation with a stranger, the daughter of a patient. She told her story about her lung cancer, a hard one including her husband having a stroke in the midst of her illness. She talked compulsively showing a deep need to get her story out. She had never smoked and clearly felt ripped off by her illness. I found myself wavering between empathy and dread that she would talk to me if the other woman left. I knew without asking that Cherie felt the same way. The woman seemed bitter, almost defeated. Sure enough the other woman left and she did start talking to us. Faced with our polite distant “Canadian” response she gave up and soon went into be treated. I wasn’t proud of myself but I was relieved.
Time dragged by. Sometime after 5:30 Cherie had to leave. About 6 I was called in and we did our thing. I learned a way out that avoided the Atrium and led straight to the front exit. These little successes are important in the face of so much loss of control. Outside the weather was awful and the ground covered in slush. I had a few anxious moments figuring out where to catch the bus down Bayview and settled on crossing the street. I got home at 8 and ate a little. I knew I had to go out and move snow but watched a little TV first. The unfinished painting in Patrick’s room called me as well. At 9:30 I went out and cranked up the snow blower. The snow was wet and heavy and I had to push it out of the grooves in the driveway to get the blower to pick it up. Cherie arrived with car and I waved her off until I cleared the drive. Then I got into it and did the laneway out to the corner, all my sidewalk, and the walk into our house and our immediate and wonderful neighbours to the south. I took pleasure in the hard work and in felling virtuous. Of course I wondered if the continuing treatments would start to make it hard for me to do this kind of labour.
Today Cherie came with me to my appointment. I told her I really want to save the support until later but it was great to have her come and see what it is like at the Odette Centre. We left for a 4;20 appointment on the first real snow day of the winter and I parked at Sunnybrook because of the wind and slush. No walking down the hill from Sunnybrook on this day. I put an hour and half on the meter in the parking lot assuming we’d be a bit late.
It was a whole new experience from my first session. On that day in the morning everything was on time . This time we checked in and sat down in the Middlefield Atrium (the big waiting area and I noticed a digital sign board. After saying welcome to the Centre it began announcing the delays on the various machines. Mine, Syn1, was the lowest at 40 minutes. Cherie had a choir practice at 7 so we were immediately into calculating the latest she could stay. She had to go home and then downtown and the roads were a mess. Also my parking payment may have been optimistic. We settled in anyway and Cherie bought herself a date square and me a coffee. She’s a date square connoisseur. It was good to have her company The coffee was a calculated risk. I needed a full bladder but I was drinking a diuretic and if the wait was too long I could wind up drained. I started in a Sudoku I found in the Star among a collection of papers, one Cherie had already done earlier.
While I was sitting waiting I found myself ruminating about the Olympics. I’ve kept my distance from the Olympics I think because I have been repelled by the hype, especially the Own the Podium slogan. People have had difficulty understanding my distancing and I’ve tried to explain it. Some of it goes way back to my childhood and growing up poor. I am hypersensitive to people puffing themselves up and making fools of themselves when other people are privately sneering. I feel like we are doing that as a country. I see that we have already had unprecedented success and I am not opposed to subsidizing the opportunity for elite athletes to compete. I guess I see our pretensions taking away from our athletes’ successes because somehow we were supposed to do more. With hockey it is a whole different thing. I yearn to cheer for our hockey team and will probably wind up doing so in spite of my enormous distaste for what the NHL has done to hockey. Enough ranting.
Not long after 5 we’re called into the inner waiting area for Syn1, a lot less glamorous than the Atrium. I’d seen it but Cherie hadn’t. We started recalculating drop dead departure times for her and I fretted about the possibility of a parking ticket. We decide to ignore the possibility thinking the snow would deter the attendants and possibly make it hard for them to see times on tickets. After I change into my gowns and returned to my seat Cherie let me know I had just mooned all the waiting patients and supporters when I bent to put my clothes in the locker. The gowns aren’t that long and mine was pulled up in the back. We had a laugh and I gave her permission to tell the story to friends.
A woman a few seats down struck up a conversation with a stranger, the daughter of a patient. She told her story about her lung cancer, a hard one including her husband having a stroke in the midst of her illness. She talked compulsively showing a deep need to get her story out. She had never smoked and clearly felt ripped off by her illness. I found myself wavering between empathy and dread that she would talk to me if the other woman left. I knew without asking that Cherie felt the same way. The woman seemed bitter, almost defeated. Sure enough the other woman left and she did start talking to us. Faced with our polite distant “Canadian” response she gave up and soon went into be treated. I wasn’t proud of myself but I was relieved.
Time dragged by. Sometime after 5:30 Cherie had to leave. About 6 I was called in and we did our thing. I learned a way out that avoided the Atrium and led straight to the front exit. These little successes are important in the face of so much loss of control. Outside the weather was awful and the ground covered in slush. I had a few anxious moments figuring out where to catch the bus down Bayview and settled on crossing the street. I got home at 8 and ate a little. I knew I had to go out and move snow but watched a little TV first. The unfinished painting in Patrick’s room called me as well. At 9:30 I went out and cranked up the snow blower. The snow was wet and heavy and I had to push it out of the grooves in the driveway to get the blower to pick it up. Cherie arrived with car and I waved her off until I cleared the drive. Then I got into it and did the laneway out to the corner, all my sidewalk, and the walk into our house and our immediate and wonderful neighbours to the south. I took pleasure in the hard work and in felling virtuous. Of course I wondered if the continuing treatments would start to make it hard for me to do this kind of labour.
Tuesday, February 23, 2010
Session 1
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.
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.
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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