Long time, no write. There are reasons, but few excuses. Reason one is almost my full attention has been focused on getting some papers filed to address some insurance/benefit items. I know that's fairly obscure, but it would be premature of me to go too much into detail right now.
But I didn't start this to talk about that. I wanted to give some accolades to my doctors and the people who work for them or support their work.
My urologist, who I poked some fun at when I wrote about the biopsy procedure, is great. I give him a lot of credit in getting me to consult the radiation oncologist before making a decision on proceeding with treatment. I called him at one point and said something like, "If I'm leaning toward surgery, why don't we just schedule it now and get started?" He said he thought I should go see the radiation oncologist first. His staff has been hugely helpful with paperwork support and there are several people in that office I owe big time.
My radiation oncologist is stellar. Not only did he connect me with the research data I needed to make a decision on treatment, but he's been a great counsel and supporter through the entire course of treatment. The staff in his office, and in the supporting radiation department of the hospital are incredible, caring, sensitive people who all were (and are) exemplary in their approach, their sensitivity, and their knowledge.
I'll end with this: While my active treatment ended at the end of September, I'm still feeling the effects of the androgen deprivation therapy (what I have elsewhere referred to as "hormone therapy"). And all the research I've read so far indicates I'll be feeling those effects for some time to come. And so I'm filing more papers and doing more research to find out (duh) what that means for me. And both doctors, and their people, have been understanding, supportive, and involved. Part of that is who they are, but part of it is also that I have a need to know, and so I ask them, and others in my network, for help. Asking doesn't hurt. Not knowing (for me), does.
Sunday, November 7, 2010
Sunday, September 26, 2010
Losing Andreas
Andreas passed away recently. He was 44, and had brain cancer. Losing him was another one of the losses in the midst of this journey through cancer. He was a great help to me in my walk and I hope I had some small impact on his cancer experience as well. His cancer was the more deadly of the two of us, but I'm not being competitive. I suppose it's a silly thing to think.
He modeled so well a perseverance of character, curiosity, and humor in his attention to rehabilitating himself after each surgery and throughout his treatment. And now, when I feel as if I am losing my patience with the treatment plan I'm on, I think of him and try not to become the impatient patient that I fear I have become.
It sounds odd... and possibly offensive... to say that any good can come of a thing like cancer. Yet it was in the shared turmoil of treatment regimens that our relationship was deepened. True, it might have done so in time without cancer, but we never get to know what might have happened, do we? So, in the sense that I came to know and love this unique wonderful man in the midst of sharing a similar focus on what was immediately important and what was not, I can say something good came out of something most (if not all) of us would consider bad. And I ask for forgiveness if by saying that I have offended anyone.
We laughed over the tragic things that were happening to us in our pursuit of living. We shared tea and talked about the healing effects of meditation and mindful walking. I suppose my point is this: without community and shared experience the cancer walk would be a lonely, scary walk indeed. But there is more to this... and here I expect I might wander a bit because I know my thoughts are scattered.
Losing Andreas was a big loss for me. And just before Andreas passed away, my father-in-law died... and I was close to him. And the treatment regimen I chose has taken things away from me that will never come back. Physical functions that I assumed would degrade with time - but still be there - are no longer a part of what I can call "me". A close friend asked me, tenderly, what it was like to lose some of the sexual function, and I answered, but realized I was close to tears in the midst of my answer. Surprised at my emotion, I realized I have not walked through that particular grief completely.
Lest this turn into a maudlin crying fest (and I have those as well), I know this is just a compacted, telescoped experience of what is, to borrow a phrase from Robinson Jeffers, "...exactly conterminous with human life."
We lose all sorts of things all the time. Some of the losses are significant (Andreas and my father-in-law are recent examples for me) and some are less so. But all of them, big or little, seem to point to something else that is much bigger, I think. I know that I am so tied to my body that I have no conscious perception of what losing it will be like. But I have a very clear, and sometimes painful, image of what loss is about. And so, I think I have a picture of what that final loss might be like. I don't know, of course, and have no way to know until I get there. For now, the ones I can handle are enough.
He modeled so well a perseverance of character, curiosity, and humor in his attention to rehabilitating himself after each surgery and throughout his treatment. And now, when I feel as if I am losing my patience with the treatment plan I'm on, I think of him and try not to become the impatient patient that I fear I have become.
It sounds odd... and possibly offensive... to say that any good can come of a thing like cancer. Yet it was in the shared turmoil of treatment regimens that our relationship was deepened. True, it might have done so in time without cancer, but we never get to know what might have happened, do we? So, in the sense that I came to know and love this unique wonderful man in the midst of sharing a similar focus on what was immediately important and what was not, I can say something good came out of something most (if not all) of us would consider bad. And I ask for forgiveness if by saying that I have offended anyone.
We laughed over the tragic things that were happening to us in our pursuit of living. We shared tea and talked about the healing effects of meditation and mindful walking. I suppose my point is this: without community and shared experience the cancer walk would be a lonely, scary walk indeed. But there is more to this... and here I expect I might wander a bit because I know my thoughts are scattered.
Losing Andreas was a big loss for me. And just before Andreas passed away, my father-in-law died... and I was close to him. And the treatment regimen I chose has taken things away from me that will never come back. Physical functions that I assumed would degrade with time - but still be there - are no longer a part of what I can call "me". A close friend asked me, tenderly, what it was like to lose some of the sexual function, and I answered, but realized I was close to tears in the midst of my answer. Surprised at my emotion, I realized I have not walked through that particular grief completely.
Lest this turn into a maudlin crying fest (and I have those as well), I know this is just a compacted, telescoped experience of what is, to borrow a phrase from Robinson Jeffers, "...exactly conterminous with human life."
We lose all sorts of things all the time. Some of the losses are significant (Andreas and my father-in-law are recent examples for me) and some are less so. But all of them, big or little, seem to point to something else that is much bigger, I think. I know that I am so tied to my body that I have no conscious perception of what losing it will be like. But I have a very clear, and sometimes painful, image of what loss is about. And so, I think I have a picture of what that final loss might be like. I don't know, of course, and have no way to know until I get there. For now, the ones I can handle are enough.
Wednesday, August 25, 2010
Catching up...
Well, it has been too long since my last post, as I was gently but firmly reminded recently. And what could I say but "no duh!?!"... and try and get on with what is going on in my head and heart as the treatment progresses.
Nothing. I could say nothing. But I'll try.
The last couple of months have been hard ones and busy as well. My wife's father passed away and I had a really good relationship with him. And there was a flurry of activity with that. And this week a close friend, and another cancer patient (albeit a different kind), passed away. And that is hard. But no more than anyone else has experienced. It is, as Robinson Jeffers said, "...exactly conterminous with human existence".
For my part, the PSA count being down to a negligible number is a good thing, but I'm not done yet. The research data indicated that being on hormone treatments for a year was necessary, and I won't reach that point until the end of September. So, I find myself being impatient, now that there is an end to the hormone deprivation in sight. But that doesn't mean a return to my old self the next day. The doctor indicated it could be about 6 months before a new state of "normal" returns, and like it or not, I have not out-performed a single time estimate throughout this treatment regimen. So, let's see... that means it could be March of 2011 before I feel something different physically and mentally. Oh la!
The wearing thing about the hormone treatments is that I think I can still do things like I used to, but I can't. For example, I think I can keep active (which I used to do, and which the doctors want me to do) but I need people to get me out to be active. While riding my bike, I think I feel fine and then I push a little and it takes me three days to recover. I work in the backyard and I last an hour and need a rest. I feel like I have no initiative. Sure I can get things done, but then I pay for it. And there's more...
Nothing. I could say nothing. But I'll try.
The last couple of months have been hard ones and busy as well. My wife's father passed away and I had a really good relationship with him. And there was a flurry of activity with that. And this week a close friend, and another cancer patient (albeit a different kind), passed away. And that is hard. But no more than anyone else has experienced. It is, as Robinson Jeffers said, "...exactly conterminous with human existence".
For my part, the PSA count being down to a negligible number is a good thing, but I'm not done yet. The research data indicated that being on hormone treatments for a year was necessary, and I won't reach that point until the end of September. So, I find myself being impatient, now that there is an end to the hormone deprivation in sight. But that doesn't mean a return to my old self the next day. The doctor indicated it could be about 6 months before a new state of "normal" returns, and like it or not, I have not out-performed a single time estimate throughout this treatment regimen. So, let's see... that means it could be March of 2011 before I feel something different physically and mentally. Oh la!
The wearing thing about the hormone treatments is that I think I can still do things like I used to, but I can't. For example, I think I can keep active (which I used to do, and which the doctors want me to do) but I need people to get me out to be active. While riding my bike, I think I feel fine and then I push a little and it takes me three days to recover. I work in the backyard and I last an hour and need a rest. I feel like I have no initiative. Sure I can get things done, but then I pay for it. And there's more...
Monday, July 5, 2010
First PSA test since November, '09
Well, the post is late, but the results have not changed: PSA = less than 0.1 ...which was the target we were hoping for! Woot!!! So, for now this is success! (I think I started this blog with a PSA of at least 13.7 or something.)
So, at the same time I got those results I got my last hormone shot, which will last me until the end of September or so. I asked my urologist (who was doing the injection) how long after that I could expect to begin to feel 'normal' again. He said something like "You should bounce right back." And I said, "Let's define 'bounce'." He grinned and said that maybe bounce was not quite the right word. Six months or so was what he meant. I said that sounded more like a slow slide than a bounce, but ok... that's what I wanted to know.
And so the final injection was done (my right hip/cheek area hurt the rest of the day) and I got a lab slip to get my PSA tested in 3 months and a return visit. He (the urologist) seemed surprised that my radiation oncologist hadn't given me a stack of lab slips for PSA tests, and I explained that there had been some confusion about what lab the urologist preferred. Turns out he doesn't have a preferred lab. So, I'll have to follow up on my return visit and make sure I have lab slips for (I think) every six months for the next few years.
All in all, I'm pleased. But there has been no huge celebration yet. I figure there's something to plan for at the end of September, and then maybe something to notice and pay attention to when my body starts (I hope) to level out into what will be the new "normal". At any rate, it is good to have these results!
So, at the same time I got those results I got my last hormone shot, which will last me until the end of September or so. I asked my urologist (who was doing the injection) how long after that I could expect to begin to feel 'normal' again. He said something like "You should bounce right back." And I said, "Let's define 'bounce'." He grinned and said that maybe bounce was not quite the right word. Six months or so was what he meant. I said that sounded more like a slow slide than a bounce, but ok... that's what I wanted to know.
And so the final injection was done (my right hip/cheek area hurt the rest of the day) and I got a lab slip to get my PSA tested in 3 months and a return visit. He (the urologist) seemed surprised that my radiation oncologist hadn't given me a stack of lab slips for PSA tests, and I explained that there had been some confusion about what lab the urologist preferred. Turns out he doesn't have a preferred lab. So, I'll have to follow up on my return visit and make sure I have lab slips for (I think) every six months for the next few years.
All in all, I'm pleased. But there has been no huge celebration yet. I figure there's something to plan for at the end of September, and then maybe something to notice and pay attention to when my body starts (I hope) to level out into what will be the new "normal". At any rate, it is good to have these results!
Tuesday, June 15, 2010
Thinking, or not...
Stopping off to see my radiation oncologist the other day (who was kind enough to talk to me about a question of the moment regarding DHEA (a hormone I was thinking of taking)), I was surprised to discover in the course of our conversation that anemia is an effect of the course of treatment I've pursued. Probably someone told me about it before and I've just forgotten. Anyway, I've started taking a multi-vitamin to address the anemia a bit until I hear from the lab about it. And DHEA is not something to pursue right now.
And then I've been working on some decisions I have to make about my status with my employer and how to handle all that. I think I've made some decisions which will allow me to get into some recovery zone before coming off disability.
But doing all that made me think about the level of time-consuming work and thought that goes into just living day-to-day with cancer and the effects of treatment. So often we hear it referred to as "fighting cancer" and that phrase sounds so active and brave. But I have come to agree with a news article my cousin sent me that questions the "fight" language. It feels more like living - with the cancer, with the treatment, with the odd, annoying, depressing effects of the treatment - than it feels like fighting. It's more of a walk, too, than a fight, mainly because one wakes up and tries to go through the day (and night) with another thing tagging along. And maybe that thing was there all the time but the events that nudged the thing into outline have caused it to morph suddenly into a thing (if that makes sense).
And then I've been working on some decisions I have to make about my status with my employer and how to handle all that. I think I've made some decisions which will allow me to get into some recovery zone before coming off disability.
But doing all that made me think about the level of time-consuming work and thought that goes into just living day-to-day with cancer and the effects of treatment. So often we hear it referred to as "fighting cancer" and that phrase sounds so active and brave. But I have come to agree with a news article my cousin sent me that questions the "fight" language. It feels more like living - with the cancer, with the treatment, with the odd, annoying, depressing effects of the treatment - than it feels like fighting. It's more of a walk, too, than a fight, mainly because one wakes up and tries to go through the day (and night) with another thing tagging along. And maybe that thing was there all the time but the events that nudged the thing into outline have caused it to morph suddenly into a thing (if that makes sense).
Sunday, May 30, 2010
Nutrition... or not
I've been thinking about the effects of the radiation and how those effects have been altering my body. That's no big surprise. But thinking (and talking to friends about my thoughts) has led me to decide to start taking some pro-biotic vitamins and supplements. So I went out today and bought some things to start taking. And all of that got me wondering why it took so long to get me to this place.
It seems to me that the people who took me through this process to defeat the cancer (which I am hoping we have done) are the same ones who should advise me (somewhat) on recovering from the wildly unnatural treatment I've been through. Or am almost through.
When I started external beam radiation, the radiation technicians (or the nurses associated with them) gave me some information about diet during radiation treatments. (They also gave me an introductory set of materials about prostate cancer that seemed a bit funny to me at the time. After all, I'd been in treatment for about 6 months by the time they handed me those materials.) Anyway, I questioned the diet advice they gave me because it just didn't make sense (and the materials didn't help convince me). But even though I questioned the information, I was aware of it and was therefore more conscious of how my body was handling food during the treatments.
But no one said boo! about recovering from radiation treatments. Well, that isn't quite accurate. They seemed to say that time will tell. Wait and see. Or something along those lines. But wait a second. The radiation oncologist has maps of where the most intense radiation hits, and where the next most intense stuff hits, and so on. And the colon is one of the areas that gets hit fairly hard because of its location relative to the prostate gland. (Or I think it gets hit fairly hard. I haven't seen my radiation map, so I don't know for sure.) So, having those maps might lead someone to say, "Hmm... wonder what happens to all the flora in the bowel when we pump radiation into the area? I bet it kills it off better than being on antibiotics. I wonder how long that stuff takes to regenerate?" Or maybe they don't think like that. But I do. Now.
Anyway, shouldn't there be a set of general guidelines of things you can do to get the flora of the colon back to some semblance of normal balance following treatments like this? It would be a good thing to have is all I'm saying. Instead, because I'm generally a bonehead about diet, my tendency would be to jump back into my diet of old and think things should be just hunky-dory (not!). And if I have questions, floundering around on the web seems to require that I know the answer I'm looking for already. So what am I supposed to do?
What I want is a kind of "Nutrition for Dummies - The Nuclear Medicine Version" (don't sue me, Dummies people!). Or "Nutrition after Radiation." Or how about a referral to a nutritionist at the end of radiation treatments? Or even an online reference to someone you can pose questions to? Would that be so hard? I don't think so. And it would leave me thinking that the wise doctors had considered more than a specialty-oriented view of the situation. And that would make me feel so... so... special. Really.
It seems to me that the people who took me through this process to defeat the cancer (which I am hoping we have done) are the same ones who should advise me (somewhat) on recovering from the wildly unnatural treatment I've been through. Or am almost through.
When I started external beam radiation, the radiation technicians (or the nurses associated with them) gave me some information about diet during radiation treatments. (They also gave me an introductory set of materials about prostate cancer that seemed a bit funny to me at the time. After all, I'd been in treatment for about 6 months by the time they handed me those materials.) Anyway, I questioned the diet advice they gave me because it just didn't make sense (and the materials didn't help convince me). But even though I questioned the information, I was aware of it and was therefore more conscious of how my body was handling food during the treatments.
But no one said boo! about recovering from radiation treatments. Well, that isn't quite accurate. They seemed to say that time will tell. Wait and see. Or something along those lines. But wait a second. The radiation oncologist has maps of where the most intense radiation hits, and where the next most intense stuff hits, and so on. And the colon is one of the areas that gets hit fairly hard because of its location relative to the prostate gland. (Or I think it gets hit fairly hard. I haven't seen my radiation map, so I don't know for sure.) So, having those maps might lead someone to say, "Hmm... wonder what happens to all the flora in the bowel when we pump radiation into the area? I bet it kills it off better than being on antibiotics. I wonder how long that stuff takes to regenerate?" Or maybe they don't think like that. But I do. Now.
Anyway, shouldn't there be a set of general guidelines of things you can do to get the flora of the colon back to some semblance of normal balance following treatments like this? It would be a good thing to have is all I'm saying. Instead, because I'm generally a bonehead about diet, my tendency would be to jump back into my diet of old and think things should be just hunky-dory (not!). And if I have questions, floundering around on the web seems to require that I know the answer I'm looking for already. So what am I supposed to do?
What I want is a kind of "Nutrition for Dummies - The Nuclear Medicine Version" (don't sue me, Dummies people!). Or "Nutrition after Radiation." Or how about a referral to a nutritionist at the end of radiation treatments? Or even an online reference to someone you can pose questions to? Would that be so hard? I don't think so. And it would leave me thinking that the wise doctors had considered more than a specialty-oriented view of the situation. And that would make me feel so... so... special. Really.
Saturday, May 22, 2010
More discoveries and thoughts on changes
In a short discussion with a friend about the effects that radiation treatments had on both of his parents I heard some disturbing news: in his experience, the effects of the treatments never went away completely. Of course, I am not conversant with the details of the treatments (length, area, dosage, etc) his parents went through, but his father's treatments were related to prostate cancer, so there is some similarity. Hopefully I will recover, but I know that my digestion and elimination is not close to being back to what I would have called "normal" yet, and it's now 9 weeks after the last radiation treatments were done.
But 9 weeks isn't too long, I suppose. It's only that I wanted it all to be better in the shortest amount of time, and that, I guess I was way too optimistic.
And I haven't found any decent information about how the body processes the radioactive *stuff* (for lack of a more erudite term) out. So, I go along hoping some hint of normality will begin to return.
At the same time, the effects of the hormone treatments continue to increase. Hot flashes are more frequent, and longer, than before. My joints are sore, and it hurts to stand on my feet in the morning (this all dissipates as I move around) and my energy levels are pretty low. Add to this a brief stint with a cold this week and there were some days when next to nothing was accomplished.
Normality is far from being restored is the bottom line. And (warning! graphic details ahead!) the radiation and hormones are having other effects as well...
But 9 weeks isn't too long, I suppose. It's only that I wanted it all to be better in the shortest amount of time, and that, I guess I was way too optimistic.
And I haven't found any decent information about how the body processes the radioactive *stuff* (for lack of a more erudite term) out. So, I go along hoping some hint of normality will begin to return.
At the same time, the effects of the hormone treatments continue to increase. Hot flashes are more frequent, and longer, than before. My joints are sore, and it hurts to stand on my feet in the morning (this all dissipates as I move around) and my energy levels are pretty low. Add to this a brief stint with a cold this week and there were some days when next to nothing was accomplished.
Normality is far from being restored is the bottom line. And (warning! graphic details ahead!) the radiation and hormones are having other effects as well...
Subscribe to:
Posts (Atom)
