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).
Tuesday, June 15, 2010
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...
Monday, May 17, 2010
Continuing to wade through the information mess
A good friend who happens to be a doctor just sent me a link to a study about bone density loss (and resulting life-long risks of bone fracture) for men like me who are undergoing androgen deprivation therapy (what I call 'hormone therapy'). While I haven't read the entire text of the paper (yet) it is something to talk to my doctors about and see what their advice is. (I put the link to the abstract in the "helpful links" section too, and can share the entire text with anyone who's interested.)
Speaking of talking to my doctors, I saw my radiation oncologist recently and he thought we should start running PSA tests again to see what the levels looked like. Fine with me. But then he noticed that the urologist had used a different lab than he had used. So, he held off setting those up. I must have misunderstood, because I thought he was going to contact the urologist and settle who should handle what (if that makes sense). And so I waited to hear from one of them.
Silly me. I didn't hear from either doctor... and finally called the radiation oncologist's office and talked to one of the nurses who essentially told me that when radiation was done, scheduling of tests belonged to the urologist. And so now I need to call in to my urologist. But some part of me thought this was a cooperative effort. Turns out you need to manage this all the way. And I think that also means managing the research efforts and follow-up with the doctors.
That might sound like a slam, but I don't mean it as one. It's a disappointment to think that there are such lines of demarcation, and seemingly no overall manager of the case except for me (and my network...bless them!). I should have known, or at least expected this based on prior experience with managing medical treatment and information with my father.
But wait, there's more...
Speaking of talking to my doctors, I saw my radiation oncologist recently and he thought we should start running PSA tests again to see what the levels looked like. Fine with me. But then he noticed that the urologist had used a different lab than he had used. So, he held off setting those up. I must have misunderstood, because I thought he was going to contact the urologist and settle who should handle what (if that makes sense). And so I waited to hear from one of them.
Silly me. I didn't hear from either doctor... and finally called the radiation oncologist's office and talked to one of the nurses who essentially told me that when radiation was done, scheduling of tests belonged to the urologist. And so now I need to call in to my urologist. But some part of me thought this was a cooperative effort. Turns out you need to manage this all the way. And I think that also means managing the research efforts and follow-up with the doctors.
That might sound like a slam, but I don't mean it as one. It's a disappointment to think that there are such lines of demarcation, and seemingly no overall manager of the case except for me (and my network...bless them!). I should have known, or at least expected this based on prior experience with managing medical treatment and information with my father.
But wait, there's more...
Monday, May 3, 2010
Continuing research and ...
It's been awhile since the last post, and that, for some reason or another, seems odd. After all, I am not cancer-free yet, even if the path I'm on is going according to plan. I am still under the sway of the hormones, which make my mood swings a bit unpredictable (I'm easily pushed to a rather depressing state, if anyone wants to know... which I resist with varying levels of success), and I have no stamina or energy.
I talked to my radiation oncologist last week or so, and he verified that the lack of testosterone alone is enough to make me feel the way I am. Add to that the residual radiation effects, and the experience I have makes perfect sense. Which is not at all to say that I handle it well or am accepting of it. I want to be productive again, and working, and active, and I feel like I am none of those.
I need to do some more research into follow-on steps, and keep up to date with current medical research... but I have no energy for that either. Whatta case! But there is the scheduling of the follow-on PSA tests that needs to be done. And my doctors seem to be bouncing that back and forth between them (or if not, that's my perception). We would have set them up when I last saw my radiation oncologist last but for the fact that it appeared that the urologist used a different lab. So right now there are no PSA tests scheduled.
But the research I will pursue is about the new drug Provenge, which I read about in a NY Times article from last week. From what I read so far, I doubt that I'd be considered for using it, but it it worthwhile finding out more.
Other effects from the hormones: hot flashes are increasing in intensity, frequency, and duration. And my bones seem sore... hurts to stand up in the morning and also hurts to sit for too long. Strange effects. I stopped taking the Flo-Max this week, and so far that seems ok.
Geez... not a funny line in this entire post. I blame the hormones.
I talked to my radiation oncologist last week or so, and he verified that the lack of testosterone alone is enough to make me feel the way I am. Add to that the residual radiation effects, and the experience I have makes perfect sense. Which is not at all to say that I handle it well or am accepting of it. I want to be productive again, and working, and active, and I feel like I am none of those.
I need to do some more research into follow-on steps, and keep up to date with current medical research... but I have no energy for that either. Whatta case! But there is the scheduling of the follow-on PSA tests that needs to be done. And my doctors seem to be bouncing that back and forth between them (or if not, that's my perception). We would have set them up when I last saw my radiation oncologist last but for the fact that it appeared that the urologist used a different lab. So right now there are no PSA tests scheduled.
But the research I will pursue is about the new drug Provenge, which I read about in a NY Times article from last week. From what I read so far, I doubt that I'd be considered for using it, but it it worthwhile finding out more.
Other effects from the hormones: hot flashes are increasing in intensity, frequency, and duration. And my bones seem sore... hurts to stand up in the morning and also hurts to sit for too long. Strange effects. I stopped taking the Flo-Max this week, and so far that seems ok.
Geez... not a funny line in this entire post. I blame the hormones.
Tuesday, April 13, 2010
Wondering when it's done...
The past few days I've had some reminders that I'm still working my way through this process still. Some intestinal reminders, a whole lotta sleeping going on, and still a fair amount of fatigue. I suppose some of what I'm feeling is residue from the radiation treatments, and another level of it may be more related to my reaction to the hormone treatments that are still ongoing.
There's another nagging question that comes up - from others as well as myself: How do you know it's been successful? And really, from what I've been told, that's hard to tell. I can read the data charts on success of radiation treatments + seed implants along with hormone therapy, but how can I know that it all worked?
The radiation oncologist said we'd start monitoring PSA levels at some point (I don't recall exactly when) after the hormone treatments end. And we'd be monitoring those for 5 years, with the expectation that the level should be somewhere between 0 and 2. And he said they wouldn't run any additional tests unless the PSA level popped over 2. So, OK... that tells me the plan... but it doesn't tell me that it's all good. Until we've been through the next 5 years, I guess. I see the radiation oncologist soon (follow-up) so I'll get a better idea then. I hope.
Somehow, that doesn't give me the solid yes (or no) I was looking for. It gives me a "wait and see". Get back Loretta! It's not any different (really) than it would have been if I'd done surgery. It's just that I keep getting asked "was it successful?" and well, if we'd cut something out, I'd know - maybe - that the procedure was either a success or not. But I have the sneaking suspicion that thinking is fallacious.
There's another nagging question that comes up - from others as well as myself: How do you know it's been successful? And really, from what I've been told, that's hard to tell. I can read the data charts on success of radiation treatments + seed implants along with hormone therapy, but how can I know that it all worked?
The radiation oncologist said we'd start monitoring PSA levels at some point (I don't recall exactly when) after the hormone treatments end. And we'd be monitoring those for 5 years, with the expectation that the level should be somewhere between 0 and 2. And he said they wouldn't run any additional tests unless the PSA level popped over 2. So, OK... that tells me the plan... but it doesn't tell me that it's all good. Until we've been through the next 5 years, I guess. I see the radiation oncologist soon (follow-up) so I'll get a better idea then. I hope.
Somehow, that doesn't give me the solid yes (or no) I was looking for. It gives me a "wait and see". Get back Loretta! It's not any different (really) than it would have been if I'd done surgery. It's just that I keep getting asked "was it successful?" and well, if we'd cut something out, I'd know - maybe - that the procedure was either a success or not. But I have the sneaking suspicion that thinking is fallacious.
Monday, April 5, 2010
April is the cruelest month...
But let's not go too far with that. Who knows, maybe ole TS Eliot was referring to tax time? It sure hurt here.
But hey... that's not what I meant to talk about. In the wake of the events of last month (losing my job, going on short term disability, the end of radiation, and more) I realize I have been distracted from my habit of chronicling my experience here. So, today...
I took my first bicycle ride in ages - since January, I think - this evening and oh man am I out of shape! 11 miles and I was huffing. Very disappointing, so I think I'll try to step up the activity, or at least maintain this (seemingly lousy) level for the next week or so, and hopefully I'll see some change. There is so much coming back that needs to happen, and even though I tried to keep active on the indoor trainer, I just wasn't able to maintain any consistent level during the last of the radiation treatments. In the weeks since the radiation treatments ended (it's been about 3 now) I continued to see effects build. For example, I needed to make some diet adjustments to slow things down a little. Rice, and grilled cheese sandwiches seemed to do the trick. At least for me.
I'm still sleeping a lot, and as I saw last night when my sister was visiting for Easter dinner, I reached a point in the evening where I could just tell I had to get to bed. OK... it was late, but it was still before midnight! Anyway, I felt myself shut down, and just said I was sorry, but I needed to go to bed. Geez.
In closing, let me relate a short story that fits, I think, with the whole discussion of this being a fortunate occurrence (the cancer, I mean). I was talking to a friend about the shift that happened in my life, a shift that was completely outside of my control, yet happened as clearly as the dawn. I couched this using a juggling metaphor (something I cannot do, yet do with great regularity anyway). I suggested that all the tasks I was keeping up were like balls, being juggled by me. When the shift happened, it seemed to me that I chose to drop all the balls, except for one very important one. And in my thinking, initially I considered the one ball as being solely related to the cancer and the steps needed to address that. But I see now that the one ball contains properties of all the other balls I was striving to keep in the air. So, the one ball, the important one, is being held and contemplated. And in the sense that the one contains properties of all of them, what is important about the other balls is represented in the one, and therefore they remain. But the juggling is no longer important. What is important is the one. It is, in a very real sense, holding on to and letting go of everything, all at once.
But hey... that's not what I meant to talk about. In the wake of the events of last month (losing my job, going on short term disability, the end of radiation, and more) I realize I have been distracted from my habit of chronicling my experience here. So, today...
I took my first bicycle ride in ages - since January, I think - this evening and oh man am I out of shape! 11 miles and I was huffing. Very disappointing, so I think I'll try to step up the activity, or at least maintain this (seemingly lousy) level for the next week or so, and hopefully I'll see some change. There is so much coming back that needs to happen, and even though I tried to keep active on the indoor trainer, I just wasn't able to maintain any consistent level during the last of the radiation treatments. In the weeks since the radiation treatments ended (it's been about 3 now) I continued to see effects build. For example, I needed to make some diet adjustments to slow things down a little. Rice, and grilled cheese sandwiches seemed to do the trick. At least for me.
I'm still sleeping a lot, and as I saw last night when my sister was visiting for Easter dinner, I reached a point in the evening where I could just tell I had to get to bed. OK... it was late, but it was still before midnight! Anyway, I felt myself shut down, and just said I was sorry, but I needed to go to bed. Geez.
In closing, let me relate a short story that fits, I think, with the whole discussion of this being a fortunate occurrence (the cancer, I mean). I was talking to a friend about the shift that happened in my life, a shift that was completely outside of my control, yet happened as clearly as the dawn. I couched this using a juggling metaphor (something I cannot do, yet do with great regularity anyway). I suggested that all the tasks I was keeping up were like balls, being juggled by me. When the shift happened, it seemed to me that I chose to drop all the balls, except for one very important one. And in my thinking, initially I considered the one ball as being solely related to the cancer and the steps needed to address that. But I see now that the one ball contains properties of all the other balls I was striving to keep in the air. So, the one ball, the important one, is being held and contemplated. And in the sense that the one contains properties of all of them, what is important about the other balls is represented in the one, and therefore they remain. But the juggling is no longer important. What is important is the one. It is, in a very real sense, holding on to and letting go of everything, all at once.
Subscribe to:
Posts (Atom)
