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...
Monday, May 17, 2010
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.
Thursday, March 18, 2010
End of radiation treatments!
Monday this week marked the last radiation treatment for me. To celebrate the occasion I bought a couple of boxes of See's candy for the staff at the radiation oncology office (and I included the doctor's office as well). I wondered if candy would be frowned on, but a couple of the nurses said that (I quote) "Sugar is goooooood!" Who says it's not a drug?
At home, we opened a great bottle of champagne at dinner, and I also brought a box of candy home for celebration. I'm glad that the treatments are over, but I already miss seeing the great staff at the radiation oncology department. Wonderful people who manage to keep a tolerable face on some very serious business.
Of course, stopping treatment doesn't mean I'm off the hook. I was reminded by my body that the effects of the radiation are still underway, and so I've made some adjustments to my diet, and am sleeping whenever I can. However, ending radiation does mean that I'm off the bicalutamide (the testosterone blocker). I think it's also a bit sad to say good bye to my visual - the Roller Derby grrl I envisioned as a "testosterone blocker" ... aptly named "Maura Lee Bankrupt". But all things have their time. So, I'll embed one last view of Maura Lee... give her a big wet one, and move on. OK... maybe not a big wet one. Maybe just a Roller Derby high-five.
So, what next? Well, there's another hormone still in play here - the Trelstar shot that I have been getting every three months. I have the third one of those coming up the end of March, and another one sometime in June. This is the hormone shot that essentially keeps the pituitary gland "out of gas" if you will... so my body has none of the stuff that triggers testosterone production. It's a strange and wacky world! So, I need to keep slamming calcium and vitamin D.
And try to get some exercise, even when I don't feel like it. Hopefully being off the testosterone blocker will have some effect that helps in that regard. We'll see.
At home, we opened a great bottle of champagne at dinner, and I also brought a box of candy home for celebration. I'm glad that the treatments are over, but I already miss seeing the great staff at the radiation oncology department. Wonderful people who manage to keep a tolerable face on some very serious business.
So, what next? Well, there's another hormone still in play here - the Trelstar shot that I have been getting every three months. I have the third one of those coming up the end of March, and another one sometime in June. This is the hormone shot that essentially keeps the pituitary gland "out of gas" if you will... so my body has none of the stuff that triggers testosterone production. It's a strange and wacky world! So, I need to keep slamming calcium and vitamin D.
And try to get some exercise, even when I don't feel like it. Hopefully being off the testosterone blocker will have some effect that helps in that regard. We'll see.
Monday, March 15, 2010
Changes, changes, changes...
And now I have that silly David Bowie song stuck in my head. Yaaaaaa! Oh well, my own fault.
I haven't posted since ... March 3rd... and looking back, I'm surprised I had it together to post on that day. I had a bit of a curve thrown my way on the 1st, and it's taken me quite awhile to get some semblance of a handle on it.
Let's see... what are the positive words to use about the curve? Here's one version: "My company is going through a major restructuring. Many kinds of work were being affected and mine was one of them." Or, here's another spin: "My company decided that since my work was to make things easy to use, and because all of our products are now so intuitive, essentially I had worked myself out of a job." But let's just be direct: I was laid-off.
Anyway, I wanted to get through some of the emotions before writing about it in public. Reason? Well, I don't want anything I say appear to be something the company could construe to be negative press, because that could affect my severance package. I am not making that up. Or at least I think it could, potentially, at the sole discretion of said company, come back to bite me somewhere that would most likely hurt a lot. Like my wallet. But really, to say that I was surprised, hurt, shocked, angry.. is all talk about me, and you know.. it is all about me.
The reason it (my job) even figures into this blog is because this came at a time when I feel particularly vulnerable. And at a time when I know my energy level is pretty low. And so, I felt as if the cosmos was just adding insult to injury by this happening at a time when my ability to be excited about a job hunt was maybe at its lowest ebb. Perhaps not, but that was the initial feeling.
But the layoff led to some amazing interactions with the people I love. Truly touching, loving, practical help was offered and given by family (thank you!), friends (thank you!), business colleagues (thank you!)... and I felt as if I was taking part of an enormous group hug.
One example: I was at radiation on Tuesday after getting the news. Tuesdays are doctor day for me, and before I see the doctor, I get weighed (ugh!) and one of the nurses usually asks me how I'm doing before the doctor comes in. So, Carolyn asked. And I told her. Poor Carolyn! But she was great. She said, "Oh you need a hug!" and gave me a great big hug. Now you need to know that Carolyn is almost as tall as I am, so that hug just wrapped me up... it was exactly what I needed and I'll never know how she knew.
But really, it seems that everyone I've talked to about this event has done the same thing, sometimes in a different form, but in the same sense, and I have felt so loved, so cared for, so strengthened by it all.
And today marks the last day of radiation! I will miss seeing the team who has treated me with such kindness and patience (with my antics and this blog) every day. I won't miss the dash to the doctor's office down highway 85 though.
Next step? More hormone shots, coming up. Ouch!
I haven't posted since ... March 3rd... and looking back, I'm surprised I had it together to post on that day. I had a bit of a curve thrown my way on the 1st, and it's taken me quite awhile to get some semblance of a handle on it.
Let's see... what are the positive words to use about the curve? Here's one version: "My company is going through a major restructuring. Many kinds of work were being affected and mine was one of them." Or, here's another spin: "My company decided that since my work was to make things easy to use, and because all of our products are now so intuitive, essentially I had worked myself out of a job." But let's just be direct: I was laid-off.
Anyway, I wanted to get through some of the emotions before writing about it in public. Reason? Well, I don't want anything I say appear to be something the company could construe to be negative press, because that could affect my severance package. I am not making that up. Or at least I think it could, potentially, at the sole discretion of said company, come back to bite me somewhere that would most likely hurt a lot. Like my wallet. But really, to say that I was surprised, hurt, shocked, angry.. is all talk about me, and you know.. it is all about me.
The reason it (my job) even figures into this blog is because this came at a time when I feel particularly vulnerable. And at a time when I know my energy level is pretty low. And so, I felt as if the cosmos was just adding insult to injury by this happening at a time when my ability to be excited about a job hunt was maybe at its lowest ebb. Perhaps not, but that was the initial feeling.
But the layoff led to some amazing interactions with the people I love. Truly touching, loving, practical help was offered and given by family (thank you!), friends (thank you!), business colleagues (thank you!)... and I felt as if I was taking part of an enormous group hug.
One example: I was at radiation on Tuesday after getting the news. Tuesdays are doctor day for me, and before I see the doctor, I get weighed (ugh!) and one of the nurses usually asks me how I'm doing before the doctor comes in. So, Carolyn asked. And I told her. Poor Carolyn! But she was great. She said, "Oh you need a hug!" and gave me a great big hug. Now you need to know that Carolyn is almost as tall as I am, so that hug just wrapped me up... it was exactly what I needed and I'll never know how she knew.
But really, it seems that everyone I've talked to about this event has done the same thing, sometimes in a different form, but in the same sense, and I have felt so loved, so cared for, so strengthened by it all.
And today marks the last day of radiation! I will miss seeing the team who has treated me with such kindness and patience (with my antics and this blog) every day. I won't miss the dash to the doctor's office down highway 85 though.
Next step? More hormone shots, coming up. Ouch!
Wednesday, March 3, 2010
March, 2010... How did it happen?
Well, hey, I thought I'd get in a last post for February, but the day turned into something completely unexpected. I mean, I slept in, puttered about for most of the morning, took Katie for a walk (she was completely thrilled) and then... found myself in a listless, pacing, weird state of mind. And dang it... I couldn't shake it. There were plenty of things to get done, and I didn't do one of them. I hope that wasn't a glimpse of things to come. Heck... I didn't even feel like drinking a glass of wine! That's how bad it was.
I ended up taking a nap, hoping I could sleep it off kind of like the way I used to try to fall asleep on long car rides when I was a kid because of the nifty way sleep has of compressing time. If you can get to sleep, a day-long ride in the car seems more like a couple of hours. And then I started this post on Monday, the first of March, and got derailed by some completely lousy news at work, and so now it's mid-week and I'm lagging behind. In more ways than one.
Last week, I gave the radiation tech's my blog address and now I find myself wondering if I've made anyone feel bad in how I've reported on this journey. I sure hope not. But really, I'm not aware of having said *too* many rude things. And it seems a bit presumptuous to think that there are a lot of people reading this. I know of a few, but most of them know me fairly well. In some respects, this is a bit like working as a disc jockey was for me (yes, I did that ...and worked as a radio engineer for a few years). There's something very unnerving about having a conversation with a microphone, which is a little like writing here. But that's not what I want to talk about.
I ended up taking a nap, hoping I could sleep it off kind of like the way I used to try to fall asleep on long car rides when I was a kid because of the nifty way sleep has of compressing time. If you can get to sleep, a day-long ride in the car seems more like a couple of hours. And then I started this post on Monday, the first of March, and got derailed by some completely lousy news at work, and so now it's mid-week and I'm lagging behind. In more ways than one.
Last week, I gave the radiation tech's my blog address and now I find myself wondering if I've made anyone feel bad in how I've reported on this journey. I sure hope not. But really, I'm not aware of having said *too* many rude things. And it seems a bit presumptuous to think that there are a lot of people reading this. I know of a few, but most of them know me fairly well. In some respects, this is a bit like working as a disc jockey was for me (yes, I did that ...and worked as a radio engineer for a few years). There's something very unnerving about having a conversation with a microphone, which is a little like writing here. But that's not what I want to talk about.
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