I had a relatively good night's sleep free of nightmares, as far as I can recall.
I awoke feeling better than I have in about two weeks.
Sometime next week, I hope to undergo a CT scan to help determine whether my parathyroid tumor is operable.
In the meantime, one day at a time.
Wednesday, February 28, 2007
Tuesday, February 27, 2007
The infusion
I just got back from the hospital, where I received an intravenous infusion of Zometa. The process took about 20 minutes and went smoothly, despite my extreme aversion to needles. You would think I was Moby Dick about to be harpooned.
But it's over. My doctor said the drug would begin to lower my serum calcium almost immediately, though results that I can feel -- improved appetite, less nausea, less lethargy -- could take two to three days to occur.
Side effects are rare, she said. The most common is a feeling of coming down with the flu, though she has never seen this in any of her patients. The big question, though, is whether it will work on me. My doctor seems certain that it will help, and that's the hope I cling to.
Now, it's time for a nap before I head off to work.
But it's over. My doctor said the drug would begin to lower my serum calcium almost immediately, though results that I can feel -- improved appetite, less nausea, less lethargy -- could take two to three days to occur.
Side effects are rare, she said. The most common is a feeling of coming down with the flu, though she has never seen this in any of her patients. The big question, though, is whether it will work on me. My doctor seems certain that it will help, and that's the hope I cling to.
Now, it's time for a nap before I head off to work.
Saturday, February 24, 2007
The consultation
I had my consultation Friday at Memorial Sloan-Kettering.
The surgeon recommended I get a CT scan to see precisely where in my chest this parathyroid tumor is located, and what would be involved in going after it insofar as the surrounding healthy tissue is concerned.
This tumor, an unremoved remnant of a growth excised in 2005, actually shows up on scans much more distinctly than the one that was taken out. It's as bright as a summer fireworks display. The fact that it is so close to my aorta is a big factor in deciding whether to go after it. Any complications in that part of the chest could be disastrous. A CT scan would give a much better assessment of the odds for success. Indeed, location is everything.
In the meantime, I'm to receive an intravenous infusion Tuesday of a drug meant to lower my serum calcium level. The CT scan would follow sometime afterward, say, in the next several weeks (or sooner if the IV medication doesn't work as hoped).
Meanwhile, my nightmares continue unabated. They generally occur in the minutes just before I wake up in the morning, and they're especially vivid. These factors make them especially easy to remember.
The dreams seem connected to increases in my serum calcium level. On a few rare occasions, they're rather inocuous dreams, but mostly they're nightmares. I don't think they're tied to anxiety on my part about the progress of this illness because, luckily, I can generally keep it together emotionally when confronted with those realities. Then again, all this "keeping it together" may have created a need for some release, which might explain the nightmares.
But the funny thing is that in these nightmares, I see elements of my personality being depicted precisely the way they are in "real" life. That is to say, when I wake up and remember enough of the details of the dream to reach such a conclusion, I find myself saying, "Yup, that's the way I would've acted. They did a great job in central casting."
I'm grateful for these insights into myself, these mirrors on who I am (outwardly, anyway).
The surgeon recommended I get a CT scan to see precisely where in my chest this parathyroid tumor is located, and what would be involved in going after it insofar as the surrounding healthy tissue is concerned.
This tumor, an unremoved remnant of a growth excised in 2005, actually shows up on scans much more distinctly than the one that was taken out. It's as bright as a summer fireworks display. The fact that it is so close to my aorta is a big factor in deciding whether to go after it. Any complications in that part of the chest could be disastrous. A CT scan would give a much better assessment of the odds for success. Indeed, location is everything.
In the meantime, I'm to receive an intravenous infusion Tuesday of a drug meant to lower my serum calcium level. The CT scan would follow sometime afterward, say, in the next several weeks (or sooner if the IV medication doesn't work as hoped).
Meanwhile, my nightmares continue unabated. They generally occur in the minutes just before I wake up in the morning, and they're especially vivid. These factors make them especially easy to remember.
The dreams seem connected to increases in my serum calcium level. On a few rare occasions, they're rather inocuous dreams, but mostly they're nightmares. I don't think they're tied to anxiety on my part about the progress of this illness because, luckily, I can generally keep it together emotionally when confronted with those realities. Then again, all this "keeping it together" may have created a need for some release, which might explain the nightmares.
But the funny thing is that in these nightmares, I see elements of my personality being depicted precisely the way they are in "real" life. That is to say, when I wake up and remember enough of the details of the dream to reach such a conclusion, I find myself saying, "Yup, that's the way I would've acted. They did a great job in central casting."
I'm grateful for these insights into myself, these mirrors on who I am (outwardly, anyway).
Tuesday, February 20, 2007
Spinning in circles
I've been in a fog lately. It's not my usual absentmindedness. Rather, the effects of an increase in my serum calcium are being felt.
I find I'm not able to think as quickly or as clearly as usual. Clarity comes, but with greater effort. Perhaps thinking at length about it makes this mild inability to focus seem worse than it is. I've always had the attention span of a bolt of lightning, but concentrating at home and on the job -- where concentration is crucial, given my line of work -- has become much more difficult of late.
I get tired fairly easily and have needed midday naps more than usual. I have the energy to walk around my favorite Manhattan neighborhood, the East Village, to take photos, but find I need to rest and recharge upon getting home. Otherwise, I can't function. I've felt slightly more energetic the past two days, but I still feel very much off.
My appetite has been minimal these past two weeks or so. I'm just not very hungry. Oddly, sashimi (specifically tuna, salmon, shrimp and fluke) is among the few foods that I've been able to eat with eagerness, and even to excess. To put it in perspective, when I began my struggle with parathyroid cancer in 2002, I weighed 157 pounds. Today, I'm 132. I attribute part of this to exercise, but loss of appetite is also a symptom of the illness.
My knees are constantly stiff and in pain. Part of this is certainly due to my middle age, but my joints shouldn't be this achy and inflexible at this point. I walk up the stairs to the fourth floor of my office, but it's becoming increasingly difficult. My arms also hurt more and they become tired easily.
I've arranged to undergo an intravenous treatment with the calcium-lowering drug Zometa as soon as this week. I'm as needle-phobic as they come, but dealing with the phobia is better than continuing to feel like shit.
I have a consultation Friday with a surgeon at Sloan-Kettering Cancer Center on the feasibility of further surgery. Last year around this time, his opinion was that it would be a futile effort, and I doubt his position will have changed. My "regular" surgeon, who knows my insides better than I do, has already come down against that option.
So, I wait and endure.
I find I'm not able to think as quickly or as clearly as usual. Clarity comes, but with greater effort. Perhaps thinking at length about it makes this mild inability to focus seem worse than it is. I've always had the attention span of a bolt of lightning, but concentrating at home and on the job -- where concentration is crucial, given my line of work -- has become much more difficult of late.
I get tired fairly easily and have needed midday naps more than usual. I have the energy to walk around my favorite Manhattan neighborhood, the East Village, to take photos, but find I need to rest and recharge upon getting home. Otherwise, I can't function. I've felt slightly more energetic the past two days, but I still feel very much off.
My appetite has been minimal these past two weeks or so. I'm just not very hungry. Oddly, sashimi (specifically tuna, salmon, shrimp and fluke) is among the few foods that I've been able to eat with eagerness, and even to excess. To put it in perspective, when I began my struggle with parathyroid cancer in 2002, I weighed 157 pounds. Today, I'm 132. I attribute part of this to exercise, but loss of appetite is also a symptom of the illness.
My knees are constantly stiff and in pain. Part of this is certainly due to my middle age, but my joints shouldn't be this achy and inflexible at this point. I walk up the stairs to the fourth floor of my office, but it's becoming increasingly difficult. My arms also hurt more and they become tired easily.
I've arranged to undergo an intravenous treatment with the calcium-lowering drug Zometa as soon as this week. I'm as needle-phobic as they come, but dealing with the phobia is better than continuing to feel like shit.
I have a consultation Friday with a surgeon at Sloan-Kettering Cancer Center on the feasibility of further surgery. Last year around this time, his opinion was that it would be a futile effort, and I doubt his position will have changed. My "regular" surgeon, who knows my insides better than I do, has already come down against that option.
So, I wait and endure.
Sunday, February 18, 2007
A reminder
The best way to view these photos is to left-click on them, then right-click on the larger image and select "View image." The photo will then be sized to fit the dimensions of your screen.
Sunday, February 11, 2007
Friday, February 09, 2007
One of my favorite photos
Dirty old cat discovers online datingI posted this image about a year ago and rediscovered it recently. It was a tough photo to take because Yasashi, my male cat, kept squirming so damned much.
Anyway, it gives me a much-needed laugh, and I hope you like it, too.
(Yasashi is still searching, by the way.)
Health update II
I got the results of my blood test Thursday and, as I expected, my serum calcium level has increased. At my request, my doctors and I don't discuss numbers because I don't need one more thing to obsess over. So the colleague of my endocrinologist who called today, Dr. M., summed up the results by saying that my calcium level "has gotten worse, but not much worse."
More than five years into this illness, I've become very sensitive to changes in my biochemistry, especially to increases or decreases in my serum calcium. People say the body is a finely tuned machine, and I can tell you from direct experience that this is absolutely true.
When I lose my appetite, when I'm feeling more lethargic than usual, when I have special difficulty in focusing my attention on tasks, it's a foregone conclusion that my calcium has spiked. I've been wrong on this just once.
I also seem to have especially vivid dreams when I'm drowning in my own calcium, particularly dreams that seem to occur just before I wake in the morning. I'm not sure if this is coincidental, perhaps caused by worry, but it's not always a bad thing.
Dr. M. requested that I get a second opinion on the feasibility of surgery from the surgeon with whom I've been dealing since this illness manifested itself in 2002. This was done late last year. His verdict is that the cancer is inoperable. It was also recommended that I get an opinion from the head of surgery at Memorial Sloan-Kettering Cancer Center in Manhattan. This is scheduled for Feb. 23. I pretty much know what he's going to say, because when he and I met for a consultation in January 2006, he had said that surgery would likely not be a viable future option.
Dr. M. also thought this might be a good time for me to begin intravenous treatment with the drug Zometa, which is used to lower dangerously high serum calcium. She added that in the meantime, the head of the endocrinology department at the hospital where I'm treated has contacted colleagues in England and is requesting the materials for the immunotherapy being developed there for the treatment of parathyroid cancer. (In my previous update, I had mistakenly referred to it as gene therapy.)
I'm very candid with my doctors, and they with me. I told Dr. M. that I believe my struggle is entering its end-game. Ever the optimist, she told me that I shouldn't think like that because conventional means to control this cancer's treatment can remain viable for years.
I admire her optimism and am hopeful that she's right.
The decision to begin the Zometa treatment is being left to me. When I feel that my calcium level is beginning to impede my ability to function, then I know it'll be time. As for the immunotherapy, I don't fancy being just the second human guinea pig in this country upon whom it is tried. My doctors completely understand this reluctance.
I'm flattered that they tell me that they respect my opinion and insight.
But when your life is in the balance, you would be surprised just how circumspect and insightful you can become. I think it's as much instinct as it may be intellect.
And now, I must begin to weigh the tough choices.
I just hope it's warmer Saturday than it has been lately. I sure would love to go out and take some photos ...
More than five years into this illness, I've become very sensitive to changes in my biochemistry, especially to increases or decreases in my serum calcium. People say the body is a finely tuned machine, and I can tell you from direct experience that this is absolutely true.
When I lose my appetite, when I'm feeling more lethargic than usual, when I have special difficulty in focusing my attention on tasks, it's a foregone conclusion that my calcium has spiked. I've been wrong on this just once.
I also seem to have especially vivid dreams when I'm drowning in my own calcium, particularly dreams that seem to occur just before I wake in the morning. I'm not sure if this is coincidental, perhaps caused by worry, but it's not always a bad thing.
Dr. M. requested that I get a second opinion on the feasibility of surgery from the surgeon with whom I've been dealing since this illness manifested itself in 2002. This was done late last year. His verdict is that the cancer is inoperable. It was also recommended that I get an opinion from the head of surgery at Memorial Sloan-Kettering Cancer Center in Manhattan. This is scheduled for Feb. 23. I pretty much know what he's going to say, because when he and I met for a consultation in January 2006, he had said that surgery would likely not be a viable future option.
Dr. M. also thought this might be a good time for me to begin intravenous treatment with the drug Zometa, which is used to lower dangerously high serum calcium. She added that in the meantime, the head of the endocrinology department at the hospital where I'm treated has contacted colleagues in England and is requesting the materials for the immunotherapy being developed there for the treatment of parathyroid cancer. (In my previous update, I had mistakenly referred to it as gene therapy.)
I'm very candid with my doctors, and they with me. I told Dr. M. that I believe my struggle is entering its end-game. Ever the optimist, she told me that I shouldn't think like that because conventional means to control this cancer's treatment can remain viable for years.
I admire her optimism and am hopeful that she's right.
The decision to begin the Zometa treatment is being left to me. When I feel that my calcium level is beginning to impede my ability to function, then I know it'll be time. As for the immunotherapy, I don't fancy being just the second human guinea pig in this country upon whom it is tried. My doctors completely understand this reluctance.
I'm flattered that they tell me that they respect my opinion and insight.
But when your life is in the balance, you would be surprised just how circumspect and insightful you can become. I think it's as much instinct as it may be intellect.
And now, I must begin to weigh the tough choices.
I just hope it's warmer Saturday than it has been lately. I sure would love to go out and take some photos ...
Sunday, February 04, 2007
Saturday, February 03, 2007
Friday, February 02, 2007
Nothing but a dream ...
I've taken great pleasure in not posting a health update since November.
I've taken even greater pleasure in sharing my photos and miscellaneous thoughts instead.
Since my last post on the subject, I had been in the midst of a concerted effort to avoid my doctors. I'm sick of the constant blood tests, the nerve-racking wait for results, the consultations, the cycles of optimism and despair, dealing with the goddamn health insurance company.
And then last week I thought that too much time had passed without at least checking in with my endocrinologist. In the end, my fears almost always win out.
I had a blood test today to check my serum calcium level and other metabolic markers as part of monitoring and treatment of my parathyroid cancer. This has been going on for more than five years.
I should learn the results sometime Monday. But through a deal with my doctors, I'll be called only if there's a significant change in my calcium level. And most importantly, at my request they won't tell me the exact numbers revealed in the test, because I'm sick of dealing with numbers and their often abstract meanings. Numbers don't represent how one feels physically or mentally. They're only data over which to get stressed out.
Before the blood test, we had a frank discussion about my health situation. My endocrinologist, a wonderfully compassionate woman of whom I'm very fond, told me quite simply that she doesn't know of a surgeon anywhere who would choose to operate on me. Even though I had a scan in mid-November that revealed a small, vivid tumor glowing like a nova inside my chest, to where the cancer has spread from my neck, she said my track record after five major surgeries of having this tissue cut out completely is quite poor. The chances of success are now slim to none, the experts agree, and the surgery, at least at this point, is more of a shock to my system than the disease.
In the community of surgeons familiar with my case -- and there are many, here and abroad -- I am an untouchable. Surgeons exist to cut, and my case no longer affords them that opportunity.
So, she and I discussed treatment options. She believes it's time we travel down some uncharted roads because conventional therapies and medications go only so far. We talked about an experimental gene therapy developed in England for parathyroid cancer. This cancer is extremely rare, so it's no surprise that the pool of human guinea pigs in Britain is extremely small.
My doctor believes the physicians involved are amenable to shipping the materials to the U.S., where just one person in a nation of 300 million is now undergoing the therapy.
I would be the second person.
Nothing is known of its long-term success rate or its immediate and long-term side effects. My doctor isn't even sure exactly how it would be administered. This treatment is on the cutting edge of the cutting edge.
Even though this gene therapy was mentioned only as a possibility, I need to prepare myself for the choice between risking it and possibly helping others as well as myself, or sparing myself the fuss and accepting the reality (as it stands now) that this disease ultimately conquers.
If there were a large enough group of patients treated with this therapy from whom results and risks could be extrapolated, it wouldn't be so bad. But it's hard to draw conculsions from one, perhaps two people in the U.S. and a handful elsewhere, and the doctors won't even try.
I'm on a medication, experimental until last spring, that is losing its effectiveness (at least in my case) in keeping a hold, however tenuous, on my calcium level. This spike in calcium level is what makes parathyroid cancer fatal. At any rate, I'm happy and even a bit proud that I was part of the small group of patients upon whom this medication was tried out and declared safe.
There are other, conventional medications that can be used to the same effect, at least temporarily. But the route of most promise leads toward experimental treatments. If my time turns out to be limited, do I want to risk being debilitated and thus prevented from enjoying it by some treatment that may not work and may even make things worse? On the other hand, it could succeed ...
When in doubt, whistle.
I've taken even greater pleasure in sharing my photos and miscellaneous thoughts instead.
Since my last post on the subject, I had been in the midst of a concerted effort to avoid my doctors. I'm sick of the constant blood tests, the nerve-racking wait for results, the consultations, the cycles of optimism and despair, dealing with the goddamn health insurance company.
And then last week I thought that too much time had passed without at least checking in with my endocrinologist. In the end, my fears almost always win out.
I had a blood test today to check my serum calcium level and other metabolic markers as part of monitoring and treatment of my parathyroid cancer. This has been going on for more than five years.
I should learn the results sometime Monday. But through a deal with my doctors, I'll be called only if there's a significant change in my calcium level. And most importantly, at my request they won't tell me the exact numbers revealed in the test, because I'm sick of dealing with numbers and their often abstract meanings. Numbers don't represent how one feels physically or mentally. They're only data over which to get stressed out.
Before the blood test, we had a frank discussion about my health situation. My endocrinologist, a wonderfully compassionate woman of whom I'm very fond, told me quite simply that she doesn't know of a surgeon anywhere who would choose to operate on me. Even though I had a scan in mid-November that revealed a small, vivid tumor glowing like a nova inside my chest, to where the cancer has spread from my neck, she said my track record after five major surgeries of having this tissue cut out completely is quite poor. The chances of success are now slim to none, the experts agree, and the surgery, at least at this point, is more of a shock to my system than the disease.
In the community of surgeons familiar with my case -- and there are many, here and abroad -- I am an untouchable. Surgeons exist to cut, and my case no longer affords them that opportunity.
So, she and I discussed treatment options. She believes it's time we travel down some uncharted roads because conventional therapies and medications go only so far. We talked about an experimental gene therapy developed in England for parathyroid cancer. This cancer is extremely rare, so it's no surprise that the pool of human guinea pigs in Britain is extremely small.
My doctor believes the physicians involved are amenable to shipping the materials to the U.S., where just one person in a nation of 300 million is now undergoing the therapy.
I would be the second person.
Nothing is known of its long-term success rate or its immediate and long-term side effects. My doctor isn't even sure exactly how it would be administered. This treatment is on the cutting edge of the cutting edge.
Even though this gene therapy was mentioned only as a possibility, I need to prepare myself for the choice between risking it and possibly helping others as well as myself, or sparing myself the fuss and accepting the reality (as it stands now) that this disease ultimately conquers.
If there were a large enough group of patients treated with this therapy from whom results and risks could be extrapolated, it wouldn't be so bad. But it's hard to draw conculsions from one, perhaps two people in the U.S. and a handful elsewhere, and the doctors won't even try.
I'm on a medication, experimental until last spring, that is losing its effectiveness (at least in my case) in keeping a hold, however tenuous, on my calcium level. This spike in calcium level is what makes parathyroid cancer fatal. At any rate, I'm happy and even a bit proud that I was part of the small group of patients upon whom this medication was tried out and declared safe.
There are other, conventional medications that can be used to the same effect, at least temporarily. But the route of most promise leads toward experimental treatments. If my time turns out to be limited, do I want to risk being debilitated and thus prevented from enjoying it by some treatment that may not work and may even make things worse? On the other hand, it could succeed ...
When in doubt, whistle.
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