Yesterday was the regularly scheduled, three-month visit to the oncologist, though with some additional twists given recent developments.
There was a the blood draw, the consultation, and the three-month, very expensive bone-strengthening shot (Xgeva, a stronger version of Prolia, the drug that Blythe Danner advertises). By the time we went to the appointment, my left side was in so much pain that I could barely walk. I used my walker, but it's oversized, since it had to accommodate the abduction brace when I first got it five years ago, and since I'm not the most graceful or adroit person around, it is forever banging into door frames or getting caught in carpeting, making getting around with the walker probably more hazardous than doing without.
The results of Monday's CT scan were all good. As far as anything related to my cancer, nothing has changed. Given the stability, I'll continue with the same chemo and with the same schedule (three weeks on, one week off) of taking it.
As far as the consequences of the chemo and perhaps of other medications--diarrhea, nausea, lack of appetite--we'll just continue to play around with anti-diarrheal, anti-nausea, and appetite-enhancing meds, hoping that we can eventually find a combination that's tolerable.
But the pains, first in the right leg, then in the right hip, and now in the left buttock, remain unexplained. By the end of the consultation, after the walking from one end of the cancer center to the other and back again, I was in more pain than I had suffered in a long time. For the moment, we'll just try to manage the pain, back again on extended release morphine with as-needed Percocet. Last night, the combination worked fairly well, and though I wasn't pain free, the evening was fairly relaxed. Now we'll hope that as with the earlier incidences, this pain will eventually diminish.
Thursday, September 29, 2016
Sunday, September 25, 2016
9/25/16
We had a long, hot summer--or at least so I inferred from the fact that we turned on our a/c on June 1st, and it's still running this morning. I didn't actually venture out into the heat--a few doctors' appointments, a few lunches or dinners with friends--very often. It was a hard summer with one thing after another coming up.
There was one set of problems around G-I issues. The chemo causes almost non-stop diarrhea, and although I take a week off after three weeks on, my body doesn't really seem to know the difference. It's further confused by the fact that the Percocet is an opioid, which causes constipation. The two effects don't cancel each other out; they just make regular but unpredictable appearances. The chemo also raises my blood pressure. During the three weeks I'm on, I take two meds to reduce hypertension, and they seem to work well. But during the week that is off, I cut out at least one of those, but then I have days of what seems like severe hypotension. Meanwhile, whether or not I'll have an appetite is always an open question, as is how much nausea I'll have and how it will manifest itself. I have all sorts of anti-nausea drugs, but they don't seem to work in any consistent fashion.
Another set of problems involves physical pain from what seems like completely random places. As I recounted earlier, several weeks ago I woke up after my morning nap with a right leg that refused to move. After hoping for the best, we finally spent seven hours in the ER. I had two MRIs, a CT scan, and x-rays, none of which revealed anything, so seven hours later I went home in just as much pain and immobility as when I went. That passed...and moved up into my right hip. We didn't even bother to go to the hospital. That, too, passed... this time into my left buttock, which has now made my left leg immobile. Getting in and out of bed, standing or sitting...all are very painful.
And over all of this is a complete lack of energy. Awake for two or three hours and then my body and brain cease to function. This happens in the morning, when I fall back into bed around ten. I stay awake for lunch (if I eat) and my intellectual stimulation for the day, "The Bold and the Beautful." And then it's back to bed for another 90 minutes. Usually around 6 p.m. I have another, though shorter, collapse.
Mohamed does even more than before for me. Otherwise, I'd just sit here in a lump. He's frustrated as he can't do more, though it's not possible that he's going to create an appetite or calm my stomach. It's also frustrating to know that things aren't going to get better. For once, this, too, isn't going to pass.
To add insult to injury:
Seven months ago, we submitted all the information to Customs and Immigration--financial statements, well-written letters of support from friends--and then we've been waiting impatiently for the results. Mohamed, like everyone else, was given a provisional green card for two years; then he had to apply for "removal of conditions," i.e. making the green card permanent. It all seemed routine until a letter finally arrived from USCIS, with no green card but with a demand for further evidence. I have no idea what we can supply that we already didn't. They thoughtfully included a teeny envelope for our several years of tax returns, credit card info, bank statements, etc.
And then a couple of days later, while I was munching on some granola, a crown snapped off one of my back molars.
Excitement for this week:
Monday (tomorrow) we go for CT scans.
Tuesday it's time for the dentist.
Wednesday we see Dr. Hashmi, the oncologist.
I won't wait so long for the next post, since this week should produce some info.
There was one set of problems around G-I issues. The chemo causes almost non-stop diarrhea, and although I take a week off after three weeks on, my body doesn't really seem to know the difference. It's further confused by the fact that the Percocet is an opioid, which causes constipation. The two effects don't cancel each other out; they just make regular but unpredictable appearances. The chemo also raises my blood pressure. During the three weeks I'm on, I take two meds to reduce hypertension, and they seem to work well. But during the week that is off, I cut out at least one of those, but then I have days of what seems like severe hypotension. Meanwhile, whether or not I'll have an appetite is always an open question, as is how much nausea I'll have and how it will manifest itself. I have all sorts of anti-nausea drugs, but they don't seem to work in any consistent fashion.
Another set of problems involves physical pain from what seems like completely random places. As I recounted earlier, several weeks ago I woke up after my morning nap with a right leg that refused to move. After hoping for the best, we finally spent seven hours in the ER. I had two MRIs, a CT scan, and x-rays, none of which revealed anything, so seven hours later I went home in just as much pain and immobility as when I went. That passed...and moved up into my right hip. We didn't even bother to go to the hospital. That, too, passed... this time into my left buttock, which has now made my left leg immobile. Getting in and out of bed, standing or sitting...all are very painful.
And over all of this is a complete lack of energy. Awake for two or three hours and then my body and brain cease to function. This happens in the morning, when I fall back into bed around ten. I stay awake for lunch (if I eat) and my intellectual stimulation for the day, "The Bold and the Beautful." And then it's back to bed for another 90 minutes. Usually around 6 p.m. I have another, though shorter, collapse.
Mohamed does even more than before for me. Otherwise, I'd just sit here in a lump. He's frustrated as he can't do more, though it's not possible that he's going to create an appetite or calm my stomach. It's also frustrating to know that things aren't going to get better. For once, this, too, isn't going to pass.
To add insult to injury:
Seven months ago, we submitted all the information to Customs and Immigration--financial statements, well-written letters of support from friends--and then we've been waiting impatiently for the results. Mohamed, like everyone else, was given a provisional green card for two years; then he had to apply for "removal of conditions," i.e. making the green card permanent. It all seemed routine until a letter finally arrived from USCIS, with no green card but with a demand for further evidence. I have no idea what we can supply that we already didn't. They thoughtfully included a teeny envelope for our several years of tax returns, credit card info, bank statements, etc.
And then a couple of days later, while I was munching on some granola, a crown snapped off one of my back molars.
Excitement for this week:
Monday (tomorrow) we go for CT scans.
Tuesday it's time for the dentist.
Wednesday we see Dr. Hashmi, the oncologist.
I won't wait so long for the next post, since this week should produce some info.
Saturday, September 10, 2016
9/10/16
I've been really delinquent in updating the last post and the results from August's tests. When KU Med Center used the MyChart electronic feature, they were rather haphazard, slow to post, and when they did so, so detailed and in such medicalese that I rarely could understand much of what they were saying.
Stormont-Vail is very fast to post, consistent in doing so, but concise to the point of equal incomprehensibility. The results of the August tests on my left should were reported in just a couple of sentences. There is a 7 cm metastatic lesion on the scapula, but no indication as to whether that was new or just a reference to what had happened five years ago. The other sentence said that it was impossible to tell whether the humerus is involved. Again, I don't know whether that's a new observation or an old one. Dr/ Hashmi didn't seem to be alarmed by any of the results, so we assume that the comments are from the original metathesis in 2010.
The arm has been feeling better. The leg and hip still don't function completely smoothly, but are better. Since the last post, however, most of the problems have had to do with the G-I track. Some days the thought or sight of food nauseates me; sometimes my appetite is good. Last week was the third week on chemo, and the third week is always hard with nearly constant diarrhea. At some point, my body is telling me, we'll need to reduce the dosage of the chemo again: we've gone from 800mg/day to 600 to 400 to 400 three weeks out of four. Although reducing the dosage seems the logical next step, there is the accompanying worry about how much it can be lowered before it loses efficacy.
Meanwhile, this week, not taking the Votrient, means that my blood pressure is hard to regular, often falling to alarmingly low levels. We went to the S-V Cancer Center yesterday to talk with Dr. Hashmi's nurse (Friday Dr. Hashmi is at KU Med). We'll adjust the blood pressure medication, but actually, I go back on the chemo on Sunday, so there really isn't much time to judge any results.
So that's the health news for the lasr month.
Stormont-Vail is very fast to post, consistent in doing so, but concise to the point of equal incomprehensibility. The results of the August tests on my left should were reported in just a couple of sentences. There is a 7 cm metastatic lesion on the scapula, but no indication as to whether that was new or just a reference to what had happened five years ago. The other sentence said that it was impossible to tell whether the humerus is involved. Again, I don't know whether that's a new observation or an old one. Dr/ Hashmi didn't seem to be alarmed by any of the results, so we assume that the comments are from the original metathesis in 2010.
The arm has been feeling better. The leg and hip still don't function completely smoothly, but are better. Since the last post, however, most of the problems have had to do with the G-I track. Some days the thought or sight of food nauseates me; sometimes my appetite is good. Last week was the third week on chemo, and the third week is always hard with nearly constant diarrhea. At some point, my body is telling me, we'll need to reduce the dosage of the chemo again: we've gone from 800mg/day to 600 to 400 to 400 three weeks out of four. Although reducing the dosage seems the logical next step, there is the accompanying worry about how much it can be lowered before it loses efficacy.
Meanwhile, this week, not taking the Votrient, means that my blood pressure is hard to regular, often falling to alarmingly low levels. We went to the S-V Cancer Center yesterday to talk with Dr. Hashmi's nurse (Friday Dr. Hashmi is at KU Med). We'll adjust the blood pressure medication, but actually, I go back on the chemo on Sunday, so there really isn't much time to judge any results.
So that's the health news for the lasr month.
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