Yesterday was the regularly scheduled CT scan of my lungs and abdomen, a scan that takes place once every three months. It's meant to reveal what's happening (or not) with the primary tumor in my kidney and with other tumors, such as those on my spine, that might evidence changes.
In the two weeks between having seen Dr. Hashmi and yesterday's scans, things were generally up and down. On the one hand, the worrisome diarrhea, probably caused mainly by the Votrient, abated, in part because I took two weeks off from the Votrient for the first time (I've been back on it now for five days) and because the morphine, which I take for pain in lieu of Percocet, seems to have a strong opioid-induced constipation effect. My right leg still doesn't work very well, though there is somewhat more flexibility. Two days of leaving the house and thus doing more walking (yesterday for the scan and the day before to do some errands) seem to have left it much stiffer than it was before. I don't think that the morphine is more effective than the Percocet in controlling pain, even though the morphine is time released; I may not sleep more often now, but certainly the sleep is deeper and harder to wake from. It's discouraging to have so little energy and to ache when standing or climbing stairs or getting in or out of bed.
The CT scans take place at Stormont-Vail Hospital here, rather than at the affiliated cancer center because the machine is newer there, and Medicare demands that the newest machine in the system be used. Mohamed and I got checked in at noon, and they brought me my two large glasses of Kool-Aid flavored water. And hour later, the water sloshing around inside me, I was wheeled away for the scans. We will see Dr. Hashmi on Thursday and get the results then.
I was supposed to have an MRI on my hip and femur on Wednesday, but the hospital called yesterday to reschedule. After the claustrophobic, hour-long experience I had had with the enclosed MRI during our last visit to the ER, I had asked for an open-sided MRI at a different facility. Evidently, the stent in my heart isn't compatible with this machine, so I'll have to wait till July 15th for the MRI and then have it in the same machine from the last time. That was the first time I got panicky while having an MRI. I did manage to get through it, but there were a few unpleasant moments when I wasn't sure. This time, I'll take a Xanax just in case.
I'd hoped to have the results from both the CT scan and the MRI when we see Dr. Hashmi on Thursday, because I would like to make some decisions about what next in terms of treatment. We'll hope the CT results are sufficient.
On a side note, one of the problems of the last several weeks has been a lack of appetite and continuing nausea. A childhood friend, who follows the blog, who noted (literally) a couple of my culinary preferences, and who now lives in Seattle, had FedEx overnight me four dozen oysters from the Pike Place Market (I think I ate about 40 of them myself) and then sent two rounds of one of my very favorite (and runniest and smelliest) of all French cheese, époisses. My appetite suddenly reappeared.
Saturday, June 25, 2016
Tuesday, June 14, 2016
6/14/16
When Democrats talk about "common sense" gun reforms, they have already given up the fight, signaling that there's no energy for meaningful regulation and that the status quo will remain the order of the day.
Yesterday was a recently scheduled trip to the oncologist. The last week on Votrient had been marked by frequent and severe diarrhea. We had hoped the last week, a break from the chemo, would change that fact and avoid the pitfalls of dehydration and low blood pressure. But the diarrhea continued, and the question of the day was going to be whether to continue at the same level of Votrient or reduce the dosage once more. The visit to the ER, however, added a second subject of discussion.
Over the weekend, I got around the house using a walker. Because I was wearing a large abduction cast when I got the walker five years ago, it's oversized and difficult to maneuver through doors. But it was helpful, and as the days passed, I achieved more mobility in my right leg. I increased the dosage of Percocet to manage the pain. Neither the x-rays nor the MRI at the emergency room had shown anything worrisome, but Dr. Hashmi wants further tests, since the pain is where the cancer first and most importantly manifested itself. On the 24th, I'll have the regularly CT scan to check on the primary tumor; on the 29th, I'll have another MRI, this time not on my spine but on my hip and femur. We changed the pain medication to a timed-release morphine, which I can supplement with Percocet if I get breakthrough pain.
We're going to stick with the Votrient, though I'm taking this week, the second in a row, off to see if my body won't recover a bit more with the extra time off. Then we'll resume the three weeks on, one week off schedule to see how that works. During the week off the Votrient I take only one anti-hypertension medication. Since the problem for the last 18 months has been low, not high, blood pressure, we had asked Dr. Van at KU Med whether I could stop taking even that one medication during the week off. He had said no. But Dr. Hashmi suggested that the dosages I was taking of the two meds during the weeks I was on Votrient and the one med during the week off were both rather strong, perhaps I should experiment with reducing the strength of the meds, while not going cold turkey.
Yesterday was a recently scheduled trip to the oncologist. The last week on Votrient had been marked by frequent and severe diarrhea. We had hoped the last week, a break from the chemo, would change that fact and avoid the pitfalls of dehydration and low blood pressure. But the diarrhea continued, and the question of the day was going to be whether to continue at the same level of Votrient or reduce the dosage once more. The visit to the ER, however, added a second subject of discussion.
Over the weekend, I got around the house using a walker. Because I was wearing a large abduction cast when I got the walker five years ago, it's oversized and difficult to maneuver through doors. But it was helpful, and as the days passed, I achieved more mobility in my right leg. I increased the dosage of Percocet to manage the pain. Neither the x-rays nor the MRI at the emergency room had shown anything worrisome, but Dr. Hashmi wants further tests, since the pain is where the cancer first and most importantly manifested itself. On the 24th, I'll have the regularly CT scan to check on the primary tumor; on the 29th, I'll have another MRI, this time not on my spine but on my hip and femur. We changed the pain medication to a timed-release morphine, which I can supplement with Percocet if I get breakthrough pain.
We're going to stick with the Votrient, though I'm taking this week, the second in a row, off to see if my body won't recover a bit more with the extra time off. Then we'll resume the three weeks on, one week off schedule to see how that works. During the week off the Votrient I take only one anti-hypertension medication. Since the problem for the last 18 months has been low, not high, blood pressure, we had asked Dr. Van at KU Med whether I could stop taking even that one medication during the week off. He had said no. But Dr. Hashmi suggested that the dosages I was taking of the two meds during the weeks I was on Votrient and the one med during the week off were both rather strong, perhaps I should experiment with reducing the strength of the meds, while not going cold turkey.
Friday, June 10, 2016
Back in the US*ER
Yesterday started benignly enough. One of the two major projects for the summer was new carpet for the bedroom. The carpet arrived, and the installer came to do his work. Mohamed had moved much of the small things out of the bedroom, and he and installer finished cleaning out the room. At 11, I was ready for my morning nap, so I lay down in the spare bedroom and slept for 90 minutes. When I woke up, something had changed, and my right leg, the one with the titanium femur and hip, no longer worked. It was as if it has seized up, and only with great pain could I move it at all. I walked by taking tiny steps and hanging onto furniture and door frames.
Nothing changed in the course of the day. The pain was unabated every time I moved. By 7 last night, we decided to go to the ER for what turned out to be a seven-hour visit, the time lengthened by the number of tests and a very busy ER. Getting out of my sweats and into a gown was a major ordeal. Every movement of my right leg and hip was extremely painful. After an hour or so, the ER doc decided that I should have x-rays, so I was wheeled through the maze of corridors and then transferred, at great pain, to the x-ray table. They took five x-rays, three of them in uncomfortable positions. This was the moment I began to be seriously worried. The cancer attacks the bones. Every three months, I take the five-figure shot to try to strengthen my bones. Could the pain mean that there was some sort of fracture of the hip? From there, it was back onto the regular bed and a return to the ER cubicle where Mohamed was patiently waiting, as we would be doing for much of the night. The results came back in 45 minutes or so, and they showed no anomalies of any kind.
Next came pain medication: Fentanyl. After all the descriptions of how powerful Fentanyl is following Prince's death, I was expected an immediate effect. Instead, there was no relief from the pain and no pleasant high. I couldn't tell I'd been given anything. After more waiting, I was wheeled off once again, this time for an MRI. This was the most difficult MRI I've ever had. For one thing, I was completely enclosed--no open-sided machine. For another, the technician informed me that the process would take a full hour. MRIs are hardly pleasant, but I've done okay with them before. This time, however, I had a moment of panic. I had asked for a blanket, and suddenly it became very hot. Sweat formed on my lip. My hands, which were crossed over my chest, went to sleep. To keep for panicking, I tried to list at least Paris Métro stop for each letter of the alphabet. I counted backwards from 1000 by sevens. At one point, I almost squeezed the ball to summon the tech and say I couldn't go on, but I hung in there. First forty minutes without contrast, then another fifteen minutes with contrast. And then, at midnight, off the hard MRI table and back onto my bed, wheeled once more to the cubicle. The MRIs also showed no problems.
So by 1 a.m., we were faced with a decision: should I stay in the hospital or go home. Although perhaps it would be more efficient to manage the pain if I were in the hospital (though at that point, the pain still hadn't been managed), but there were no clues about what was really wrong. The ER doctor thought maybe the last radiation treatments hadn't work and I will need more radiation on my spine, but that was just a guess, since the MRI and CT scans hadn't been compared. I decided to go home, no wiser than when I went to the ER and in no less pain. We got home at 2, hobbled to bed, and fell asleep. I'll increase the dosage of Percocet to try to manage the pain, and we have a visit with Dr. Hashmi scheduled for Monday--if we don't see him before.
It was a long, exhausting, and frustrating night. We've gotten the walker out of the attic, so moving is a little easier. And that was Thursday night and early Friday morning chez nous.
Nothing changed in the course of the day. The pain was unabated every time I moved. By 7 last night, we decided to go to the ER for what turned out to be a seven-hour visit, the time lengthened by the number of tests and a very busy ER. Getting out of my sweats and into a gown was a major ordeal. Every movement of my right leg and hip was extremely painful. After an hour or so, the ER doc decided that I should have x-rays, so I was wheeled through the maze of corridors and then transferred, at great pain, to the x-ray table. They took five x-rays, three of them in uncomfortable positions. This was the moment I began to be seriously worried. The cancer attacks the bones. Every three months, I take the five-figure shot to try to strengthen my bones. Could the pain mean that there was some sort of fracture of the hip? From there, it was back onto the regular bed and a return to the ER cubicle where Mohamed was patiently waiting, as we would be doing for much of the night. The results came back in 45 minutes or so, and they showed no anomalies of any kind.
Next came pain medication: Fentanyl. After all the descriptions of how powerful Fentanyl is following Prince's death, I was expected an immediate effect. Instead, there was no relief from the pain and no pleasant high. I couldn't tell I'd been given anything. After more waiting, I was wheeled off once again, this time for an MRI. This was the most difficult MRI I've ever had. For one thing, I was completely enclosed--no open-sided machine. For another, the technician informed me that the process would take a full hour. MRIs are hardly pleasant, but I've done okay with them before. This time, however, I had a moment of panic. I had asked for a blanket, and suddenly it became very hot. Sweat formed on my lip. My hands, which were crossed over my chest, went to sleep. To keep for panicking, I tried to list at least Paris Métro stop for each letter of the alphabet. I counted backwards from 1000 by sevens. At one point, I almost squeezed the ball to summon the tech and say I couldn't go on, but I hung in there. First forty minutes without contrast, then another fifteen minutes with contrast. And then, at midnight, off the hard MRI table and back onto my bed, wheeled once more to the cubicle. The MRIs also showed no problems.
So by 1 a.m., we were faced with a decision: should I stay in the hospital or go home. Although perhaps it would be more efficient to manage the pain if I were in the hospital (though at that point, the pain still hadn't been managed), but there were no clues about what was really wrong. The ER doctor thought maybe the last radiation treatments hadn't work and I will need more radiation on my spine, but that was just a guess, since the MRI and CT scans hadn't been compared. I decided to go home, no wiser than when I went to the ER and in no less pain. We got home at 2, hobbled to bed, and fell asleep. I'll increase the dosage of Percocet to try to manage the pain, and we have a visit with Dr. Hashmi scheduled for Monday--if we don't see him before.
It was a long, exhausting, and frustrating night. We've gotten the walker out of the attic, so moving is a little easier. And that was Thursday night and early Friday morning chez nous.
Tuesday, June 7, 2016
6/7/16
The last weeks' silence doesn't mean that no news is good news. The last couple of months have been rough, the last month rougher, the last week rougher still, and yesterday rough enough to send us to the cancer center here for emergency treatment.
Ever since the last round of radiation, there have been numerous setbacks, though the radiation itself seems to have worked and the pain in my lower spine to have been alleviated. Whether this is related to the radiation or not, I developed a severe, tight, dry cough. It was most pronounced at night, when I'd wake up at least once or twice for a ten- to fifteen-minute bout of coughing. As long as I didn't move, I wouldn't cough, but the moment I changed positions, coughing began. It was less frequent and less severe during the day, but in both instances it gave me terrible headaches. Dr. Hashmi gave me a codeine-lace cough suppressant, which eventually seems to have cleared the matter up, though the codeine made me so sleepy that I was even more fatigued (and worthless) than usual. One good result, however, was that since a puff or two on a cigarette would lead to horrible coughing, which led to major headaches, I quit smoking. Over a week down, and so far I haven't missed it. An aversion therapy that actually worked.
The worst side effects were in my digestive system. First, during the last weeks, I've had many occurrences of nausea. And that means that many days I have almost no appetite. The thought of food often makes me want to vomit. The tendency is especially pronounced at lunch, when almost the only thing I've been able to eat is Greek yogurt, which is at least healthful and coats the stomach.
Even worse has been increasing diarrhea. Between that and the nausea, I lost 7# in the last week. By last Thursday, the diarrhea was very frequent. We thought that maybe, since it was the last week of Votrient before my week break, once I stopped the Votrient on Saturday, the diarrhea would subside. But it only got worse. Meanwhile, my blood pressure fell to a low level. The last time something similar happened was 18 months ago when I was admitted to the hospital for kidney failure and hypotension. After that, we reduced the Votrient dosage from daily to taking a week off each months.
Not knowing quite what to do, yesterday we called the cancer center here and were urged to come in.
Once there, I had blood work done, the results of which were generally normal. Then they began an IV with saline solution, since dehydration is a fear. Dr. Hashmi was at a conference, but we met for the first time with his primary nurse, Ginger, who seemed very knowledgeable and decisive. After the saline drip, she added a mixture of a steroid and an anti-nausea fluid. She also prescribed a stronger anti-diarrheal. Although my blood pressure remains low, the nausea has disappeared (I was actually hungry last night) and the diarrhea seems under control. We are scheduled for another saline drip this afternoon, though if we don't think I need it, we can cancel. Ginger also scheduled an advanced meeting with Dr. Hashmi for next Monday, before I resume the Votrient, to see whether we need to reduce the dosage one more time. I've taken it for five years now, longer than anyone in clinical trials. It has been remarkably effective, though since after over four years of no further tumor growth, twice within the last few months tumors on my spine have begun to grow, requiring radiation, there is some question about whether its efficacy has been reduced. And then there are the side effects, especially the diarrhea, which my body may be tolerating less.
I'm sorry this post is nothing but medical issues--not a single Trump reference in sight.
Ever since the last round of radiation, there have been numerous setbacks, though the radiation itself seems to have worked and the pain in my lower spine to have been alleviated. Whether this is related to the radiation or not, I developed a severe, tight, dry cough. It was most pronounced at night, when I'd wake up at least once or twice for a ten- to fifteen-minute bout of coughing. As long as I didn't move, I wouldn't cough, but the moment I changed positions, coughing began. It was less frequent and less severe during the day, but in both instances it gave me terrible headaches. Dr. Hashmi gave me a codeine-lace cough suppressant, which eventually seems to have cleared the matter up, though the codeine made me so sleepy that I was even more fatigued (and worthless) than usual. One good result, however, was that since a puff or two on a cigarette would lead to horrible coughing, which led to major headaches, I quit smoking. Over a week down, and so far I haven't missed it. An aversion therapy that actually worked.
The worst side effects were in my digestive system. First, during the last weeks, I've had many occurrences of nausea. And that means that many days I have almost no appetite. The thought of food often makes me want to vomit. The tendency is especially pronounced at lunch, when almost the only thing I've been able to eat is Greek yogurt, which is at least healthful and coats the stomach.
Even worse has been increasing diarrhea. Between that and the nausea, I lost 7# in the last week. By last Thursday, the diarrhea was very frequent. We thought that maybe, since it was the last week of Votrient before my week break, once I stopped the Votrient on Saturday, the diarrhea would subside. But it only got worse. Meanwhile, my blood pressure fell to a low level. The last time something similar happened was 18 months ago when I was admitted to the hospital for kidney failure and hypotension. After that, we reduced the Votrient dosage from daily to taking a week off each months.
Not knowing quite what to do, yesterday we called the cancer center here and were urged to come in.
Once there, I had blood work done, the results of which were generally normal. Then they began an IV with saline solution, since dehydration is a fear. Dr. Hashmi was at a conference, but we met for the first time with his primary nurse, Ginger, who seemed very knowledgeable and decisive. After the saline drip, she added a mixture of a steroid and an anti-nausea fluid. She also prescribed a stronger anti-diarrheal. Although my blood pressure remains low, the nausea has disappeared (I was actually hungry last night) and the diarrhea seems under control. We are scheduled for another saline drip this afternoon, though if we don't think I need it, we can cancel. Ginger also scheduled an advanced meeting with Dr. Hashmi for next Monday, before I resume the Votrient, to see whether we need to reduce the dosage one more time. I've taken it for five years now, longer than anyone in clinical trials. It has been remarkably effective, though since after over four years of no further tumor growth, twice within the last few months tumors on my spine have begun to grow, requiring radiation, there is some question about whether its efficacy has been reduced. And then there are the side effects, especially the diarrhea, which my body may be tolerating less.
I'm sorry this post is nothing but medical issues--not a single Trump reference in sight.
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