this time for results of last week's blood work and CT scan. The facility looked more crowded than usual, and our wait was longer, but we assumed it was because of doubling up from the coming two weeks of holidays. In our case, though, the wait was special. A couple of weeks ago, we had the worst winter weather of the past semester years, and Dr. Hashmi,, working his way tenderly over the snow, had fallen and broken his right arm. So his Physician Assistant was working her shift and then in charge of the computer on his shift.
Mohamed and I are focused on the many problems and pains. Dr. Hashmi was focused on the big picture. Although there's nothing new here, he was wide-eyed over the fact that I am well into my sixth years with the stage four cancer and the chemotherapy. "It's not that I'm minimizing your pain," he said, though it was exactly that that it felt as if he were doing, "but after all this time, the results are stable. There's absolutely no growth in the cancers. Most of the people I treat with Votrient, are 'miserable' after a short period of time, and we have to move on to something else." So that was the good news: concerning the cancer, much has remained the same for all this time.
That's good news, of course,, but I still couldn't help worrying about the symptoms that remain. I had lost 10# since the last visit. That doesn't bother me too much, since the nausea has generally subsided. I don't have a huge appetite, true, but I eat rather consistently. The most serious for me, though, aren't the constant pains and the debilitating fatigue. So we're adjusting the morphine (doubling the dosage0 and will continue with the Percocet. We'll see how that works out. And of course, there are two further side effects. The increase in opioids means an increase in constipation. And second, does this mean that there will be an increase in fatigue? Yes certainly to the latter. Is there nothing we can do about fatigue. Those discussions have always centered on transfusions. With a low hemoglobin and/or or, fatigue follows, and transfusions can do a lot to supply energy. This time, however, without a second thought, both Dr. Hasmi and Ginger said "Ritalin." So Ritalin us used to provide energy, a logical solution, though we'd never thought of it. If after all these years something a common as Ritalin helps significantly, I'm going to be plenty pissed (and relieved).
Looking forward to:
Portland friends Joanne and Darrell sent two dozen oysters, which arrived yesterday and which I'm looking forward to eat tonight. I never was very good at sharing oysters.
L.A. friend Jill sent a lovely gift basket of wine, cheese, crackers, soup--all ready for exploration.
K.C. friend T.J., whom we haven't seen in some time is coming in for lunch today, and tomorrow it's Scott, also from KC.
Our social life is improving.
Happy Hanukkah. Merry Christmas! And all the best of 2017!!
Love,
Howard and Mohamed
Thursday, December 22, 2016
Friday, December 16, 2016
politics and prose--proofread finally
So much has happened over the last two months, so much left without commentary. Surely I can do better than that.
Clinton Comey
Cozy Bear
Conway Bannon
A snuggling pair.
An homage to what seemed like high art and wit 60 years ago:
Trump Trump
The magical suit
The more you listen
The more you toot.
Goldman Sachs
225K a pop
Advice benign
Why should she stop?
Over our head
Whatever she said
It's something we've heard
I'm so reassured.
Perhaps we'd be better off with Mike Pence:
First agenda item defund planned parenthood
That'll teach them it's no errant good
Reparative therapy for sinful gays
We can turn them from their awful ways.
No beautiful wall with President Pence
Just a pretty but restrictive fence.
Several months ago, I heard President Carter say that between Ted Cruz and Donald Trump, he'd rather the Democratic candidate ran again Trump because Cruz is an ideologue and Trump is more "malleable." It was a dear, sweet, half-formed thought. It would be nice if only those influencing Trump were progressive, though Lewandowski, Manafort,, Conway, and Bannon were hardly promising). And now the malleable Trump has surrounded himself with one advisor more frightening than the rest.. In the short-run, conspiracy theorist Gen Michael Flynn is probably the scariest. In the longer run, Energy Secretary-nominee Rick Perrry (let's just hope he forgets to remember which agency he wants to eliminate) and all the anti-Environmentalists at EPA are even more alarming. As someone who spent his entire life in public education, I can't help but cringe at Amway heiress Betsy DeVos,, who has never spent a day in public education and who hates neighborhood schools, as Secretary of Education.
I can't help but enjoy the parade of self-deluded "moderate" Republicans making fools of themselves--Mitt Romney, Rudy Giuliani, Chris Christie (aka, the Whore of Trenton). But what was with Al Gore, who was practically schoolgirl giddy after his meeting, as if he had gotten major concessions from Trump--just before Trump nominated his let's abolish the EPA candidate to head the EPA.
The last few weeks have been rather bumpy health-wise. There've been a couple of previously unscheduled doctors' visits. For three weeks, I've had a severe earache. The first nurse practitioner said that it was the Eustachian tube, and we'd have to treat it through the nose, a treatment that causes nose bleeds, something I don't want since it leads to the ER and balloon or tampon up the nose for several days. A week later, another suggested treating it as a nasal infection. We're tr\ying that without much success. And then there was a pinched nerve in the neck--also very painful. We took two weeks off from chemo, trying not very successfully to balance constipation from the opioids and diarrhea from the chemo. We had blood work and CT scans this week, and next week there is a consultation with Dr. Hashmi.
And so it goes.
Clinton Comey
Cozy Bear
Conway Bannon
A snuggling pair.
An homage to what seemed like high art and wit 60 years ago:
Trump Trump
The magical suit
The more you listen
The more you toot.
Goldman Sachs
225K a pop
Advice benign
Why should she stop?
Over our head
Whatever she said
It's something we've heard
I'm so reassured.
Perhaps we'd be better off with Mike Pence:
First agenda item defund planned parenthood
That'll teach them it's no errant good
Reparative therapy for sinful gays
We can turn them from their awful ways.
No beautiful wall with President Pence
Just a pretty but restrictive fence.
Several months ago, I heard President Carter say that between Ted Cruz and Donald Trump, he'd rather the Democratic candidate ran again Trump because Cruz is an ideologue and Trump is more "malleable." It was a dear, sweet, half-formed thought. It would be nice if only those influencing Trump were progressive, though Lewandowski, Manafort,, Conway, and Bannon were hardly promising). And now the malleable Trump has surrounded himself with one advisor more frightening than the rest.. In the short-run, conspiracy theorist Gen Michael Flynn is probably the scariest. In the longer run, Energy Secretary-nominee Rick Perrry (let's just hope he forgets to remember which agency he wants to eliminate) and all the anti-Environmentalists at EPA are even more alarming. As someone who spent his entire life in public education, I can't help but cringe at Amway heiress Betsy DeVos,, who has never spent a day in public education and who hates neighborhood schools, as Secretary of Education.
I can't help but enjoy the parade of self-deluded "moderate" Republicans making fools of themselves--Mitt Romney, Rudy Giuliani, Chris Christie (aka, the Whore of Trenton). But what was with Al Gore, who was practically schoolgirl giddy after his meeting, as if he had gotten major concessions from Trump--just before Trump nominated his let's abolish the EPA candidate to head the EPA.
The last few weeks have been rather bumpy health-wise. There've been a couple of previously unscheduled doctors' visits. For three weeks, I've had a severe earache. The first nurse practitioner said that it was the Eustachian tube, and we'd have to treat it through the nose, a treatment that causes nose bleeds, something I don't want since it leads to the ER and balloon or tampon up the nose for several days. A week later, another suggested treating it as a nasal infection. We're tr\ying that without much success. And then there was a pinched nerve in the neck--also very painful. We took two weeks off from chemo, trying not very successfully to balance constipation from the opioids and diarrhea from the chemo. We had blood work and CT scans this week, and next week there is a consultation with Dr. Hashmi.
And so it goes.
Thursday, November 10, 2016
80 prescient years ago
When I was growing up in Iowa, I was fascinated by one of my mother's books, always there on the living room book shelf. Written in 1936 by Sinclair Lewis, it was "It Can't Happen Here"--maybe in Europe where Fascism/Nazism were on the rise, but not here. Not here until "Buzz" Waldrip runs for and wins the Presidency on a nativist, populist platform. After an initial year or so of waning enthusiasm for Waldrip's series of failed promises, the country begins to disintegrate. Americans flee to Mexico which Waldrip has singled out for attack during his campaign, as well as to Canada. By the time the book ends, the country is in civil war.
Despite months of reservations, I had convinced myself by Tuesday night, that HRC was going to win. I didn't even think it would be close. And then I sat masochistically for four hours and watched as state after state went for Trump with pundits suggesting less and less realistic ways Hillary could still win the state. What has happened to America after 17 months of pathological lying, misogyny, insults, admission of not paying taxes for two decades, boasting of sexual assaults...the list is almost endless that we elect a man like Trump as President? What will happen with the Supreme Court, with the Paris climate agreement, with the nuclear treaty with Iran? It can't happen here, eh?
Yesterday was the regular six-week visit to see Dr. Hashmi. The cancer center was quite crowded and rather depressing. Nothing much had changed. Although I still have constant pain somewhat managed by the morphine and/or Percocet, his tack this visit was, "It's not ideal, but it's working." Yes, the treatment for six years of kidney cancer has been keeping everything stable. I wouldn't mind something a bit closer to the ideal--a little less pain, a few fewer grunts as I stand or sit. I think I'll have to continue, however, with the present regimen.
Despite months of reservations, I had convinced myself by Tuesday night, that HRC was going to win. I didn't even think it would be close. And then I sat masochistically for four hours and watched as state after state went for Trump with pundits suggesting less and less realistic ways Hillary could still win the state. What has happened to America after 17 months of pathological lying, misogyny, insults, admission of not paying taxes for two decades, boasting of sexual assaults...the list is almost endless that we elect a man like Trump as President? What will happen with the Supreme Court, with the Paris climate agreement, with the nuclear treaty with Iran? It can't happen here, eh?
Yesterday was the regular six-week visit to see Dr. Hashmi. The cancer center was quite crowded and rather depressing. Nothing much had changed. Although I still have constant pain somewhat managed by the morphine and/or Percocet, his tack this visit was, "It's not ideal, but it's working." Yes, the treatment for six years of kidney cancer has been keeping everything stable. I wouldn't mind something a bit closer to the ideal--a little less pain, a few fewer grunts as I stand or sit. I think I'll have to continue, however, with the present regimen.
Sunday, October 30, 2016
a Leonard Cohen excerpt
from "Anthem"
Ring the bells that still can ring
Forget your perfect offering
There is a crack in everything
That's how the light gets in.
Ring the bells that still can ring
Forget your perfect offering
There is a crack in everything
That's how the light gets in.
Saturday, October 29, 2016
10//30/16 (expanded)
A whole month of silence--mainly because everything has remained pretty much the same. The nausea comes and goes; the diarrhea comes and goes. Some days I have an appetite; others the look or smell of food is nauseating. Meanwhile, various parts of body scream out in pain, though there isn't any clear-cut pattern, and what hurts one day or refuses to function, is back in service the next. There haven't been any appointments with the doctor, and there aren't any scheduled till the 9th of November.
Today--and most of the week--my appetite has been virtually nil, a fact that scares Mohamed, who continues to do more for me than anyone could expect. Today the part of my body that isn't functioning is a muscle (I hope) on the right side of my lower back. I'm not twisting the night away.
My old friend from graduate school, Darrell, and his wife, Joanne, live in the Pacific Northwest and took pity on me, sending a couple of dozen of oysters, which always give me an appetite. Oysters are best when raw, of course, but given my compromised immune system, that's not a great idea, so we just steam them in some wine and shallots, and when they open, I start eating before Mohamed can keep up.
Have we ever been so eager (and anxious) to get an election over? It's partly that every time we think we have some breathing room, something new is divulged about Hillary. And it's also because there's been not a moment of pleasure in the course of the campaign. In Kansas, there is very little television advertising, since the Republicans are pretty much shoo-ins for most offices. The really scary advertising concerns the Kansas Supreme Court, which has been the bête noir of Governor Brownback, especially concerning his constant attempts to cut the budget for education. Most of the justices, left over from the Democrat Kathleen Sebelius and moderate Republican Bill Graves, refuse to cooperate with Brownback's shameful cuts. Now there is a much-played ad implying, falsely, that the five justices who are up for retention have taken the side of murderers and rapists in overturning their convictions. The Supreme Court is the last line of defense against Brownback's power grab and it would be a disaster if these five are turned out of office.
Today--and most of the week--my appetite has been virtually nil, a fact that scares Mohamed, who continues to do more for me than anyone could expect. Today the part of my body that isn't functioning is a muscle (I hope) on the right side of my lower back. I'm not twisting the night away.
My old friend from graduate school, Darrell, and his wife, Joanne, live in the Pacific Northwest and took pity on me, sending a couple of dozen of oysters, which always give me an appetite. Oysters are best when raw, of course, but given my compromised immune system, that's not a great idea, so we just steam them in some wine and shallots, and when they open, I start eating before Mohamed can keep up.
Have we ever been so eager (and anxious) to get an election over? It's partly that every time we think we have some breathing room, something new is divulged about Hillary. And it's also because there's been not a moment of pleasure in the course of the campaign. In Kansas, there is very little television advertising, since the Republicans are pretty much shoo-ins for most offices. The really scary advertising concerns the Kansas Supreme Court, which has been the bête noir of Governor Brownback, especially concerning his constant attempts to cut the budget for education. Most of the justices, left over from the Democrat Kathleen Sebelius and moderate Republican Bill Graves, refuse to cooperate with Brownback's shameful cuts. Now there is a much-played ad implying, falsely, that the five justices who are up for retention have taken the side of murderers and rapists in overturning their convictions. The Supreme Court is the last line of defense against Brownback's power grab and it would be a disaster if these five are turned out of office.
Thursday, September 29, 2016
9/29/16
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.
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.
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.
Saturday, August 13, 2016
to the cancer center and back again
Wednesday we had an extra appointment with Dr. Hashmi just to check how I was progressing with
G-I issues. With a new, more aggressive approach to nausea, that problem has almost entirely disappeared. And my appetite has also returned, so just put food in front of me, and it's likely to disappear. After over five years on Votrient, by the third week of each schedule, diarrhea is likely to have returned as a problem. On the other hand, since I'm taking an opioid for pain, I also can suffer from constipation, leading to a strange (im)balance of the routine and the meds needed to deal with it. All seemed to be on schedule at this visit, so we decided to scale back gradually and see if the progress can continue with fewer meds.
In October it will be six years that I've lived with stage four kidney cancer. Given the unexpected extra five years beyond the normal prognosis, the fact that I can take the chemo orally, and the presence of Mohamed in my life, I know that I am very lucky and should have nothing to complain about. Still, there is much diminished about our lives, especially the inability to travel, which was always a big part of my life. And then there is the fact that sometimes it feels like there's just one damned thing after (or on top of) another. We felt good leaving the oncologist's office. But by Thursday night, my left scapula (the first place on my body that I became aware of the cancer all those years ago) caused great pain every time I moved or twisted or coughed. Sleeping was impossible at first, but after an extra Percocet, I finally did fall asleep.
So yesterday it was back to the cancer center. Dr. Hashmi is at KU Med on Fridays, so we saw his nurse, whom we like a lot. One possibility is a fracture of some sort of the scapula, perhaps still weakened from the radiation five years ago. I got squeezed in just before closing time for four x-rays of my left scapula and shoulder. I'm waiting for results, and I'll update the blog as soon as they come in. Or perhaps we'll need to do further CT scans to see whether new tumors have developed. That scenario would probably lead to more rounds of radiation. One damned thing after another...
G-I issues. With a new, more aggressive approach to nausea, that problem has almost entirely disappeared. And my appetite has also returned, so just put food in front of me, and it's likely to disappear. After over five years on Votrient, by the third week of each schedule, diarrhea is likely to have returned as a problem. On the other hand, since I'm taking an opioid for pain, I also can suffer from constipation, leading to a strange (im)balance of the routine and the meds needed to deal with it. All seemed to be on schedule at this visit, so we decided to scale back gradually and see if the progress can continue with fewer meds.
In October it will be six years that I've lived with stage four kidney cancer. Given the unexpected extra five years beyond the normal prognosis, the fact that I can take the chemo orally, and the presence of Mohamed in my life, I know that I am very lucky and should have nothing to complain about. Still, there is much diminished about our lives, especially the inability to travel, which was always a big part of my life. And then there is the fact that sometimes it feels like there's just one damned thing after (or on top of) another. We felt good leaving the oncologist's office. But by Thursday night, my left scapula (the first place on my body that I became aware of the cancer all those years ago) caused great pain every time I moved or twisted or coughed. Sleeping was impossible at first, but after an extra Percocet, I finally did fall asleep.
So yesterday it was back to the cancer center. Dr. Hashmi is at KU Med on Fridays, so we saw his nurse, whom we like a lot. One possibility is a fracture of some sort of the scapula, perhaps still weakened from the radiation five years ago. I got squeezed in just before closing time for four x-rays of my left scapula and shoulder. I'm waiting for results, and I'll update the blog as soon as they come in. Or perhaps we'll need to do further CT scans to see whether new tumors have developed. That scenario would probably lead to more rounds of radiation. One damned thing after another...
Tuesday, August 2, 2016
7/2/2016
There's really nothing major to report, but perhaps an update is in order before the next appointment with Dr. Hashmi on August 10.
After 2 MRIs, a CT scan, and x-rays, nothing anomalous showed up with the hip and femur. That's a relief in that nothing has deteriorated in the five plus years since the surgery and implant. The lack of results, of course, doesn't explain why my leg seized up so painfully, but it's much better now with generally good mobility.
My appetite is much improved. We're going to continue with a rather aggressive regiment of appetite-enhancers and anti-nausea medicine until the 10th and then decide whether we can cut back while preserving the gains.
There was a slight setback over the weekend when I developed a sore throat and cough that interfered with sleeping through the night. Since I already have frequent fatigue and crash at least twice a day, further exhaustion wasn't exactly welcome. After some OTC treatments, my throat and cough feel better this morning.
And so that's how it's been going during this very hot Kansas summer. Donald has, of course, provided a lot of fear and loathing.
After 2 MRIs, a CT scan, and x-rays, nothing anomalous showed up with the hip and femur. That's a relief in that nothing has deteriorated in the five plus years since the surgery and implant. The lack of results, of course, doesn't explain why my leg seized up so painfully, but it's much better now with generally good mobility.
My appetite is much improved. We're going to continue with a rather aggressive regiment of appetite-enhancers and anti-nausea medicine until the 10th and then decide whether we can cut back while preserving the gains.
There was a slight setback over the weekend when I developed a sore throat and cough that interfered with sleeping through the night. Since I already have frequent fatigue and crash at least twice a day, further exhaustion wasn't exactly welcome. After some OTC treatments, my throat and cough feel better this morning.
And so that's how it's been going during this very hot Kansas summer. Donald has, of course, provided a lot of fear and loathing.
Tuesday, July 19, 2016
MRI update
Yesterday Dr. Hashmi's nurse called with the results of Friday's MRI. Everything appeared to be normal with no problems having developed over the past five plus years since the hip/femur replacement. That's obviously good news. It does mean that we don't know what's causing the pain or what caused the immobility of the right leg. Perhaps I'll start some physical therapy to increase the flexibility. Or perhaps I'll just think of starting some physical therapy and investigate mind-body connection without bodily involvement.
Sunday, July 17, 2016
and now for something completely different
A campaign oddity that suddenly came to mind as I woke up this morning: Remember earlier in the campaign when Donald Trump would suddenly stop his ranting to say that he had a meaningful poem he needed to read? He'd unfold his sheaf of papers and very unpoetically plod through something called "The Snake." What he thought it meant (Never trust anyone not named Trump?) he never said. Once the poem was read, he'd go on to other things. Still, whether Christian or Freudian or just curious, one might find the meaning of a poem called "The Snake" probably fraught, vexed, and imbricated.
I danced many times to Johnny Rivers singing "The Snake" and perhaps, Donald, its meaning may be clarified. For your enjoyment:
Saturday, July 16, 2016
le seize juillet
I was going to blog on le quatorze juillet (the French do not call their national day Bastille Day), celebrating the 227th anniversary of la belle France and the 71st anniversary of yours truly, plus discussing the results of that day's consultation with Dr. Hashmi. But the massacre in Nice hadn't been in the plans.
We met with Dr. Hashmi on Thursday morning. The last visit, a couple of weeks earlier, had been quite long; for the first time, this one felt rushed. Much had improved since the last time. Staying on a regular anti-nausea regimen had made a huge difference, and, with the unforeseen exception of yesterday morning, nausea had almost completely disappeared. So, too, with a regular schedule of taking appetite-inducing syrup (ugh!), my appetite has improved enormously. We also discovered that the supposed 17-pound weight loss of the previous visit was the result of a faulty scale. While I had lost some weight, it was nowhere near that amount--not had I put it all back on in two weeks as the scale indicated on Thursday. That was a relief, though perhaps they should recalibrate the scale. So in terms of G-I problems, life is much improved from two weeks ago. To prove it, my long-time friend and colleague, Virginia, continued the nearly 40 year tradition of taking me out for a birthday dinner, and I ate calamari, a salad, saumon poché, mashed potatoes, and a Napoleon.
My right leg is much more flexible than it was a month ago, but is still painful. We couldn't discuss that with Dr. Hashmi on Thursday because the MRI had been postponed till Friday. Because of the stent in my heart, I can't use an open-sided MRI. I'd had four or five MRIs before the one a month ago at the emergency room. The first ones hadn't bothered me, but the last one made me quite claustrophobic. I was fully enclosed, it was hot, and it lasted an hour. I wasn't looking forward to the one yesterday, but the hospital used a different machine, and it was quite easy. Usually, both MRIs and CT scans are done with and without contrast, but the tech said that the pictures were so clear yesterday that we could skip the contrast. Now it's a matter of waiting for the results. On the one hand, I'd like them to discover the cause of the pains and inflexibility in my right leg; on the other, I don't really want them to discover that something is wrong.
Now it's time to get a haircut. It's been a rather busy week, starting with a bath called the "Furminator" for Kimber. We got two estimates for replacing part of the driveway, or at least the estimates will be in the mail within a couple of days. I got a Salvatore Ferragamo braided leather bracelet in "Dutch Blue" as my birthday present to go with the brown one I'd gotten a coupe of years ago. My birthday present to myself is a new turntable. The old one had worked perfectly well for forty years, and then a couple of years ago, it gave up the ghosts of 45 and 33 1/3 rpms. I've got about 400 33s, classic and classic rock. My sole 45 is a record made by Mel Brooks's son Eddie and his wife Susan, who many years ago used to be my neighbors.
I'll update the blog as soon as I get the results of the MRI.
We met with Dr. Hashmi on Thursday morning. The last visit, a couple of weeks earlier, had been quite long; for the first time, this one felt rushed. Much had improved since the last time. Staying on a regular anti-nausea regimen had made a huge difference, and, with the unforeseen exception of yesterday morning, nausea had almost completely disappeared. So, too, with a regular schedule of taking appetite-inducing syrup (ugh!), my appetite has improved enormously. We also discovered that the supposed 17-pound weight loss of the previous visit was the result of a faulty scale. While I had lost some weight, it was nowhere near that amount--not had I put it all back on in two weeks as the scale indicated on Thursday. That was a relief, though perhaps they should recalibrate the scale. So in terms of G-I problems, life is much improved from two weeks ago. To prove it, my long-time friend and colleague, Virginia, continued the nearly 40 year tradition of taking me out for a birthday dinner, and I ate calamari, a salad, saumon poché, mashed potatoes, and a Napoleon.
My right leg is much more flexible than it was a month ago, but is still painful. We couldn't discuss that with Dr. Hashmi on Thursday because the MRI had been postponed till Friday. Because of the stent in my heart, I can't use an open-sided MRI. I'd had four or five MRIs before the one a month ago at the emergency room. The first ones hadn't bothered me, but the last one made me quite claustrophobic. I was fully enclosed, it was hot, and it lasted an hour. I wasn't looking forward to the one yesterday, but the hospital used a different machine, and it was quite easy. Usually, both MRIs and CT scans are done with and without contrast, but the tech said that the pictures were so clear yesterday that we could skip the contrast. Now it's a matter of waiting for the results. On the one hand, I'd like them to discover the cause of the pains and inflexibility in my right leg; on the other, I don't really want them to discover that something is wrong.
Now it's time to get a haircut. It's been a rather busy week, starting with a bath called the "Furminator" for Kimber. We got two estimates for replacing part of the driveway, or at least the estimates will be in the mail within a couple of days. I got a Salvatore Ferragamo braided leather bracelet in "Dutch Blue" as my birthday present to go with the brown one I'd gotten a coupe of years ago. My birthday present to myself is a new turntable. The old one had worked perfectly well for forty years, and then a couple of years ago, it gave up the ghosts of 45 and 33 1/3 rpms. I've got about 400 33s, classic and classic rock. My sole 45 is a record made by Mel Brooks's son Eddie and his wife Susan, who many years ago used to be my neighbors.
I'll update the blog as soon as I get the results of the MRI.
Saturday, July 9, 2016
Make America Again
Let America Be America Again
Let America be America again. Let it be the dream it used to be. Let it be the pioneer on the plain Seeking a home where he himself is free. (America never was America to me.) Let America be the dream the dreamers dreamed— Let it be that great strong land of love Where never kings connive nor tyrants scheme That any man be crushed by one above. (It never was America to me.) O, let my land be a land where Liberty Is crowned with no false patriotic wreath, But opportunity is real, and life is free, Equality is in the air we breathe. (There’s never been equality for me, Nor freedom in this “homeland of the free.”) Say, who are you that mumbles in the dark? And who are you that draws your veil across the stars? I am the poor white, fooled and pushed apart, I am the Negro bearing slavery’s scars. I am the red man driven from the land, I am the immigrant clutching the hope I seek— And finding only the same old stupid plan Of dog eat dog, of mighty crush the weak. I am the young man, full of strength and hope, Tangled in that ancient endless chain Of profit, power, gain, of grab the land! Of grab the gold! Of grab the ways of satisfying need! Of work the men! Of take the pay! Of owning everything for one’s own greed! I am the farmer, bondsman to the soil. I am the worker sold to the machine. I am the Negro, servant to you all. I am the people, humble, hungry, mean— Hungry yet today despite the dream. Beaten yet today—O, Pioneers! I am the man who never got ahead, The poorest worker bartered through the years. Yet I’m the one who dreamt our basic dream In the Old World while still a serf of kings, Who dreamt a dream so strong, so brave, so true, That even yet its mighty daring sings In every brick and stone, in every furrow turned That’s made America the land it has become. O, I’m the man who sailed those early seas In search of what I meant to be my home— For I’m the one who left dark Ireland’s shore, And Poland’s plain, and England’s grassy lea, And torn from Black Africa’s strand I came To build a “homeland of the free.” The free? Who said the free? Not me? Surely not me? The millions on relief today? The millions shot down when we strike? The millions who have nothing for our pay? For all the dreams we’ve dreamed And all the songs we’ve sung And all the hopes we’ve held And all the flags we’ve hung, The millions who have nothing for our pay— Except the dream that’s almost dead today. O, let America be America again— The land that never has been yet— And yet must be—the land where every man is free. The land that’s mine—the poor man’s, Indian’s, Negro’s, ME— Who made America, Whose sweat and blood, whose faith and pain, Whose hand at the foundry, whose plow in the rain, Must bring back our mighty dream again. Sure, call me any ugly name you choose— The steel of freedom does not stain. From those who live like leeches on the people’s lives, We must take back our land again, America! O, yes, I say it plain, America never was America to me, And yet I swear this oath— America will be! Out of the rack and ruin of our gangster death, The rape and rot of graft, and stealth, and lies, We, the people, must redeem The land, the mines, the plants, the rivers. The mountains and the endless plain— All, all the stretch of these great green states— And make America again!
From The Collected Poems of Langston Hughes, published by Alfred A. Knopf, Inc. Copyright © 1994 the Estate of Langston Hughes. Used with permission.
From The Collected Poems of Langston Hughes, published by Alfred A.
Friday, July 1, 2016
7/1/16
We spent much of yesterday afternoon at the cancer center here in Topeka. Although we had good experiences at KU Med, I must say, said Ed Grimley, that now that we've been having many more visits and tests, it has been good to have the care that much closer.
Although this was the regularly scheduled three-month visit after CT scans, also on the agenda had been the problems of mobility and pain in my right leg (and now my left shoulder as well). But since the MRI scan had been postponed because the stent in my heart was incompatible with the open-sided MRI machine, that discussion was postponed. In the meantime, I'm taking time-released morphine twice a day to control the pain.
Added to the consult were the problems I've been having with diarrhea, nausea, and loss of appetite. I was worried about the CT scans, as it seemed to me that either there would be news to account for these symptoms, but in that case the news would be bad, or there wouldn't be any news, in which case we'd have to continue juggling all the variables that the disease and the multiple medications involve. The good news is that the CT scans were all normal; nothing had changed with the primary tumor, and there was no new growth of the tumors on my spine. The bad news had come earlier in the consult: that I had lost 17 pounds in the two or three weeks since my last weigh-in. Especially the last week, even the thought of food nauseated me. Even when food looks good, after a bite or two, I've been unable to continue--at the best.
One of the possibilities, of course, is that after five years I can no longer tolerate the level of chemo, but we had taken two weeks off and the symptoms had only gotten worse, so for the moment that has fallen to the bottom of the list. Another is that I have had gall stones for some time, and perhaps they have attached to and inflamed the lining of the gall bladder. Another is gastric ulcers. A long shot possibility--luckily--is that the cancer has metastasized to the brain, but there are no symptoms specific to brain cancer. In tracing the chronology of this, Mohamed brought up that it occurred at the same time I had a persistent cough, which had led to headaches, which had led to my giving up smoking but substituting vaping. Dr. Hashmi lit up with that one, since he feels that vaping is potentially as bad as smoking and that we have no ideas what chemicals are in the vaping liquid.
Originally, he was going to schedule an appointment with a surgeon specializing in gall bladder surgery, but he decided instead that I'll take two different anti-nausea medications regularly as opposed to as needed. I'll stay on the morphine until I've had the MRI (July 15th) and another consultation with Dr. Hashmi. I'll continue to take a combo of two anti-diarrheal meds. Add to all of these, the chemo, the anti-hypertension meds, and who can remember what else, and my innards are a veritable pharmacopeia.
After the consultation, I spent the next hour getting a saline IV to help ward off dehydration and exhaustion. I also got the bone-strengthening shot. While I was getting the drip, another patient sat down next to me and explained his cancer condition. And he listened while I explained mine. And then he said, "How has all this impacted your Christian faith." I replied--tactfully, I thought--that I'm not a Christian. This was incomprehensible to him. He had absolutely no response until I was getting up to leave. Then he asked me for my name so he could put me on his church's prayer list. I was tactful once more.
Although this was the regularly scheduled three-month visit after CT scans, also on the agenda had been the problems of mobility and pain in my right leg (and now my left shoulder as well). But since the MRI scan had been postponed because the stent in my heart was incompatible with the open-sided MRI machine, that discussion was postponed. In the meantime, I'm taking time-released morphine twice a day to control the pain.
Added to the consult were the problems I've been having with diarrhea, nausea, and loss of appetite. I was worried about the CT scans, as it seemed to me that either there would be news to account for these symptoms, but in that case the news would be bad, or there wouldn't be any news, in which case we'd have to continue juggling all the variables that the disease and the multiple medications involve. The good news is that the CT scans were all normal; nothing had changed with the primary tumor, and there was no new growth of the tumors on my spine. The bad news had come earlier in the consult: that I had lost 17 pounds in the two or three weeks since my last weigh-in. Especially the last week, even the thought of food nauseated me. Even when food looks good, after a bite or two, I've been unable to continue--at the best.
One of the possibilities, of course, is that after five years I can no longer tolerate the level of chemo, but we had taken two weeks off and the symptoms had only gotten worse, so for the moment that has fallen to the bottom of the list. Another is that I have had gall stones for some time, and perhaps they have attached to and inflamed the lining of the gall bladder. Another is gastric ulcers. A long shot possibility--luckily--is that the cancer has metastasized to the brain, but there are no symptoms specific to brain cancer. In tracing the chronology of this, Mohamed brought up that it occurred at the same time I had a persistent cough, which had led to headaches, which had led to my giving up smoking but substituting vaping. Dr. Hashmi lit up with that one, since he feels that vaping is potentially as bad as smoking and that we have no ideas what chemicals are in the vaping liquid.
Originally, he was going to schedule an appointment with a surgeon specializing in gall bladder surgery, but he decided instead that I'll take two different anti-nausea medications regularly as opposed to as needed. I'll stay on the morphine until I've had the MRI (July 15th) and another consultation with Dr. Hashmi. I'll continue to take a combo of two anti-diarrheal meds. Add to all of these, the chemo, the anti-hypertension meds, and who can remember what else, and my innards are a veritable pharmacopeia.
After the consultation, I spent the next hour getting a saline IV to help ward off dehydration and exhaustion. I also got the bone-strengthening shot. While I was getting the drip, another patient sat down next to me and explained his cancer condition. And he listened while I explained mine. And then he said, "How has all this impacted your Christian faith." I replied--tactfully, I thought--that I'm not a Christian. This was incomprehensible to him. He had absolutely no response until I was getting up to leave. Then he asked me for my name so he could put me on his church's prayer list. I was tactful once more.
Saturday, June 25, 2016
6/25/16
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.
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.
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.
Friday, May 20, 2016
5/20/16
Yesterday's scheduled visit to the cancer center was the second in a week. About two weeks ago, I developed a tight, dry cough. I'd have 10- to 15-minute spasms during the night that woke me (and Mohamed) and that, day or night, led to terrible headaches. Last Friday morning I called Dr. Hashmi's nurse. She called back at 3:45 and asked that I come in for blood work and lung x-rays. Luckily, we were already in the car; a trip to Starbuck's was diverted, and we arrived at the cancer center before the labs closed at 4:15. The techs weren't pleased that it had taken the nurse so long to call me back and try to schedule something, but I was rushed for the tests and made it on time. The cancer center was dark inside, and the weather outside was dark as well with rain and hail.
Although the tests got done and the techs said that the results would be read within 30 minutes, no one called back on that Friday afternoon. By the next day, however, the results were posted on Mychart, a feature that the center here uses much more efficiently than KU Med did. The lung results were good with no anomalies, as was the blood work.
Yesterday we met with Dr. Hashmi about the cough, the headaches, and a lowered but still persistent level of nausea. He prescribed a cough suppressant with codeine. I took it before bed last night, but still had a bout of coughing. I went downstairs at 6 this morning and took another dose. That seems to have calmed the coughing, though it's made me both tired and spacy. I guess that's to be expected with codeine. I'm torn between taking it again during the day, hoping that the cough will stay suppressed but risking a day of incoherence, and just waiting till tonight before bed. Dr. Hashmi also changed the anti-nausea medication, so I hope the new one will be more effective.
And that's the latest in the world of Howard's health.
Although the tests got done and the techs said that the results would be read within 30 minutes, no one called back on that Friday afternoon. By the next day, however, the results were posted on Mychart, a feature that the center here uses much more efficiently than KU Med did. The lung results were good with no anomalies, as was the blood work.
Yesterday we met with Dr. Hashmi about the cough, the headaches, and a lowered but still persistent level of nausea. He prescribed a cough suppressant with codeine. I took it before bed last night, but still had a bout of coughing. I went downstairs at 6 this morning and took another dose. That seems to have calmed the coughing, though it's made me both tired and spacy. I guess that's to be expected with codeine. I'm torn between taking it again during the day, hoping that the cough will stay suppressed but risking a day of incoherence, and just waiting till tonight before bed. Dr. Hashmi also changed the anti-nausea medication, so I hope the new one will be more effective.
And that's the latest in the world of Howard's health.
Thursday, May 5, 2016
5/5/16
Yesterday was the tenth and last radiation treatment. Even though the treatments themselves aren't difficult, it's good to have them over--and even better to have a significant reduction in back pain. Unlike the earlier three rounds, this time there were more pronounced side effects, especially nausea, diarrhea, and loss of appetite. Since the area of the spine being treated is behind the intestines, the radiologist predicted that these symptoms would be worse than before as some of the radiation would inadvertently reach my innards. Tuesday was particularly bad, and even yesterday I was unable to eat lunch. Now we'll hope that the pain doesn't return. We see the oncologist two weeks from today, but that's just for blood work and a consultation. Six weeks after that, I'll have CT scans again to see whether any other trouble spots have developed.
Yesterday afternoon a friend and ex-colleague came over for a nice visit. She had written the first draft of a novel about her two years in the Peace Corps in Niger, and I had been one of her editing readers. In the evening, we took my long-time friend, colleague, and co-writer, Virginia, out to a birthday dinner with her sister and brother-in-law. I made up for my lunch-time fasting by eating calamari, a salad, and poached salmon--my biggest meal in a long time.
Socializing is always good, but by 10:15 I had suddenly run out of energy and barely made my way to bed.
Yesterday afternoon a friend and ex-colleague came over for a nice visit. She had written the first draft of a novel about her two years in the Peace Corps in Niger, and I had been one of her editing readers. In the evening, we took my long-time friend, colleague, and co-writer, Virginia, out to a birthday dinner with her sister and brother-in-law. I made up for my lunch-time fasting by eating calamari, a salad, and poached salmon--my biggest meal in a long time.
Socializing is always good, but by 10:15 I had suddenly run out of energy and barely made my way to bed.
Saturday, April 23, 2016
4/23/2016
Just a brief update: Thursday morning, the day after our consultation with the radiologist, the cancer center called and asked whether I'd like to begin radiation immediately. So Thursday afternoon I had the first session; Friday I had the second. I get the weekend off; then I'll have five more next week and three more on the M-W of the following week. The treatments go quickly. I settle in, machines whirr and mechanical arms move, and then two times I hear the distinctive buzz of the radiation. I did notice that this time the actual radiation lasts longer than it did the previous times on my upper spine. I made a rather dismissive comment on their failure to ask me whether I wanted the x's that mark the spots to be radiated tattooed on my body, and, to my surprise, they said that almost 50% of the patients go with tattoos, especially people who will have many treatments. One of the technicians particularly singled out those with prostate cancer who may undergo nearly 40 sessions. I refrained from asking where the tattoos actually went in those cases.
Meanwhile, good news from the vet: the tumor on Kimber's neck was a benign fatty one. She'll have her stitches (on her abdomen) and staples (on her neck) removed on Friday, and then she should be back to normal.
Meanwhile, good news from the vet: the tumor on Kimber's neck was a benign fatty one. She'll have her stitches (on her abdomen) and staples (on her neck) removed on Friday, and then she should be back to normal.
Thursday, April 21, 2016
4-20
Yesterday was our consultation with Dr. Greene, our radiologist at Stormont-Vail cancer center here in Topeka. There was some confusion about the time--one time given over the phone, another on MyChart--but we got right in. Dr. Greene showed us the scan, which showed a larger than I had expected tumor on vertebra L[umbar]-5. There were also small spots on two adjacent vertebrae. We agreed that I should start round four of ten radiation treatments. (Two had taken place in 2011 on my femur and on my scapula; another was a few months ago on a spot higher on the spine.) The decision didn't seem to be a very difficult one since in the past I have tolerated radiation rather well, I've been suffering from strong lower-back pains, and the past treatments have been effective. I'll start on either Friday or Monday. The most likely side effect, since this part of the spinal column is just behind the intestines, is digestive problems.
The consult was followed by a simulation where they scan the area and put long-lasting marks on my torso to indicate exactly where the radiation will go. They've stopped asking whether I want these x's to be tattooed.
On the day before (Tuesday), Kimber had gone under the knife. She has had a large fatty tumor under her abdomen, one we had been "waiting and watching" to see what developed. But recently it seemed to have gotten considerably larger. When we took her in for an exam, the vet noticed another growth on her right muzzle/neck. She's always had extra fur there, belying my attempts to make her almost entirely a German shepherd. Because we see her every day, we hadn't really noticed that this growth too was enlarged. The vet spotted it immediately and was more worried about that, fearing it might be lymphocytic cancer. So Tuesday both growths were removed. The one under her belly was even bigger than it appeared, weighing in at two pounds, but certainly just fatty. The one on her neck was more complicated to remove, entangled as it was with nerves and muscles. The vet is almost sure that it too is just a fatty tumor, but it's been sent off to the veterinary school at K-State to be biopsied.
Kimber was completely out of it Tuesday evening. Getting her into the car was the first major ordeal. Once home, she had no idea where she was or who we were, but instead of collapsing into sleep, she spent the next four hours pacing. She'd walk into a corner and then be unable to figure out how to get out. Although we were worried about her and tried to get her to lie down, she was also driving us nuts with four hours of her nails clicking against hardwood. She finally collapsed. She's better now, and rather pleased that in order to get her to swallow her pills, we've begun feeding her canned dog food.
Poor Mohamed now has two sickies to take care of. But he's hanging tough.
The consult was followed by a simulation where they scan the area and put long-lasting marks on my torso to indicate exactly where the radiation will go. They've stopped asking whether I want these x's to be tattooed.
On the day before (Tuesday), Kimber had gone under the knife. She has had a large fatty tumor under her abdomen, one we had been "waiting and watching" to see what developed. But recently it seemed to have gotten considerably larger. When we took her in for an exam, the vet noticed another growth on her right muzzle/neck. She's always had extra fur there, belying my attempts to make her almost entirely a German shepherd. Because we see her every day, we hadn't really noticed that this growth too was enlarged. The vet spotted it immediately and was more worried about that, fearing it might be lymphocytic cancer. So Tuesday both growths were removed. The one under her belly was even bigger than it appeared, weighing in at two pounds, but certainly just fatty. The one on her neck was more complicated to remove, entangled as it was with nerves and muscles. The vet is almost sure that it too is just a fatty tumor, but it's been sent off to the veterinary school at K-State to be biopsied.
Kimber was completely out of it Tuesday evening. Getting her into the car was the first major ordeal. Once home, she had no idea where she was or who we were, but instead of collapsing into sleep, she spent the next four hours pacing. She'd walk into a corner and then be unable to figure out how to get out. Although we were worried about her and tried to get her to lie down, she was also driving us nuts with four hours of her nails clicking against hardwood. She finally collapsed. She's better now, and rather pleased that in order to get her to swallow her pills, we've begun feeding her canned dog food.
Poor Mohamed now has two sickies to take care of. But he's hanging tough.
Saturday, April 9, 2016
Update
Dr. Green, the radiologist, who, we were told, would be out of town for the next two weeks, will be gone for only one. We have scheduled an appointment with him for April 20 to discuss whether to proceed with radiation on the lower spinal tumor. It's a relief both that Dr. Green's office took the initiative to get back to us so quickly and that we won't have to wait for so long to discuss our options.
Thursday, April 7, 2016
4/7/16
It was back to the cancer center here in Topeka today to get the results of the CT scan I had two weeks ago. While I was checking in here, the lab called me for the blood draw. Although the phlebotomist juggled and almost dropped the filled vials, all that went smoothly.
Next, after a wait, it was time for the consultation with Dr. Hashmi. The analyst from KU Med, where the results had been sent but had not yet been posted, called immediately. I could overhear just a few words, "has progressed" being the most common--not the words I wanted to hear, though I didn't have any context. Dr. Hashmi relayed the results: the primary tumor in the left kidney has not grown at all; there is a tumor near the kidney, however, that has grown, though not dramatically; but there is also a tumor on the spine (not the same one as before, but L[umbar]-4, which has increased from 40mm to 48mm. This is on the lower spine, and I have been having lower back pains lately. On the plus side, the tumor seems to be growing away from, not toward, the actual spinal cord. The question is whether to wait and watch or to start another round of radiation treatment. Dr. Green, my radiologist, will be out of town for the next two weeks, so we'll wait for that long to see whether further symptoms develop and then consult with Dr. Green about the possibility of another sequence of radiation. Since I've supported radiation three times before--initially on my hip/femur and on my scapula and more recently on my spine--without bad side effects, I'm inclined personally to go ahead with them. But I realize that radiation isn't without consequences, so if they're unnecessary, there's no reason to begin them. We like and trust Dr. Green, so we will consider his opinion.
The day ended with the Xgeva shot, which is the extremely expensive bone-strengthening injection. That went more quickly than at KU Med.
And then it was home and directly to bed for a long nap.
Next, after a wait, it was time for the consultation with Dr. Hashmi. The analyst from KU Med, where the results had been sent but had not yet been posted, called immediately. I could overhear just a few words, "has progressed" being the most common--not the words I wanted to hear, though I didn't have any context. Dr. Hashmi relayed the results: the primary tumor in the left kidney has not grown at all; there is a tumor near the kidney, however, that has grown, though not dramatically; but there is also a tumor on the spine (not the same one as before, but L[umbar]-4, which has increased from 40mm to 48mm. This is on the lower spine, and I have been having lower back pains lately. On the plus side, the tumor seems to be growing away from, not toward, the actual spinal cord. The question is whether to wait and watch or to start another round of radiation treatment. Dr. Green, my radiologist, will be out of town for the next two weeks, so we'll wait for that long to see whether further symptoms develop and then consult with Dr. Green about the possibility of another sequence of radiation. Since I've supported radiation three times before--initially on my hip/femur and on my scapula and more recently on my spine--without bad side effects, I'm inclined personally to go ahead with them. But I realize that radiation isn't without consequences, so if they're unnecessary, there's no reason to begin them. We like and trust Dr. Green, so we will consider his opinion.
The day ended with the Xgeva shot, which is the extremely expensive bone-strengthening injection. That went more quickly than at KU Med.
And then it was home and directly to bed for a long nap.
Tuesday, March 22, 2016
3/22/16
Yesterday, Mohamed and I went to Stormont-Vail hospital here in Topeka for CT scans. As at KU Med, the S-V cancer center is separate from the main hospital complex. Unlike at KU Med, where all the tests take place in one building, here the scans are at the main hospital.
After check-in, we were led to the waiting room for the scans, and I was given two large glasses of water to drink. Here, the water was flavored with Crystal Lite, which was tastier than just the plain water at KU. Mohamed nudged me to look at the couple seated across from us. The woman was wearing a large Trump button. A couple of weeks ago, were at the car wash, and a man was strutting around with a gun in a holster. (Kansas now has both open and concealed carry.) And later, I heard a woman say that she never left home without a gun in her purse. I wondered whether this woman was packing and was unhappy to see my Arab-looking Arab husband. Instead, she was quite friendly and struck up a conversation with us. It didn't take her long to call attention to her Trump button. She likes him, she said, because he's "ornery" just like her. She didn't really seem too impressed with his toughness, though, asking us whether we'd noticed how scared and shaken he was when the man tried to rush the stage in Florida. Luckily, her husband, "a medical miracle," returned from his scans before we could delve more deeply into Trump's character.
My turn came, and I had to explain my medical history to both the nurse who inserted the port that would introduce the contrast for the scan and to the one who administered the scan. The latter was quite incredulous that I was still alive. I must have good support, she said (true), and a good attitude. She asked how I liked Dr. Hashmi, and when I said quite well, she said that a lot of patients didn't like him because he was too direct and didn't sugar-coat things. The CT machine was newer and sleeker than the one at KU Med, though it didn't have the cute icons of an orange head with bloated cheeks for when I was to hold my breath and a green one when I could breathe again.
Unless the results are posted online on MyChart, we won't know them until April 7, when we have our next consultation with Dr. Hashmi. At KU, everything took place on one day--tests and results.
Since I hadn't been able to eat before the scans, we went out for lunch, and then, as always, even though there was nothing difficult about the test, I came home and crashed for over two hours.
After check-in, we were led to the waiting room for the scans, and I was given two large glasses of water to drink. Here, the water was flavored with Crystal Lite, which was tastier than just the plain water at KU. Mohamed nudged me to look at the couple seated across from us. The woman was wearing a large Trump button. A couple of weeks ago, were at the car wash, and a man was strutting around with a gun in a holster. (Kansas now has both open and concealed carry.) And later, I heard a woman say that she never left home without a gun in her purse. I wondered whether this woman was packing and was unhappy to see my Arab-looking Arab husband. Instead, she was quite friendly and struck up a conversation with us. It didn't take her long to call attention to her Trump button. She likes him, she said, because he's "ornery" just like her. She didn't really seem too impressed with his toughness, though, asking us whether we'd noticed how scared and shaken he was when the man tried to rush the stage in Florida. Luckily, her husband, "a medical miracle," returned from his scans before we could delve more deeply into Trump's character.
My turn came, and I had to explain my medical history to both the nurse who inserted the port that would introduce the contrast for the scan and to the one who administered the scan. The latter was quite incredulous that I was still alive. I must have good support, she said (true), and a good attitude. She asked how I liked Dr. Hashmi, and when I said quite well, she said that a lot of patients didn't like him because he was too direct and didn't sugar-coat things. The CT machine was newer and sleeker than the one at KU Med, though it didn't have the cute icons of an orange head with bloated cheeks for when I was to hold my breath and a green one when I could breathe again.
Unless the results are posted online on MyChart, we won't know them until April 7, when we have our next consultation with Dr. Hashmi. At KU, everything took place on one day--tests and results.
Since I hadn't been able to eat before the scans, we went out for lunch, and then, as always, even though there was nothing difficult about the test, I came home and crashed for over two hours.
Saturday, February 27, 2016
2/27/16
Thursday was our first day of having tests and the consultation at the Cancer Center here in Topeka. It's about a 20-minute drive from our house, so shifting to Topeka cuts an hour each way from our itinerary. After all the years of going to Kansas City where we knew exactly where each test was given and how the routine unfolded--several rooms on three different floors--we had to learn the new pattern. The check-in for all procedures takes place in one room, a lovely, large atrium. I was called immediately for the blood work, and then after a brief wait, we saw Dr. Hashmi. All the results were in the normal range, even the red blood cell level and the Vitamin D, both of which have sometimes been below where they should be. So we'll stay on the same regimen with the next visit scheduled for six weeks from now. The CT scans, however, will take place a few days earlier at Stormont-Vail hospital with which the cancer center is affiliated.
The import of the visit was almost overshadowed when, the night before at about 10, we noticed that the house was feeling quite chilly. A little investigation revealed that the furnace had gone out. We got out a 40-year old electric blanket (twenty years younger than the electric heating pad that I sometimes, rather fearfully, drag out). Three quarters of the blanket still worked. The next day, after our return from the cancer center, the heating guy came. He said that it wasn't the furnace, but rather the breaker panel, which was so old that parts weren't available and would need to be replaced. The good news was that we were having warmer than normal temperatures, though still below freezing at night; the bad news was that they wouldn't be able to install the new panel until Monday. Off we went to Lowe's to buy a space heater, which didn't really seem to do much good. Friday, however, the electrician from the heating company called to say that he thought he could solve the problem. He arrived a little later, said that the breaker box, despite being the original one from when the house was built in 1968, was still good. He went off to get a new breaker to replace the one that controlled the furnace, returned in 30 minutes, and voilà the furnace roared back to life. So as I write this Saturday morning, we are back to normal, not bundled up huddled close to a space heater.
On other fronts, as I may have said, Mohamed has had his green card for two years. The first two years, though granting the privileges of work and travel, are "conditional," and after that time, one must apply for "removal of conditions." The point is to guarantee that green cards issued through marriage to a citizen have not been based on marriages of convenience. I had misread the instructions and thought that the new application should be submitted at least 90 days before the expiration of the old card. It didn't seem logical that the deadline was any time within the 90 days before the expiration since that wouldn't give the government sufficient time to evaluate the material before the green card expired. What happens, however, is that the materials are due in the 90 days before expiration, following which the CIS issues an automatic one-year extension. The next step occurs on March 7 when Mohamed goes to KC for biometrics, i.e., fingerprinting and eye scans. After that, if we're lucky, another interview will be waived, and the green card will be made permanent. There shouldn't be any reason for another interview, since the marriage is obviously a real one, but with the current anti-immigration and anti-Muslim sentiments, who knows?
Adventures in wildlife: a few months ago, we began hearing a gnawing sound from under the back deck. It's possible, as has happened before, for small animals to get under the deck. Rabbits frequently take refuge there from Kimber's now rather half-hearted attempts to capture them. Several years ago, I caught a rather nasty looking possum, which I named Flavio, and released him farther out in the country. This time, we finally went to the Department of Wildlife and borrowed a no-kill trap. After a couple of fruitless nights, Flavio, Jr., went for the bait (roast beef wrapped around some hummus, in case he was an ethnic type). We put the rather sweet possum in the car and released him at a state park. But then the gnawing returned. Flavio III? Mrs. Flavio? The question was answered when Mohamed took a load of laundry to the basement and discovered a giant dead rat that had gnawed its way into the basement and plummeted (conveniently) into a dustpan. Whether it died from the fall or from all the undigested wood and concrete is unknown. In either case, there are more pleasant experiences than finding a rat the size of a squirrel dead in your cellar.
The import of the visit was almost overshadowed when, the night before at about 10, we noticed that the house was feeling quite chilly. A little investigation revealed that the furnace had gone out. We got out a 40-year old electric blanket (twenty years younger than the electric heating pad that I sometimes, rather fearfully, drag out). Three quarters of the blanket still worked. The next day, after our return from the cancer center, the heating guy came. He said that it wasn't the furnace, but rather the breaker panel, which was so old that parts weren't available and would need to be replaced. The good news was that we were having warmer than normal temperatures, though still below freezing at night; the bad news was that they wouldn't be able to install the new panel until Monday. Off we went to Lowe's to buy a space heater, which didn't really seem to do much good. Friday, however, the electrician from the heating company called to say that he thought he could solve the problem. He arrived a little later, said that the breaker box, despite being the original one from when the house was built in 1968, was still good. He went off to get a new breaker to replace the one that controlled the furnace, returned in 30 minutes, and voilà the furnace roared back to life. So as I write this Saturday morning, we are back to normal, not bundled up huddled close to a space heater.
On other fronts, as I may have said, Mohamed has had his green card for two years. The first two years, though granting the privileges of work and travel, are "conditional," and after that time, one must apply for "removal of conditions." The point is to guarantee that green cards issued through marriage to a citizen have not been based on marriages of convenience. I had misread the instructions and thought that the new application should be submitted at least 90 days before the expiration of the old card. It didn't seem logical that the deadline was any time within the 90 days before the expiration since that wouldn't give the government sufficient time to evaluate the material before the green card expired. What happens, however, is that the materials are due in the 90 days before expiration, following which the CIS issues an automatic one-year extension. The next step occurs on March 7 when Mohamed goes to KC for biometrics, i.e., fingerprinting and eye scans. After that, if we're lucky, another interview will be waived, and the green card will be made permanent. There shouldn't be any reason for another interview, since the marriage is obviously a real one, but with the current anti-immigration and anti-Muslim sentiments, who knows?
Adventures in wildlife: a few months ago, we began hearing a gnawing sound from under the back deck. It's possible, as has happened before, for small animals to get under the deck. Rabbits frequently take refuge there from Kimber's now rather half-hearted attempts to capture them. Several years ago, I caught a rather nasty looking possum, which I named Flavio, and released him farther out in the country. This time, we finally went to the Department of Wildlife and borrowed a no-kill trap. After a couple of fruitless nights, Flavio, Jr., went for the bait (roast beef wrapped around some hummus, in case he was an ethnic type). We put the rather sweet possum in the car and released him at a state park. But then the gnawing returned. Flavio III? Mrs. Flavio? The question was answered when Mohamed took a load of laundry to the basement and discovered a giant dead rat that had gnawed its way into the basement and plummeted (conveniently) into a dustpan. Whether it died from the fall or from all the undigested wood and concrete is unknown. In either case, there are more pleasant experiences than finding a rat the size of a squirrel dead in your cellar.
Saturday, January 16, 2016
Yesterday (Friday, Jan. 15) was presumably our last visit to the KU Cancer Center in KC. The waiting rooms were all very crowded. While we were waiting for the scans--luckily for a short time--a woman across the room began a conversation with me. She was accompanied by a man who seemed to be wearing the gaudiest, most mismatched plaid pajamas imaginable. "Do you have cancer? she asked, as if I might be there on a field trip. She went on to describe her sister's death in somewhat gruesome detail. And then she, now joined by her companion, launched into a praise-the-Lord-with-whom-all-things-can-be-cured rant . I was tempted so ask where He was when her sister died, but bit my tongue. I was called for my tests before I said anything untoward.
They did the blood draws, leaving an IV port in my arm for introduction of the contrast during the CT scans. And then I sat for about half an hour in the least comfortable part of the Center, drinking my two huge glasses of water. The scans were quickly done. I don't have to undress for these, just pull my pants down around my ankles, a process a little more complicated since I was wearing suspenders under my shirt.
Next we went up one floor to meet with the new oncologist, Dr. Hashmi. The waiting room was exceptionally packed, but we were called immediately, and after the taking of vitals, Dr. Hashmi arrived with no wait at all. He was fully informed about my case and already had some of the results. We liked the thoroughness with which he discussed what was happening and future options. The blood work was all within the normal range. The tumor on my spine, which had been radiated two months ago, had not grown, so evidently the radiation worked. There were two growths on the adrenal glands just above my left (cancerous) kidney that had grown somewhat, but not enough for immediate action. One new development was that if/when the Votrient stops being effective, there is a new class of drugs that have recently been developed and which would be the new next step of choice. (One of these is Opdivo, which I've seen advertised on TV for a specific type of lung cancer, but which also works on kidney cancer.) For the moment, though, we'll continue with the current regimen.
We had a reunion with Jennifer, the Physician Assistant to Dr. Van and someone whom we like a lot, and then a consultation with Kathy, Dr. Hamshi's rather hyperactive P.A. From now on we'll see Dr. Hashmi at a local hospital. That arrangement is obviously more convenient than having to drive to KC for each test or appointment, but it is also encouraging to know that our oncologist is affiliated with KU Med.
I can't eat before CT scans, so we met our friend TJ at a nearby breakfast and lunch restaurant, where I wolfed down eggs benedict Florentine, and we all chattered away. For some reason, despite not having had my morning nap, I still had energy. Indeed, I stayed awake the whole drive back to Topeka, though then I fell soundly asleep for two hours.
They did the blood draws, leaving an IV port in my arm for introduction of the contrast during the CT scans. And then I sat for about half an hour in the least comfortable part of the Center, drinking my two huge glasses of water. The scans were quickly done. I don't have to undress for these, just pull my pants down around my ankles, a process a little more complicated since I was wearing suspenders under my shirt.
Next we went up one floor to meet with the new oncologist, Dr. Hashmi. The waiting room was exceptionally packed, but we were called immediately, and after the taking of vitals, Dr. Hashmi arrived with no wait at all. He was fully informed about my case and already had some of the results. We liked the thoroughness with which he discussed what was happening and future options. The blood work was all within the normal range. The tumor on my spine, which had been radiated two months ago, had not grown, so evidently the radiation worked. There were two growths on the adrenal glands just above my left (cancerous) kidney that had grown somewhat, but not enough for immediate action. One new development was that if/when the Votrient stops being effective, there is a new class of drugs that have recently been developed and which would be the new next step of choice. (One of these is Opdivo, which I've seen advertised on TV for a specific type of lung cancer, but which also works on kidney cancer.) For the moment, though, we'll continue with the current regimen.
We had a reunion with Jennifer, the Physician Assistant to Dr. Van and someone whom we like a lot, and then a consultation with Kathy, Dr. Hamshi's rather hyperactive P.A. From now on we'll see Dr. Hashmi at a local hospital. That arrangement is obviously more convenient than having to drive to KC for each test or appointment, but it is also encouraging to know that our oncologist is affiliated with KU Med.
I can't eat before CT scans, so we met our friend TJ at a nearby breakfast and lunch restaurant, where I wolfed down eggs benedict Florentine, and we all chattered away. For some reason, despite not having had my morning nap, I still had energy. Indeed, I stayed awake the whole drive back to Topeka, though then I fell soundly asleep for two hours.
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