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.
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