Eighteen months since diagnosis, hangin' in there. To celebrate each six months I take little jars of jam in to the oncologist, nurses and staff at the cancer center to thank them for their part in keeping me going so smoothly. Virtual jars of jam to all of you, as well, for your support.
Today is "chemofunk" day, during which I feel as though I might be coming down with the flu. It's turning out to be very predictable: the evening of the day I have chemo, almost precisely at 8:30, I suddenly fade, begin to have head- and body-aches and exhaustion. The next day the aches and pains continue, along with exhaustion that can be enough to leave me just lying on the couch doing nothing. And by evening, I'm fine.
People have asked me about nausea. Very little, and no vomiting, nothing like all those scare stories out of the 70's and 80's. However, it seems that I'm going to have to give up french fries, for a while at least. They don't set so well.
On the other hand, isn't it great to live in a world in which coffee, tea, red wine, chocolate, garlic, fresh fruits and vegetables, and candied ginger are all considered healthy! I had dinner with a chiropractor the other evening who tried to persuade me that none of the above except garlic, fruits and vegetables are actually good for you. He said that all the testing on the rest was done by the big corporations, and therefore couldn't be trusted. He sounded like a spoilsport to me. To his wife, too. She took some ham.
I wish you all a happy, healthy next eighteen months.
Tuesday, August 25, 2009
Monday, August 24, 2009
Water water everywhere
The pump was going on at odd times, so we finally called in the well people, the ones who fixed the pump last year. It turns out we had a leak in the pipe to the house, not in what was fixed before, therefore not covered by any kind of warranty. The workers did their thing, we paid enough for both of them to take a nice little vacation, and the pump no longer goes on when it shouldn't.
The other two results are that our water has been the color of Earl Grey tea for the past week and we have this standpipe in our front yard. It has to stick up to grade apparently. Jerry's told me twice what it's supposed to do, but somehow the information hasn't stuck.
It opens up all kinds of possibilities. We started with the idea of planting a bush in front of it to hide it. I saw a beautiful Rose of Sharon the other day that would look nice. Or we could balance a pot on top with some kind of drooping foliage and flowers; not so good if we get high winds.
On the other hand, maybe we don't want to hide it. Jerry could probably take some wire and turn it into a miniature version of a cell phone tower, the ones that are supposed to look like trees but never quite do. Or (and this was my brilliant idea), we upend a bathtub behind it, stick a L'eggs container on top, paint the pipe pale blue, and have our very own Our Lady of the Bathtub in the front yard.
Thursday, August 20, 2009
My teeth are clean
However, getting your teeth cleaned when you're on chemo isn't as simple as making the appointment and then dragging yourself in to see the dental hygienist. First you have to make sure that it's safe.
It all comes back to blood counts. A side effect of Gemcitabine is lowered red and white blood counts. The former could lead to increased bleeding and the latter to a chance of infection, so before any dental work I have to get my blood drawn and tested.
I had my regular chemo session on Tuesday so I went in early to get the blood work for both that and the teeth cleaning.
Unfortunately, my levels were low. I protested that I was willing to take the chance, that the levels weren't really that low, that my gums don't usually bleed, and that it's hard to reschedule an appointment at the dentist. The nurses insisted on calling the oncologist, who eventually decided that I could go ahead with both the cleaning and the afternoon's chemo.
My teeth are in good shape.
Monday, August 17, 2009
Alternatives and complements
Melody's comments meant a lot to me. I certainly wish her husband's uncle the best as he and the family struggle with this.
I was also interested in her suggestion for other treatment, which I'll definitely look into, but it got me thinking about the various kinds of complementary treatments I've tried over the years through both bouts of cancer.
I do not do alternative treatments, but I am interested to try most complementary types. "Alternative" generally means something in place of standard treatments, and I have no doubts that surgery/chemotherapy/radiation is the best way to go, so far, for cancer treatment. "Complementary" just adds something to the standard stuff -- in my mind a complementary treatment probably hasn't been thoroughly studied because it won't bring in any money to the health-care industry.
That doesn't mean that there aren't things we can do to back up the usual treatments. Here are what I've tried:
-- supplements, some of which, like fish oil for appetite, are recommended. Some, like curcumin, though they're considered a bit weird, are actually being studied at well-respected cancer centers. Others, like Black Seed Oil, have only anecdotal evidence to back them up.
-- body work. I've been reiki-ed and massaged (I prefer the latter). I do yoga, but since I have for 35 years I can't really count it as a complementary therapy for cancer.
-- the same with meditation.
-- I've been rolled with magnets.
-- I've used mushrooms: Reishi, in the form of capsules which a Thai friend gave me, Shitaki from the supermarket, and Hen of the Woods, from the woods. I also eat Trumpets of Doom, not because anyone says they're good for cancer, but because they taste good and the name is cool.
I don't do coffee enemas or anything else gross.
If you hear of any other complementary therapy, especially if it's cheap and sounds like fun, let me know.
I was also interested in her suggestion for other treatment, which I'll definitely look into, but it got me thinking about the various kinds of complementary treatments I've tried over the years through both bouts of cancer.
I do not do alternative treatments, but I am interested to try most complementary types. "Alternative" generally means something in place of standard treatments, and I have no doubts that surgery/chemotherapy/radiation is the best way to go, so far, for cancer treatment. "Complementary" just adds something to the standard stuff -- in my mind a complementary treatment probably hasn't been thoroughly studied because it won't bring in any money to the health-care industry.
That doesn't mean that there aren't things we can do to back up the usual treatments. Here are what I've tried:
-- supplements, some of which, like fish oil for appetite, are recommended. Some, like curcumin, though they're considered a bit weird, are actually being studied at well-respected cancer centers. Others, like Black Seed Oil, have only anecdotal evidence to back them up.
-- body work. I've been reiki-ed and massaged (I prefer the latter). I do yoga, but since I have for 35 years I can't really count it as a complementary therapy for cancer.
-- the same with meditation.
-- I've been rolled with magnets.
-- I've used mushrooms: Reishi, in the form of capsules which a Thai friend gave me, Shitaki from the supermarket, and Hen of the Woods, from the woods. I also eat Trumpets of Doom, not because anyone says they're good for cancer, but because they taste good and the name is cool.
I don't do coffee enemas or anything else gross.
If you hear of any other complementary therapy, especially if it's cheap and sounds like fun, let me know.
Thursday, August 13, 2009
Not totally great news -- CA19-9 is up
It could be a lot worse.
My CA19-9 tumor marker is up to 180; last month it was 85, the month before 83. Dr. Nickerson wants me to have another CAT scan at the beginning of September to try and get some idea of what's going on. Obviously, I'm not happy about this.
For a while the numbers were down to the low 30's, ie normal. The highest was at the beginning of all this, when it got up to about 350. The range is from 0, which is unusual, to somewhere in the thousands, depending on the particular test. One statistic that I read was that 65% of the patients in a particular study had levels above 200. I haven't been able to find out just how high it can go, but it's clear that even my earlier 350 was fairly low. 180 is minimal -- except that it's the direction and the rate of change that are the true markers.
However, the CA19-9 doesn't even tell exactly what is going on. It can be knocked higher by infections or another disease, and some people don't even show any results at all. This is part of the reason it can't be used as a test for pancreatic cancer. The other is that if you're one of the people who does show the marker, and if you don't have any other condition, the CA19-9 only starts to rise when the cancer is advanced. We still need a simple blood test that will a)show whether a particular person has even the early stages of pancreatic cancer and b)accurately track what's happening once a diagnosis has been made.
I've had a couple of things going on that might be reasons for the marker numbers to rise. Inflammation from the ulcer could have affected it, and my off-and-on chemo sessions of the past few weeks might have messed things up. I avoid thinking about the alternative, though of course it's in the back of my mind.
Meanwhile, I feel very well. Chemo Monday didn't give me any side effects to speak of, my weight is stable, my appetite and ability to enjoy food are unchanged, and (except for the damned marker) life is good.
My CA19-9 tumor marker is up to 180; last month it was 85, the month before 83. Dr. Nickerson wants me to have another CAT scan at the beginning of September to try and get some idea of what's going on. Obviously, I'm not happy about this.
For a while the numbers were down to the low 30's, ie normal. The highest was at the beginning of all this, when it got up to about 350. The range is from 0, which is unusual, to somewhere in the thousands, depending on the particular test. One statistic that I read was that 65% of the patients in a particular study had levels above 200. I haven't been able to find out just how high it can go, but it's clear that even my earlier 350 was fairly low. 180 is minimal -- except that it's the direction and the rate of change that are the true markers.
However, the CA19-9 doesn't even tell exactly what is going on. It can be knocked higher by infections or another disease, and some people don't even show any results at all. This is part of the reason it can't be used as a test for pancreatic cancer. The other is that if you're one of the people who does show the marker, and if you don't have any other condition, the CA19-9 only starts to rise when the cancer is advanced. We still need a simple blood test that will a)show whether a particular person has even the early stages of pancreatic cancer and b)accurately track what's happening once a diagnosis has been made.
I've had a couple of things going on that might be reasons for the marker numbers to rise. Inflammation from the ulcer could have affected it, and my off-and-on chemo sessions of the past few weeks might have messed things up. I avoid thinking about the alternative, though of course it's in the back of my mind.
Meanwhile, I feel very well. Chemo Monday didn't give me any side effects to speak of, my weight is stable, my appetite and ability to enjoy food are unchanged, and (except for the damned marker) life is good.
Monday, August 10, 2009
Miles slept over
And it may have been the first time that 24 whole hours went by without his being photographed. We were too busy going to Stone Pond, playing Legos, reading books, and eating to take pictures. Miles is a total delight. I remember when Max was an infant I hated our being around other mothers and babies, because I knew they'd realize how much more wonderful he was than their inferior offspring and would feel terrible. I have something of the same feeling now with my grandson. Yes, to other grandmas, your kids are cute, but mine is incomparable!
He picked and arranged the flowers above, choosing with great concentration and identifying as many as he could. When we were talking about the trip to Utah, he mentioned the playground at Russ and Rita's house, and the party at Mary and Howard's where the kids all played in the wading pool and ran around, but the first thing he said was, "I remember the flower garden at the place where we stayed." Maybe in a few years we can send him out to apprentice with Lonna.
As I said, he's a joy to have around.... But I am thirty years older than I was thirty years ago. We went to bed early last night.
Tuesday, August 4, 2009
EUS today
That is, an endoscopic ultrasound to see whether the meds I've been taking have affected the ulcer.
We (and the Dartmouth-Hitchcock Med Center/Keene) have this all down to a science. I was in and out in two hours, with the procedure itself taking less than ten minutes. The rest of the time was prep and recovery. The oncology nurses had told me to get as hydrated as possible so putting in the IV wouldn't be so difficult, but the OR nurse was annoyed that I'd finished my coffee at 7:15 when the instructions had clearly said 7:00 at the latest (two hours of empty stomach needed). In any case, my veins cooperated, and the anaesthesiologist didn't seem upset, because he started knocking me out before 9:00.
Good stuff, too. I was out like a light, and came to without grogginess, though I seem to have given Jerry quite a lecture on the three ways to knit sleeves in the round and why Magic Loop and four needles isn't as good as two circs. He didn't seem too disturbed by this.
Dr. Krishna says the ulcer has shrunk to 1/4 its original size. Yay! and double yay! that I can discontinue the pill that I was supposed to take four times a day and kept forgetting. I'm just on the other one, twice a day, and I can manage that.
So good news all around -- except that when I asked Jerry about my babbling about sleeves, he said, "You were very clear. There are three ways to knit sleeves: one has a very long needle, one has a lot of little needles, and if they don't work you send the sleeves off for your daughter to finish."
Was that what I said? I must have been groggier than I thought.
We (and the Dartmouth-Hitchcock Med Center/Keene) have this all down to a science. I was in and out in two hours, with the procedure itself taking less than ten minutes. The rest of the time was prep and recovery. The oncology nurses had told me to get as hydrated as possible so putting in the IV wouldn't be so difficult, but the OR nurse was annoyed that I'd finished my coffee at 7:15 when the instructions had clearly said 7:00 at the latest (two hours of empty stomach needed). In any case, my veins cooperated, and the anaesthesiologist didn't seem upset, because he started knocking me out before 9:00.
Good stuff, too. I was out like a light, and came to without grogginess, though I seem to have given Jerry quite a lecture on the three ways to knit sleeves in the round and why Magic Loop and four needles isn't as good as two circs. He didn't seem too disturbed by this.
Dr. Krishna says the ulcer has shrunk to 1/4 its original size. Yay! and double yay! that I can discontinue the pill that I was supposed to take four times a day and kept forgetting. I'm just on the other one, twice a day, and I can manage that.
So good news all around -- except that when I asked Jerry about my babbling about sleeves, he said, "You were very clear. There are three ways to knit sleeves: one has a very long needle, one has a lot of little needles, and if they don't work you send the sleeves off for your daughter to finish."
Was that what I said? I must have been groggier than I thought.
Saturday, August 1, 2009
Vacation from cancer
Any time we get away it's a vacation from cancer. If it had turned out that I couldn't get along with my in-laws, or that Jerry was allergic to hot, dry weather (you can see I'm stretching for the impossible in both cases) it still would have been worth going, just to be away from this reality for a bit.
Don't get me wrong. The nurses and staff at the Kingsbury Cancer Center are warm, professional, and fun to hang out with, but that doesn't change the fact that they are punching holes in people in order to fill the people with poisonous substances that make them feel worse than the disease does. Jerry does his best to make the chemo sessions as tolerable as possible. (Sometimes I even win the Scrabble game, with the nurses and some of my fellow patients cheering me on. Jerry feels like The Viper in a World Wrestling Entertainment match, except that nothing about our Scrabble games is staged.)
But the fact remains that we know the next day I'll feel exhausted and generally low, and that the cancer is still there, lurking.
I bless my sister-in-law for saying at the end of the Utah visit, "None of us wanted to talk about the elephant in the living room, but you know we love and pray for you." I bless everyone for giving us this extra vacation from thinking about it.
It's given us both renewed strength to go on dealing with the cancer.
Don't get me wrong. The nurses and staff at the Kingsbury Cancer Center are warm, professional, and fun to hang out with, but that doesn't change the fact that they are punching holes in people in order to fill the people with poisonous substances that make them feel worse than the disease does. Jerry does his best to make the chemo sessions as tolerable as possible. (Sometimes I even win the Scrabble game, with the nurses and some of my fellow patients cheering me on. Jerry feels like The Viper in a World Wrestling Entertainment match, except that nothing about our Scrabble games is staged.)
But the fact remains that we know the next day I'll feel exhausted and generally low, and that the cancer is still there, lurking.
I bless my sister-in-law for saying at the end of the Utah visit, "None of us wanted to talk about the elephant in the living room, but you know we love and pray for you." I bless everyone for giving us this extra vacation from thinking about it.
It's given us both renewed strength to go on dealing with the cancer.
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