My Tuesdays are bracketed by pilates, in the morning, and Westmoreland Town Band rehearsals, in the evening, and yesterday was a kind of last time. No, I'm not getting morbid here; what I mean is that once I start treatment I know I won't have the stamina, energy or enthusiasm I have now. Not to mention breath support.
It's funny to get nostalgic early; I'll have plenty of time for it later, but during both the class and the rehearsal I found myself pulling away from what I was doing and going out of my way to appreciate it ("Oh, yes, I really appreciate this plank"). And, again, enjoy the people around me who make it worth while. I could do pilates or practice alone, after all, and I'm told that people actually do. But here I choose to spend time with people who may have noticed that I still can't do either a rollover or the melody in Friend Like Me. That's what I'll miss when I'm not up to joining the groups.
Wednesday, March 12, 2008
Tuesday, March 11, 2008
schedule as of now
When I was a kid, every year or two we had Home Leave between countries. My memories of those summers are a jumble of seeing friends and relatives, appointments with doctors, dentists and optometrists, and, of course, a trip to Filene's Basement. Everything had to be done as quickly as possible, in time for us to leave for whatever country was next, and somehow we always managed.
So here's what the schedule for the next week or so looks like, as of today:
March 11: EKG
March 13: dentist appointment, trip to Lebanon for the PET scan
March 14: radiology consultation
March 15: trip to Boston to visit Luther and Miriam (brother and sister-in-law) and hear the Imani Winds -- not related in any way to cancer. Just a good time.
March 18: the port is put in
March 19: first chemo.
No trip to Filene's Basement; but then, Filene's isn't what it used to be.
So here's what the schedule for the next week or so looks like, as of today:
March 11: EKG
March 13: dentist appointment, trip to Lebanon for the PET scan
March 14: radiology consultation
March 15: trip to Boston to visit Luther and Miriam (brother and sister-in-law) and hear the Imani Winds -- not related in any way to cancer. Just a good time.
March 18: the port is put in
March 19: first chemo.
No trip to Filene's Basement; but then, Filene's isn't what it used to be.
Sunday, March 9, 2008
Progress, maybe; logistics
D-H Keene is right on the ball. Thursday afternoon we met with the oncologist who took care of me last time around (strangely, he looks nine years older), and he will use the D-H Lebanon protocols, so we won't have to drive up to Lebanon for treatment. Assuming Plan A, this will involve three courses of chemo, one every two weeks, followed by lesser doses of chemo twice a week plus radiation every day for several weeks. Jerry and I went into overload at that point and can't remember just how long that will last. Then they'll do another test and decide if surgery will be an option.
Friday I met with the oncology nurse, also familiar from the last time, and she did What to Expect From Chemo, saying at intervals, "But you'll remember that side effect." Oh, yes.
Only new thing is that this time I'll have a port http://www.cancerbackup.org.uk/Treatments/Chemotherapy/Linesports/Implantableport
to be put in on the 18th. They're planning the first chemo on the 19th.
All of this treatment plan depends on the results of the as-yet-unscheduled PET scan, which despite suggestions from several friends, does not involve taking the cats up to Lebanon with us.
During the night my mind started riffing on the word “port”. There’s posh (port out, starboard home), Harry Potter’s port-key, prêt-a-porter, a nice glass of port or porter, and then suddenly bubbling up to the surface of my mind from French 201, this bit of Victor Hugo:
C’est le moment crépusculaire. J’admire, assis sous un portail,
Ce reste du jour, dont s’éclaire la derniere heure du travail.
(More or less: It is the twilight moment. I admire, sitting in a portal, this end of day, lighting up the last hour of work.) It came back to me in my own younger voice, declaiming it with rolled r’s and intense faked emotion. So why does something like that hide in my unconscious for forty-five years, when I blocked the other day on my social security number?
In the last few days especially I have appreciated the human contacts, seeing friends, getting phone calls and emails. I suddenly realize how much I've been taking so many wonderful people for granted.
Friday I met with the oncology nurse, also familiar from the last time, and she did What to Expect From Chemo, saying at intervals, "But you'll remember that side effect." Oh, yes.
Only new thing is that this time I'll have a port http://www.cancerbackup.org.uk/Treatments/Chemotherapy/Linesports/Implantableport
to be put in on the 18th. They're planning the first chemo on the 19th.
All of this treatment plan depends on the results of the as-yet-unscheduled PET scan, which despite suggestions from several friends, does not involve taking the cats up to Lebanon with us.
During the night my mind started riffing on the word “port”. There’s posh (port out, starboard home), Harry Potter’s port-key, prêt-a-porter, a nice glass of port or porter, and then suddenly bubbling up to the surface of my mind from French 201, this bit of Victor Hugo:
C’est le moment crépusculaire. J’admire, assis sous un portail,
Ce reste du jour, dont s’éclaire la derniere heure du travail.
(More or less: It is the twilight moment. I admire, sitting in a portal, this end of day, lighting up the last hour of work.) It came back to me in my own younger voice, declaiming it with rolled r’s and intense faked emotion. So why does something like that hide in my unconscious for forty-five years, when I blocked the other day on my social security number?
In the last few days especially I have appreciated the human contacts, seeing friends, getting phone calls and emails. I suddenly realize how much I've been taking so many wonderful people for granted.
Thursday, March 6, 2008
Yet again, more research is needed; maybe more info than you want
(First of all, note to knitters: it's really a bad idea to knit while you're in a car during pothole season. Trust me.)
We spent an hour and a half in the consultations with two oncologists, one an expert, one an expert-in-training. Good people, very clear in their explanations, and not over-inclined to sugar-coat the information. But what they want before continuing is yet another test, a PET scan. http://www.radiologyinfo.org/en/info.cfm?pg=PET&bhcp=1 is about as good an explanation as any. While the cancer seems to be limited to the pancreas/bile duct area, they want to make sure it hasn't invaded the upper abdomen.
Depending on the results, we go to either Plan A or Plan B. Plan A, probably all taking place in Keene, will probably involve a combination of two chemo drugs, Gencitabine and Taxotere for several weeks. (I had Taxotere last time around.) Then a combination of chemo plus radiation. Then, assuming that all this has worked, we go on to the surgery. I asked about Clinical Trials, since I was on one last time, but it seems that because I was on chemo before I'm not eligible. Pity. I would like to add to the sum total of human knowledge.
Plan B, if the cancer has metastesized into the upper abdomen, involves palliative care to keep quality of life as high as possible as long as possible.
Sorry. Today I'm having trouble with the positive spin.
And I have a question for you: if it's Plan B, do I post about it here? It puts a terrible burden on you. If we were Victorians, you could bring me calves' foot jelly and read me improving sermons; but modern Americans have no template for behavior in such a situation, and none of us know how to act or what to say. Let me know what you think.
We spent an hour and a half in the consultations with two oncologists, one an expert, one an expert-in-training. Good people, very clear in their explanations, and not over-inclined to sugar-coat the information. But what they want before continuing is yet another test, a PET scan. http://www.radiologyinfo.org/en/info.cfm?pg=PET&bhcp=1 is about as good an explanation as any. While the cancer seems to be limited to the pancreas/bile duct area, they want to make sure it hasn't invaded the upper abdomen.
Depending on the results, we go to either Plan A or Plan B. Plan A, probably all taking place in Keene, will probably involve a combination of two chemo drugs, Gencitabine and Taxotere for several weeks. (I had Taxotere last time around.) Then a combination of chemo plus radiation. Then, assuming that all this has worked, we go on to the surgery. I asked about Clinical Trials, since I was on one last time, but it seems that because I was on chemo before I'm not eligible. Pity. I would like to add to the sum total of human knowledge.
Plan B, if the cancer has metastesized into the upper abdomen, involves palliative care to keep quality of life as high as possible as long as possible.
Sorry. Today I'm having trouble with the positive spin.
And I have a question for you: if it's Plan B, do I post about it here? It puts a terrible burden on you. If we were Victorians, you could bring me calves' foot jelly and read me improving sermons; but modern Americans have no template for behavior in such a situation, and none of us know how to act or what to say. Let me know what you think.
Tuesday, March 4, 2008
Action, at last
Tomorrow (Wednesday) afternoon we head back up to Lebanon for a consult with the Chemo Guy, and we're set up at the moment with consults both in Lebanon (Monday) and Keene (Tuesday) with the Radiation Guys. The idea is that we'll probably go with Keene, but we want to think about it and gather some more information before we decide. I'll post again Thursday with an update.
Monday, March 3, 2008
Hey, I'm disabled
I went to the Social Security office today. When I'd signed up for Medicare (since I'm coming up on 65) they suggested that I go on Social Security as well. Jerry and I talked it over and decided I should, because waiting another year wouldn't make me that much money. Today the person interviewing me asked if I had any medical problems. Not sure what effect this all would have, I almost didn't tell her, but when I did, she said, "Good, you can go on disability." I filled out the forms, feeling like a fraud as I did so. I kept trying to explain to her that I feel fine now, and I don't want to take the government's money unless it's really honest to do so. She gave me funny looks and finally said, "We're going by our rules here, okay?"
So, thanks, everyone. It's Your Tax Dollars at Work. But wouldn't you rather give it to me than to Mr. Bush for another bomb?
So, thanks, everyone. It's Your Tax Dollars at Work. But wouldn't you rather give it to me than to Mr. Bush for another bomb?
Saturday, March 1, 2008
endoscopic ultrasound
Getting to Dartmouth-Hitchcock Lebanon takes about an hour and a half, a beautiful drive up the Connecticut River valley. Since my appointment was for 7:00 a.m. we missed the beauty, but I'm sure we'll have plenty of opportunity to appreciate it in the future.
The procedure went smoothly once they'd found my veins. Jerry and I talked with the doctor and got a handout including pictures of my ductwork. Think of photos of a tornado taken from above.
Basically, what Dr. Gordon said was that the esophagus, stomach, and duodenum were "endoscopically normal," but that there is a mass in the pancreatic neck. Further tissue samples were taken for more cytology. My case will be presented at the GI Tumor Board, and they'll consider "chemoradiotherapy to try and downstage the tumor for potential resection." Apparently it isn't clear whether this is a bile duct cancer involving the pancreas or a pancreatic cancer involving the bile duct; but the treatment options are the same in either case.
The Tumor Board meets on Tuesdays.
I slept all the way home and most of the afternoon, but feel fine today, and glad not to be going up to Lebanon through today's snowstorm.
I used to laugh at academic articles which always ended up "however, further research is needed to elucidate and validate these data." Now I feel like I'm living them.
The procedure went smoothly once they'd found my veins. Jerry and I talked with the doctor and got a handout including pictures of my ductwork. Think of photos of a tornado taken from above.
Basically, what Dr. Gordon said was that the esophagus, stomach, and duodenum were "endoscopically normal," but that there is a mass in the pancreatic neck. Further tissue samples were taken for more cytology. My case will be presented at the GI Tumor Board, and they'll consider "chemoradiotherapy to try and downstage the tumor for potential resection." Apparently it isn't clear whether this is a bile duct cancer involving the pancreas or a pancreatic cancer involving the bile duct; but the treatment options are the same in either case.
The Tumor Board meets on Tuesdays.
I slept all the way home and most of the afternoon, but feel fine today, and glad not to be going up to Lebanon through today's snowstorm.
I used to laugh at academic articles which always ended up "however, further research is needed to elucidate and validate these data." Now I feel like I'm living them.
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