Saturday, March 29, 2008

Just the facts

So if the symptoms from the disease and/or the chemotherapy are nausea, loss of appetite and wasting of the tissues (cachexia, which, by the way, would be a great Scrabble play), what’s the solution? Part of the IV cocktail which chemo patients receive is an anti-nausea drug, and other such drugs in tablet form are prescribed for at-home use. For example, I have a prescription for Prochlorperazine, which seems to work, though it leaves me feeling dizzy, sleepy, and unable to operate heavy machinery. It does nothing for the loss of appetite.

Another possibility is marijuana. The medical authorities seem to agree that pot helps stop nausea and jumpstart the appetite, though if you Google “medical marijuana” or “marijuana and chemotherapy” you’ll find two worlds out there. One is reminiscent of the 60’s, where enough weed will alleviate every symptom, maybe even be a cure, and if it doesn’t work will really jazz up the funeral.
The other is much more solemn. Marijuana, its leaders point out, has side effects. I found the same sentence in two reports, including this from the National Cancer Institute :

Dronabinol [one of the active ingredients] often causes a "high" (loss of control or sensation of unreality), which is associated with its effectiveness; however, this sensation may be unpleasant for some individuals.

Do not operate heavy machinery.

And, of course, it’s illegal: in 2007 the NH legislature defeated a bill to allow medical use of marijuana. This year, on March 18, the NH House voted to eliminate jail time for people possessing small amounts of marijuana. The Senate has not yet begun to discuss the bill, but in any case Gov. Lynch has promised to veto the bill if it reaches his desk, so legally anyone found with a joint could get jail time. Maximum jail time in NH for possession of small amounts of marijuana is one year.

I know what I think about all this, but of course mine is not an unbiased opinion.

Friday, March 28, 2008

No wild parties for a bit

Got my blood drawn again this morning; my wbc (white blood count) is 1.89. As I said before, normal is 4.0-10.5. My platelets count is also low: 77, with normal 300 or so. These aren't unusual results, but just what happens. The trouble is that the nurse recommends that I avoid restaurants, crowds, or anyone who is sick or coming down with anything. Jerry and I went into negotiation mode. Does going to the Y count as crowds? The nurse shuddered at the thought of the germs people leave on the machines. I didn't mention having gone to the Y twice already this week or to Yoga last night, in a room most recently filled by a class of small boys. Hey, the restorative yoga and seeing friends again made up for any bacteria and viruses the kids might have left, right?
Then on the way home we discussed at length whether stopping for a bagel really counted as going to a restaurant. (We didn't stop.)
I don't get my blood checked again until Wednesday, so until then I'm at home. Thanks to those who have lent books and DVDs. With those and my knitting and sewing projects I don't think I'll get too bored.
Or I'll reread those really, really bad jokes!

Wednesday, March 26, 2008

It might as well be spring

This week is obviously the time to take my new port out on the road and see how it performs. No chemo, but on the off-weeks they take blood samples to make sure that the white blood count is high (normal is 4.0-10.5, though I have no idea what the quantities mean). Monday I went in for that, the port did its thing. Getting the blood was a relatively simple and painless process, at the end of which the nurse said with some embarrassment that because I was changing my chemo days from Wednesday to Monday, I shouldn't have had the blood drawn on Monday, but the full week after the chemo, i.e. on Wednesday.
So today I went in again for another drawing (and on to the Y afterwards, which shows you how well I'm feeling at the moment). When I got home Jerry said that the hospital had called, and my white blood count is so low that I'm in danger of infection. I'm to wash my hands a lot, avoid people with colds, call the hospital immediately if my temperature goes up -- and go in on Friday so they can take my blood again.
So it might as well be spring -- because I know just how a maple tree feels.

Tuesday, March 25, 2008

Holy Monday, Batman, I have stigmata

This side effect surprised even the oncologist. Late last week my back started itching, and when I asked Jerry if there was anything there, he said, "That's funny. You have a rash, but it's sort of a pattern." When I finally got the mirrors to work so that I could see it, I had to agree. The rash definitely wasn't random. It was almost symmetrical and itched its way across my upper back. I looked as though I were playing the lead in a low-budget production of Papillon.
We put ointment on it, but I had worse problems at that point (see yesterday's post), so left it until I went in yesterday for bloodwork. The nurse had never seen anything like it either, so she called in the doctor, who finally decided that when they put the port in they put an adhesive thingie (my term, not his) on my back to get rid of any static electricity. At the end of the procedure they ripped it off, and then the gencitabine the next day made my skin more sensitive and caused the reaction. A stronger ointment has helped, and I'm assured it will get better on its own in any case.
By the way, thanks to all for suggestions on appetite and elimination issues. You're much more helpful than the dietician I spoke with yesterday, though she had a couple of good ideas for upping the protein content of what I eat.

Monday, March 24, 2008

Digestive difficulties

This post is what the British call a whinge, which sounds even more petulant than a whine. But I have to admit, not everything is easy these days.
The problems run from my taste buds all the way down. One of the first, and sometimes only, symptoms of the cancer is weight loss. It feels almost un-American to lose weight without planning or trying, but since October I've lost nine pounds. I'm still within the normal range, and despite what the women's magazines say over and over again, losing those last few pounds does not automatically translate into happiness (or looking great in a bikini).
According to the oncologist, cancer cells tend to put out a protein which suppresses appetite. We could make a mint if we could separate the effect from the minor problem of its being attached to cancer. In any case, eating has gone from being a joy to a chore.
To add to this, chemo affects taste in odd ways. So far, I suddenly don't like shrimp, green olives, wine or coffee; the last is worst, because coffee is not just a beverage, but a social lubricant, a way of jump starting my brain, and a basic part of my identity. On the other hand, for the first time in years I'm drinking milk. A psychological retreat to childhood?
At the other end of the digestive tract is elimination. Or not, as the case may be. The nurses couldn't agree on whether the chemo would cause diarrhea or constipation. If they'd set up a pool, the ones who bet on constipation would have won big. Let me just say that I used to think that "shitting bricks" was a metaphor.

Sunday, March 23, 2008

I am so fortunate

I haven't been feeling my best the past couple days (more about that tomorrow), but I wanted to tell you all how blessed Jerry and I feel, thanks to you. Family and friends are definitely the best medicine.
I try not to name names here, partly to save your privacy and partly because I hate those blogs that say "And it was so good to see Suzi and Michelle and Irene, and thanks Josie for the wonderful bracelet", with all the names underlined so that you can go to their blogs. They always take me back to eighth grade and the cliques that the really popular girls were in.
But anyhow, you know who you are, and I know who most of you are. It is wonderful to get your messages and calls; to feel the power of your prayers, thoughts, and pixie dust; to read the bad jokes and links; and to see those of you who live close enough. Your support means more than I can say.

Friday, March 21, 2008

Back to normal life, I hope

In our Writers' Group the other night we talked a bit about how important it is to give the readers a rest between the exciting parts, just to catch their breath. I feel as though the next week or two will be that rest, though I'm almost superstitiously afraid to say so.
It's been almost exactly a month since the diagnosis, and in that time I've met with five doctors and a nurse, seen the dentist three times, had three major tests and two procedures. Next week, with just a check-in to get my blood tested, looks blessedly unmedical. I'm going to do things like see my grandson (and his parents), have dinner with friends, buy shoes, go to the library. Normal life.
Maybe even pilates, yoga, and band.
(Oh, yes, and who do you think won the Scrabble game? One of the wonderful things about Jerry is that when I very occasionally beat him at Scrabble, it's an honest win. And it tastes even better, because of it.)

Thursday, March 20, 2008

the grammar of chemo

The new chemo room: except for the roominess, the IV poles and the large size of the dusty mauve recliners, you get the feeling of being on a budget airline, with the nurses coming around to bring drinks and crackers, and nowhere to go for several hours.
Of course, the nurses also bring around various bags to hang on the IV. As my nurse hooked me up, she said, "This is a heavier than usual dose of Gemcitabine. Of course, you aren't on the protocol, but you're following it." Of course. As a trained foreign language person, I realized that we were in one of those Who's on First situations, and sure enough, it took several exchanges for her to make it clear that first, a protocol is a clinical trial, where they try out the newest drugs or regimens, second that I couldn't actually take part in the D-H's latest and best clinical trial because of my previous cancer, but third, I'm really on it because I'm getting the same treatment as the people they're counting, but I'm only following it because the researchers won't be able to use my results. It doesn't make a difference for me.
This is either a phase III or IV clinical trial, by the way, which means that they've established that the drug regimen is safe and at least as effective as what they have already. Phase III is when they check a relatively small group to see how much more effective, and phase IV is when the protocol is being sold and used and they're catching any problems in the larger population.
The drugs I'm getting right now are gemcitabine and taxotere; try and for info. Next chemo is on April 7.
We played Scrabble (ask me who won, ask me -- going out on a 7-letter word on a triple word score), and I knitted on a sock. Another advantage of the port is that I'm less likely to knit the IV tube into the pattern. We snacked and talked to a few people.
I slept most of the afternoon, felt a little queasy in the evening, took one of the pills, and wore my acupressure bands all night, but today I'm fine. It isn't exactly a walk in the park for either of us, but I don't feel like I'm trying to climb Everest, either.

Wednesday, March 19, 2008

Any port in a storm

Okay, I wasn't going to do another port reference, but with the weather forecast for today including sleet, freezing rain, rain, and snow, I couldn't resist. No more, I promise.
Yesterday we got to Short Stay Surgery at 8:30. The nurse, a breast cancer survivor, had a port herself. She showed it to me and answered my questions -- very positive and matter-of-fact, which gave me more confidence about the whole thing.
Since I expected to be in and out in a short time, I hadn't brought my knitting. You'd think I'd have learned by now. The patient before me had a glitch in the procedure, so I lay on the gurney for almost three hours. I read Martha Stewart Living and wondered how I'd feel if my biggest problem in life was finding beautiful pieces of beach glass for a unique and rustic mobile.
Once I got into surgery, things moved quickly and without problem. Jerry brought me home and made tortelini soup, my first food all day. He takes care of me and feeds me well. I can't imagine going through this without him.
I felt pretty good last evening, except for the hangover from the meds, the sore back from lying on the gurney all morning, and the distinct sensation that someone had thrown a softball and hit me somewhere between my collarbone and my right boob. Oh, yes, that was the other thing. Usually they put the port in on the left side, but because of my previous cancer they had to put it on the other side. So my port is to starboard. (I know I promised. I lied.)

Monday, March 17, 2008

Three things to do when you get the diagnosis

(That's after you panic and when you decide to deal with it):
  • Get a dentist appointment well before you start treatment. You don't want any infections sneaking in while your white blood count is out of whack. I was lucky that my dentist could fit me in for x-rays, check-up, and cleaning last week.
  • Plan a wonderful evening away from it all. Fortunately, our evening with my brother and sister-in-law had been set up long before, and it was so good to be back in the real world where incredible musicians play beautiful music (check out the Imani Winds for cutting-edge wind quintet music). Not to mention the great hospitality.
  • Set up massages.

All of these take care of medical, social/emotional, and physical/psychic health. Port goes in tomorrow morning, first chemo is at 8:30 Wednesday morning. Stay tuned for all the gory details.

Saturday, March 15, 2008

PET scan; not A, not B

A PET scan seems like the usual kind of test until they bring out the lead box containing a syringe that is itself encased in lead, and inject the contents of the syringe into the vein. It's like something out of an old movie ("You ssseee, Mister Bond, we have our waysss of getting information." Only Sean Connery could respond with the exact mix of horror and the appreciation that this is all much too over-the-top so it's all in good fun, really).
The scan was supposed to give us all the answers, but it turns out that nothing is that simple. Our appointment with the Keene radiologist was something of a bust, because he hadn't read the results, which weren't available yet anyhow and which, in any case, he isn't an expert in analyzing . He wasn't about to go out on a limb to tell us what it all meant, except that as far as he could see the lungs look clear. (Yes!)
On Monday we start bugging them again for more info, but meanwhile I realized that I've been looking at this wrong. It isn't a simple set of equations, with everything clear=Plan A=probable happy ending, vs. metasteses all over the place=Plan B= ride off into the sunset. I should be thinking of it as either a tree diagram or as plotting a novel. There are too many variables going off in too many directions, with too many possible new twists for anyone to be able to make any ultimate assumptions right now.
I've had so many tests, and I'm grateful for them. I think that they've mapped the critical area better than it's ever in human history been possible to. They'll know exactly what they're targeting, and I'll be getting state of the art treatment. But as the old saying goes, if you want guarantees, buy a washer.

.... All of that being said, I just got a call from the oncologist, who says that the PET scan came up generally clear except for the pancreas, and that they plan to stick with the original treatment protocol. So if I hadn't persuaded myself out of believing in Plan A or B, this would definitely be Plan A. Joy!

Wednesday, March 12, 2008

last time, sort of

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.

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.

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
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. 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?

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.