Wednesday, October 31, 2012

Day 137 - journals and possible chemo brains

Today I spent as usual: weaving, napping, reading. Diane came over with a huge bowl of delicious spaghetti sauce and meatballs and a package of noodles. It turns out that both Ellie and I feel John is a good spaghetti sauce chef. I sat down and ate two delcious bowls right away. Ellie may have had three. That good cook gene has clearly been transmitted to the next generation.

Ellie's blanket is coming along nicely. I am not sure how much yardage is finished yet, but I've been working on it long enough to have a warp thread break so that's a while. It looks really good; I am very proud of it.

The dogs were very silly today. Kita went with Barbara and Maggie and the rest of the crew today and both dogs came back even more exhausted than usual. Kita, smaller by half, but dominant by full, got to sleep in Maggie's warm, soft doggie bed. Maggie slept in the kitchen where she could keep a half awake eye on the meatballs. Kate came by to say hi and it turns out that one of her dogs has bilateral trigeminal neuritis. Who knew? Sort of like dog Bell palsy. I am waiting for some one with cattle to tell me their cow has it too.

I am matching the dogs well and am pretty tired myself. I have runs of energy and then lie around doing nothing. I did walk downtown twice in search of the perfect get well present for Shelley which I ultimately found. It's nice to put my newly and dearly earned knowledge of being a patient to use.

This week's NEJM has two articles that are well worth most people's time. There is an excellent review of irritable bowel syndrome. It is really the best thing I have seen written on IBS anywhere, ever (granted, I am not up to date on the IBS literature). If you are even marginally interested in the syndrome, read the article.

The other article has been in the news a lot and is really interesting: "Patients' Expectations about Effect of Chemotherapy for Advanced Cancer." What the researchers did is ask a whole bunch of people with metastatic lung or colon cancer if they thought they chemo they had decided to take was very likely, somewhat likely, a little likely, not at all likely or unlikely to "cure" their cancer. Using the usual definition of "cure," in this case, the correct answer is "unlikely," and around 30% of patients with advanced lung cancer and 20% of patients with advanced colon cancer got it right. 25% of patients with advanced lung cancer and 35% of patients with advanced colon cancer thought palliative chemo was very likely to cure them with another 25 and 35% thinking "somewhat likely." There is a very nice editorial which lays everything out very nicely, but I think the whole question really boils down to "if you ask a dying person what they believe will be the outcome of a treatment they have already decided to take, what do you think they will say?"

I imagine that people would have reframed their expectations at that point and hope for a "cure," like "more time" or "the spots will get smaller for a while" and, of course, they believe that the chemo can deliver that "cure" to them (the rest of the statistics support that patients understand they can expect symptom relief and life extension from palliative chemo). OTOH, the editorialist points out that 25% of Medicare's spending is in the last year of life. If patients are accepting palliative chemo hoping for a chance at eradication without return, who would not accept it for life prolongation/symptom relief, this is a problem.

The authors reference a study showing that patients with advanced cancer would accept toxic treatment for even a 1% chance of cure but would be unwilling to accept the same treatment for a substantial increase in life expectancy without cure. When I read that, I tried to imagine how I would feel if I were in that study. It would depend on what "substantial increase in life expectancy" meant and if there were some other potentially better option I was giving up, but if "substantial increase" was substantial, I'm in. (Luckily, I have available and am getting treatment with a much better chance of a cure that is not toxic.) Of course, I'm in the biz and I understand statistics so my view is not typical. But--if patients are really valuing "cure" as medically defined so highly, what are they thinking when they agree to palliative chemotherapy? (which is mostly not toxic so it's not apples to apples, but I think you get my drift).

If you are finding my train of thought a little hard to follow tonight, don't despair. Terry feels like I'm not quite thinking perfectly. It is actually really hard to hear that someone thinks you are not thinking well; how can you defend yourself? I felt that I had been thinking pretty normally; what other perceptions about myself/my thinking/the entire universe were suspect now? There were tears (a lot of tears), but after Terry told me he felt my reasoning and thoughts were ok, that I just didn't seem to have the usual level of vigilance/alertness and his faith in my ability to carry out automatic tasks was marred, I felt better. He always knows how to flatter a girl.

Tomorrow I am going to get labs. I am hoping this time that there will be something to fix in my labs that makes me feel more energetic and helps out my brain. For you, I hope a solution you have been seeking will start to appear. If you are not seeking a solution to some interesting problem, I hope you get to get busy soon because I think solution seeking is one of the funnest things we humans get to do.

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