Wednesday, January 16, 2013

Tsunami brain

Blurry photo w Cliff House in the distance
Apparently the birds at the beach are called piping plovers.

Potential problem with Living Funeral/Celebration of Life: Zero idea of what I would want to do, or be done.

Talked to Dr. Nelson with Jules and Padmatara. She (Nelson) must have had a nice holiday herself as she seemed much more relaxed than usual. I get the feeling from her, and this doesn't mean anything perhaps because it is of course a guess on what someone else is thinking, but I feel that she is about as enthused as I am about me doing more chemo. Perhaps even less so. She mentioned a patient who was dying of liver cancer and refused more chemo, and went into complete remission from taking some kind of mushroom.

On the other hand, she says when I start developing symptoms I should start treatment quickly. At the moment my lungs sound very healthy. Healthy people are much more likely to tolerate and benefit from treatment. I said mid-Feb is the earliest I could start and she thought that was reasonable. She seems to be leaning toward a drug called CPT-11 possibly with Cetuximab (geez, who are the crackheads who come up with the drug names?) She hadn't talked to Dr. Brooks yet but should do so in the next day or two. She said we would know within six weeks if the drug is working. (So my thinking is, I can maybe deal for six weeks.)

I got an x-ray and will hear from her on Thursday how it looks. My fantasies tell me that the nodules [Q: What is the difference between a nodule and a tumor? A: A nodule is smaller.] have stopped growing, 'cuz that would give me a break from the vague sense of my-lungs-as-time-bomb and, more than that, relieve me of having to make the decision whether or not to do more chemo. But they probably haven't. They're probably growing like gangbusters (a phrase my dad used to use.)

...My cough (which has gotten much better) apparently isn't a cancer cough, which is lower, persistent, and may include blood....If I do more chemo, domestic travel for two weeks or less is reasonable...

We're also still waiting on results for the "EGFR mutation." If you are in need of a mnemonic device to remember that, some of you will be helped by thinking of "Effective Going for Refuge mutation." If it comes out positive, she will want to try Tarceva, which is effective 80-85% of the time for EGFR mutation positive primary lung cancer patients (keeping in mind that I am not a lung cancer patient!) But I like the sound of this drug because it's a pill, it's "well tolerated" and I believe I heard at some point that it doesn't cause hair loss. So I vote for EGFR mutation positive, and Tarceva.

Every once in a while I find a pen in my bed.

Just got a phone appointment with Dr. Nelson tomorrow: what the x-ray showed, and what Dr. Brooks said, and what the deal is as far as proposed chemo.

I talk to Dr. Keith Block in Chicago on Friday.

It just occurred to me how I should have organized this blog: two tabs, one for Medical Updates, one for Reflections. Next time?

Here is an online article from Tricycle magazine: How To Be Unburdensome [in death].

I am feeling overwhelmed with things to do yesterday and today. My calendar (for the next week or so) is filling up fast. But today because I did not go to Art for Recovery and Mike canceled dinner (he's sick), I get to putter around doing stuff, changing sheets, laundry, lots of emails and calls and I try to meditate while I am doing them, so feeling a little calmer.


  1. "Effective Going for Refuge mutation." :)

  2. Some inspiration for (buddhish) funerals etc here perhaps...

    much metta