Wednesday, April 17, 2013

Feeling Betterish

I feel sorry for all you Americans who did, or should have done, your taxes on April 15! I didn't do mine and it doesn't matter!

PET scan Aug 12, 2012
Paramananda, Padmatara, Julie and I talked to Dr. Nelson today. It was a good conversation. It made me feel positively cheerful. I told her about my fear of chemo. She seemed to totally 'get it'. She said she didn't know if I could fully appreciate how unusual my point of view is.

If I decided not to do treatment, she would refer me to hospice. Even though things seem to be spreading all over the place, the primary concern is still my lungs and my decline will probably revolve around them. There are so many ways things could unfold you can't really know all the scenarios. Bone pain can be dealt with in various ways including radiation.

It's funny thinking about the psychology of it all. For me, the lungs aren't that important anymore, all the other mets seem disasterous. From a medical point of view, the lungs are, at the moment, 'still the main issue'.

PET scan April 13, 2013
So the drugs on the table, at first, were the chemotherapy drug, Topotecan, and the targeted drug, Avastin. The Avastin is pretty straightforward and can be combined with a variety of chemotherapy drugs. The Topotecan would mean I'd have to go to Kaiser every day for five days in a row every three weeks, and  all my hair would fall out. But when the hair loss came up, and I mentioned I'd be sad to lose my curly new 'do, she said we could switch to one of the other drug options, Gemcitabine (jem-SITE-a-been). It doesn't cause hair loss, and it's administered only once a week for two out of three weeks. She said these drugs tend to be much more well tolerated than what I had before (CarboTaxol), and that we'd do a scan of some kind after six weeks (last time we talked, she said after two or three months.) So it all seems very do-able to me now. If it's not so bad, and it seems like it probably won't be, it could buy me a few more months of life.

Renee the social worker told me that people tend to live longer once they're in hospice. If I do the chemo, and I probably will, I won't be in hospice, because I'd still be getting scans and stuff, which isn't in line with the hospice principles. Once I stop, that is what will happen. I need to call the Kaiser hospice one of these days and chat about things. Also, this place, Compassion and Choices, that Trebor's friend told me about.

Fernwood Cemetery
To clarify what I wrote about food last time (that it's not important), I'm not completely ditching the healthy food thing, although I seem to be not eating at home lately (which isn't that healthy!) I still want to eat food that makes me feel good, I just want to balance a bit more eating what I feel like eating with what is 'good for me' to eat. I had a few glasses of red wine the other day which I really enjoyed. Haven't done that in probably a year.

I wonder if once I get ill, I could maybe sublet a ground floor studio apartment in a leafier part of San Francisco, or nearby? This apartment has 31 steps, plus, I think that I would like to be somewhere else, but closeby. I  hope that can be worked out...

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