Cycle Number 7

Hi y'all. Zbignews - dose reduction of oxaliplatin from 85 to 65 mg/sqm based on my reports of two weeks ago with the hand cramping (indicating motor effects). Hopefully I'll notice something better with the lower dose but so far not too much difference. Maybe just faster recovery time. Do do the proper experiment I should try to repeat last cycles actions - take subway tomorrow to MGH and see what happens. I probably won't eat steak though and have fork fall out of my hand. That pissed me off. Wonderful Ellen drove me to chemo yesterday. Since it was a late session 3PM - 6PM, we had lunch at Whole Foods - sushi, and cherry tarts for desert. We had much catching up to do so the time went fast. I am still considering an offer to Lou for Ellen. But since she's worth her weight in gold (and maybe a lot more), I am not sure I can afford it. In Africa, these trades are made in cows, pigs or goats depending on the local ag. But real money is also used. I have no cows or children to trade.

Cycle Six - Day 7 - nice weather

Boston Spring weather - cool sea breeze but warm inland. Lots of sun. Goal today of staying out of bed until 10PM. Trying not to do my typical 22 hour layin. Got on the bike this afternoon. Enough wind chill to feel the neuropathy but at least I'm not dropping my fork like last week. Dreading the next cycles. Got to ask the doc about something to avoid the long-term neuropathy. I got enough crap to deal with.

Solar Gain

Hi y'all. The great weather is boosting my spirits and enticing me outside. My enthusiasm must be tempered with respect for ultra-violet solar radiation (UV). Chemo and UV don't mix well. My onc-nurse, Emily, tells me I have to be careful for about a year. The 5-FU effects seem to linger and slow skin repair. So, the free-spirit ways are over - now it's all about skin protection products from sunscreen with high SPF to clothing with Ultraviolet Protection Factor ("UPF"). UPF is like SPF except UPF rates protection against both UVA and UVB.
Check out http://www.coolibar.com/sunprotectiveclothing.html
I bought a couple of clothing items for testing. It's a balance between breathability and solar protection. Standard light-weight fabrics don't have great protection ratings (still better than bare skin of course). But the technical fabrics can pass only 2% UV (reciprocal of UPF rating). Basic rule - if you hold the fabric up to the light and can see through it - it's a fairly low UPF ~5.
Take care. And protect yourself against the sun.

Cycle Number 6

Cycle number 6 start. Ellen is a gem. All chemo'ed-out. yuck. Some radiation recall on my butt (rash). Staggering a bit.

Today I found out that I only get 8 cycles. This is because I don't seem to have a classical colon cancer - this seems to be based on tumor location and type . In any case. I have no plans on insisting on 12 cycles. Eight is plenty bad enough - especiallly since I am going for no dose reductions. BTW, there seems to be no data on dose-response curves. Probably too complex to do with the long time delays involved. They seem to focus on cumulative dose but only relative to side-effects from what I can see. So it's a crap shoot in any case. Basically, it's up to the patient - if he complains a lot, or has some serious symptoms (myelosuppression that can't be compensated for with stimulating factors, transfusions, bad diarrhea, neuropathy to the point of not functioning, can't hold food down, infections, etc.) then they start thinking dose reduction or in some cases in-patient treatment.

Today I talked with three brothers, one of whom has metastatic pancreatic cancer. His mother also had it. They live near some toxic waste dump which was cleaned up a few years back. I'll try to bring the Professor Randy Pausch option with me next time. I might see them again. He's getting something really exotic right now. Check Pauch's blog. Link to nice article by Stephen Jay Gould.

Another guy I know with bile-duct cancer, a wife, and a new baby. He is finishing up his chemo, after having more then half his liver removed. It regenerated well (quite an organ). Now they offered him radiation option (McDonalds onc, I call it) since no data one way or the other. He is looking good on his eighth cycle. Great attitude, great wife.

Ok, bed time (sleep is optional, as usual).

Baseball

Randomly surfing today - saw Brad and Jacqueline on Mass. Ave. last evening in their ~1994 Jaguar which is in great condition. They invited me in out of the light rain. First time surrounded by the mobile leather and walnut. The standard greeting "how is it going?" inevitably leads to my shocking answer (at least for some). This lead to a drive in the Jag and a late dinner with a lot of conversation. Highly energizing - no time to lie in bed thinking of mortality (which happens every night anyway).

Forgot spelling of Jacqueline - so googled and linked to Jackie Kennedy on wikipedia which led to her cancer and then to a list of notables with non-Hodgkin lymphoma which includes some baseball players - most recently Jon Lester - RedSox pitcher (sore back>diag) and Andrés Galarraga - MLB (1st baseman) - 399 home runs, nickname El Gran Gato (sore back>diag).

Non-alcohol beer OK for chemo - great taste, less filling.

Chemo Cycles - 3 to go

Hello all,

I seem to have survived my first five chemo cycles thanks to Ellen's unstinting support during and between chemo. She is my rock of Gibraltar - only much softer and speaks English. I can't give enough accolades to my mother for her incredible emotional support - even now dealing with her own health problems and advanced age. My only sadness is that I may not have the health and strength to support her, and you my supporters, in the next months and years. This sucks.

The colostomy bag thing is getting real stale already. But it's permanent so there's not much point in complaining. On the good side, my old bicycle seat seems to fit my new anatomy. I tested out my rear end yesterday and actually rode (gently) for 30 minutes along the river. No aches or pains today. My bike pants fit more loosely than pre-diag. Those quads (and all the muscles) really went away after surgery. I'll likely need a new bike with a good suspension and seat to avoid damage.

Well, I certainly have found the ultimate weigh-loss regimen. To quote another blogger - when they tell you "eat, eat eat" you immmediately lose your appetite - how true - especially during chemo but also with radiation.

It seems a lot of famous cancer patients have hit the blogs and written books - Fran Drescher's http://www.cancershmancer.org/ has her blog. Fran has a lot of advice in dealing with doctors - mostly good stuff.
And Randy Pausch's blog with his really tough fight against pancreatic cancer. http://download.srv.cs.cmu.edu/~pausch/news/index.html

Ok, enough for a first post in the blogosphere