Tuesday, October 03, 2017
Medical: Blood Test Tuesday before Chemo Wednesday
It is 10 days since I promised to report the insights of the lady "just like me" (same MCL, found in her colon (like my second lump was), same doctor, same hospital)
- Her highs and lows
- Her strategy for second opinions
- The stuff they don't tell you before you start
HIGHS & LOWS
Highs
- Private room during Stem Cell Transplant
- She'd returned to work after only 2 months out (1 month in hospital, 1 month at home)
Lows
- During the 2nd rounds of chemo (Nov, Dec, Jan) the hospital room is semi-private, so you're at the mercy of the other patient's TV & visitor habits.
- The lengths one must go to during ASCT for cleanliness (laundering, bagging, storing clothes, sterilizing ones inside (antibiotics) and out(antiseptic washes))
- Upon return home, there's still several weeks of vulnerability where you can't leave the house and should not share a bathroom
SECOND OPINION
- She went outside the "Harvard Bubble" (where I'm being cared for) and she at least went across town to the Tufts New England Medical Center (where Daughter 1 & Daughter 2 were born, as it happens).
- I'm inclined to see if I can go all the way to Houston (also a great cancer center) to see what they think. In the Audiobook of Emperor of All Maladies, it appears that Houston was a refuge for many early chemo pioneers who didn't fit the "DC-NY-Bos" models of care, but often turned out to be right.
STUFF THEY DON"T TELL YOU (About ATSC)
- All that stuff about sanitizing and isolation listed under "lows"
- That for months I wont be permitted to garden or eat salads due to the soil-borne germs risk.
- That for a month, my food will be exclusively heavily cooked, but later I can add fruits with peels
- That for 100 days my immune system will be like that of a newborn, and will have "forgotten" all the germs I've ever been exposed to and all the vaccinations I've ever had (and then, at 100 days, they'd start reintroducing childhood vaccinations)
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1 comment:
During isolation we can skype singly or in conference so you don't feel as alone!
Not sure whether knowing these things in advance is really a good thing... maybe anticipation is better saved for Christmas, and surprise better for those things that aren't fun to anticipate??
PS Big cyber hug! (i'm practicing)
PPS do you get an alert when someone leaves a comment or you have to think to check??
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