"People plan and God laughs" - Yiddish Proverb
It's been six weeks since the last scans which showed mixed results from the first two cycles of SGN 35 therapy. Last week, we repeated those tests and found that SGN 35 is working, slowly but effectively, to decrease the cancerous activity. Lymph nodes in my chest, neck and abdomen, and in my right femur where the leg meets the hip, continue to be active, but are a bit better than they were six weeks ago.
As a result of these tests, we have come up with the following plan: we proceeded with the fifth SGN 35 treatment on Thursday, and will do the sixth in three weeks. My doctor in Chicago doesn't want to do any cycles beyond those six, because I am having a lot of pain and increasingly severe neuropathy as a result of the treatment and because there's not much evidence for increased effectiveness after six cycles. After that, I will have about three weeks of radiation to the spots that are still active - most likely to my chest, neck and hip. And then, theoretically, we will proceed to the transplant. I feel like this is the hundredth time that I have said so, but as soon as there's a date set, I will let you know.
This is the current plan, but I have learned from experience that it could change at any time. I continue to live, as I have for the past 14 months, planning only 3, 4 or 6 weeks in advance. It's not necessarily a terrible way to live, but there are some things that you just don't do when you're looking ahead to a period of transition. If you're don't know where you'll be in a month, you don't replace the Brita pitcher with the faulty lid or buy the 12-pack of Kleenex from Costco. If you're don't know where you'll be in a month, it's hard to RSVP for weddings, buy tickets for a favorite musician coming to town, or commit to working on a long-term work or volunteer project. This period from January 2010 until now has been a state of perpetual, possible transition.
Having the beginnings of a firm plan is a source of concurrent massive anxiety and huge relief - but I'm not penning anything into my planner just yet.
8 comments:
As always, thinking of you!
Hi Elissa, I've spoken to many patients about this paradox. Thanks as always for your beautiful and thoughtful posts.
Take care, Sara Moore
Thank you for this update, Elissa, and for your wise words as always.
I'm sure it must be incredibly frustrating, but it sounds like you're handling it with your characteristic grace... and in any event, I say toss the Brita. It's overrated.
hi elissa...
my name is kate and i'm a friend/fellow MT of your sister. your post moved me; you and i are close to the same age, and i really respect the graceful and poignant way you write about your experiences. i don't know that i could look at things the same way.
thoughts, prayers, love, blessings, and every good thing on you and yours <3
thank you all for your thoughtful comments!
Real-life letter on its way to you. Lots of love.
really late commenting, but I just saw this. I so appreciate your honesty, Elissa. Love from NYC.
Elissa, my mom did well with her non-hodgkins lymphoma. I'm getting radiation for DCIS breast cancer, so thanks for writing this blog. Keep up the good work! Take care!! Rose m
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