May 26, 2017
Dear Friends & Family,
This is kind of creepy, so skip the first part if reading about medical procedures is too icky for you.
I’ve finished the first part of my cancer treatment – 16 weeks of Induction Chemo, aka Chemo Lite. Now begins the Stem Cell Transplant. It is divided into 3 parts – harvesting cells (called mobilization (really?!! military language?)), killing the cancerous cells (& the rest of my bone marrow, hair growing cells and the lining of my GI tract) and then replanting the harvested stem cells. Part 1 has begun. Later this week I’ll be given a drug which makes my stem cells leave their happy bone marrow home and head out onto the blood vessel highway. After a few days of this treatment, the blood vessels will be crowded with stem cells and I’ll be attached to a dialysis like machine. This will take my blood out (& put it back!) and separate out the stem cells. They will be frozen and stored until needed. Enough stem cells for 2 transplants will be harvested. Once the harvesting is done, I have a slight break. Peter, Rui & I are off to see Brenda, my 96 year old mother, as well as some old friends. On June 22 I have something called a Hickman line put in. It is a semi-permanent in-out IV port. And on June 23 I begin waiting 2-6 weeks for a hospital bed. Once I’m in hospital, I’ll be given the really high dose chemo, known affectionately in our household as Agent Orange. That’s the horrible stuff (hair falls out on Day 12, sores in mouth, GI tract unhappy, more ghastly excitement yet to be revealed). Then a few days later my stem cells will be replanted. The danger in all this is infection, as I’ll have no infection fighting white blood cells. I’ll also be very weak as the red blood cells take the longest to grow back. I’ll be released from the hospital once my blood counts are at an acceptable level. And then a long slow recovery as the system rebuilds.
There was some debate as to whether I’d be in-patient or out-patient for parts 2 & 3. Initially I had thought that out-patient sounded good – loving Peter at my side, nice garden, my own bed, real food and the bouncy Rui dog. But then someone who had been through the whole process described it to me and I realized I wanted to be in the hands of experienced nurses. When I’m vomiting, needing blood transfusions and truly miserable, I want nurses who can tell me that this is all quite normal. And much nicer for Peter not to have the burden of care. However this in-patient, out-patient decision wasn’t up to me. It was looking like out-patient as I live close to the hospital and have lots of support. Fortunately (or unfortunately) my lousy kidney situation qualified me for in-patient. So I’ll be in hospital for 2-3 weeks sometime this summer. The down side of in-patient is the twiddle-my-thumbs wait. I need to have my bag packed ready to arrive at the hospital within 3 hours. Not too many out of town adventures this summer. While hospitals aren’t the best places to get a good night’s sleep, I do find the culture endlessly curious.
So how am I doing with all this ahead of me? Well, I’m afraid. No other way to say that. I feel that there is this vast cavern of darkness and spiders in front of me. Pain, ickyiness and unknowns loom. I console myself with the thought that recently I was very afraid of going off the steroids (as per The Treatment Plan) and having all my debilitating lower body pain return. Some of it has returned, but the great work I’ve been doing learning Mitzvah techniques is paying off. I’m finding new ways to hold my spine – transforming my motion – no mean task at age 61. I’m also learning to meditate – why is this so hard to learn? And most of all the next art series has begun, working title The Cancerous Body. I’m onto some exciting new visuals and madly reading the theory and history of illness. So while I sure wish I hadn’t drawn the cancer card, it’s the one I got. I’m using it to unfold the body and spirit into their next forms – maybe that is all we ever do with the cards we are dealt.
As always, please feel no obligation to reply. If you want off this list, let me know. If you do reply, I may or may not reply to you as my energy is quite limited.