Sarita is writing a wonderful graphic novel about the first year I had multiple myeloma — bone marrow cancer. She is putting it on a blog as she colors it — about one page per week. www.donkeyinalbany.com Amazing how much work it takes to color and get the shadows just right. But it is magnificent. She says it’s a story about herself as the caregiver that year, I say it is a story about me as the cancer patient. She really wants to get it out to other cancer patients and caregivers, and so she’s decided to put it on the internet for free, but also with the hope that eventually it will be picked up for publishing. The exciting thing, is that the International Myeloma Foundation has decided to include it in its online weekly newsletter, as well as its printed quarterly newsletter. We are both thrilled that it will get out into the community.
The book is about the scary beginnings of my disease, and the difficulty in diagnosing it, and the effects on my body and our lives. I had to quit teaching, I could barely sit up, the numbness from my tumor was creeping up to my chest, and I was taking tons of ibuprofen because that’s what my doctor told me to take for the “stress” that was making my ribs hurt. (Of course the ibuprofen had other effects that made me miserable.) Then it goes on to my diagnosis, my chemo and radiation, my vertebroplasties (back operations where they pound “cement” in between the vertebrae to keep them from collapsing), and eventually my stem cell transplant. I was so afraid during all of that, but reaching out to people in the myeloma support group in the Bay Area helped, because I saw that they were regular people like me who had survived many of the same things. Well, I guessed I could too, although the prospects felt horrifying. At least I had Sarita, and that really made all the difference to me in deciding to go for it. She was always supportive, always there, always encouraging me to keep going. And even when it didn’t look so good, she was there to talk to me about death, read books, do meditations, and think about the afterlife. That was just as important to me. It is unimaginable to be unable to talk about death with my partner.
Now as I read each page again that she is working on, I have a flurry of feelings. Sometimes I can’t remember, because I was in so much pain, or was so drugged up, or it is just too much for my emotional self to recall. Sometimes I remember vividly, and I shudder, because it feels like I’m living it again. Sometimes I just appreciate the beauty of her work, her perfect depictions of us all, the beautiful colors, the body lines that show just what we were thinking and feeling. And sometimes I feel just plain scared again. But not as scared as I was when I was living it the first time.
Because my myeloma is starting to creep back. It’s coming back slowly, very slowly, and it’s not time to make any decisions yet, because it hasn’t affected my kidneys, and I’m still feeling good, but the time will be coming when I have to make some decisions. In four months I may have to have another bone biopsy. At some point after that I may have to decide on chemo again, or, as my doctor would prefer, another transplant. Yikes. I’d told Sarita I would do all that once more, in order to hopefully get a few more years, and I absolutely know that I can do it, based on my previous experience, but it sure isn’t something to look forward to. It means I will be sick for a year or two, have to get all my immunizations again, eat yucky food, if I can eat much at all, and not touch plants for a long time. Just when we are getting ready to plant a garden and trees, and I am trying to grow flowers. Well, I can handle it, I definitely can. And I’m in my true home, in a state that I love, in a community where I feel comfortable. And it hasn’t happened yet.
The truth is, there is a lot of research on myeloma, one of the rarer cancers. There are a lot of chemos out there, a lot of clinical trials, a lot of choices. Unfortunately, the people I know with this have not fared so well, but I have to remind myself that every year there is more known and more possibilities for tackling this cancer. Because it’s in the bone marrow, and most patients have auto transplants (which means we give ourselves our own stem cells, which are as free of myeloma as absolutely possible but never completely free), it means that the myeloma never really leaves us. There is no complete remission. I am constantly reminded by all doctors, that it will eventually come back. It’s a matter of keeping it at bay as long as possible.
So all of this is to say, I love Sarita’s book, and I love all of that being in the past (so that I thought about it as little as possible for the last two years), and I’m just starting to mentally prepare for it to happen in the future, but meanwhile, I’m living like a banshee. Doing exactly what I want, working really hard not to feel guilty about anything, and being grateful every single minute. It’s a very good way to live, I wish I could have done it in my earlier years. I am happy every day, and looking forward to every activity, even if the activity is coloring in my coloring book while watching netflix. Whatever happens, I am a lucky woman.