Sept 9, 2016
Dear Friends and Family,
On Wednesday I began the Treatment Phase (it is like that – capitalized) of my breast cancer. It was surgery – a lumpectomy and removal of 4 lymph nodes. I am surprised at how well I feel now, less than 48 hours after the experience. I kept calling it, “getting chopped up” before hand. It didn’t feel like that. It was very intense as I was moved from one preparatory procedure to another until I finally reached Surgery. It is as much about negotiating all the different people who deal with you as it is the particular hole they punch into you or the wires, radioactive markers, or blood products they insert. I work very hard to learn their names and some piece of their story as well as understanding the medical proceedings. I asked the young woman handling my breast as she set me up for the first mammogram of the day if it was interesting seeing all the different breast shapes. She said that at first she was embarrassed touching people so intimately, but then she realised that every breast was different, like hands. Once she understood breasts as hands, she felt easy handling them. The hospital is an amazing system, some of which works very well and some which doesn’t. The timing of the day hit some snags early on which put pressure on other parts of the day and the people who were responsible for them. Sometimes pressure brings out the less attractive parts of humanity, myself included, but sometimes the more creative parts appear. The operating room was an A team, all dressed in blue. They were very smooth and graceful as they moved from job to job. The big guy gave a summation of the task at the beginning in just the right tone which focused the whole group. They were tuned into me, so when I cried out, “Oh, won’t someone hold my hand and tell me it’s going to be ok?”, three warm hands were extended immediately and they said just the right thing. Then there is that strange experience of anesthetic. The anesthetist says she has just given me a needle of something and I’ll feel dizzy. I say, oh this is a sweet high and then abracadabra, I wake up somewhere else. Not Oz. I was very groggy and trying to put together where I was and what happened before here. My glasses continued to be 15 vulnerable floors away with my clothes. But by squinting I could make out the giant clock which told me 2 hours had disappeared. The surgeon came to tell me all had gone well.
Then a very strange thing happened. I got talking in my groggy, rising-to-the-surface way, to a recovery room nurse. She asked what I did and I told her I was an artist who made art about bodies and cancer. She looked astonished at the idea that someone could make art about such a thing. She pulled her iPhone out and went to my website, looking at the images and reading the text out loud. The she turned to me with tears and told me how cancer was touching her own life, separate from being an oncology nurse. It was so intense, like a fire, to feel my art feeding her, taking her beyond all this medical construct of the experience, even as we were conducting ourselves through that medical theatre. Some might think that she overstepped boundaries in a professional setting. I think we stepped together through the boundaries to a place of much deeper meaning and connection. It buoyed my healing immensely.
So I feel as if I am shifting gears. August was a very tough month. When I got the diagnosis of Cancer #1, I was thrown into the experience instantly – diagnosis, hospital, induction chemo, cell harvesting, hair loss, and finally stem cell transplant, with its long, slow recovery. I’d had to absorb the whole experience just as the next wave crashed over me. For Cancer #2 I’ve had time to take in this new diagnosis and it’s ramifications more slowly, before most of it starts (though there were some brutal, even-complain-about-them, tests). We did get to Miami for Peter’s annual family reunion. I was able to snorkel and see that lovely underwater world briefly. There were real connections with people I like. But then in mid-August we were all packed up to go to a cottage in Northern Ontario, canoe on the car, dog ready to go when I received a call from my Cancer #1 oncologist at 9:30 PM. She advised that my low blood platelet counts made it dangerous to go to a cottage in the wild. I might have ignored her advice, but I woke up on leaving morning with a cold on my chest. Not an auspicious start, so sadly we cancelled the trip. Instead I spent the week crying and Peter joined me for some of it. There was the loss of the cottage, but somehow that just took the first box off the shelf and then all the other losses of illness came tumbling down on top of me. The world narrows. One faces the fact that there is less time, yes, but there is also less energy. That’s the hardest part. I’m not languishing in bed, but I have to carefully choose every day what I spend my energy on. If I walk the dog in High Park at 6:30 AM (oh frabjuious joy, I can still do this!), I can’t stand and cook later in the day. If I go to hospital appointments (there is an infinite line of them), it is hard to do other physical tasks the same day. And even quieter tasks, reading, writing, drawing, require focused energy. There are the losses of possibility and agency in the world. Losses of dreams. But we all lose them eventually, it just comes at different times for each of us. Mortality. Cancer brings Mortality tapping its clipboard and raising its eyebrows, even if the timelines aren’t clear.
As always the art and the writing give me a place to open towards. If I’m going to have a body riddled with cancer, then let me understand its meaning for me, the recovery room nurse and anyone else it speaks to. So I feel as if I am shifting gears out of August’s fear of being “chopped up” and losses, now into a new phase. Healing from incisions and preparation for the next part of treatment – radiation and maybe chemo. And Art.
The usual provisos apply for my cancer letters: I’ve added some new people. If you don’t want to get these letters, let me know and I’ll take you off the list. I love getting your wonderful, loving letters, thank you so much. I love hearing your stories and perceptions. There are too many of you for me to answer (energy, time and all that). It’s okay if you don’t write. I want you to know what is going on. Feel free to share my name and the letters with anyone else who might find them useful. I’m still not mentioning the breast cancer on FB, so please don’t refer to it. And I still don’t want information about ways of treating cancer, though I deeply appreciate you caring about me.