Cancer Update #10

January 26, 2016

Dear Friends and Family,

This past Thursday marks one year since I was diagnosed with cancer. As you know, it has been an intense year. A stem cell transplant is a brutal treatment. I am, though, very happy to report that I am now in far better shape, both physically and emotionally than I was pre-diagnosis. In other words, the treatment has worked. After what seemed like a slow recovery, my energy is up and my back pain is down. I am able to walk once more and that is a great gift. I am back to doing dog walks. Having body energy again gives me a renewed sense of hope.

As I get better, it has begun to sink in just how sick I really was before I was diagnosed. Early on one of the doctors did some detective work and found lab results from 2008 when I had some surgery at Women’s College Hospital. These results show that my kidneys were already compromised back then, which means that the cancer was already present. That means that my exhaustion thru graduate school wasn’t just the enormous amount of work they piled on us, it was also because I was ill. How did I write a thesis and produce a body of work? It is very odd to realize I was ill for a few years without knowing it. I just thought it was reality. When did that first white blood cell go rogue and begin its exponential growth? No answer to that question.

I have become very intrigued by what the experience of cancer is, both in our bodies and in our culture. The hospital world has its own reality. I see the attraction of television shows about life inside hospitals. And then there is the pharmaceutical industry. I’m taking maintenance chemo that costs $100,000 a year. One pill (I take 3 a week) costs $270! I’m not paying for it – the Canadian taxpayers are. Who is making all that money? So my art continues to explore these questions. It is very satisfying putting my experience into finding meaning thru visual & written forms.

While it is glorious to have energy again and be able to do more, I’m not cured. The cancer goes on growing, but from an earlier starting point. I go on treating it and suffering various kinds of collateral damage. Other medical issues that were overshadowed by the cancer are making themselves known again. I am living with cancer. This is the last cancer update letter for now, but there will no doubt be new chapters opening up down the road.

Many of you helped Peter and I in the last year in umpteen different ways. Your letters, cards & emails cheered the spirit and made us feel not so alone. Some of you came and gardened for us (& some of you are way better gardeners than me, so the garden is thriving!); others of you drove me to & from that endless river of appointments and some fed and comforted Peter when I was in Princess Margaret Cancer Centre. There were dog walkers and dog sitters. Various people taught me to meditate; others cleaned my studio. Some contributed intimate talk about their own cancer or kidney experiences. Others offered retreats to their warm climate or summer properties. People brought books, flowers, food and emotional connections. The woman in the dosa hut on the corner still gives me food. I have felt very held by all of you – thank you. I did draw the cancer card, but I also drew the loving community card.

Peter, who has given me a bottomless bucket of love and support through this ordeal, is taking me to Belize at the end of February. In the worst moments of last year I thought I’d never travel again. Now we will go snorkelling and stay with an old friend who lives in the Belizean jungle!

I’ll let you all know when I’m having an exhibition of the Cancer Files, my latest body of work.

Love,

Diana

Cancer Update #9

September 4, 2015

Dear Friends and Family,

I’ve been home from the hospital for 4 days now. It is wonderful to be in my own house with Peter and RuiDog. The garden is lovely to sit it and, although I’m eating very little, it is great to eat real food rather than the sludge they serve in the hospital. I’m feeling rather surprisingly weak and mostly I just want to sleep. I did have a doctor in the hospital tell me my job when I got home was two fold: eat and sleep, so I guess I’m doing alright. Unfortunately I’m also suffering from my bad back – the herniated disk didn’t like the lack of movement.

I was in the hospital for 22 days! That’s a long time. It was a mixed experience like any canoe trip. I was given the big poison shortly after my arrival, followed immediately the next day with my own stem cells which had been carefully stored away. Then followed 5 rather surreal days when nothing much happened. The water was smooth, the sun shone and I had a variety of visitors. The autologous stem cell unit is very interesting. Because infection control is one of their chief tasks, all patients have their own rooms, the nurse to patient ratio is very high and the nursing staff are superb – very knowledgeable, caring and compassionate. All this seemed like overkill in those first few days. Then, right on the schedule, the water got rough and the weather turned bad. I won’t get too graphic here, but suffice to say that that the high dose chemo kills the lining of the GI tract as well as my bone marrow. So both ends of the GI tract were out of control for a few days. Very nasty. I didn’t get mouth sores (fortunately) and I only had a mild dose of difficulty swallowing – something other people get in extremis. I also suffered from very high fever. So those rapids lasted about 5 awful days. Then things got better and I was all set to go home, when I developed another high fever. I had to stay in hospital for another 5 days. Somehow this was the hardest part of the journey. I was dying to get of there by then. Overall, though, I was well looked after in a very well run unit. I also had a nice bonus. Outside my window was a beautiful garden made of huge glass flowers in a variety of colours. Very magical and full of whimsy. I loved watching how they changed as the light moved thru the day.

Thank you for your many many emails and cards full of poems, canoe trip stories, good wishes, encouragement, and love. They helped the journey tremendously. I’m sorry I’m not able to answer you individually. And many of you have written since I returned home asking how I am doing. Please take this letter as your response as I don’t have lots of energy.

If anyone wants off this list, let me know. Meanwhile I love your responses, but don’t expect individual replies back.

So I’m at home healing. I thought it would be hard to go slow, but so far, tiredness and weakness make that easy. I look forward to slowly building myself back up. Meanwhile, sleeping, reading, knitting and sitting in the garden with the dog seem to be the main activities on my To Do list.

Love,

Diana