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

Advertisements

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

 

 

Cancer Update #8

August 9, 2015

Dear Friends & Family,

I finally received The Call today from Princess Margaret Cancer hospital. They have a bed for me. Unless the last remnants of the mild cold I have sends me home, I will be checking in later this afternoon. Then I begin The Ordeal – the stem cell transplant for my myeloma cancer. I anticipate being in hospital for 2-3 weeks unless I have a bad infection, in which case it could be longer. I expect to have a slow recovery afterwards.

Please do not come and visit me in the hospital. I gather that there are 5 days or so of this process which are ghastly. I will not be a pretty sight, nor will I have energy for anything except survival. Once I’m home, I might like visitors in very small doses.

I loved getting all your letters after my last update. I fully intended to respond to them, but somehow it never happened. Don’t feel any pressure to write; on the other hand, know that I love feeling a connection with you via your letters. Again, you may or may not hear back from me.

I’ve added a few new people to this list. If you don’t want the letters, let me know & I’ll take you off the list.

How do I feel? Like I’m about to head out on an Outward Bound course minus the beautiful Northern wilderness. But that feel of a journey. I put on that hospital gown and hand my flesh over to them. New people, big rapids, canoe might flip and I hope I have enough safety gear to survive.

Wish me luck.

Love,

Diana

Cancer Update #7

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.

Love,

Diana