Cancer Update #13

December 3, 2016 – Art Interview

Dear Friends and Family,

I think that many of you know that I have been making art about cancer as I travel along this double cancer road. Early last summer I was interviewed by The Muse Magazine, an online publication coming out of McMaster University’s medical humanities program. I was really impressed with the kinds of questions that Irina Sverdlichenko asked and I’m delighted with the final interview. Please have a look at both my interview and the whole issue. Feel free to pass this along. (There is a Full Screen icon if you mouse below the magazine image.)

https://issuu.com/themuse_magazine/docs/the_muse_-_issue_4 

I started the chemo phase of my breast cancer treatment this week. So far there have been no dramatic side effects.

I’m bracing myself for the unknown as I go through the next 12 weeks. Then radiation.

Not all of you will know that I was evicted from my fabulous studio at the end of Sept. I didn’t take it personally as everyone on my floor was kicked out to make room for the ever expanding gaming company, UBISoft. There was some very quick footwork and the help of my tremendous community to find a new place, pack up and move. I’m settled into the new space and excited to be here.

Thank you, as always, for all your love and support.

Cheers,

Diana

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Cancer Update #12

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.

Love,

Diana

Cancer Update #11

July 27, 2016

Dear Family and Friends,

It is with great sadness I break this news to you – my cancer journey has opened a new chapter. I was diagnosed with breast cancer on Monday. Somehow I have become one of the two cancer people.

The lump was found through a routine breast cancer mammogram. I’m part of the Ontario Breast Cancer screening program, so I get a mammogram every other summer. The test was clear two years ago. Once the mass was seen on the mammogram, they did a biopsy and ultrasound to confirm diagnosis. A nearby lymph node was also tested and showed cancerous cells.

Fortunately the day after the diagnosis I got in to see the first expert in what is going to be a long chain of breast treatment specialists. Peter and I met with a surgical oncologist and some of his team yesterday. In 4-5 weeks I will have day surgery to remove the lump and infected lymph nodes. When that heals I will probably have radiation. Because of my delicate kidney situation (from cancer #1), as well as the kind of breast cancer it is (determined from tests after the surgery) it is not clear yet whether or what kind of chemo I will have. That’s the short version, so far, of what lies ahead medically.

How do I feel? A hundred things at once: Like I’ve been run over by a truck. Grateful to have quick access to good medical care that is paid for. Horrified by my situation. Mortified that Peter’s life is as swamped by this as mine is. Sad that this is the life that I now have. Amazed at the resilience that rises up to face the new beast. Overwhelmed by all the new information I have to absorb. Curious about the new part of the medical system I’m entering. Intrigued about how this will deepen my cancer art. Grateful for all the love and support that is already coming my way.

I am reviving the previous Cancer Update list that I used last year for cancer #1 to keep you up to date on my situation. I’m operating on the premise that I’d want to know if it was you. I’ve added some new people to this list. If you don’t want to be on this list, for whatever reason, please let me know and I’ll take you off. There are many of you on the list. Your loving responses mean so much to Peter and I – they keep us afloat. It is an intense time as we find our way through this – I am not able to answer all your emails. For now please do not send me breast cancer information of any flavour. I know that there is a lot of it out there and I need to slowly find my way through. Feel free to share this information with anyone who knows me. At this point I’m keeping it off Face Book.

You know by now how I ‘do cancer’. My way is try and speak the truth of my experience – I hope without overwhelming my listeners. I try and tell my story through my writing and art. That is how I stay alive with what is now my life. It is also the life of many other people – you may be one of them or you may love someone in this situation. I view this as a cultural phenomena as well as a personal journey.

Fortunately the timing of my upcoming treatment means that I still get to go to Miami next week for Peter’s family reunion – lots of people I love there and I hope to snorkel off the Florida keys while we are there. Later in August Peter and I are going to a cottage in Northern Ontario, near Cobalt, a geography we love deeply. We’ll be able to canoe and swim in that spare and healing landscape.

Love,

Diana

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

 

 

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