Accepting Illness

This is a talk I gave to a Unitarian congregation in April 2017

The school of illness has taught me much about acceptance. As many of you know I have two kinds of cancer plus kidney disease & anemia. I am currently receiving radiation treatment for Cancer #2, breast cancer. I have had to find ways of navigating the changes all this disease and disability has brought to my life. There is a full curriculum in this school. Acceptance of the body, of limitations in the world, of time and of change.

Jan 21, 2015. Those of us with these serious, life threatening diseases all have our diagnosis dates firmly memorized. But for some of us, myself included, the time leading up to diagnosis was a time of inarticulate chaos. I had known for a couple of years that something was wrong, but I somehow didn’t have the language to even name what I was experiencing. I didn’t quite know what I would say was wrong if I went to the doctor. I vaguely thought that the deterioration I began to feel was related to an old foot injury and the embrace of middle age.

It was a June day in my art studio a few years earlier. A moment arrived when I could no longer keep out the overwhelming fear and worry that had been nibbling at the edges of consciousness. I doubled over and began to sob and sob. On some profoundly deep level I knew that something was very wrong. I could feel that I was never again going to do the more strenuous physical activities I loved like hiking in the mountains or portaging canoes through the wilderness. I knew I was entering a room full of losses.

Somehow, in the midst of that grief, the enormity of the changes began to dawn on me. I started thinking about who I was going to be as I shifted into this state of disability needing help. I had no idea yet just how serious all this “wrongness” was or how much help I’d need. But I knew I didn’t want to dive into that tempting pool of self-pity calling to me like sirens on the rocks. I started to think about how you live with illness, and I did not want to be a whiner. I’ve seen some who chose victimhood, clutch & squeeze their needy hands around the necks of their helpers. If I was going to get support from others, especially my husband, I needed to find a more life giving way of asking for and receiving help. I wanted to come from a place of clarity and gratitude. It was a choice.

When I was young, I was horrified as I watched age and illness narrow the boundaries of people I knew. Youth and health seemed to be so much about expanding and opening and energy. That’s what I thought real life was. I couldn’t imagine that anything positive could come from narrowing. In illness and in age my boundaries have narrowed. I am smaller in the world. I walk down the hallway and there are fewer doors to choose from. But then it turned out that when I chose and stepped into a room, to my surprise, different doors opened out from it. Life does keep expanding, just not in ways I had imagined. Prior to my diagnosis I had had a long dry period artistically. I couldn’t get a focus, or a theme or a project. I now know I was very ill, but at the time I just felt stuck. I tried a bit of this and a bit of that, but nothing jelled. Then I was diagnosed with the first cancer, multiple myeloma. You might be surprised to know that this was actually a relief. I finally had some clarity and words about what was wrong. And with that I suddenly knew exactly what kind of art I needed to make. Even as I was frightened by the diagnosis, I was excited, focused, and energized with the visions of the art projects I was going to give birth to. In my case it was art about the nature of cancer. I would use this plague that had descended upon me. Nothing like a Mortality’s cold grip to get me in motion!

Carrying out the projects wasn’t so easy because my body now had limitations that the young, healthy Diana hadn’t had. Of course my younger self had met limitations – there are always limitations – but they hadn’t been limitations of energy and mobility. My impetuous, crazy 35 year old self could work all night. Acceptance of this aging, diseased body required that I address my limitations as I planned my projects. At one point I was making life-sized sculpture. I decided I wanted to be able to move each finished piece by myself, but I’m not nearly as strong as I used to be. So I made them out of light aluminum pipes, wire mesh and plaster bandages. Then I built some dollies so that I could move them. Acceptance has made me more ingenious.

I don’t hurry as much as I used to. I notice this particularly on public transit. I’m the one holding onto the hand rail as I descend down onto the subway platform. I’m the one not keeping up with the rush and the thrum of the pace. That is because I can’t move quickly or fluidly anymore. So like any person with a physical disability, I have to deal with this. There are moments of inadequacy when I almost want to tell the impatient commuters that I didn’t used to be like this. But what is the point of that? Here I am, moving slowly. Sometimes people give me their seats and I graciously accept. And you know, the world looks different when you move slowly. I watch the choreography of how people move into and out of subway trains. I think about how as a society we hurry from moment to moment and I wonder about all the rushing. I think about how older people the world over have had to learn how to dance to a different, slower rhythm. And I remember that the slow dances carry their own, more intimate pleasures.

I’m not always noble and philosophical about living with cancer. Some days I’m nauseous, tired, grumpy and short tempered. Then I don’t even care that my life is all about tired… I am one with my Exhaustion – that’s all I am. And then I am infuriated, mostly at myself, that life seems to only be about weariness. I have to work to separate some part of self from the fatigue and the fury. Hello human person. It takes effort to love and accept myself through these times, and I do it only with varying degrees of success.

One of the challenges of acceptance is to balance carefully on the line between giving up and pushing forward. Sometimes I feel I’m just not trying hard enough – to get to the gym, to write another exhibition submission, to do my share of household tasks, or to go to more cultural events. I feel that if I don’t do these things I am giving up, even though I’m tired, my bones are weary and my muscles hurts. Sometimes I think I am imagining these aches and pains to get out of going. Am I really just a lazy slug? When I was younger and healthier, I thought that ‘acceptance’ was another word for giving up on life. Now I see how our culture relentlessly pushes us forward. Progress it is called. Instead I need to cultivate compassion. It requires that I look more nakedly at what I can and can’t do. I can’t just motor over myself and not notice what is going on. Sometimes I have to accept that I can’t do, do, do. I just have to be.

I want to talk a little more about the flesh. That is, after all what this is about. My body. We live in a culture that is obsessed with the youthful body. The youthful body Photoshopped and sculpted into unrealistic, impossible shapes and surfaces. In this paradigm age is unpleasant, scars and disease are ugly. ‘Normal’ is defined as something other than me. I, like many large women, have spent much of my life hating my body. I have given energy to this self hatred, nourished it with tidbits from my daily life. A sideways glance of myself reflected in a store window would disgust me. So here is the good news. Cancer ridden, new scars from surgery, the wrinkles and flabbiness of age, lack of energy and impaired mobility – I actually have more moments of sensating and enjoying my body now than I ever have before. That’s acceptance. All those years of fantasy – wanting, wishing and hoping that my body would be different than it was; I’m done with that. Now I accept that this is the body I have. Diana is this flesh. Mortality’s glance at the watch and sighing tone told me if not now, then when?

I wouldn’t wish cancer upon anyone; however since it is here, how can I make use of it? How can any of us use the catastrophes that Life serves up? I have spent much of my life living as if tomorrow was going to bring the answers. Now I feel that Mortality, because that is really the great gift of illnesses such as these, is reminding me to throw out the illusions. There only is accepting what is here right now. Let me unwrap the treasures within that. Thank you.


Cancer Update #15

April 12, 2017

Dear Friends & Family,

I gave a talk recently to the Unitarians called Accepting Illness. Here is a link to an audio recording of the actual talk – 12.5 minutes with an introduction from Allison Kabayama:

Of course, I’d love to hear your reaction to it.

I have 2 more weeks of radiation treatment to go, with 4 weeks already completed. Surgery, chemo and radiation – first they chopped  me up, then they marinated me, and now they are cooking me. Radiation is an odd treatment. I have to go every weekday – that’s the tedious part as it is often in the middle of the day and schlepping down to the hospital and back is tiresome. I just getting going on something at the studio and then it is time to leave.  The treatment itself is painless, kind of like having an x-ray. You hear a machine hold a sustained buzz, then the machine moves to a different position and buzzes again. The whole thing only takes about 20 minutes and the appointments mostly run on time. The odd part is the set-up. There is a team of  3 or 4 people who give the treatment – radiation therapists, they are called. They are almost all young. I find that very odd. It is not a physically arduous task, except for keeping pace. Radiation has been around for quite awhile, so why aren’t there older therapists? I’ve changed into a hospital gown; I go in and place myself on the table. Within minutes there are very pleasant people pushing my breast around and adjusting my body. “Don’t help me,” they always say as they nudge my torso. Various number scales are projected across my chest and armpit as they align me with the radiation beams. I hold very still and they all leave the room so they don’t get exposed to the rays. There is a peculiar chiming sequence that indicates they are out of the room, kind of like the subway door tone. Then the giant machine revolves above me first one way and then the other. The team comes back in and readjusts me for part two. Like any routine, the whole repetitive process becomes normalized very quickly.

So far I haven’t had any of the side effects common to radiation; however they may still be waiting for me around this last corner. Fatigue, skin blistering and skin toughening are the most common. Fingers crossed that I don’t go there.

At the end of April (April 27), I’m finished almost all of my breast cancer treatment. I do get an intravenous drug called Herceptin every 3 weeks until the end of November. Then I’m truly done.




Cancer Update #14

February 7, 2017 – Q&A on Creativity & Chemo Update

Dear Friends and Family,

I was recently interviewed by Roxanne Brathwaite for her blog, Suite City Woman, about creativity and my new studio. If you didn’t see it thru Face Book, please go and have a look:

I was very happy with the results. Of course I’d love your feedback, either on the blog or by email.

Meanwhile I’ve been living through the latest round of chemo. It began at the end of November and it ends next Friday. Do you know the difference between a drug reaction and a drug side effect? Nor did I. This particular poison is known for its reactions – that’s the bad things that happen while they actually give the drug – so first they give you a whole lot of pre-meds to counter the possibilities. Initially I had no reaction, so they took off the pre-meds. On week #4 I began the allergic reaction – a cough that wouldn’t let me get a breath, a rising flush through my neck and face and finally a weird light headedness. It all happened so fast, I didn’t know what was occurring. Fortunately a very astute nurse was suddenly in front of me saying, “Are you okay?” “No,” I said. “Something is very wrong.” Within in seconds there were 4 nurses around me and I could tell that protocol had kicked in – poison turned off, oxygen in my nose, blood pressure taken (& rising) and a doctor called. Somehow this all settled down, the pre-meds were given and the poison tap was turned back on. I had this same reaction twice more despite the pre-meds, though I was able to recognize it sooner. On one of these occasions I asked if they hadn’t intervened, would it have killed me? Yes, was the answer. Good to know the lay of the land!

The drug side effects have taken longer to kick in as they are cumulative. There have been minor effects – nausea, nose bleeds, hair loss and skin rashes – as well as more major ones. Nerve neuropathy in my fingers and toes and now it seems that some of my finger nails are going to come off. It has become difficult to do buttons up – actions that need the fine motor skills. Last week I had two shortness of breath episodes which were very frightening. Chemo is on Fridays and one of the pre-meds is a steroid which is keeping me wide awake for both Friday and Saturday nights. That makes Sunday very sleepy. Some of the nausea has turned to vomiting. There is a persistent cough and cold which doesn’t want to heal without white blood cells. Overall I feel run down and debilitated. And fatigued.

Unfortunately, unlike Cancer #1 where I have a fabulous oncologist whom I love, for Cancer #2 I have a medical oncologist whom I dislike intensely. He is arrogant and self centered. Trying to get information from him leads back either to how aggrieved he is (the nurses, blood technicians and administrators don’t do their jobs properly) or is an opportunity for him to talk about himself. I’ve given up trying to learn anything from him and I concentrate on trying to solve reaction or side effect problems. He did come up with a drug to counter the allergic reaction. Fortunately his junior doctors and the nurses in chemo are great, so I feel covered by them.

So how am I managing all this? One advantage of having already been through a brutal treatment with Cancer #1 is that I know that I’ll come out the other side of this. When you are in the midst of the misery, it is hard not to believe that this is reality for evermore. Mostly I can remember that there is a farther shore to be reached. I’m not as hard on myself. I accept that I will have little energy and will feel smaller in the world. I don’t expect that my art projects will continue apace while I do this. I decided I would live life and cancel if necessary. I’ve only had to use the Cancer Cancel Clause a few times, all in the last couple of weeks.

Going into this chemo time I decided to take up knitting again as a good project for home – creative, low energy and a soothing way to pass the time. Then the Pussy Hat Project came along! Those were the cat eared pink knitted hats in response to Trump’s “Grab ‘em by the pussy” remark about women. A taking back of our pussies as it were. So that was a really fun way to channel my energy – maker culture meets political action even with low energy. Three of my hats went to the Women’s March on Washington and I wore a fourth here in Toronto’s march. Afterwards a friend asked me to knit 2 more for her and her teenage daughter.

As always Peter’s loving care helps me through all this. He continues to cook me marvellous meals, even adapting to my lack of taste buds but my increased sensitivity to texture. Friends have stepped up for dog walking as I’m unable to do my share. And people send loving cards and messages which really help. More and more friends have reached out to me recently with their own cancer diagnoses, especially breast cancer. It is a plague upon us. I’m glad to be able to talk with them, as those connections make all the difference.

When the chemo finishes, I get a five week break to recover and then six weeks of radiation. In theory, its side effects aren’t as bad as chemo’s ones. I hope to be done this breast cancer treatment sometime in early May. Just in time for the nice weather.

As always if you want off this list, let me know. While I love getting your responses, there is no need to do so. I do hope you go and look at the interview, just so we both remember that I’m more than chemo. In case you missed it, here is the link to the first interview as well:



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.) 

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.



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.



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.



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.



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.





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.



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.