Cancer Update #18

Jan 3, 2018

Dear Friends and Family,

My recovery from the brain surgery on Dec 15 is going in leaps and bounds. I can read again – thank god. It is hard to imagine living without reading. So much of who I am is tied up in reading and writing. Immediately post surgery, I was very wobbly when I walked, initially using a walker. I’m not wobbly so much now and today I ventured out by myself on public transit. Most of all cognitive function is returning. There were some very odd sensations the first week home when I was challenged by sorting and sequencing. I couldn’t figure out where the different categories of garbage went – compost, recycle, trash. I’d stand in the middle of the kitchen and puzzle. Or I’d put all the breakfast makings on the counter and then stare at them – what do I pick up next? This was both curious and terrifying. I’m greatly relieved to be able to do these ordinary logistical sequences that I’ve always taken for granted. And I’ve returned to computers. My iPhone no longer looks like a foreign object.

Some of the missing peripheral vision has even returned. At this point it is sort of patchy. As I read a line of text, the left side of the line sometimes isn’t there, until, of course, I turn my head and there is it. There is an odd repeated image that happen sometimes. I think reading again is learning how to put the information together in a new way. Everything is much slower, but who cares. I’m just grateful I can read. Part of my rehab will be attending a “low vision clinic”. Presumably they will teach me some more strategies for coping with these new eyes.

This is what the neurosurgeons said was most likely to occur. Brain surgery involves poking and cutting in the brain (!!!) and, like any other injured part of the body, there is bruising and swelling. As that settles, cognitive function is mostly returning.

I’m now in the land of metastasized breast cancer. That means more treatments and close monitoring. On Friday we meet with the Brain Mets team. That’s the “brain metastasis” team. We’re talking brain radiation. It all seems very sci fi. And then I go into full body MRIs every 3 months.

It hasn’t even been three weeks since the surgery. I am amazed at the human body’s capacity to heal; I’m also deeply appreciative for a publicly funded medical system which did emergency brain surgery on me less than 48 hours after arriving at Emergency. Mostly though it is the love and supportive of my friends, family and community that keeps me going. And central to all that is Peter who has brought me tenderness, attentiveness, deep love and marvelous meals throughout. This isn’t the journey I would have chosen, but since I’m on it, I marvel at the hidden treasures it offers me.

Thanks you for your letters, cards, books and gifts. Thank you for dog-walking, transportation, form filling out, food, research, love and encouragement. I feel held by all of you.

As always, feel free to pass the letters along. I love getting your responses, but I probably won’t reply as there are many of you and I’m trying to get into the studio between the 5 million hospital visits.

Love,

Diana

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Cancer Update #17

Dec 14, 2017

Dear Friends & Family,

I’m writing with very bad news. I was diagnosed this week with a cancerous tumour on my brain. It is probably the breast cancer metastized. I am in hospital now awaiting emergency brain surgery. Just saying those words, “brain surgery”,  horrifies me, as I’m sure it does you. I feel so defeated.

For the last few months I’ve had an odd set of disparate symptoms which last week finally coalesced into a whole picture. I’ve been having what I call a cognitive slide. I notice it most clearly working on the computer. Simple sequential tasks which I’ve done a million times – moving files from one folder to another, remembering how I’ve organized the files in a particular project – suddenly seem very challenging. Instead of doing these tasks suconsciously, I have to furrow my brow and think hard to do them. For awhile I just made jokes about the aging brain, but after awhile I realized I was losing ground more rapidly. There were other weird symptoms – I started bumping into things. I’d turn to squeeze by a chair in the dining room and I’d miss. I’ve become more unbalanced recently, even falling over once while crossing the studio floor. I started having sharp headaches on one side of my head. A couple of times I was reading and it seemed as if half the page wasn’t there, but as soon as I’d look directly everything was fine. Finally last week I had a near miss. I was driving and I grazed the passenger mirror against a parked car. I realized I was but an inch away from the other car. I hadn’t seen it.  I drove home very slowly and quite terrified. It was as if my peripheral visio had a hole in it. What was I going to miss? Who was I going to hit? I decided it was too dangerous for me to drive. After this, the pieces began to fall into place. A stroke? A tumour? Alzheimer’s or dementia?

I told Peter on Saturday, saw my doctor on Tuesday and she sent me immediately to emergency. Wednesday I spent waiting for a bed and waiting for a visit with the neurosurgeon. Here I am on Thursday awaiting surgery – probably on Friday afternoon but that could change.

The neurosurgeon said I’d be up walking and talking shortly after the surgery. The tumour is is in the left occipital lobe, right in the vision center. There is the risk of further damage in this area from the surgery; on the other hand that’s the advantage of 2 sides to the brain; the brain that changes itself and all that.

I can’t believe I have to do All This all over again. All this hospital world – listening to patients talk about their bowel movements, listening to machines beeping incessantly at me, listening for doctors to give me a few minutes of their overworked time, let alone all those life and death issues that hang precipitously over head.

I hope still to do my show in May. Thats when the spring flowers are out and the earth reminds us that joy still wanders the planet if only for moments.

Feel free to share this letter with anyone. I look forward to getting responses from you, but I won’t be replying. Please don’t come and visit me for now.

Love,

Diana

Cancer Update #16

October 5, 2017

Dear Family and Friends,

My last Cancer Update letter to you happened while I was undergoing radiation. That finished at the end of April and here we are in October. I’ve continued to have an intravenous breast cancer treatment called Herceptin every three weeks. Herceptin isn’t exactly chemo, but it is related. It targets proteins that grow on the surface of the cancer cells – or something like that. They’ve explained the mechanism to me a few times, but it doesn’t quite stick – “genes that overexpress proteins, monoclonal antibodies, antigens and targeted cells.” Got it?

So the radiation has had some side effects. Initially there was sunburned skin and sores on the radiated breast. That settled down and then pieces of my breast became hard and leathery. Then, two months after the treatment finished, my breast began to heat up, swell and become very heavy. They (you know they are) said it was normal. The lymph system was reacting to changes in the tissue that radiation brought. It would probably go away in time.

A day arrived in July when I finally had a symptom that clearly had nothing to do with cancer or its treatment – itchy ears. How weird is that? At last I had a reason to visit my GP, who I never get to see anymore because I have so many different teams to visit – the renal team, the hematology team, the radiation team, the liver team, the medical oncology team and the Maple Leafs. Ok. Maybe not. My GP didn’t seem too worried about my strangely itchy ears and off I went to BC for the month of August. While there, my still hot and heavy radiated breast began to itch. Eventually it broke out into a red and bumpy rash. Then I got some other itchy patches. By this time I was back in Ontario, so I took myself off to the radiation team. The doctor there didn’t quite throw her hands up into the air, but she might as well have. She said it was most definitely not a radiation problem. She pinged me off to a dermatology team, but they couldn’t see me for another week. Meanwhile my renal team was worried, so they ponged me off to my GP in case it was shingles. She pinged me to a dermatologist who could see me sooner and that one ponged me back to both my medical oncology team and my renal team (double shot). My medical oncologist can only be accessed through the breast cancer triage phone line. I pinged and ponged through that system and he finally called. After listening to my tale, he said I was one of the very rare (scary words in the medical world) people who has a drug reaction to Herceptin, itchy ears and all. Lots of pinging and ponging to get right back next door to the room where I saw the radiation team. If only they would talk to one another.

So now I am off Herceptin, though, unfortunately it stays in my system for about 5 months. I goop myself up with a topical corticosteroid as I still have lots of red and itchy patches on my torso. Nonetheless I am relieved to know what the problem is. This too will pass.

Soon they take out the ‘port’ that is inserted under the skin in my chest wall. (This is to make drugs in, blood out much easier.) Then I’m done my breast cancer treatments. Of course, I do always remind myself that Cancer #1 will make a return visit at some point. That’s a given.

It is odd to think of being done, or anyway this hiatus of ‘done’. Who am I now on the other side of two cancer treatments? The body is a little worse for wear, but isn’t everyone’s? The spirit seems surprisingly intact.

I continue to be curious about how people live with long term, chronic illnesses and cancer in particular. I’ve discovered that there is a world of “illness narratives” out there. Like any new world I’ve ventured into – alternative schools, Outward Bound, vegetarian diets, feminist theatre, pottery, Unitarianism, or gardening – it has been living here all this time like a parallel universe. I hope to continue both writing and making visual art about the discoveries I am making in this new territory. If you haven’t already done so, you might enjoy seeing my artwork & writing featured both in and on Ars Medica. It is an online journal about medical humanities. Here is the link:

http://ars-medica.ca/index.php/journal/issue/view/24

The easiest way to read it is to download the whole issue. Take a look at the editorial as well.

I’ve added a few new names to this list. If you don’t want to be on it, let me know. As always, please feel no obligation to respond to this letter. I have now posted all the letters on a blog at

https://cancerportfolio.wordpress.com

Feel free to share the URL if you think it would be helpful to anyone. For the Torontonians on the list, I’m happy to announce that I’m having a show of my cancer art next spring at Propeller Gallery, April 29 – May 13, 2018.

Love,

Diana

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: http://tinyurl.com/m2uhsgs

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.

 

Love,

Diana

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:

http://www.suitecitywoman.com/2017/01/20/qa-on-creativity-and-space-with-diana-meredith/#more-1255

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:

http://www.suitecitywoman.com/2017/01/20/qa-on-creativity-and-space-with-diana-meredith/#more-1255

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

Love,

Diana

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

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