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:
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
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.