Where Roy explores what it takes to get through this, and it’s not quite Courage.
I am very happy to report that 2018 has started a little better than 2017 ended. I got home from the hospital two days ago and am feeling fairly well and energetic so far. I know that won’t necessarily last very long, so I’m extremely grateful for every moment that I feel like myself and am able to enjoy the day.
I’m not much in the mood to be online, so please forgive me if I don’t respond promptly to your messages, or if I neglected to respond to your notes while I was so ill.
I was about to wish you all a year of beauty and love and grace, but that strikes me suddenly as too passive. It is within the power of each one of us to create that world of beauty, love, kindness, peace, and all the good things we want for ourselves and each other. So let us commit to that in 2018!
I was admitted to the hospital yesterday (a different hospital due to ongoing communication issues with my gyne-oncology team) to get a jump start on treatment.
Giving into my dad’s persistence, I had a consultation with a specialist in my disease (it’s rare, so such doctors are very few worldwide) in New York City last week. Because my disease is progressing so quickly again and because I got such good results from the palliative chemotherapy I did last spring and summer, she recommended that I go back on the same regimen, though at a lower dose, which will reduce side effects. She said to just go with it until there’s evidence (with more frequent scans or by my symptoms) that it’s not working anymore or until the side effects are intolerable. That sounded quite reasonable to me, so I decided to go ahead with it.
Then I had my failed consultation with my former team at home (they don’t take so kindly to second opinions) and miraculously (thanks again, Dad) managed to switch to another doctor at another hospital (who generously came in just to see me right before leaving for his vacation). Such feats are not easy in a publicly (under) funded health care system.
Then I had a second drain of 3.7 bloody liters, with my hemoglobin count already down to 68 after two transfusions the week before. However, tests since admission show my hemoglobin count had since dropped even further to 56 (normal range is 120-160) with a CT scan showing a new crop of tumours responsible for bleeding into my abdomen. So they topped me up with three transfusions overnight to a more manageably anemic 95 count.
But there is concern that the chemo will cause further hemorrhaging and lower my blood counts dangerously. So they will keep me in the hospital until next week to monitor all that. I can’t complain about being here, though! I’ve got a private room in a new pavilion with an unobstructed northern view of very cold Montreal, all the way to the Laurentian Mountains. It’s very peaceful and the care has been remarkably kind.
So thanks, Dad, for your obstinacy, your generosity, and your love in getting me here.
And once again, please donate blood.
And thank you to all caregivers who manage kindness and cheerfulness even when tired and overworked. It makes all the difference.
Last year I received several blood transfusions and put out a call for friends and family to donate blood, especially as I no longer can. (Also to please sign their organ donor cards! I have a friend waiting for a healthy kidney.) Our blood supply in Quebec is all from unpaid donors, which is impressive considering the many restrictions to keep the supply safe. I am anemic again due to abdominal bleeding from my sarcoma, and have been prescribed two transfusions tomorrow. I feel bad taking from our blood bank without being able to give back. Since I’ve been ill many of you have asked if you can do anything to help. Could I ask a few of you to donate on my behalf? (To be clear, I am not asking for direct donations; yours would go to someone else in need.) This is an easy way to give during the holiday season! Thank you!
I got through my last goodbye hug with Nathan at the open door of a taxi in the middle of a busy street in London on Monday morning. It was a hard moment.
But I’m glad I didn’t put the visit off. In my last week there my condition began to decline. My wonderful reprieve is over.
It feels a lot like last February, before my surgery, with my tumours growing exponentially and bleeding into my abdomen. This morning I had four liters of blood drained (the medical team was alarmed, as they were expecting straw-coloured fluid—but no worries: they’re keeping these jugs out of the blood bank!) This means I’m much more comfortable for the moment, but in general I am expecting a continued decline. I see my palliative doctor tomorrow and recently had scans, so perhaps I’ll have more news to share tomorrow.
I also seem to have caught my first cold since getting so sick!