Roy’s Blog: Courage

Where Roy explores what it takes to get through this, and it’s not quite Courage.

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2018 Update

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!

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Roy’s Blog: Game Shape

Another post by my sweet man: Game Shape


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Late December Update

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.

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On Pain and Perspective

So far today, I have not been overcome by fatigue. Nor have I struggled against pain and discomfort. It’s not quite noon yet, and I’ve been up since eight. So this has been a good morning. I’ve even had enough brain power to try to write a little. I can tell when my brain power is low, however; I won’t be writing anything brilliant. But I might remember a few thoughts and jot them down, or fill in some details where I’ve just got sketchy notes.

I’ve had few good mornings in the past couple of weeks. Discomfort from abdominal distension and low energy from anemia have got me down much of the time. I am struck by how radically these conditions shift my perspective on the world.

When I am well, I wake up cheerful. Before I even open my eyes, my outlook on the world and the day is positive. I expect good things. And generally, my days are filled with good things, like love. I am able to appreciate any incidental beauty the day brings to my window. I warmly accept affection. When things don’t go my way, I can often still be gracious. I get excited about new ideas. I want to do things.

When I am unwell, all this is reversed, and I am miserable. I feel sour, like the dried up, moldy lemon I’m sure I would find if I opened the fruit and vegetable drawer. It’s hard even to smile—I can feel my yellowing face pinched in a horrible, self-pitying grimace when I try. Yuck. It’s really hard to like myself like this. When things get really bad, the whole world, with me in it, is ugly.

I don’t know how people who suffer with chronic pain or fatigue, whether physical or emotional, manage. Sometimes I think all the people we pass in the streets who don’t smile are probably unhappy and stressed or unwell and suffering. There is an awful lot of pain in our world. Those of us who are blessed enough to not be suffering, it seems to me, could take on a greater burden to relieve those who are in pain or exhausted or depressed. We can see this happen sometimes when a stranger offers to hold a door or help carry a stroller up a flight of stairs. Everyone smiles.

I was extremely blessed in my life to live with so much wellness and vitality until recently. It made happiness so much easier. I realize now I could have done much more to share that gift with others. So many never know the joy of a healthy body and a light spirit. Perhaps we could all think more about how to balance this vast inequity, especially as the well person who gives is rarely made weaker or less well for the gift. It can be something grand, like a big donation for the holidays. Or it can be a small, personal gesture. Or both. But I’m pretty sure everyone will benefit.

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Please Give Blood!

blood drop

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!

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December Update #2

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!

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