A blog from 38 year old John Carta, sharing his experiences dealing with a rare Non-Hodgkin's Lymphoma (T-Cell, systemic Large Cell Anapalastic). He lives in Ottawa, Canada with his wife and two sons. As all stories, this story is best started from the beginning.
Wednesday, 4 February 2015
A word on steroids
I wish I was on the same steroids Anderson Silva is on.
Unfortunately he got the ones that make you faster and stronger. I get the prednisone and the cortisone.
The prednisone and the cortisone do pretty wonderful things at the start. For instance, in my case they were key in fighting graft versus host disease.
However, take the prednisone or the cortisone for long enough and side effects start piling up. A quick internet search shows the horrific side effects these steroids can have. From depression and emotional trauma to muscle wastage and osteoporosis. I might have mentioned this already, but I find myself suffering from the muscle wastage in a huge way. Far worse than at any point previous.
Imagine sitting down on your couch and then the depth of panic when you simply cannot get off it. That's happened to me. Or not being sure you can even walk to your car safely to get to the hospital. Or the simple act of walking to the bathroom becoming a kind of high wire performance in which you just hope you don't fall and become some kind of sad Internet story about a dude that cracked his skull on a toilet bowl.
The weakness is really beyond imagining.
The hospital has just put me on a hardcore rehab plan. It will be a long, long process to get back to normal.
And just so people don't get too worried, overall health is actually pretty good. I'm just weak as a puppy, but my liver and kidneys are continuing to heal. And the transplant itself I think could only be described as a success. I am assured that even though this will take a long time to fix I will be back to normal.
I continue to appreciate all the good wishes I'm getting, all the good vibes people are sending me, and all the help people are giving my family. The support we've gotten and continue to receive is of immeasurable value to us. I simply cannot thank everybody enough but I will try to find a way in the near future. I promise it will involve a giant roasted pig, a lot of smoked meat and other delicious things.
Part of the fight now will be just dealing with the boredom of being in the hospital. But my days should be full of exercises and rehab. Lots of hospital food in the future. I hope today's mac and cheese is not a sign of things to come. If tonight brings Salsbury steak imma jump out the window.
Oh, if you're in the mood for something gross, I have a new tube installed. Not unlike the lung tube I had during the worst of my lymphoma, this one is in my stomach and allows my nurses to drain a ridiculous amount of fluid I'm building up my stomach from my earlier liver problems. Consequently, I have lost approximately 20 kilograms in the last week. Crazy. Take that, Jenny Craig.
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John, you are fantastic, an inspiration and I can see your excellent and well-honed government communication writing skills shining through. I can't wait to see you on a sunny day enjoying a cold one at a bbq. - Sarah
ReplyDeleteJohn - I don't know you all that well, but I am a big fan of your wife so that makes me a big fan of you. :)
ReplyDeleteThank you for blogging "all the stuff" - authentic writing is difficult to do, let alone to share. This blog allows me to follow along; to send good vibes to you and Brooke and your family. To know when to take a pause and snuggle my baby tight in gratitude for all I have in this moment. To remember that this moment might not last. To know when to feel angry at our complicated health care system. To be grateful for the excellent care you, and others, receive. To remember to live big, eat well and love large. So, thanks. Hope today is a good one!
Hello John, I don't know you well either but you and your ever-loving Brooke have welcomed my husband Mike and I to your home to share clothes your boys grew out of, You are strong and will be home soon, for good. We will come visit and share laughs.
ReplyDeleteJennie Thom <3
So Brooke mentioned it's 100 days since your transplant and that is a significant milestone. Congratulations to you and Brooke for staying strong and moving forward. Am also enjoying your picture of hospital food - they always make me laugh. I'll see what I can do about that very soon...some good food news on the horizon!
ReplyDeleteI am so happy to hear that you are recovering and will beat this disease John. I know we have not talked in a couple years but you have been in my prayers since I heard from NRCan colleagues last year that you were sick. Your communications expertise comes out in your writing of these blogs. Through them, you have clearly found a way to continue to inspire and guide so maybe people just like you did at work. Keep it up John. Here's to your growing strength! - Chris Hinds
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