Ok, it’s time for an update. I tried to do one last week, but my iPad froze and erased a massive post I had poured my heart into and so I ended up rage-eating half a sleeve of saltine crackers and just going to bed instead.
It’s been a bit of a crazy ride since I got to bust out of the Condo and attend the CML Conference and CMAO Awards. I’m mostly really glad that I got to experience a couple fun things before my recovery took a bit of a detour. I had my first post-transplant bone marrow biopsy on Day 60, which resulted in an empty bone tap and had to be repeated which was excruciatingly painful and frustrating. I was grateful my dad was there to hold my hand through it because that was definitely the worst one yet.
I had already been struggling with my appetite leading up to the conference and awards, but as time went on it seemed to get so bad that eating anything became challenging. I was able to eat a few mouthfuls for each meal just enough to take my pills, and as the week after my biopsy progressed I started to have lots of stomach pain and bathroom issues. I should have reported these symptoms right away, but I foolishly thought ‘they would pass,’ and then as the weekend drew closer I told myself that I could ‘make it until my next clinic visit on Monday,’ but that was a big mistake. When I went to clinic last Monday and explained what had been happening, I had already lost 12 pounds in two weeks and was having severe bathroom issues and was immediately re-admitted for suspicion of Graft-Versus-Host Disease (GVHD) of the guts.
What is GVHD? It is a commonly seen complication of bone marrow transplants but can be difficult to manage and control and can present a huge risk to recovery. Unlike when you have an organ transplant and there is risk of your body rejecting the organ, your marrow system involves your whole body, so GVHD occurs when the grafted cells from your donor identify your body as an enemy and fight against certain systems like your skin, liver and guts. While GVHD can be dangerous and present risks, it also coincides with a condition called Graft-Versus-Leukemia (GVL) where the donors cells find and attack any potentially remaining cancer cells that were not eliminated by the conditioning chemo and transplant process. This can reduce your risk of relapse, and the effect is particularly strong in people with CML so while GVHD presents challenges and risks, it also comes with a potential benefit.
The thing I didn’t realize about GVHD is how fast in can act, especially in your digestive tract, and that it can cause irreversible damage if not caught and treated quickly, so for anyone else going through a transplant, make sure you report your symptoms ASAP, intervention is key!
When I went to my clinic appointment I certainly wasn’t expecting to be straight up admitted, especially for what ended up being a surprise ten day stay, but they really don’t mess around. I was immediately placed on an NPO order which means no intake of food or fluids to let my intestines rest while they prepared me for a colonoscopy and upper scope on Wednesday, so I went about three days with no food or drink.
We switched all my meds back onto IV and IV fluids only, and just tried to let the inflammation come down. (FYI I Did NOT miss being attached to a pole 24/7.)
They started GVHD treatments right away (mostly boat loads of steroids and re-starting my anti-rejection drugs which we had recently discontinued) without waiting for the biopsy results just to be safe, and after my Colonoscopy Wednesday I was placed on a bowel rest diet which was basically veggie broth, dry white bread, jello and saltines for another 5 days. Let me just tell you, I had no idea you could survive on dry bread and jello, for every damn meal and I totally could have saved so much more money in college if I knew that haha?♀️
On Friday when the biopsies from my colonoscopy and scope came back they were able to confirm stage one GVHD of the intestines and colon and by then they were happy with how I was responding to treatment so we continued the bowel rest diet through the weekend. There were some larger sections of damage which will have to heal, but we caught it relatively early luckily and so far they’ve been happy with how things have been progressing. Mostly it just took time to let everything rest for the inflammation to go down.
Since I had to spend the long weekend in the hospital I had some visitors to keep me busy which was nice, and Bill came to see me on Sunday and Monday and we had a little Canada Day celebration in the rooftop garden at PMH and watched a movie in the shade. I’ve been trying to sneak up there for some fresh air whenever they will let me because it makes a big difference. You get stir crazy in here pretty quick!
Now it will be about reducing the steroids slowly, as they really do quite a number on your body fast, and seeing if we can keep it contained to stage one, and slowly adding regular food back in. The muscle wasting In ten days from the steroids and bowel rest diet is actually insane. I am having trouble putting my own clothes on and getting off the toilet, so I’m looking forward to slowly working some strength back up as we wean off of them. I also have serious chipmunk face from the steroids and now that they’ve let me start eating, its like all I wanna do haha. Yesterday I was able to start eating some normal food again and IT WAS LIKE HEAVEN. I dunno if its just the week of near starvation, or the steroid munchies but the hospital food here tastes like the best thing I’ve ever eaten now that I can eat some of it again haha.
So tomorrow after a surprise ten day detour of a hospital stay I will finally be getting released. I am heading from PMH to St. Michaels where I am having a drug allergy challenge I’ve been waiting for for a few months to confirm my drug allergies in case of illness/infection and then I’m stuck back at the condo because they want me to stay close. I’ll be returning to Clinic Monday and will hopefully have an answer by then about the results of my bone marrow biopsy as well. We did get some preliminary results this week, but there were some issues with them so I’ve been holding my breath waiting for them to be re-run and don’t really want to say too much more until I know for sure what the deal really is!
I can safely say I’ve learned a valuable lesson, to listen to my body more, to stop pushing myself so hard to just ‘get back to normal,’ and to really take to heart that transplant recovery is not-linear and will be filled with many setbacks. It was hard to feel like things were going so well and I was moving forward to have been knocked back like this, but it’s all just part of the process and I will just keep putting one foot in front of the other until I make it to day 100 and beyond. At the end of the day I’m extremely grateful I was able to get to go spend some time with my CML and music friends before this happened. I’m so glad this was caught early and the medical staff at PMH are just so damn great, and that each day I get really truly is a gift. Sometimes it’s hard to be in the moment and not be frustrated and just find the gratitude for what IS. Sometimes I just want my old life back RIGHT NOW. I want safety and security. I want to know I’m cancer free, I want to plan my next steps, I want to see more than a week ahead of me. But I have to stay in the moment. I have to return to the gratitude, because it’s how you get through this.
Hope you all had a great long weekend and another lovely weekend ahead of you!