Today is a big milestone for me! It’s day 100! 🎉🎉 After transplant, this is one of the first and most important goals to reach on your road to recovery. After day 100, it’s year one, and then year two. If you can make it to year two without relapse, and with minimal episodes of severe chronic Graft Vs Host Disease (GVHD) your odds of long term (10-20+ year or more survival post transplant) increase hugely. I am so happy and grateful to have made it this far. In a lot of ways it flew by, but also sometimes seemed to stretch on forever.
As many of you saw in my Facebook Live video from a few weeks ago I am officially ‘CANCER FREE’ as of my last CML ‘BCR-AB’L test, which is the test that looks for remaining CML Philadelphia chromosome mutated cells.
At my Day 60 Biopsy there were some CML cells still present, but luckily for me, The acute gut Graft Vs Host episode I experienced that had me re-admitted to the hospital for ten days was enough to trigger a ‘Graft Vs Leukemia’ response and push me into full remission, which I am SO thrilled about. I would take every single day I spent in the hospital eating jello and bread again times a million for this result, without a doubt. As frustrating as it was at the time, it happened for a reason! I hadn’t yet experienced any real GVHD and my doctor was hoping that I would for exactly this outcome. We are both thrilled and excited. Moving forward with the transplant was the right decision for me, the outcome was great and I am extraordinarily lucky to have had the successful and mostly easily manageable recovery that I have had so far. I truly feel like the luckiest, most grateful girl in the world, every single minute of every single day.
So, what happens now? 🤷🏼♀️
Well, I may be ‘cancer free’, but a lot has been going on the last few weeks and there is still a huge road of recovery ahead, so I thought I would share a bit about what that has looked/looks like so you can better understand. Before I get into it, Some of what I’m going to break down may sound like I’m complaining and I just want to be clear that I 100% am not. I am uniquely aware how lucky I am to be in this situation, but I do want to expand on my experience so other transplant patients and my friends and family know what the experience of recovery is really like.
When I was re-hospitalized to treat my Gut GVHD we had to start very high dose IV Steroids to calm down the donor cells that were attacking my bowels and colon so that we could stop further damage from occurring. I already had several feet of damage unfortunately by the time we started and that will take a while to heal.
I also had to re-start my anti-rejection drugs to help relax the effect of the GVHD. Much like colitis, this damage prevents me from properly absorbing some nutrients, and the combo of steroids and anti-rejection drugs make it challenging to absorb things like protein, potassium, calcium and magnesium which have been chronically low for for me for the last six weeks while we went through these treatments. I have been on a high-protein diet and take lots of supplements to try and keep my levels from dropping too low. Additionally, the steroids at high doses weaken your bones so I have been on numerous bone strengthening drugs to try and make sure my bone density dose not decrease too much during this time.
Once I got out of the hospital and my stomach could handle it we switch all my drugs including steroids back to oral. Steroids are kind of this magical drug that make you feel strong and invincible as they reduce inflammation, while really doing a number on your body. They hugely affect your sleep which I haven’t been getting much of (4-5 hours a night), but they give you so much energy you barely notice.
I think over all though, one of the hardest parts of being on the high dose steroids has been the amount of strength I have lost. I’ve experienced significant muscle wasting in my legs to the point where it is now a struggle to go up stairs without assistance or using a railing to pull myself up. I also struggle to get up out of chairs, out of the bath and off the toilet which is super embarrassing and makes me feel like I’ve aged about 50 years. I’ve fallen a couple times because my legs just were not where I needed them to be and wasn’t even able to get myself up off the ground! It’s kinda nuts.
This effect was unfortunately exacerbated by the fact that I have been having serious trouble with my blood pressure since my transplant that we can’t seem to get under control. I am now on multiple blood pressure medications, which combined with the steroids have caused excessive Pedal Edema (Foot swelling) to the point where I can only be on my feet for an hour or two a day before I have to elevate my feet for pretty much the rest of the day or lay down so that they don’t get any bigger. They literally get SO FAT I cannot walk anymore. The size of them is legit unbelievable haha. The only shoes I’ve been able to wear for the last six weeks are massive men’s size sandals. I have like Cankles upon cankles😂
So, I haven’t been able to get as much activity as I would have liked/needed to maintain my strength during this time and that has been really hard for me. It is going to take me months of dedicated work to rebuild my strength to be anywhere close to where I was before transplant, and that’s a hard blow.
The other really hard part about being on steroids is that they make you retain a lot of water, and gain a fair bit of weight. They also cause the weight gain to be concentrated in specific places on your body like your face, neck, upper back (yeah you get a buffalo hump, it’s a thing) and abdomen. It often results in what is dubbed ‘moon face’ where your face just fills right out like a full freaking moon. I in NO WAY resemble myself. It’s been pretty hard to see my face and body change so much over the last six weeks but I just keep telling myself this is all temporary, that the GVHD is what helped officially cure my cancer, so it’s a good thing it happened, and that in a year or so I will be back to my old self looks and energy and strength wise, and this will all be in the rear view. I just try to focus on the immense gratitude I feel to be alive and cancer free and that makes it all worth it.
For the last two weeks we’ve been working on weaning off the steroids as we reach the end the GVHD treatment. Steroids also do a number on your hormones like cortisol etc, so they have a fairly big effect on your moods and during the weaning off process I’ve definitely been a bit emotional at times. Bill has been so understanding and comforting. I’m always so appreciative of how hard he works to put himself in my shoes and say what I need to hear most in the moment.
I also experienced quite a few episodes of severe weaning pains in my legs in the night, which were actually insane. It is easily one of the most painful things I think I’ve ever experienced, and way worse than the engraftment pain from my transplant by far. It basically wakes me up out of a dead sleep almost always at the same time at night when it happens, and feels like someone is smashing my knees and ankles with a sledgehammer repeatedly.
After the first couple of times where Bill literally had to hold me while I was sobbing waiting for tylenol to give me any sort of relief, we were able to work with my transplant nurse to find a better solution. I’ve been taking a long acting 12 hour Advil before bed, and then when the pain wakes me up I take a second liquid gel. Usually I can handle the pain at that point and eventually fall back to sleep after about an hour when it eases up. Sometimes I have to get up and have a hot bath with Epson salts which helps a bit. It doesn’t seem to happen every night, but when I spend too much time on my feet or use my legs too much in a day, it happens without fail. I was told this can be quite common during the waning process and there wasn’t much I could do but tough it out!
Today is officially my first day off of steroids after finally weaning fully down and I’m pretty excited to hopefully start feeling a little bit more like my normal self. I have been working for Bill from home for a few hours a day doing administrative stuff for his business and answering the phones which has been nice because it’s given me a bit of a feeling of purpose again and has helped me get back into a little bit of a routine. I’ve been enjoying cooking, and I have a new found love for vegetables and fruits now that my tastebuds are coming back! I’m currently obsessed with steamed broccoli, green beans and watermelon.
Because of the immune suppression caused by the steroids and the anti-rejection drugs, It unfortunately caused the return of my CMV infection so I am back on some heavy duty anti-virals for that, but it’s nothing we can’t manage.
Obviously my body is still recovering from a transplant, growing new cells, and healing from the chemo and that’s a long term process. I’ve been told I can expect to return to work in 6-12 months, and last week was given the go ahead to begin driving again! I still have to be careful about being vigilant for exposure to infections as I do not have a fully functioning immune system and won’t for another 6-12 months and that is my biggest risk to proper recovery during the first year aside from relapse and chronic GVHD. I still can’t be exposed to unvaccinated people or children/parents of children that have been recently vaccinated as I lost all my vaccinations during the transplant process and will not be able to be re-vaccinated for 1-2 years. I am still unable to go in the direct sunlight, garden, be exposed to chemicals, smoke, bonfires, and have to try my best to avoid bug bites etc. But otherwise life is starting to feel like it’s beginning to return to a bit more normal. I get fatigued pretty easily and still have a nap almost every afternoon, but that’s ok, I’m healing!
Overall I am doing really well, and I am so happy and grateful to be alive, to be back home with my amazingly strong husband who has been such a rock and support to me through this process. It’s been great to watch movies, make dinners together, sit out in the shade and just soak up my second life. I am endlessly grateful for this opportunity that has been given to me, and I have so many big plans for what I want to do with it! I just have to keep reminding myself to take it one day at a time, slow and easy. It’s hard for me to not push myself, but I know my body still has a long way to go to recover and I actively try to give myself permission to just not need to ‘do it all’ or ‘get everything done’ on my to do list every day. Sometimes it’s a battle and I feel like I’m totally failing and not doing enough, but Bill is great at reminding me that I’m doing enough by just being a live right now. This is what I wanted, to live. And that’s enough for right now. ❤️