It’s been almost six months since I wrote an update last and I figured it was finally time. Like many months before this, I’ve let week after week go by waiting for some kind of huge breakthrough to happen. To get close enough to the edge of this land of limbo to touch, or even taste what full recovery might feel like. I wanted to come back to clinic in January and hear good news, but I didn’t. So, instead, we changed some medications and started again at trying to tame my Graft vs Host Disease.
It began to feel maddening, week after week, adjusting one small thing and then waiting in anticipation to see if it would work- If my donor cells would calm down and stop attacking my liver. You know how they say insanity is repeating something over and over and expecting a different result? That’s what it felt like. Each time we thought we had found the right combination- we would be proven wrong by the next weeks counts. Each week that passed was one more week on steroids. It was easily one of the most frustratingly unpredictable and emotional chapters of this journey for me and at times it felt never ending.
As March approached, I was anxiously looking forward to my ‘First Birthday’ on April 18th. For most people the one-year mark not only signifies increased odds of overall failure free survival, but if you are off your immunosuppressants and have normal counts, you can get re-vaccinated and generally resume all your old activities without restriction. Like usual, I don’t fit in to the ‘Most People’ club. I had been hoping that my liver would calm down and I would be able to stop my immunosuppressants so I could have a glass of wine for my birthday. I was also hoping to get my vaccinations so I could be around my friends and family more without fear of catching an illness that could be deadly for me. No such luck yet.
When the COVID Pandemic was announced in March, I was in the middle of trying a combo of immunosuppressants that had been making my blood counts very low. I was already at increased risk of infection and so I hunkered down at home. For weeks I didn’t go anywhere except the hospital and back.
My husband was home due to COVID as well and I have to be honest… It was one of the best times we’ve had in a really long time. We have both worked extremely hard at our careers, and we haven’t had a ton of free time for each other; House renovations and cancer definitely didn’t help with that.
When I was first told I needed a transplant all I wanted in the whole world was to just spend time with my husband (Yes, I’m a cheeseball). I didn’t care where we were or what we were doing, I just wanted to spend time with him. I wasn’t sure how much time I would even get to have, and I just wanted as much of it filled with his presence as possible. (I know, I’m a stalker haha)
My view of what truly mattered was greatly narrowed during this whole transplant process, so to spend these last couple of months with him working on projects around the house, watching movies, cooking meals, sleeping in, and laughing at his jokes has been one of the greatest gifts I could have ever received. So- amidst all the craziness and chaos of Corona, that’s what I chose to take away- that it gave me the most treasured and valued time with the person I love the most. Now no matter what, I will always have that time.
By Mid-April we had tried every possible combination of drugs and doses that are usually used in front line treatment for Chronic Graft vs Host with no success. I was frustrated and worried. At this point I had been on steroids so long they were beginning to cause permanent damage to my body.
On top of the significant weight gain, I was beginning to experience Bone loss/deterioration, especially in my jaw and lower spine. I developed cataracts in both eyes. My skin, now devoid of collagen, literally began to injure at the slightest scratch. It would then bleed never endingly because of my blood thinners and take forever to heal because of my poor circulation and crap immune system. Not only would it wound easily, but my skin would tear apart on its own- almost like stretch marks, but everywhere and so wide and deep that you could see all my veins through the thin pieces of skin that remained. It was so painful and sensitive it sometimes felt my body was physically going to rip apart. My muscles began to waste and I began having vascular and cardiac issues causing excessive fluid retention that was making it harder to move and breathe and was often so bad in my feet I couldn’t walk for most of the day. I’d get a couple hours in the morning on my feet and then they would be so huge I physically couldn’t stand on them anymore.
My doctor had seen the writing on the wall and had begun working on getting me permission and compassionate coverage for a drug called Jakavi, which had been initially approved in the US for acute GVHD. The studies on it were great and the stories from people who had tried using it in the forums were extremely promising. It’s hella expensive so it took a little while to get coverage for it. When we finally got clearance, I started taking the Jakafi and crossed my fingers it would work better than the last immunosuppressants we tried.
In early May a small abrasion on my leg turned into rapidly spreading cellulitis that oral antibiotics couldn’t stop (Thanks immunosuppressants). I was re-hospitalized on the transplant unit and put on IV drugs for a week until they could control the spread. I was a bit nervous being hospitalized in the middle of COVID but I find they are honestly pretty great at PMH. It put me at ease. It also made me more comfortable to see the friendly faces of some of my favourite nurses.
Because of COVID I wasn’t allowed any visitors at all, and I was in isolation the whole time so I rarely even saw nurses or doctors unless it was something important. Each time they came in my room they would have to fully gown, glove and mask up and then throw it away when they left, so they would try to limit their visits so they didn’t wear down their supply of PPE. It was a long and quiet, Netflix filled week.
While I was in the hospital I had the pleasure of being tested for Corona Virus twice (Negative both times) but somehow managed to test positive for a more regularly seen corona virus- Coronavirus NL67 without even knowing I was sick. Guess they all can be sneaky little buggers! While I was in the hospital they also discovered that my immune system was not effectively making immunoglobulins after transplant which are an important part of your defense against illness. I had what they call an IVIG Plasma infusion which is kind of like a blood transfusion but instead of a bag of blood, the bag is filled with like 28 other people’s Immunoglobulin-containing plasma. I will continue to get these monthly until my body starts to make enough of its own.
When they were happy with my progress I was sent home for a week with an IV pump of more antibiotics to wear 24/7 until the infection cleared up completely. Side note- after eating a lot of cheese and egg salad sandwiches, the dietician taught me how to hack the hospital menu and get a bacon cheeseburger with a spinach salad… So that was pretty much the highlight of my week.
The infection slowly cleared up, I got to ditch my pump, and things began to look like they were heading in a real direction of progress. Each week since we had started the Jakavi, we had been able to reduce my dose of steroids by a small amount without causing a freak out inside my body- something we hadn’t been able to do for the last six months. Week after week we slowly kept lowering the dose until that brings us to today- I was supposed to stop my steroids completely today, which would have been a lovely birthday gift.
Unfortunately I am experiencing some withdrawal from the rapid taper so I’ve been pretty sick for the last week. Steroids essentially replace your bodies cortisol, so when you take high doses for long periods of time your body stops producing its own. You taper down your dose to give your body a chance to slowly turn back on and begin making cortisol again, but sometimes the gap between tapering off and your body producing enough on its own is a pretty fine line. The doctor gave me the option of increasing my dose again for a bit to let my body adjust or to stick it out and just get off of them, and we decided to compromise with me continuing to take the small dose I am on now for just a little bit longer. Hopefully the end will be in the next week or so! I am SO FREAKING HAPPY ABOUT THAT.
But…just when I think I’m finally getting somewhere…
As a result of immunosuppression I have experienced repeated reactivations of CMV (Cytomegalovirus) and while that has been frustrating because we have to change my anti-viral treatment each time it happens to a heavier drug, we have always been able to get it under control and reduce its level to undetectable within a couple of weeks.
About five weeks ago my immune system was extremely low and my CMV was reactivated for a 9th time. We started the usual increased treatments, but the viral count only continued to increase. My team suspected I had developed a mutation in the virus making it no longer responsive to typical treatments. After five weeks of treatment with no effect on my viral load I will now have to be moved on to a heavier drug called Foscarnet, that can only be delivered by IV. They said I will likely need the IV for about a month, so I will have a central line put back in and wear a lovely little fanny pack with my pump and IV bag in it 24/7. I was supposed to start yesterday but I got one last weekend to enjoy summer freedom first.
I know that probably all sounded like a lot of crappy stuff and it kind of is. This definitely hasn’t been an easy year for me, and I know these last few months were really hard on everyone.
I say ‘I’m good’ a lot to people because explaining all this to them feels impossible, and the truth is… I am ‘good’. I may get really frustrated some days with the limitations that I am trying to overcome and the current state of my situation. But I am good.
Sometimes I feel like an overwhelming failure- a wife who can no longer have kids or be intimate. A musician who never made their mark. A friend who has disappeared from most people’s lives because she feels like a burden and a downer. A sister and aunt who has missed some of the best young moments of her niece and nephew’s lives. Of course I have those doubts. I definitely have those feelings, those bad days.
The truth is, I’m two months into my second year of transplant recovery and it still kind of feels like there is no end in sight and that does terrify me. I’m still spending two days a week almost every week at the hospital. The fear that I have not one, but two of the biggest strikes against me for mortality risk and long-term survival- GVHD and Refractory CMV is hugely overwhelming. Instead of worrying about relapse, I worry more that I will die from GVHD related issues or an ordinary infection that I just couldn’t fight. It’s hard to put the fear to bed sometimes. But I am good.
I’m good because over the last year what I’ve learned is to live in the now. The right now. To put down my phone, to walk away from my computer. I don’t have to achieve or accomplish anything to be worthy. I shouldn’t compare myself, my life or my achievements to others. A day spent in the sun reading a book is not a day wasted. It’s a day reclaimed. My ego may feel like my enemy- but it is also a part of me that created who I have become. My body is just a vehicle for my soul. My shame is a story that I can change the ending to.
I’ve learned to release my expectations, to voice my needs and I’ve continued trying to unlearn my ‘Becky’ bullshit- like the fear that if I don’t reply right away to someone that they won’t like me anymore; Or the idea that this excess weight has suddenly rendered me an unloveable troll that should be banished to the woods forever.
I’ve found that when I slow down and connect fully with the people around me, it’s a much more enjoyable experience for everyone. I am loved and I get to love so many wonderful people. I get to smell fresh cut grass, watch the pink and purple sunsets at my cottage, smell the fresh ground after it rains. I get to fall asleep holding my husband’s hand. I get to create so many different types of art and expression. I get to put way too much cheese on my burgers and lick my sticky marshmallow fingers after making smores…
For most of my life I thought that I would only be happy when I reached some pre-determined end destination or goal. When I lost another ten pounds I would be happy. When I got a top 40 I would be happy…. But somehow nothing ever made me happy and the target felt like it was always moving. This last year has been the most challenging year of my life. I’ve had to figure out who I am and what is left, when everything I thought defined me was taken away.
Who am I without music? Without money? Without the physical identity and ability I was used to?
Who am I when I can’t distract myself or disconnect with alcohol or weed? How do I handle the extremely overwhelming and uncomfortable feelings of change and evolution and learn to be at peace with them; To radically accept the now and in doing so- find peace?
What I’ve learned over this past year of growing and fighting and changing….is that happiness was here the whole time. I just wasn’t looking in the right place.
Happy 1st and 35th birthday to me… you only live.. twice?
Here’s a look back at the last year- some things are transplant related, somethings are just things that make me happy, none of them are in order haha. <3