Man a lot can happen in a year. This time last year I was preparing for a transplant. Filling out forms, trying to find a donor and wondering if I would make it to another Christmas. Now here I am, cancer free, feeling extraordinarily lucky and grateful to be on the other side.
It’s been a really long time since I’ve written a post. I’ve tried to write one a million times, but between feeling like I never have any new or good news to share, and feeling guilty about my conflicted feelings of not just appreciating ‘being alive,’ enough to set my other feelings aside, I’ve been avoiding it. I’ve been avoiding a lot of things to be honest (especially messenger), so if you feel like you haven’t heard from me in a while, It’s not you, it’s me! Every week I tell myself, maybe next week my counts will be better and I can share a good post. Maybe next week something will change and I can write a blog about being at the top of the roller coaster, instead of upside down and forever loopdy-looping. Maybe next week I will feel better about myself. Maybe the shame will have eased; maybe I will be able to face myself in the mirror.
For the last five months I’ve been fighting what feels like an endless battle against Graft Vs. Host Disease (GVHD)- the double edged sword that put my cancer into remission, but is now persisting and wreaking havoc throughout my body. I was warned about GVHD before my transplant, along with all the other possible complications having a bone marrow transplant would bring. I was told that GVHD and Relapse are the two most common issues to occur post transplant. I was warned to prepare for a ‘new normal,’ like I mentioned in my last post.
I didn’t fully understand how long and complicated recovery would be, especially when GVHD is involved. I didn’t understand how serious and dangerous GVHD can be if it isn’t managed properly and quickly. It often feels like I traded my cancer for another illness that takes up as much time and energy and causes similar amounts of fear and anxiety. I still spend 1-2 days a week at the hospital between clinic and specialist visits. I usually only sleep for a couple of hours the night before clinic because I’m so anxious about how my counts will be, and if the approach we tried that week is working, or if things have gotten better or worse. We are still working on finding the right combination of immunosuppressants and steroids using ‘trial and error’ to manage the GVHD so that it doesn’t continue to destroy my organs and tissues. I jokingly call it drug russian-roulette, because that’s kind of how it feels. Most visits consist of increasing or decreasing one or multiple drugs in my arsenal, and then just ‘seeing how it plays out’ over a few days or a week. There is never certainty. Every time we get one area under control, it seems to jump somewhere else and we have to start all over again. Since my transplant I have had GVHD episodes of the skin, gut, mouth, genital tract (Yes, that’s a thing and it’s even more terrible than it sounds), and liver. The liver has been extra-persistent and is what we have spent the most time trying to get under control as damage can happen quickly and be irreversible.
I’m sure this will sound incredibly vain to some, but it’s just where I am at right now. What I am struggling with the most- is my weight. For those of you that know me really well, you know I’ve struggled with my body image for the majority of my life. For those of you who may not know, I spent more than ten years with an eating disorder that I ultimately attended outpatient treatment for twice. I spent an extraordinary amount of time working to get myself to a place where I could have a more healthy relationship with my body.
I know that how you look does not define who you are. I know that weight is not a life or death situation. I know that I am alive and I am very grateful for that. But as a result of all the medications I’ve had to take to treat my GVHD, most especially endless high dose steroids, I have gained sixty (yep SIXTY) pounds in just over five months. This has been truly, honestly devastating for me. I’m sure that sounds dramatic, but you’re talking to a girl who spent ten years literally destroying her body and her health just trying to be thin. It’s a lot easier to be comfortable with your body, when your body looks the way you want it to. All of a sudden I find myself growing out of clothes every other week. I no longer even recognize the person in the mirror. The combination of the muscle weakness from the steroids, with the excessive amount of this rapidly added weight makes me feel like I am literally dragging myself around. I can hardly climb stairs. I am constantly trying to catch my breath. I have never, ever weighed this much in my entire life.
My team and I discuss it weekly, how much this is affecting me, but there is little they can do. It is a side effect of the steroids- as is the high cholesterol and high blood pressure I have suddenly developed. This is only temporary they say, a lot of it is fluid. “When we can get you off the steroids, the weight will come off”. These drugs are saving my life. They are saving my liver. They are keeping my donor cells from destroying my body. But they are destroying me emotionally, and so far we haven’t even come close to being able to get me off of them because every time we try to wean them down my GVHD comes roaring back and we have to start all over again at the top.
This has all been really hard for me to come to terms with. The truth is, no matter how hard I worked to develop a better relationship with my body, I still have many of the negative feelings about myself and my weight deep down inside that never really went away. I feel a deep sense of shame when I look in the mirror. Who is this person looking back at me? I feel completely disconnected, like I don’t know who I am, or if I will ever get back to who I was. I don’t want to leave my house. I don’t want to make plans with people…. I don’t even want to talk to them. I’ve disconnected from social media. I don’t want people to see me like this. I am deeply embarrassed. I feel empty. I feel sorry for my husband who suddenly has a wife that looks literally nothing like the one he married. Who is suddenly in menopause and can never have children. Who has hair that looks like a boy, and a face that looks like a chipmunk, and a body that looks like the giant blueberry girl from Charlie and the chocolate factory. We’ve both learned to laugh about it, because what else can you do? Making light of the situation makes it a little bit easier to bear. Sometimes he pinches my cheeks and asks if I’m storing nuts in there for the winter. Man I love him.
I have tried my hardest to just keep moving forward. One day at a time. I tell myself all of this is temporary. I will get back to where I was. My GVHD will end one day (they told me it can take on average 2-5 years for chronic GVHD to chill the eff out). I avoid mirrors. I try not to cry in the change rooms on my bi-weekly shopping trips to buy bigger sized clothes and bras. I tell myself this is not my fault. That the people who love me will always love me. That my size does not define who I am. That my heart is still my heart. That I will have my old body back eventually. But man is it hard to stomach some days.
I want to end on a positive note. This week after many months of crappy clinic visits I finally got a Christmas miracle! My liver counts are finally starting to get better, my blood counts are finally coming up, and we’ve been able to reduce my dose of steroids slowly for the last couple of weeks without a flare up happening. I’m going to go back next week to see where we are at before Christmas, and hopefully things will continue to look good. I’ve got my fingers crossed that there is a light at the end of this GVHD tunnel and that one step at a time, I will make my way to it.
I have a million messages on messenger to reply to and I will eventually get there, I promise.
Thank you all for the support you have shown me over the last year, for all your kind words, cards, messages of support, hugs, love, visits and prayers. I know in my heart that your collective energy is what helped me make it to right here, right now. Alive, happy, hopeful. I want you to know that even though my blogs sometimes don’t seem positive, I really am so very happy to have a second chance at life. No matter how frustrated I get, or how challenging some days are, I know I am extremely lucky and that’s what keeps me motivated and moving towards full recovery.
I hope that you all have a wonderful holiday season and that you get to spend time and share joy and love with the people you care about the most. I hope that you take the time to tell those that matter most how you truly feel, and that the new year brings you excitement, adventure and all the things you wish for in your heart.
Jenny Ellis & Mark RobertsDecember 24, 2019 at 12:34 am
We love you.