Graft Vs Host Disease

4+ years post stem cell transplant to treat acute Leukemia..

My hematologist finally decided it was time to stop my immunosuppressant Cyclosporine. About a month after, chronic GVHD of the skin appeared. My skin has been sensitive ever since my cancer treatment but nothing ever this severe. My entire body is covered in a red/brown pigmented rash. The skin is so tight and shiny to the point where I can’t move my joints properly. Even taking a deep breath in is uncomfortable. It’s itchy and it looks terrible. It’s started to come up onto my neck and face as well which I’m very self conscious about.

My only options left to attempt to treat it is 150mg/day of Cyclosporine and 50mg/day of prednisone, if that doesn’t help I’ll have to have photopheresis (ECP). The treatments would be done at a hospital in Toronto, just over an hour from home. I would require treatments 2x/week for about 6-12 months. It stresses me out thinking about trying to juggle work and fitting these treatments in. The treatment itself takes about 3-4 hours. The thought of having to get a hickman or picc line put back in upsets me. I’m trying not to think too much into it and just deal with it as it comes, but at 4+ years post transplant, I never would have thought I’d still be dealing with this.

When people ask me how I’m doing, my response is always the same..I’m great. That is the easiest and it’s what people want to hear. Yes I am cancer free, yes I am working and yes I look healthy on the outside. But it’s never over. I’m constantly dealing with some sort of side effect from treatment still to this day. That will never go away. I realized that several years ago. My life will never be the same. It never goes back to “normal.” You learn to adjust to this new normal that is now your life.

People sometimes ask me how surviving cancer has changed my life. This is such a loaded question. They’ll say, you must see life differently now, you must appreciate the little things so much more. And yes, I do. But what you don’t tell them is all the ways it has impacted your life negatively, because really who wants to hear that? I’m not one to complain or throw a pity party because that’s the last thing I want. But if I were to be honest there a ton of things that have changed, little things. Things people take for granted. Once you have cancer everything else seems so small. Any ache or pain is just minor compared to what you’ve been through so it hardly feels worth complaining about.

Simple things like getting dressed, takes a bit longer and is painful. My joints are restricted so even unclipping my bra takes a little extra work. I can’t turn my body certain ways, like trying to reach something in the back seat of the car. Walking down the stairs requires extra attention because I can’t extended my feet properly. I can no longer sit on the ground cross legged. Trying to get up from the ground from this position is very hard when your wrists can’t support your weight to get up. I can’t do a push up. (Not really complaining about that one). I can’t be out in the sun for longer than a few minutes without my skin starting to sting. Even with SPF on. I can’t wear tank tops or anything that shows too much skin. I can’t run because of the impact on my joints. I can’t go in hot tubs or pools without my skin burning.  My mouth flares up anytime I eat something spicy or acidic. The scaring inside my cheeks restricts me from opening my mouth fully. When I stand for too long I get sharp pains in my legs and knees. My hands start to cramp and lock up after repeatitive motions which makes doing my hair and makeup challenging. I have to apply eye drops multiple times a day because my body no longer produces the oils that lubricate the eyes. My first thought in the morning and last thought at night is “did I take all of my pills.” I no longer get my period. When girls get together we talk about this stuff. Whenever this topic comes up and someone asks about me,  I have to politely remind them. When someone says “just wait until you have kids of your own one day.” And you have to smile and come up with some sort of response that doesn’t make that person feel bad. I have more doctors appointments than the average person my age. Any ache or pain has you thinking, is my cancer back?