Coping with GVHD after ALCL

I never really thought about life after cancer. I was too busy just dealing with the ways stage IV anaplastic large T cell lymphoma small cell variant (ALCL) turned everything upside down.

My ALCL treatment plan consisted of six cycles of chemotherapy, followed by a stem cell transplant. Because my sister was a perfect donor match for the transplant, I didn’t have to wait as long as some patients do for the procedure. And when I finally had it done, I thought to myself, “This is it?” It seemed so simple considering how significant it would be to my recovery.

On Aug. 3, 2013, my doctor told me that I was in remission. It’s a day I’ll never forget. My entire family was together, and everyone had the same facial expression – one that showed relief and overwhelming happiness.

Now, as a three-year ALCL survivor, I can tell you that the journey doesn’t end there. It’s just the beginning of a different phase.

Receiving my graft vs. host disease (GVHD) diagnosis

I knew it would take time to regain strength after my transplant. I also was familiar with the risks of graft vs. host disease (GVHD), which is when the new stem cells (the graft) see the tissues of your body (the host) as foreign and attack. But given that I had a perfect match and the process had gone so smoothly, I didn’t worry much about that happening.

But in March 2014, right as I started to feel normal again, I began having some annoying complications like super dry skin, shortness of breath and a gritty sensation in my eyes that made it feel like I had sand in them. It turned out to be GVHD.  

Moving to Houston for Photopheresis treatment

At first I traveled to Houston every month to monitor and control my GVHD symptoms. But once I left, the disease flared up again. That’s why I made the decision to move to Houston in June 2015. 

It’s been hard to be away from my family and boyfriend, but I’m able to focus on receiving a treatment called Photopheresis, as well as physical therapy. The treatment process is almost like a blood transfusion – it’s relatively simple and totally painless. My symptoms have started to diminish, and I've improved tremendously. I’m so thankful for MD Anderson. 

Dealing with the second phase of cancer survivorship

When I had cancer, I was in a different frame of mind. I was simply focused on surviving. On top of that, I lost so much muscle weight that I was confined to a wheelchair and sometimes couldn’t even lift my head. I was weak, scared and somewhat delirious. That’s why for me, GVHD has been harder than cancer. I now have lots of energy, and I’m fully aware of what’s going on. I feel like I could run a marathon, but I’m stuck.  

But staying positive has helped me through this. Although I wish that things were different and I could be back to my old self, I’m just happy to be here. As I’ve learned, cancer teaches you to be happy just for the mere fact that you’re alive. If I didn’t have that perspective, I wouldn't be here today.

Having my family, friends, and boyfriend continue to stick with me and fight also has made me stronger. I live for them, and they continue to motivate me.  

To all the cancer patients out there -- fight like hell! And keep fighting because the journey doesn’t end -- it just changes.