|This is about the size of the needle they use on me, but it doesn't have that rounded tip.|
Missing even one treatment is a blow to my morale. In a way all of my eggs are in the ECP basket. While other medications are holding the graft vs. host disease (GVHD) at bay, ECP is what we hope gets me better. During the ECP appointments I like to visualize the treated cells attacking the GVHD. Sometimes these imaginary cells use kung-fu, or broad swords, or laser guns, to destroy the bad cells. When I miss a day it feels like I am giving the enemy a chance to advance its troops. I know I can't linger on these thoughts, though. The mind if a powerful tool and if you can't get it to focus on getting better, it can bring you to some pretty dark places.
The trick is to find the light. Amy has always encouraged me to find people that have experienced similar situations to me. We met one such person, Nick*, this past weekend. His GVHD was so severe that many doctors thought he would die. It attacked his gut and at one point he had just 90 pounds on his 5'11" frame. His mobility, like mine, was terrible. With ECP treatments, though, he started to get better. Seeing him this weekend, walking with a fairly normal gait, reinvigorated my spirit. It was a shaft of light illuminating the words, "You're going to get better!"
I also had a physical therapy session yesterday. One of my doctors told the physical therapist to "work him hard." While this phrase was not welcoming, it was necessary. If I don't keep up with stretching there is a very real danger that I could permanently loose my range of motion. I have been given a set of stretches to do on my own, but we're also considering having a physical therapist come to the house twice a week. We hope this will fend off any longterm issues.
The past few months have been some of the hardest Amy and I have experienced in the past two years. The relentless nature of a chronic condition like GVHD saps the energy of not only the patient, but the caregiver. While fighting CTCL was tough, we were able to compartmentalize each medical treatment. The chemo treatments, for instance, had a distinct beginning and ending. We could mentally prepare ourselves for 8 weeks of treatment. For the most part each treatment showed results, which was encouraging. This is not the case with GVHD. We have to come to terms with the fact that ECP may not even work. This means I could be living with GVHD for a long, long time. The word overwhelming comes to mind.
I wish Amy and I had some magic advice to help people get through rough patches. We don't. What we are good at, I think, is expressing our frustrations when they arise. Sometimes we talk to each other, sometimes with support groups, and sometimes with people we have just met. At the end of these conversations I almost always have a brighter outlook on the future. GVHD, for instance, becomes a speed bump on the road to recovery and not a dead end. It also makes me realize how I took my body for granted for over 30 years. No more! I'm going to kick this GVHD thing out of my body and start living again.
* I am sure Amy and I will write more about Nick and his wife, as they have quickly become a source of inspiration and support. They are the type of people you need to meet on tough journeys.