50 Steps Forward and 5 Steps Back

So… It's been nearly 2 full months since my last post. I'm still working for Be The Match and loving it. But that's not exactly what this post is about.

At the beginning of November, I went to Minneapolis, Minnesota for the national Council Meetings for Be The Match and its many partners across the world. In all, the more than 1,200 attendees represented 32 nations were. A couple weeks later I was back in Minneapolis for the final stage of my orientation and training with the organization. It's interesting. There are several Community Engagement Representatives like me that work for Be The Match who are transplant recipients. Every time I would tell someone that I was a recipient they would ask me "How long since your transplant?" When I would tell them that I was about 17 1/2 months post-transplant, they would invariably be very surprised, saying, "Wow! You look great!" In running drives for Be The Match, sometimes the drive sponsors are transplant recipients, themselves. I get the same reactions from them when I tell them how long it's been since my transplant.

It's so interesting to me. I don't feel like my transplant was all too recent, but relative to how most transplant recipients are doing only 18 months out, I realize more and more that I'm doing exceptionally well. They're right, of course. But there are a lot of days in which I don't feel like my transplant is that far back in the rearview mirror. I've had a couple of those days recently.

I'm completely off of my cyclosporine, the drug that was suppressing my donor's immune system. Half of the pills I take every day are supplements like Os-Cal D, Vitamin D, and Centrum Silver. I'll probably have to take those every day for the rest of my life. Others I will be able to be off of within the next two or three months. Those are pills like penicillin, acyclovir, and a very small dose of prednisone. In just a couple more months, we will be able to start my re-immunization process. This coming spring, when the cold and flu season is over, I won't have to wear my mask in church or on airplanes anymore. There's been some great progress, and I've been able to steer clear of graft versus host disease, and other infections. Unfortunately though, cancer unavoidably leaves its scars.

I have eczema. It's all over my legs, my arms, the sides of my rib cage, and my face. It's made short-lived appearances on my scalp, my back, my bum, and on the tops of my feet. It itches like the dickens, and sometimes, the only relief I get is when I sleep. Sometimes it doesn't just itch… It can be very painful, too. Gratefully it's not contagious, but it's really a pain to deal with.

I developed cataracts following my leukemia and my high doses of prednisone. In October, I had cataract surgery performed on both of my eyes. Now I can see perfectly at a distance, but for things that are close up, I always have to wear glasses. And the issue with that is that I have to wear the right prescription for when I'm working on the computer or reading my phone, and those prescriptions are different from one another. It's really frustrating that my eyes now have no ability to shift focus, even in the slightest degree.

I've lost a lot of my strength and stamina. Granted, I was able to go play golf yesterday with my older brother, George, and my younger brother, Jeff. But today I feel sick and run down. I don't know if it's related, but I do know I was exhausted last night. This morning I got up to shower and get ready for church, and while I was putting topical steroid cream on my patches of eczema, all of a sudden I felt very nauseous, and thought I was going to throw up. I've spent 90% of my day in bed. Gratefully, I haven't thrown up, but I've felt a general malaise, and had a couple headaches. Days like this happen every now and then, and while I know they happen to everyone now and then whether they've gone through leukemia or not, I still sometimes feel like in my case, it's all related. I've always been a very healthy guy, and very rarely sick. 

Depression is perhaps the greatest challenge I've dealt with since last summer. Last September, I was at my weekly clinic visit, and my PA walked in and asked me simply, "How are you?" I couldn't answer without breaking down into tears. All of the losses that I had experienced to that point came crashing down on me, because I had as yet failed to recognize and process all of them. I spent the next 10 months seeing a therapist, and taking antidepressants. A bad side effect of my depression was an inability to control my temper well. Gradually, it got better, but I still deal with hours or days in which depression sets in, and I find it hard to function, even with the coping mechanisms that I have learned from my therapists. 

There are more medical issues I have faced, and currently face, but I will be discreet and simply say that they have been a bother.

So, all in all, I'm doing really well, and believe me, I appreciate greatly the blessing it is to be able to say so. I recognize the fact that with as aggressive a form of leukemia as I had, with some very "high risk markers" in my blood and DNA, the fact that I wake up every day, breathing in and out, with a heart beating in my chest is a miracle. I thank God every day for my donor, Ambros. He made it possible for God to save my life. 50 steps forward.

But there are challenges that have come, that I deal with now, and that will surely continue to come as the days and years progress. They can all be classified at the very least as nuisances, and in some cases, painful and extremely difficult. 5 steps back.

But I am blessed. Of all the friends that Noelle and I have met among other patients and caregivers in the East 8 BMT unit, I'm doing the best out of all of them as far as health is concerned. There are times that I feel guilty that I'm the one doing so well, when others who are quite a bit younger than me are not. I have to push down those feelings of guilt and almost adopt the role of "poster child" for our little group. Other patients in my group don't particularly like me very much right now and their caregivers don't particularly like Noelle right now. It's not that we have become bad people, but that it's hard for others who are struggling so badly to spend time with us or talk with us anymore. There seems to be some resentment, which is completely understandable. Given the situation, if the tables were turned, I would probably feel some resentment, too. All that Noelle and I can really do now is to show and express our love and appreciation for these people who have become so important to us. They are our fellow fighters, and I think of them every day I go to work. Yes, I think of Ambros, but I think even more about my fellow fighters who have struggled so much, and appear to still have so many struggles ahead of them. When I work with Be The Match, I work to create a world in which more people with leukemia, lymphoma, and other blood diseases are able to find a perfectly matched donor, and for the day in which the 250+ research projects that Be The Match funds are able to prevent those patients from relapsing, and experiencing so much challenge with graft versus host disease and other things. Sure, I work for me and my family, but I work for them and their families and the thousands upon thousands of other patients who will be diagnosed down the road and for their families.

As I go back to work tomorrow after the long weekend, I hope to be able to align myself with as many people as possible who share the same vision. If you want to do something - not just hope something - about blood cancers and other blood diseases, let me know. I have some ideas…