Some days it feels like two steps forward, one step back. At least that’s still forward progress, right? My frustration comes from a setback with the GVHD in my eyes. For a few days, they were almost normal. But since Monday, the light sensitivity and blurriness have returned, along with the headaches. This is bad enough by itself, but my diminished sight affects everything else that I do, including interacting with my daughters. I also tested positive for another viral infection, but this time it comes without any symptoms, thankfully, and hopefully it will remain that way. In a sense, I’ve traded cancer for an autoimmune disease. I still think I came out ahead. I’m complaining, I know…
Similar to leukemia, recovering from a stem cell transplant is a full time job. Thankfully I only have to come to the hospital three days a week now, down from four the last few weeks. I get up a little before 5 am to catch the shuttle by 6:30 am. This has been one of my favorite times of the day, enjoying a small pot of coffee while reading my Bible and praying. Not so much when I can’t see well from the GVHD or get my fill of java since I’ve had to cut back due the bladder infection.
After a 15 minute shuttle ride to the hospital, I get blood drawn to test my cell counts, electrolytes, and medicine levels. My platelets, white blood cells, and hemoglobin have all been slowly dropping, ostensibly due to the effects of the photopheresis and tapering of steroids. I’ll admit that it does make me a bit apprehensive, as low platelets and hemoglobin were two signs that alerted us to the leukemia to start with. My doctor isn’t concerned and my hemoglobin was up today, both of which are encouraging.
After labs I head to the “Ambulatory Treatment Center”, or ATC. This is the clinic where I receive regular 2-hour magnesium infusions, since the immunosuppressing drug that I take for GVHD, tacrolimus, lowers the body’s magnesium level. Then I head upstairs for photopheresis, which usually takes another two hours or so. I mostly lie there during the procedure, sometimes napping, other times reading. Lately, I’ve just lain there shielding my eyes from the light and listening to music or a podcast.
If all goes well, I catch the 1:15 pm shuttle back to the apartment. As often as not, I don’t get finished in time and take a cab or have Christi or Jean come and get me. If I go really late then I catch another shuttle. Most days, I’m back in the apartment by 2 or 3 pm. If I feel good enough, then I’ll work out downstairs in the fitness center. If not, then I’ll take a nap or just rest.
This really doesn’t sound too bad. I mean, before I got sick I was up at 5 am, out the door by 5:45, and home at 6:20 pm. Every workday was a twelve-hour day. Sure, I was tired at night, but always had enough energy to allow me to spend time with my family and even help clean up after dinner. Now, though, a seven-hour day at the hospital is about all this guy can handle, especially if I have to muddle my way though it with blurry eyes.
I’ve written quite a bit about perspective. So, I acknowledge that I am blessed to be in the recovery phase of the transplant and doing generally well. I am regaining my strength and can even do some push-ups now. My weight is up to about 145 lbs. from a low of 135 after the transplant, thanks to the prednisone, some good cooking, and tubs of ice cream.
As much as I want to return to those twelve-hour workdays, this will likely be a long time coming. I’ve underestimated the challenge of GVHD and the risk of infections. Vigilance on my part and that of my doctors is of the utmost importance. My hope is to return to work, part time at first, within a month or two of getting home, but this may be overly optimistic, too.
Regardless of the difficulties, I know that better days are ahead. If my concern lies only here, with my present circumstances, then these difficulties can seem insurmountable. If, however, my thoughts are rightfully fixed on what is to come, then I can see beyond the pain and frustration to real and lasting purpose. Each day, whether at the hospital or at work, was made by the Lord and is therefore good. It’s our choice to be joyful and see the potential good in it.
This is the day the lord has made. We will rejoice and be glad in it. (Psalms 118:24 NLT)