Day +73

During the research, application and…waiting… stages for my HSCT treatment I read several blogs from people who went through the procedure. I followed them closely absorbing every morsel of technical knowledge while attempting to grasp the emotional nuances of going through this difficult process. There’s a consistent theme in most of these blogs that upon arrival back to their respective homes such as California, Texas, Oregon, Australia and many parts of Europe, the postings drop off precipitously and without warning.

I believed that when HSCT’ers arrived home they would begin to feel better and have more time to bloviate about their myelin, their recovery and any other inane topics they determine to be their zeitgeist. This doesn’t usually happen and blog after blog you see days turn into weeks and months between postings leaving us hanging on the edge of our seats to decide for ourselves whether their respective adventures were worth the effort! I promised myself that when I returned from Chicago I would continue to write with dedication and consistency to my tens of followers to keep them abreast on my strong recovery and recuperation.

Alas, on day approximately +73 since my transplant I have posted only a few times since my arrival home and not once in the past 6 weeks. Strange even to myself but true. So you ask, why have I been dragging my feet leaving everyone hanging without the proper ending a story like this should have??? Well, probably because I have been dragging my feet…literally.

The affects of chemotherapy have all but disappeared from my body. Occasionally I’m overcome with waves of nausea but I think that’s usually from my lack of attention to those all too important four words: “best if used by ” in the refrigerator… After all, how can sour cream go bad??? Badaboom! Seedlings of fuzzy hair are now visible on my still shiny head, my lab draws are pretty normal including my WBC count which hovers around 3.5-3.8 (4-10 is normal range) and those crazy chemo induced dreams are now replaced by good old fashioned nightmares about work!! Work you say?? Yes indeedy, on July 16^th I returned to the office full time to prepare for the all-important Open Enrollment season later this year blah, blah, blah. I truly can’t believe it went by so fast. I believe it more today as I opened my pay check to see they began deducting for some of the hours I was out. CEOs just don’t get away with half the stuff we used to. Damn you Enron and Tyco! I was out a total of 52 work days and while I worked for most of that time from home there was still plenty of time for rest and recovery and I'm grateful to my employer for granting me this leave of absence.

I think the best explanation for the elongated delay between postings was my eternal hope that tomorrow, or the day after the BIG breakthrough would happen and I would post a video of me sprinting through the streets. My friend Chad an HSCT’er from Oregon posted not long ago that he was able to “run down the street” after his daughter. Those aren’t just words to me, that thought slowly oozes through my mind like poured gravy on mashed potatos (make your own joke here). Another blogger Andrew from Australia recently posted a video on our FB group for fellow HSCT’ers showing him running in a park for the first time in years. His clumsy strides one after another running no more than 20-30 yards in all was emotional to watch. Over and over I watched him go, seeing me in his shoes, understanding how demyelination affects muscles and therefore ligaments and tendons as a result of decreased structural support.

That day for me is not today. It may be tomorrow or next week. Today, while grateful for what I can do, I still yearn for what I could do before, and in truth what others can do that I cannot. I have always yearned for that which hangs beyond my reach. On one of Kurt Vonnegut’s birthdays late in his life someone asked him if there was anything good about getting old and I’m paraphrasing, he said it’s great to be able to walk down the street and not want to bed every attractive woman I see. This is obviously not metaphor for me because I'm a happily married man.  However, with other non-women related topics there are some similarities that with age I'm more accepting and grateful for  what I have. Mr. Grace, Mr. Vonnegut was a friend of mine… You are no Kurt Vonnegut…

Anyway, enough nonsense and back to the matter at hand for the 2-3 people still reading this diatribe. My walking is as clumsy as ever. I still use the cane occasionally but the support I receive having an extra “leg” to lean on is often overshadowed by my inability to relate to my surroundings or more precisely the people who inevitably stare at an otherwise normal looking dude with no leg cast or brace to justify the walking stick. I feel very uncomfortable drawing attention to myself and while the pretend therapist in my mind (Looks more like Dr. Melfi from the Sopranos than Dr. Weston from In Treatment) tells me constantly to block out everyone else and focus on myself, I can’t avoid the stares and I frequently stare back with less than friendly thoughts going through my mind (many of which include using my cane for less than friendly purposes)

So there you have it. What’s new with me?? I can walk today. It is painful to do and watch but I get my ass out of bed, into the shower and to work to support my family as I will do for the next 25-30 years, yikeees! For this I’m thankful to the good Lord above. Some days are better than others. Nights are usually better as my symptoms are less pronounced. Two weeks ago Tuesday there were a few hours in the evening I felt great and my walking was effortless and without pain. An increasing number of people ask me what’s wrong with me and why I am limping? I was at a meeting earlier this week with a high powered shaker and mover in the insurance industry. I was pitching him to start selling our insurance services through his agents and brokers. He was perplexed by my bald head as it didn’t fit my body especially with the peach like fuzz beginning to surface. When he walked me out he was further baffled as to why I walk at half the pace as a normal New Yorker. As we shook hands at the door, it was clear I didn’t make that sale, yet.

What will happen tomorrow??? Anyone’s guess. It is strange for me to be on this side of the procedure because at this point there’s nothing left to do but wait, take good care of myself and ask God to give me the strength to execute his plan for me to the best of my ability. When MS progressed last year this time I had more hope. Gilenya, the new medication I began in October would be great for me! I would see HUGE improvement, but I didn’t. Then I found HSCT and this would surely “stem the tide” on this dastardly manipulation of the immune system, but it hasn’t, not yet. It’s a strange emptiness not having the next best thing to look forward to. This has not been lost on my wife who rides these waves with me. She’s in PR for a month to visit with her family and for a well-deserved break from me (not necessarily in that order).  She comes back in a few weeks, I hope…

Most of my family and friends have fallen off of my blog so those that do read this post are probably either contemplating HSCT for themselves or have a family member affected by MS and are considering this treatment. Heed my words, this is not an easy procedure physically, emotionally or financially. I read many postings on FB from those that are on the front side of this procedure and they would give their right arm to be accepted into one of the increasing number of facilities around the world performing HSCT for MS and other autoimmune diseases. They have hope and sometimes hope skews reality. Scientific studies and data show that this doesn’t work for everyone and particularly for those who have had their particular flavor of autoimmune disease for several years, like me. This IS the answer for some of us, it greatly improves our condition in most of us but it’s not without a serious toll on our lives for a long time. It’s too early to tell what the final result of this treatment will be for me but I see more and more people grasping on to this as THE answer.

That’s all for now. As an optimist by nature it’s difficult to write a less than positive report but the purpose of sharing this experience was to never sugar coat this process in any way. I still do believe I will run again one day, maybe tomorrow...