11 Refills
It has been 56 days since I last posted an update. Although I have never been shy about writing what is on my mind, I found it difficult because I felt an overwhelming need to be profound, and my life as a Copper Country snow hermit has been at best, prosaic and tedious; at worst, mundane and uninteresting. True excitement saturated any day my medications did not cause diarrhea. Even my phone calls with friends and family included such tantalizing treats as reports on how many times I climbed the stairs to my room and how many feet of snow Marian shoveled in the past week. Profound was not found.
I am writing now because April 2014 has seen two seismic shifts in the bedrock of my path. On April 10, I visited with my doctor at Mayo Clinic after a full day of tests and was surprised to hear that my pulmonary function tests showed a slight improvement in lung capacity and in ability to process oxygen. The improvement is very small — at worst it indicates absolutely no loss of lung function and may indicate my limited exercises are bearing some out-of-season fruit. He also indicated that we can try a small reduction of my intake of CellCept — the anti-rejection medication that helps keep those redneck T-cells I received from my brother from raising a ruckus. We're watching for new rashes or other signs of discontent in their ranks. So far, all is quiet on the lymphocyte front.
It was also interesting to realize that my care regimen is shifting slowly from a focus on preventative and response care (although those remain important) to include consideration of long-term maintenance. February marked a year since I was last an inpatient. Although I have yet to know a day without pain, I have not screamed in more than a year. Because the snow and ice have retreated from the roads, I can once again take Dante for a walk — more a stroll really. We finally cracked the one mile limit this morning!
In
the three years plus since my transplant, I have learned to live in the
moment and to not waste a second of any day. The future for me remains
the prize behind curtain number three. And yet, something happened today
that caused the second seismic shift in my daily life. It was a very
small thing, almost invisible, and I had to put on my cheaters to see it
clearly.Today was delivery day for my monthly supply of Sprycel (dasatinib) — the specialty medication that helps keep my leukemia in remission. On the label, in the lower left corner was the simple phrase: 11 Refills. Previously that number increased from 3 to 5, but this change positively shouts at me that my physicians think I'll still be here — in a year! My atovaquone scrip was also renewed and I received it a couple of days ago, so I rushed to look closely at that label, and it said: 12 Refills — Woohoo! Apparently, I have been repackaged and my expiration date extended...
I received permission to begin attending church again — as long as I keep a distance from anyone coughing and sneezing, and I also received permission to do a little gardening — as long as I wear gloves and don't throw dirt in my face. However, blanket permission to dig around in my attic and basement was not forthcoming, and it seems I will still have to avoid spending time in musty old buildings — no point in tempting fate, I guess.
Although I still don't know if the glass is half-full or half-empty, I fully intend to enjoy the wine! Thanks for all the prayers and good thoughts!
Mick
