Mick McKellar Update--Day +85
This intrepid walker didn't do much walking today. More friends came to visit from the Keweenaw and I spent so much time talking, I ran out of time for walking. However, my jaw muscles had a good workout -- I did most of my gabbing through my mask. It was great too see friends from home, especially friends who have not already heard all my stories, and who took us out for a great meal at a really good Italian restaurant.
Familiar faces talking about familiar places is a special kind of therapy for medical exiles. I think my energy level spiked when I knew they were coming by for a visit, but a quiet fatigue has settled on me after my mouth marathon...
The weather was wonderful, with temps in the mid-60's and lots of sunshine (which I managed to avoid) -- a generous spring day, yet stingy on insects.
Medically, my rash improves a little each day and I maintain my drug schedule in hopes of better numbers on Thursday morning, when next they draw blood for a battery of tests. Even my blood glucose numbers stayed within limits today. I would rate today as a very good day for me. My mood certainly improved with the pleasure of seeing friends from home.
Illusion of health
One "wet blanket" issue nearly always comes up in conversations lately: Frailty and my future. l look pretty normal now, (OK, I never looked normal...) and much healthier than even a month ago. There is little one can find externally to indicate how delicate is my condition, for even the rash is not very noticeable now. Only my white Darth Mick mask is a give-away.
However, underneath the hood, this rusty old vehicle is held together by the grace of God, 16 different medications, constant vigilance by my long-suffering caregiver, and a lot of steroid creams. My immune system is wide open. One breach in protective security, one break in protocol, one infection -- and I am in serious trouble. It's enough to make one paranoid.
GVHD is a clever and resourceful foe, who must be tricked into being an ally. The delicate dance of medications must keep pace with the rhythms of the disease. My anti-rejection medication, cyclosporin, must leash the monster and yet let him roam about looking for stray cancer cells to demolish. Too much leash, and the benefits disappear. Too little leash, and the monster goes after the good guys as well.
The first 100 days is the acute period (approximately) during which one sees frontal attacks like the rash and the attack on my liver. A bit later, comes chronic GVHD, which can flare up for a year or two on average. It will be at least a year before I can begin inoculations against childhood diseases. Meanwhile, measles could be a killer.
In fact, at any point along this path, I could simply take a nap and not wake up again. It is a sobering thought and the cold, hard reality of the BMT process, that cures are rare. Yet, if one is willing to endure the treatments, and God is willing to grant his daily gift, one gets to live on for awhile longer and maybe use the time wisely and well.
Each minute of each and every day is precious to me. I have been blessed beyond measure. I have been at death's door and found nothing to fear there. I have been given help getting back from that threshold by skilled and imaginative medical personnel. I have a stalwart and loving partner and caregiver who endures my faults and watches over me. I have so many friends and supporters who visit, write, pray, chant, call, and send good thoughts our way, it is beyond anything I could have imagined. I have a brother/donor who has graciously endured the pain and inconvenience to travel here and grant me new life from his blood and marrow. I have a supportive and caring family and four grandchildren I ache to see again. I have a home to go back to from this exile.
The list goes on and on. For the first time in my life, my evening prayers contain as many “thank yous” as petitions. I cannot feel sorry for myself, though I mumble at daily frustrations and grumble about small things. I am a lucky man and a blessed man.
I just thought I should reiterate the above in the light of my daily kvetching about rashes and blood test numbers, about the long waits in waiting rooms and at the pharmacy, and about the constant changes. Each night, I thank God for the gift of the day, and each night I ask, "May I have another one tomorrow?" When I wake up to a new day, I silently rejoice and vow to make the most of it.
Thank you for your prayers and good thoughts.
God bless and good night,
Mick
And now, Honoring the Gift
I am a lucky man to have friends and family who care about me at a time when I could spend all my hours feeling sorry for myself. Yet, I do not feel sorry for myself. During and while enduring the challenges of my illness, I learned a valuable life lesson. I have learned to live in the present.
For each new day is for me a gift from God. I strive to make the most of each one and to live each day to the fullest and to honor the gift of each new day.
Mick
Honoring the Gift
The joy of a sunrise near breaks my heart,
As the early light so wan yet pleasant,
Gives me the strength and the power, to start
Planning to make the most of my present.
For that precious present is all I need,
To fire my spirit and blood to rise,
So my tree of life, now a tiny seed,
In a single day can reach to the skies.
And if in that single day I can find,
Another soul in distress or in pain.
And in giving love and compassion, kind,
Offer solace sincere from stress and strain,
Without worry or doubt about short shrift,
I have given honor to God's great gift.
Mick McKellar
May 2011