Marian and I went to bed at 8:00 PM last night. Neither of us could keep our eyes open a minute longer. I planned to read for about an hour -- a plan that lasted through my evening prayers and about as long as it took for me to reach the light switch. The difference between my old evenings and these new ones (other than major league fatigue?) appears to be lack of a television set in our rooms.
I do not spend much time in any of the many communal TV Rooms in the transplant house, not because the company is bad -- it is quite the opposite. I don’t go there because I have to wear that White Woolly Darth mask the entire time. While I am writing this, Marian is downstairs, getting her American Idol fix for the day.
I must recognize that Marian is justifiably proud of herself. Today, she did her first solo changing the sterile dressing for my Hickman Catheter. In a sterile procedure (sterile gloves, mask, etc.) she must remove the dressing from the site where my Hickman comes through my chest wall and is sutured in place. She then has to clean the area with antiseptic, sterilize the tube, and reapply a sterile dressing. When we went to the hospital this morning, she received praise for the good job...I, of course, echoed equal parts gratitude and relief.
In the medical news of the day: one step forward, two back (but they were small steps). The nutritionists are happy with what Marian is force-feeding me. But my cyclosporin levels remain nearly double what they should be, and I once again had to go back to the hospital this afternoon for an infusion of platelets.
Jimmy John’s, a local store in that franchise, sent samples of all their best sandwiches to the Transplant House, both as a donation and (of course) good advertising. One major problem: Patients like me, neutropenic and immuno-compromised, cannot eat raw vegetables (lettuce, tomatoes, etc.,) and cannot have deli meats unless they are steaming hot. All those wonderful sandwiches (Marian told me her ham and provolone was delicious) were off-limits for a bunch of us, who stood about, looking wounded and disadvantaged. Stoically, I ate my chicken with rice soup and glowered. All was forgiven later, when Marian showed up with a large glass, a small tub of ice cream and a can of Mug Root Beer. Of course, it was while I was busy soothing my hurt feelings in a wonderful root beer float, that the hospital called and told me to come back a second time for the platelets. I often hear balloons of joy popping in the late afternoon.
It is perhaps significant to recognize that the quality of a patient’s entire day may hinge on the smallest things. Getting a card or an e-mail from a friend may turn a dark and dead afternoon into a wonderful smile, followed by a long and welcome nap. A tender touch, a quick smile from an understanding nurse, a goofy picture in an e-mail, or the voice of a friend on the phone make the hours of nausea, aches, pains, and time lost in a medication-induced haze bearable.
If you have not called or visited Grandma or Grandpa, or crazy old Uncle Skeezix in a while, drop by, call, or send a card that reconnects you. I can tell you that it is easy to get lost, wandering around in your own thoughts all day -- so lost, it takes a tragedy or an injury to find your way back. I would rather live from friendly contact to friendly contact, than from funeral to funeral, or tragedy to tragedy.
Before he died in 1992, my father-in-law was sitting in his famous tool shed, looking really down, about as down as I had ever seen him. I asked what was wrong, and he said,” All my friends are dying. About the only time I see them is at a funeral, usually their own.”
I make light of much of this journey I am enduring, but without the wonderful prayers and thoughts, and e-mail and Facebook postings -- without the funny get well cards and the short letters, my days would be dark indeed.
Thank you all for your comments and your prayers. In the dark hours of the long nights, I can feel your prayers, lifting me up, wrapping me in their warmth, and soothing me back to sleep.
I think I shall sleep well tonight in preparation for Day +9 and a whole new set of interesting developments in this medical work of art called Darth Mick.
Good night and God bless you all.
Mick