Today is getaway day.
We expect to arrive home this afternoon. I am tired and bored. There’s little desire to read or write. I lost my strength to explore Seattle. Television’s meaningless braying insults my intelligence, in fact, our collective intelligence. You need only be stuck in front of it for a period of time to gauge tedium.
Improvements tease me. My stomach twists and turns and I wander in and out of queasiness. But I keep everything down. I am low-grade uncomfortable. I force myself to walk. Earlier this week I climbed the 99 steps, twice. I tolerated the ascent but it felt more like punishment than accomplishment.
The fatigue makes me subdued and uncommunicative. Yet, I checked off the week’s necessary clinic visits. Wednesday I passed a dental exam. Then Marilyn and I attended a class on Long Term Follow Up care. After we depart, the SCCA continues to act as a resource for both the patient and their doctors. We’ve a direct line to call and consult on any complications related to the transplant.
The big message from the LTFU class is to become my own advocate. Friends and family understand I’ve been away receiving treatment. The assumption tends to be that I must be well if the clinic discharged me. But, I am not well. I still spend a portion of each day in the fetal position, dreaming of the energy that eludes me. Furthermore, I am returning home with a long list of things I cannot do. The suppression of my immune system makes me vulnerable to many diseases. I must find a balance between isolating myself and participating in safe social activities. I need a T-shirt that says, “Do Not Hug.”
Thursday was our final day at the clinic. There were morning labs before I had my Hickman line removed from my chest. I was thinking this might require a stitch or two and a local anesthetic, for following this procedure I had a visit with the team PA and nurse, then, the exit conference with the attending physician. Accordingly, I wanted to be alert!
Well…no stitches, no anesthetic, just an old-fashioned tractor pull to remove the catheter, the doctor got a good grip and then, with all his might, he tore the Dacron cuff from the spot on my chest wall where it had knit itself these last three months. He applied pressure to my jugular vein and massaged it for three or four minutes. A nurse placed a small see through dressing and I was good to go.
Our exit visits were anticlimactic. “Hang in there,” said the PA, “Before long you will feel better.” “You’ve done well,” said the doctor, “It’s still early in the game. You will improve.” So, with these reassuring pats on the back we left the clinic behind.
We went to dinner with friends. The day had exhausted me and I was something of a zombie at the restaurant. I’m feeling better this morning. The excitement of going home is already improving my mood.
Good Blood, Bad Blood 