Tuesday, October 27, 2009

Big Sky

Gil and I walked down our street yesterday morning and as we were coming back up the driveway, the sky was "big" and this was the photograph he captured with his wide angle lens. Aren't we lucky to live in such a beautiful place?

(Did you know you can "click" or "double click" on the photos that begin each of these blog entries for a full screen view of the image? Try it.)

We made our first bone marrow clinic visit yesterday. We had been assigned a 12 noon appointment time and we've learned to avoid that time if at all possible for future appointments! We were waiting for everyone who was already late seeing their morning patients to go to lunch and come back. So there was a lot of waiting for us.

First we had blood work drawn. Then a visit from the nurse practitioner, pharmacist and finally our physician. They keep very close tabs on symptoms and developments as you are recovering at home. They want to know about any new rash or itch (indicating the skin's reaction to the new stem cells), any change in appetite or digestive habits (indicating the gut's reaction to the new stem cells) and any jaundice-like symptoms (indicating the liver's reaction to the new stem cells.)

The team is actually looking for some degree of reaction from the body to indicate that there is a very low-level graft vs. host process going on. It's considered a good sign to see some "waging-of-war" between the remnants of Gil's old cells and the establishment of Genie's new cells.

He continues to take the two immunosuppressive drugs which are titrated weekly depending on his measured serum levels.

Because Gil got a "good check-up" yesterday, we only need to be seen twice a week in clinic unless and until his condition changes when they would want more frequent monitoring.

As an aside, one of our fellow transplant friends -- who received his donor cells on the same day that Gil did -- called to check on us. He is staying in Guest Housing at Karmanos because it is required that you stay within a one hour drive of the center during your first few months, and we invited our new friend and his wife to come to our house this week and even spend the night this weekend if he is up to it.

Our friend said, "You know I need a 4 hour IV magnesium sulfate infusion each day, don't you?"

And we said, "Of course we do. Gil needs the same thing. The two of you can sit together in the living room sharing the IV pole and enjoy the awesome view out the big picture window!"

Another friend we made on the transplant unit is going home today and we are thrilled for her. There is a camaraderie that develops among the patients as they cheer one another on, empathize with setbacks and mark one another's progress.

While at the clinic yesterday, we heard lots more about what's to come in the next couple of months but we'll share that with you one day at a time as the weeks unfold.

In the meantime, Gil is ready to venture a bit further from home today, and asked if we could head to Ann Arbor for part of the day. He is not allowed to drive while he has his Hickman trifusion catheter in place, so I am the lucky chauffeur and I don't mind at all!

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