Homeward Bound

Waiting and Waiting

All,
Beck and I spent more than 5 hours at the clinic today. It can be very frustrating when all but about 30-40 minutes of that time is waiting, waiting, and waiting some more. That’s the bad news. The good news is that I have passed another milestone. I am now on once a week visits which means WE CAN GO HOME!

Rick & Cecil after steaks

For the record, we went home last Friday for the weekend. That was the first time I’d been in Manteca since Feb. 4 and the first time Beck has spent more than 24 hours there in that time. As we drove up Main Street from the freeway to our house, we both were a little depressed. San Francisco it ain’t! It IS home however, and we adjusted quickly. Our neighbor Cecil came over for dinner and I BBQ’d for the first time since forever. Now it seems we will be back to Manteca and out of our apartment next week. So much to do, so little time.

Nothing about my driving please

Beck has let me start driving again. Another milestone I guess. I ran some errands in Manteca last weekend, then drove to San Francisco and have been driving around here since. Beck has learned her way around quite well. Me, not so much. I haven’t paid much attention all these weeks, so she has me on a crash course. Good luck with that one. I get my sense of direction from my mom (always refers to the directions), Beck got hers from her dad (was reading maps at an early age). I figure if Beck doesn’t know where we are, my GPS will!

The clinic visit was uneventful. The steroids are being reduced again from 30mg daily to 25. I am having some aches and pains that we are blaming on the adjustment. I also have some issues with age related problems with my back. I am slowed down a little, but not stopped and not deterred. We still are unsure of which of the issues I deal with daily will improve or go away completely, but I can live with it as long as I can keep pushing for more strength and stamina. Doctors are encouraging me to do so. I must admit my pleasant surprise at not having to be hospitalized again after the transplant. Not everyone is readmitted, but most are. I feel very lucky to have had the experience I’ve had and not something much worse. I’m convinced all of your caring loving thoughts and prayers are responsible. Keep it up.

A bone marrow biopsy looms sometime in the next few weeks. I’m told it will be done in the operating room under anesthesia. Scheduling is an issue I guess because those pesky surgeons don’t want to give up the OR. There will also be an MRI to check on my neck. Neither of these will prevent us from moving next week however. We leave here with mixed emotions. Two weeks ago I wasn’t ready. I am now. It’s good to reach this point and get on with life. My weekly visits will continue for a period as yet to be determined, then bi-monthly for awhile. It means the docs are comfortable with my progress and feel it’s safe to reduce the visits. Fine by me. For now, it appears our next blog will originate from Manteca. Barring any emergencies, ALL my medical work will be done at UCSF. In case of an emergency, UCSF will be involved and may even call the shots.

I’m told I look good. I know I feel good. My quality of life is pretty good. I am, however, a long way from well. It will be a minimum of another year before we have a handle on my requirements for the immunosuppressant . Sunshine is not my friend in that period. I have to cover up and/or slather sunscreen all over me as a very small amount of sun can do a great deal of damage. I’m told 10 minutes a day of unprotected sun is MAX. If I do that, eventually I will begin to tan and I will begin to develop some natural protection. It is critical that I don’t burn as GVH will attack with a vengeance if I do. I learned that when I covered everything but my hands. They got pretty red and required some topical steroid ointment to rein it in. Lesson learned. I now wear gloves to go with my hat, long pants, long sleeves and dark glasses. With a hoody I look just like DB Cooper, the hijacker who bailed out somewhere between Seattle and Portland some 30 years ago and was never found.

So from San Francisco with love, we bid you adieu.

UCSF from Conservatory of Flowers

Sunset in The City