Thoughts about the Future

My, the days are moving along quickly now. Day 60 today. Another milestone - statistically, having reached this point with no episodes of Graft vs. Host (GVH), my risk for acute GVH is now pretty low. Now I just have to deal with chronic GVH (CGVH). The next significant challenge will be tapering off the cyclosporine (immunosuppression) without breakthrough CGVH. The tapering begins after day 100 (end of October).
One of the first things you learn in dealing with Cancer is to focus on the present, to just live one day at a time. Making serious plans for the future seems somewhat irrelevent. But I've cleared many major hurdles and am really starting to sense that I may actually have this thing beat... and I've begun to entertain some thoughts about the future - another one of those simple luxuries we tend to take for granted when we're healthy.
One of the first questions always is "when are you going back to work?". Initially I was thinking maybe 6 months post transplant. But just about 2 months before my transplant I ran into the 5th patient in this protocol (I'm #8). She had returned to light part time work as a teachers' assistant at 6 months. She soon caught a virus and developed her first episode of CGVH, with serious skin and liver involvement. They put her right back on high dose cyclosporine and steroids. She's just now, 6 months later, getting off the cyclosporine, again. This alone was enough to convince me that I should just "lay low" for the first year. Then the risk of CGVH begins to drop significantly. Also, I'm told my immune system will not be back to normal until two years. I'd like to be able to say I'm completely at peace with this decision, but I'm not. I'm periodically haunted by the specter of atrophying skills and knowledge, being out of touch with the latest information and technology,and just generally not "contributing".

A totally different form of "future think" is making plans again for fun adventures with friends and family. Bram has convinced us that a float trip through the Grand Canyon, in Dories, is a once-in-a-lifetime experience that shouldn't be put off any longer. The optimal way to do it, maximizing safety, relaxation, and the educational experience, is with professional guides such as OARS, the company Bram works for. However, these trips are sold out more than a year ahead of time, and are phenomenally expensive. To do the whole Canyon in early May (2007) requires 16 days and is currently (2006) priced at $4509/person!! That's more than twice what we've ever spent on a vacation! But for me, from the perspective of what I've been through, and what continued treatment of Multiple Myeloma would have cost had I chosen to pass up transplant because of the potential risks, the decision is easy. I had originally hoped to entice as many friends and relatives, and that's who reads these Blogs, as possible to join us, but I know realistically this is more than a "stretch" for most folks. But, only $500 is required to secure a spot on the roster, and with 17 months to save the other $4000, that comes to a little over $235/month! (I can rationalize anything!). If you think you might be interested call OARS 800 877-3679, soon, talk to Joy (ext 717) and get on the list for the early May 2007 complete Grand Canyon trip.

With the Labor Day Holiday, last week seemed brief - the usual blood work, x-ray, and check up on Tuesday instead of Monday, a nice bike ride with MC to the Maryland side of Great Falls on the Potomac on Wednesday, and back to Clinic on Thursday. On Friday we drove over to the Shenandoah Valley. Very nice: "mountains" and rolling hills, quaint historic towns; it seemed like there was aCivil War battle field almost every few miles. We had a picnic lunch at a Plantation and then drove to the Luray Caverns. If you've never been in one of these it's hard to describe the experience: huge underground chambers with giant stalactites and stalagmites, columns, and delicate "drapery", just awesome. Sunday I got to go flying with a fellow Comanche pilot out of Baltimore. We flew up to Lancaster, PA for lunch. He let me fly the return leg. My first flying since June 26th, enjoyed it a lot!
Chuck and Karen Benbrook from the Upper Pack River (Sandpoint) will be in town later this week. Huge Peace Rally on the Mall of the Capital Saturday. Bush's ratings down to 39%. Maybe this country's finally waking up?