The doc said " You are doing amazingly well." That is interesting because overall I feel kind of lousy, and aside from a few decent days here and there, I feel about as well overall as I did weeks ago. Nausea, bouts of indescribable skin irritation, and episodes of intense fatigue. So the details: My chronic viral infection appears to be gone, my blood counts are nearly normal, my bone marrow is clear of disease, and my marrow cells are now 100% donor. After seven months of pain, I will now have the IV port in my chest surgically removed (yet more scars). We are tapering the drugs to zero within the next 8 weeks. The doc is certain that my graft-host disease is gone and that my issues are related to the drugs. He was very happy. OK... but I still feel like crap. I know, I was able to do a slow 5 mile run this morning, and I should be happy with that, but that is chump change, and it was an ugly thing totally devoid of satisfaction. If this is it, the endpoint of all this misery, it was not worth it. And we don't even talk about probabilities of survival anymore. Too depressing. I barely care anyway. His answer is always a party stopper. Apparently that particular number is completely independent of everything else and entirely out of my control.
But now I have another problem. What if I survive longer than I expect? What exactly do I do with my life? Go back into that thankless world of academia? Hell no! Draw a disability check while bicycling across New Mexico or attempting long distance runs and traverses? Philosophically that is fraught with problems. What do I have to offer, and how do I go about doing it?
If all goes fairly well, I will be set free from here in eight weeks, and you can bet that I will be living as large and loud as I can, knowing that I have that little dark bird on my shoulder. I know I will never make it to retirement age. But adventuring without a mission, without being attached to something larger than what I am doing at the moment, that eventually becomes unfulfilling. As Deborah says, "Send your questions out into the universe and it will take care of you." So there it goes: POOF - out into the ether.
Please feel free to share your wisdom!
We recently returned from our latest microadventure. It was fabulous. It feels like we are just starting to get our adventure groove back. This time we went off-grid, to some remote BLM public land in central California, catching the last of the flowers in the chaparral. Tater took care of us; we were back on solar power. Our little kitchen was packed with food. We kept a sack of adventure and inspiration books by the settee. It was fifteen miles to the nearest cell service or internet. Incredibly, we found a spot where the Bureau of Land Management had recently constructed some sun canopies, perfect for hammocks. We hiked in the cool mornings, then spent hours in our hammocks in the shade, reading, dosing and admiring a million dollar view from the side of Laguna Mountain. On the last day we stopped at Pinnacles National Park for the last visit of the season and were rewarded with ... snakes. Bear Gulch Reservoir was full of beautiful black and yellow garter snakes. I have never seen such a density - at one time we saw five in an area the size of an automobile, hunting just at the water's edge. So of course I put a foot into the water and let them slink over me. A biologist's dream. But the Western Diamondback Rattlesnake on a later hike was a different story, as I have never seen one buzz so long and intensely at me. It was a big magnificent creature.
And as usual, we felt better as the days went on. We had challenges. Our rig got dirty. A tire went flat. We got scratched, hot, cold, and at one point acquired a few ticks. I took outdoor baths every day. It was perfect. So I am now up to slow 3 mile runs. A long way from a marathon but I have been here before-- a marathon is nothing more than a series of 3-mile runs.
The doctors have told me that my chances don't change by living large, that I really have little control over this miserable disease, but I do have control over whatever time I have --- as nearly all of us do. So go and make stories. Right now.
Lessons learned and reinforced: Last weekend was rough. Deborah and I were both suffering from the side effects of our respective therapies. I had taken a step backward, with worsening graft-host rejection and an increase in anti-rejection drugs. I was still on an IV an hour a day. Depressed and feeling thoroughly sick, we hooked up Tater (with my IV and sack of medications) and escaped my brother's driveway in Sebastopol. Four hours later, camped in Pinnacles National Park, we started to feel better. Again we were searching for the threatened California Condors, the largest bird in North America. And this time we scored. I had eight sightings over four days of these massive birds with 9 foot wingspans. Mornings were cool and foggy, so by the second day I met my embarrassingly humble goal of running non-stop for one mile with an IV port flapping against my chest.
Once again, I could have been sick and watched videos from bed. But there is no video substitute for the wildlife we saw. Days were glorious. At night we put out the party lights and cobbled together the beautiful remnants of how we use to adventure. There was no cell reception or internet. It was good - very good - and we improved a bit. We made it back to the Bay Area a couple of hours before our first medical appointment, bouncing good news and bad news off our backs like water on ducks. I had the IV removed from my chest. Whatever. Today we did the laundry and grocery shopping and an hour ago I hitched the Airstream to our go-anywhere, pull-anything truck. We leave in the morning for some even more remote camping a few hours south of here where... I. Will. Run. Trails. - And of course we'll also read a stack of good adventure books, eat well, nap in our fabulous hammocks and live waist-deep in nature.
Late in the week, we'll slip back into town for my next doctor visit like half-drunk all-nighters slinking into work on a Monday morning. Oh yeah.
Even when life is crap, and especially when it is so, just go, just do. This is it, all there is, right now.