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Friday, January 20, 2012

Beyond Words and the Great Beyond

As a writer, I'd been struggling to find an end for this long and winding blog. Turns out that fate beat me to it. So I'll also simply jump to the punch: Friends, the doctors have given me just a matter of a month and some weeks until the tumors take their toll. I aim to give me more time on faith and strength alone, but medically, they say there's nothing more that they can do for me. Yeah, that's a tough pill to swallow, so go ahead, take a minute, and start to digest it. The rest of this post can wait.

My apologies for not informing more of you personally but, as you can imagine, those are emotionally rough calls to make. I just don't have the emotional endurance at present, but didn't want to hold off longer with the news.

Background story: When I last spoke briefly via this blog, the docs had given me December off so that I could spend Christmas and New Year with family and rest and gear up for the donor transplant, for which I was planned to check back into the clinic between Jan 2 or 5.

All was going well. I was deeply enjoying spending time with Sammy, and the freedom in my pad and all around town. But around mid-Dec, I started getting stomach and side cramps, and advised my doc that it'd been happening 2 or 3x a week. He said he'd set up a CT to check it out.

Just a few days before Xmas, the cramps were getting unbearable, so I called my doc, who called me back within the hour and with orders to be at the clinic in 2 hours for a hospital stay and same-day CT -- otherwise, we couldn't get the CT without having to wait for weeks.

The CT showed that the dinghies had spread, in a big way, pressing into my stomach, and sides -- precisely where the cramps were coming from. The docs couldn't believe it either, especially after the good response that my own transplant had brought on. Apparently, this happens sometimes: medium-growing tumors all of a sudden shift into high gear.

As immediate treatment, the docs gave me some doses of Rituximab and Cyclosomething to try to get the dinghies back in check, and a constant flow of morphine to dull the pain. Morphine's a hell of a drug. (Unfortunately, for some reason, Germany won't let you drive under its influence, which is a drag 'cuz I equate driving with freedom.)

The CT also showed that the donor transplant, even if we'd done it straight-through in December, wouldn't have been successful; The rate at which the tumors were growing would have been too fast for the new donor cells, which need time to set up camp. Whole thing woulda killed me - in a not so pleasant way.

So the docs called off the donor transplant. For good. No longer an option. In fact, there are no longer any mid- or long-term medical solutions at this stage of the disease. Only a couple of new chemos that my dinghies haven't met should give me a few weeks, maybe a month more than the December prognosis. Then, that's the end of medicine's Latin. Had my first treatment back in December. Now am waiting to get out of my current cell trough. My immune system still hasn't recovered from the first round. When it does, I'll be getting round 2 as an out-patient.

Other than waiting to deploy round 2, I'm on a purely spiritual treatment plan now. But I'm not alone as ever since the prognosis I have been continuously surrounded by love…

I got to spend a wonderful Christmas with Sammy and Anke and Franky, who came down for the Two Days of Xmas. Franky's been making the five-hour drive every weekend, to get as much hang-time as possible.

In early January, my parents and brother flew out, followed by my sister and her husband as well as my best buddies Jon, Scotty and Franky, who all came out for a week. Together with Sammy and Anke, we all spent an amazing week together, and I was so happy that the people who most shaped my personality, sense of humor, and my life - from childhood, through college, and through the Rock'n'Roll days of Hamburg - could all finally meet. And beyond meeting, they all really bonded as one big family, brought together by the least pleasant of circumstances. I'm comforted that these new ties will endure, also with Sammy and Anke. My parents and brother have open return tickets, so they'll at some point be tag-teaming so that at least one of them will be here to help take care of me when I no longer can. As noted, I'm surrounded by love.

Speaking of family, it's time for a long-overdue shout-out to the real heroes of this story. Y'all have been praising me for my strength and spirit, but it's Sammy and her mom who've carried the brunt of the burden. I cannot fathom the strength that an 11-year-old must bring to bear to endure years of her father's illness -- and then to swallow the most recent news. Rest assured that she's letting it out, mostly with her mom, and that Anke and I are giving her all we possibly can in the way of comfort and further help from a therapist.

One of the most important things that we've tried to emphasize with her is that mourning and celebration can peacefully co-exist (see Harold, Maude; 1971) - that it's ok to laugh, and to play it up with friends, and have as much "life-as-normal" as possible. Another important thing is that there are no holds barred on emotions: anger, bitterness, rage... All fair game; All must be released (see Rock'n'Roll; 1950's to present).

In all this, it is hard to describe how I'm feeling. Beyond words. It's all so surreal, so incredulous. I always knew I was walking a fine line, but always had the sense of, "Yeah, cancer, ok, that got me, but what?... dying from it???!!! Oh, that's not gonna happen to me???!!! This crap ain't gonna get the best of me any time soon. I got years to go."

There's also an odd feeling of guilt for having the easy part. It'll be just a snap of a finger and my part's done. The docs have ensured me that, through to the end, I won't have to suffer in pain, thanks to increasing doses of morphine.

What gets me is the long tail of sorrow and pain, and the emotional and psychological strain that I leave on Sammy, and on her mom, who has the biggest task with taking care of the little angel. Not to mention the sorrow I'll leave on family and friends. After the sorrow fades, hopefully you'll all be left fond memories of fun times, good laughs, greatest hits and near misses. But while confronting all that comes with the thought of no longer being here, I'm at peace with life. I've led a very fulfilling life. I hold an enviable memory of wonderful experiences with great people, and no regrets for what was or what might have been, no resentments towards anyone. Still had so much on my life's grand to-do list, but perhaps there's a higher calling of higher to-dos waiting for me in the Great Beyond.

Otherwise, my mind's been thinking about all the shopping I'm gonna need to do. I don't have anything in white, or red, for that matter. Don't yet own a turban. My head has long been shaved to appease Buddha, though - so I got that going for me, which is nice. Will try to keep you posted in the next weeks, and hope to visit with as many of you as I can. Bear with me please on meeting plans: I'm having good days and bad, with nausea, stomach/side pains and just-plain-tiredness as the main offenders.

With great love, admiration and appreciation,


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