The house is a mess. I don't have time for much of anything except what absolutely must be done, which explains why I'm not blogging a lot lately. Marilyn and I are living our lives inside a turbo-charged hamster wheel consisting of treatment for CLL; renovating the house and paying for renovation of the house so that we can sell it; and keeping our business ramped up to pay for as much of the above without going into even more enormous debt than we already find ourselves in (Thank you, Bernie Madoff! May you live to be a hundred -- in jail, of course).
It’s a three-ring circus with lots of elephants plotzing around. Sometimes the building shakes. And yet this morning, as I poured a cup of coffee into my Far Side mug in the beautiful new kitchen I won’t own much longer (we hope), I felt a sense of calm and optimism that I had almost forgotten had once been part of my life.
Call it a flashback to pre-CLL, when the mere weight of the world hung around my shoulders -- as opposed to the mere weight of the world plus the prospect of death and how to avoid the latter for as long as possible.
Here I stood in a half-done house, enjoying what for us Arizonans is a delicious morning of overcast, drizzly, and cool Memorial Day weekend weather. I could look through the mess around me and see that there was a future somewhere. A move sort of impending, an adventure even, a next step that despite being in large part about CLL is not all about CLL.
The CLL part, as I have alluded to in this blog many times, has much to do with the health insurance I have. Thank God I have it, but it’s Arizona-based only and it’s restrictive and won’t pay for a stem cell transplant when and if the time comes. So unless something miraculous finally happens in Washington requiring insurers to cover people with pre-existing conditions, I will have to follow the four winds to a place where there is a high-risk insurance pool that will take me. Let’s see what moves faster -- health care reform or the sale of this house. I am hoping for both by the end of the year.
The non-CLL part has something to do with getting one’s life back in order. A lot of things have been let slide around here since I was diagnosed in 2003. Plans and projects shelved, everything deferred to matters of disease and, gradually, economics. Spin it as much as I like, it’s basically been a depressing, unhappy time. After almost six years, I have decided that you can’t truly make a silk purse out of the CLL sow’s ear. Perhaps the mistake is in trying too hard.
Now things are changing. There are physical signs of it wherever I look. And maybe as time goes on I have developed less propensity to worry. Maybe I’m sick of living la vida leuko. Maybe standing in a new kitchen amid old debris symbolizes the ability to get things done, to get moving, to somehow take a powerful step beyond the inertia that followed the gut-punch of a cancer diagnosis.
Who knows, maybe I’m just responding to negative ions in the atmosphere. I’m not expecting the CLL road to get easier. I am just hoping that my ride along it -- Marilyn’s and mine -- might be somehow less bumpy, perhaps more focused on the scenery. It’s a beautiful world, really. Sedona is a beautiful place, but I have lived in beautiful places before.
Another one, I hope, awaits. Physical, metaphorical, lyrical. I’ll take what I can get.
Perhaps, I hope, I have taken a step and am just a little bit there already.
5 Years Since I started on Ibrutinib for my CLL (chronic lymphocytic leukemia) in a Phase 1 Clinical Trial at Ohio State - May 5, 2017 marked 5 years since I swallowed my first 3 capsules of PCI-32765, now better known as ibrutinib or Imbruvica. I still take 3 battleship grey ca...
6 days ago