It has now been about a month since my previous blog entry—by far the longest I've ever gone between postings since I launched this site in December 2007.
I decided that this pause was necessary in order to focus all my energy on my treating a diagnosis of multiple myeloma, a cancer related to my body producing too many plasma cells. I have it in an aggressive form and—with the able assistance of a young and crackerjack team of oncologists in Duluth MN—am treating this cancer aggressively in turn. We'll see who prevails.
Happily, I now feel enough better that I am tentatively sticking my toes back in the healing waters of publishing to see what I can do—both to get clearer about what I'm experiencing and to let others in on the story. (It is an all-together different thing to simply experience a thing than it is to take the time to try to share the depth of that experience with others. Thus, my writing about my journey helps me understand it more profoundly.)
Though I am not in a position to make any promises about how much I can sustain this renewed effort, I'm intrigued enough to try to do what I can...
o I needed to come to grips with my facing a serious, life-threatening illness, which has required of me that I set everything else aside excepting considerations of my health, my intimate relationships, and my relationship to spirit—all of which are intertwined. Fortunately, I have much to draw upon in all three arenas. So the cupboard is not bare.
o Once the diagnosis was made, I immediately embarked on an aggressive treatment of the cancer. My kidneys had been severely compromised and I needed to turn that around pronto to have a chance at recovery.
o While it was not difficult for me to make that decision (on some level I've known for months that there was something seriously wrong with my core health and I was trying to limp into my home base in Chapel Hill for time in dry dock over the holidays, such that a thorough check-up could be scheduled nicely between consulting and networking assignments). Clearly I was selling my health short. I didn't make it past Duluth and was psychically ready to yield when the word came down.
o That said, it was completely foreign for me to enter the world of Western drug therapy and I had almost no frame of reference with which to make sense of what was happening to my mind or body. I could barely tell what day of the week it was and I was mostly floating. I couldn't complete sentences or string together meaning. While this had a euphoric quality, it was also highly disorienting, and I have no idea how anyone could self-manage this phase of treatment without strong support.
Fortunately, the fog of February gradually lifted and I am regaining a lot of functionality, bits at a time. I can't tell how long this new phase will last, but it's been enormously reassuring to be able to place myself again on a more familiar map of reality.
For the last fortnight I have been at Ecumen Lakeshore, an assisted living facility along the North Shore of Duluth. It has been an excellent transition facility for me. I no longer need the intensive services of the hospital, yet need too much support for independent living with Susan.
At Lakeshore I am getting help in three main ways:
a) Regular physical therapy which helps me regain strength, appetite, balance, and functionality.
b) Easy access to doctor appointments and outpatient service at St Luke's in conjunction with my chemo-therapy (navigating Susan's second story every time I make a trip to the doctor's was exhausting; at Lakeshore I'm able to handle all the car trips without negotiating stairs).
c) It is an essential bridge between the onset of chemo-therapy and my upcoming application to Mayo to be considered a viable candidate for stem-cell transplant therapy—which protocol my oncology team strongly supports.
Thus, the road map for me is to complete my last two weeks at Lakehsore and then drive down to Rochester MN with Susan for an appointment March 24. There we will meet with a transplant expert to determine if I’m a suitable candidate.
o If this gets approved, we will be placed in a queue to get the transplant procedure done, which we anticipate may take about two months to complete (once you take into account all the careful work needed to successfully eliminate all the bad plasma in my system and replace my cancerous bone marrow with healthy stem cells). That's my most optimistic scenario.
o If Mayo turns down my application, the fall back will be to apply for this procedure to be done at the University of MN, where my oncologists also have personal connections. Obviously, there are a number of reasons why there may be delays, even if I ultimately get supported, but the essence of all this is that I cannot test my ability to place the cancer into remission until and unless I get approval for the protocol. One step at a time. The next big milestone will be the appointment in Rochester.
o As I'm sure everyone can appreciate, there are nontrivial questions about wether the protocol will succeed even if I get approved to attempt it. That is, I may be getting to the cancer too late to turn it around—something we cannot know ahead of time. It’s a genuine test of my optimistic spirit.
o There are also serious questions about how I’ll be able to afford all this, even with full Medicare coverage—but we’re crossing bridges one at a time and I don’t want money to stand in the way and my giving this my best shot at management (even as I perform due diligence about applications, paperwork, etc).
o Last, I cannot complete this update without honoring the incredible upwelling of unconditional support I've been receiving from all over the world, from people who wish me well in this health odyssey. I reckon I'm only about a quarter of the way through the gauntlet so far, with many variables and speed bumps yet to be encountered before I'll fully know where I stand.
I am in awe of how much we all know that we need to stand together in times of need and am deeply touched by how many of of my friends and acquaintances have been reaching out to me in my hours of need. I am blessed.
Uncanniest of all has been my burgeoning, unconditional love with Susan, all of which has blossomed in the last nine months. Here we are committing to the unknown with each other based almost wholly on heart and trust—on being in the right place at the right time. Yes, we've known each other since our salad days in college, but that can hardly explain the strength with which we've come together in recent months, where we are facing the considerable unknowns of my health together.
It is a miracle to experience love like this and I wouldn't miss it for anything.