Monday, March 21, 2016

Redefining Home

As planned, Saturday was discharge day from Ecumen Lakeshore. Susan and I are happily sleeping at the same address now, in her house near Chester Park.

This time around is a night and day difference from the last stretch (Feb 19-26). I can negotiate trips to the bathroom solo; I can go up and down stairs without crashing my limited energy budget; I can sit upright for several hours at a stretch without any back pain. Today I walked to the car to keep a dentist appointment and didn't use the walker at all. Mostly though we're enjoying the novelty of being together, my diminished pain, and the sharp decline in the need to be chauffeured to and from doctor appointments. 

This respite will only last a few days and then it's down to Rochester for our big date at the Mayo Clinic Thursday.

During this at-home interlude, I'm particularly interested in keeping my eyes open for any emerging markers, pointing the way to what my post-Mayo rhythms may look like. Given my strong attraction to writing, I've been thinking about how to set up a table and chair so that I can make the most out of each session. I won't need much, just sturdy furniture and an out-of-the-way location with adequate light and power.

The goal is to reduce my dependency on Susan's logistical support to as little as possible, so that our time together highlights the preciousness of our connection; not the precariousness of my health. While I still have an unpredictable relationship to secondary torso pain (think ribs, mainly), I'm gradually gaining better control of my breathing and am making steady progress getting in and out of bed without sharp pains.

To some extent, Susan and I sit on the edge of a precipice, waiting out the two days remaining before our date at Mayo. My prospects for successfully managing the cancer are hinged directly on Mayo's response yet I have only a vague idea what's likely. Essentially, I've cast my lot with my oncology team's assessment and recommendation. Happily, my sense is that we're all singing from the same hymnal and thus my presentation should come across (on the doctor-doctor level) as cohesive and sensible, well-backed by test results that have positioned me as a good candidate for stem-cell transplant. We'll see if the good doctors at Mayo agree with that assessment.

While there remain a large number of variables in how this will play out, the Mayo decision looms large. If accepted for their protocol, I expect the treatment to entail heavier-duty chemo-therapy than I have undergone to date, relying on the doctors and support staff at Mayo to manage the high-risk procedure of sterilizing all my bone marrow and then repopulating it with my own, healthy stem cells.

All of the little things that Susan and I are tweaking at 1014 Chester Park these few days are just so much putzing with furniture while we wait to hear for whom the large bell tolls.

To be sure, there is connection and sweetness to these light days clustered around equinox, and I am pleased that the clock beats no faster than it does. The doom of Mayo will arrive soon enough and will be no less potent for having incubated a few extra days.

The key piece is that Mayo is something I will experience with Susan; not alone. That is my lode star.


Diedra S. said...

Hello Laird, I am pulling for you, wishing you the best with this journey you're on, to Mayo and beyond. Been reading your blogs and feeling sad that you are having to go through all this pain. I don't know if you have seen my previous notes to you since I didn't hear anything in response, but I am happy to have this connection to you, even one-sided. I am glad you have love guiding you through.

My best to you--
Diedra Silbert, old Sandhill buddy

Lotus Allen said...

Hi Laird, I'm happy to hear about your progress and that you are feeling. I wish you continued healing and good luck with the trip to Mayo and beyond. Wanted to let you know that a friend, who is disabled with back disease, had her computer set up so that she can work while she is in bed; her husband helped her with this, but it's fairly simple, involving a rolling table and a contraption that angles the computer screen / keyboard correctly. I imagine you could do something similar, so that you could also have this option available, if you choose. If you need more info on this, let me know and I'll see if I can get it for you. All the best to you and Susan, Lotus

Becca said...

Hi, Laird,
Thinking of you and following your progress. Will be thinking of you on Thursday at Mayo. Writing was a great comfort to me while I couldn't do many of the other things I loved. I, too, thought of the in-bed writing options when I read your post...
Much love,

MoonRaven said...

Congratulations on being home--if only briefly, and I hope things at the Mayo clinic go well.