Tuesday, April 26, 2016

April: a Tough Month Along the North Shore

Mondays are my day for blood work, to make sure I'm on the right course with my chemotherapy.

After five hours of running the gauntlet of appointments, here's what's going on in my world:

o  The wind picked up last night and started blowing hard out of the Northeast. As the long axis of Lake Superior is angled from southwest to northeast at Duluth, that direction afforded the water all night to build up a head of steam as it crashed this morning into Duluth Harbor. Think 39-degree spray with waves in excess of six feet. Bracing. There is an ore ship hove to outside the harbor, unwilling to run the shipping canal under such raucous conditions.

Susan and I took an extra 30 minutes on the way home from the hospital and sat in a parking lot watching (feeling?) the waves crash ashore.

o  More good numbers from blood tests: my last light chain number had shrunk to 50, and all others were trending in the right direction as well. Thus, as hoped, my medical forecast is good news: steady as she goes into my July 12 date for a stem-cell transplant at the Mayo Clinic.

Weight, Weight, Don't Tell Me…
As a regular feature of my Monday check-ins, I get weighed. While you might think this is just SOP with doctor visits, it was a feature of concern in my health profile. I had lost about 50 pounds from the onset of my lower back pain in October 2014, and I was down to 150 pounds in early April—while I started this odyssey overweight, enough was enough. The doctors need my weight to stabilize as a precondition for the stem-cell transplant, and I didn't want to slide down any further either.

To be sure, I was interested in losing weight anyway. Now, battling cancer it seems an especially poor idea to be asking my beleaguered body to portage around extra poundage (particularly unproductive plasma cells), and I am motivated to find a new baseline. In this regard, April has been a great month. I've manged to keep my weight in the 150-56 lb range all month. Yippee. (And if I can keep it there the rest of my life, I'm happy with that.)

To get there I made a few subtle yet significant lifestyle adjustments:
—I've cut back significantly on between meal snacking.
—I try to not skip any meals, though I'll go light on lunch if anything.
—I satisfy myself with single servings and resist taking seconds.
—With the modest exception of pushing myself somewhat to eat something at every meal, I generally listen to my body and don't eat a thing if I'm not hungry or not inspired by the food.

In executing this plan it has helped enormously that Susan is a great cook. On my journey toward achieving a resemblance of domestic partnership I have a long way to go before I'm, pardon the expression, carrying my weight in the house, but Susan has been patient and we're both excited by my continued recovery from my February as a poster child for basket cases. Now that I've mostly got personal care needs under personal control, engaging on the domestic front is next up.

In the last fortnight I've taken over full responsibility for seeing that all of my pills and supplements make it to my mouth in a timely manner, and this morning I agreed to take over as chief coffeemaker. Can dicing onions be for behind?

o  As you'd expect, Dr Alakied was happy to see my numbers, and we enjoyed an easy flowing connection today. As it turned out, he had been having a not-so-easy week, where he had to tell patients bad news more often than good, and he shared with us that that's the hardest part of the job—when he's done his best, it hasn't worked, and he has to tell the patients that it's the end of the line what help they can get from medical intervention. It sucks.

It helps him a lot to have patients like me, who have a positive attitude and are succeeding beyond expectations in response to the treatments he recommends. Like a lot of us, it's hard to sustain a positive disposition when you're not seeing enough bounce from your efforts. Thus, my good news helped counterbalance an otherwise tough week.

It was highly satisfying to me to know that at least in a small way I was able to give back to Dr Alakied after he's given so much to me. A tender quid pro quo.

As a bonus, Dr Alakied took the time to explain in greater detail how my form of myeloma is different from more prevalent kinds and why that necessitates paying attention to different markers and recommending a protocol that's tailored to my specific case. As Susan's employment history included a stint as a research lab assistant at the University of Minnesota, she had a working understanding of some of the biochemistry, and it was a fascinating tutorial, complete with graphics.

o  Though April is appearing to be the lost month for spring weather along the North Shore (much as February was my lost month for cognitive engagement), we may be able to catch something nice right at the tail end. It turns out that this Saturday will be Susan's birthday and we're hoping to celebrate by joining friends Ray Martin and Elsie Myers as they open their cabin near Stone Lake for the summer.
When we get there Saturday morning we'll see whether the timing was prescient or wistful thinking.

(And if you think the local residents have been long suffering, the Minnesota Wild and Twins haven't had such a hot month either.)

Of course, even if April holds out until the bitter end, May is not far ahead and I expect a big boost when we flip the calendar on Sunday.

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