Tuesday, May 24, 2016

What I Learned about My Recovery Going to Salt Lake City

This past week I journeyed to Salt Lake City. The cornerstone of this junket was conducting a four-hour workshop on how to manage difficult conversations about aging in community. It was a prime example of the kind of thing I used to do before getting my cancer diagnosis in late January and undergoing chemotherapy.

Since then I've come a long way in adjusting to my new life and working with my oncologists to figure out the best protocol for winning my battle with multiple myeloma. So far, knock on wood, I've been bouncing back well. I have good doctors, a strong will, an incredibly supportive partner, and the benefit of many others with my diagnosis who have already successfully walked the path I'm on. Thus, though I'm seriously ill, I have chances.

An integral part of the approach that Susan and I have developed is that I keep reaching for "normal." No sooner do I take one step then I reach for the next. Let me give you an example.

When I got out of the hospital Feb 19, I was either in a wheelchair or hobbling around with the aid of a walker. While in a rehab center Feb 26-March 19 one of my main goals was increasing my mobility, which translated into exercising with the walker and working on flexibility. When I graduated from there and went home, I stopped using the walker. A month later, circa April 15, I stopped using the wheelchair. While I haven't been walking fast, and my stamina still needs a lot of improvement, I get around pretty good.

To be sure, I was happy to take advantage of wheelchairs to negotiate all three airports I was in last Wed en route to Salt Lake City, thus avoiding the potential that my stamina would be exhausted just changing planes, but I've come a long way since Feb 19.

At home the bedroom and bathroom are on the the second floor, but I get up every morning and walk downstairs for all meals, and my periodic bouts at my laptop. In the last month I've been walking up and down stairs by working equally with both knees—essentially rehabbing the right one that I have been favoring since hyper-extending it in a bowling accident in 2012. The next step is to try to go for regular walks around the block. Speed is not the goal; just getting around safely (not falling) and working my legs, gradually extending my stamina.

The kitchen is another frontier for me. Instead of relying on Susan to do all the meal prep and cleanup, I am slowly working my way more into the rhythm and rotation of the day. It's important for my partnership with Susan that I keep reaching for the middle ground and am mindful of the gap between where I am and where we want me to be.

This approach makes it possible to notice and celebrate small increments, which helps with overall morale. 

I told you all that to help frame our trip to Salt Lake City, as it was another step in my recovery. 

While the arrival of cancer in my life has helped me see that it's time for an adjustment in how I do my life (less pressing on the gas and more looking out the window and appreciating all the amazing connections in my life), I fully intend to return to some level of engagement in the world of cooperative group dynamics. So this was a stepping stone in that recovery. Next month I have a green light to extend myself a bit further: conducting a three-day facilitation training with Ma'ikwe Ludwig in Portland OR.

So what exactly did I learn last week about how far I've come and what's ahead?

o  I bounced back well overnight (by going to bed early) after running out of gas before the end of the day. On the first day out that was due to the rigors of plane travel; on the second day by visiting with friends and family in the morning, followed by full-on teaching in the afternoon.

o  I slept OK on the train in a roomette. Our journey from Salt Lake City to Chicago was 36 hours long, including two nights. The key, I think, was being able to lie down, when I let all my vertebrae extend and relax. Less clear is how I'll experience coach travel on the train, where I'll be sleeping in a 45-degree reclined position.

o  My back did all right on an overnight bus ride, which is comparable to an all-night train ride in coach, though more cramped. While I didn't sleep that well on the bus, neither was I in much pain. Hooray. That's a big deal.

o  It was smart to get wheelchair support to negotiate airports (much less walking—which I can manage in small chunks, but which draws down on my energy reserves).

o  I benefited greatly from Susan's help with managing baggage. There were a number of times where I only carried one piece of light luggage, while she handled our suitcase, her knapsack, purse, and my tote bag. I have to think carefully through what I can realistically manage on my own when going to Portland. For example, I ordinarily travel with my own food, but that's heavy. For this next trip I'll eat in the dining car. It's harder on my wallet, but much better for my back.

o  There were a number of times when I felt nauseous. Though I never threw up, I was close at times and I'm not sure why. Access to Zofran (an anti-nausea drug) helped keep me from loosing my cookies. But why was I so queasy? It's been a relatively rare occurrence since my initial hospitalization in late January, but if it's associated with travel that's not good.

o  Meals worked better when I kept my portions small and ate more frequently. It's not pleasant feeling stuffed. (From a nadir of 150 lb I've now eased back up to 160 lbs the past three months and my doctor is pleased—I'll need that extra weight to sustain me through the stem-cell transplant.)

o  Reaching out and lifting a light object with one hand (say my laptop) no longer tweaks the muscles in my rib cage. While this is a modest gain, it makes everyday life much easier.

o  I'm still not working full days. I take time off to rest between sessions at my laptop. This routine is working well, yet it's dangerous to work full bore, where I may no have enough recovery time. The metaphor here is that I can reach the same peak output I could before the cancer, but my battery won't (yet) hold the same charge. That means I need to make adjustments in how I handle the pace at facilitation training weekends. I have to protect breaks to recharge.

• • •
All and all, my trip to Salt Lake was a success. I was pleased to see so many friends and acquaintances at the cohousing event, and to see that I had come far enough to be able to answer the bell for high end teaching, at least for chunks of time (and field discreet inquires from more than a few potential clients about my availability for consulting after the summer). It also was invaluable to me that Susan was able to witness my work first hand, to see how much I love it and how much the audience appreciates what I can do. My telling her about it is not the same thing.

It was wonderful, having five days in a row with Susan where we didn't need to juggle her work schedule, foreshadowing a lot more travel that we would like to do together. 

One of the highlights was an impromptu dinner at The Parthenon restaurant on Halsted in Chicago between our train from Salt Lake and our bus to St Paul. The lamb with artichokes was divine (a lamb shank slowly stewed in lemon dill sauce, garnished with artichoke bottoms). Yum! Maybe next time I can also enjoy a glass of retsina with the olives and tzatziki sauce. Opa!

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