Relishing One's Work

In my four decades at Sandhill Farm I gradually developed specialties—just like every other member. In my case I was the community electrician, the guy who filed taxes, the butcher, and an acidified food expert (that is, I processed the lion's share of pickles and condiments during my tenure—anything that could be canned in a hot water bath, rather than via pressure cooker).

The joke was that when I was away from home (about half the time), I'd be processing group dynamics. When I was home I'd be processing food.

In the Midwest, my busiest stretch was July through Oct, with August being the peak. That's when the tomatoes start rolling in, which meant tomato sauce, tomato juice, salsa, barbecue sauce, and ketchup. Leaving aside the occasional once-every-five-year crops, I'd also work up batches of corn relish, dilly beans, tomatillo salsa, horseradish, pickled beets, damson plum preserves, and pepper relish (both medium and hot). I'd spend many a day in the kitchen, emptying five-gallon buckets of garden bounty, turning their contents into canned goods that we'd either sell or enjoy ourselves. While others worked in the dirt; I worked over steaming kettles.

When I got sick last year (I was diagnosed with multiple myeloma in January 2016) it appeared that my canning days might be over. But they aren't! Last fall I recovered from my stem cell transplant in time to be crank out a token run of tomatillo salsa, headlining fruit Susan produced in our postage stamp garden in Duluth.

As my health has gradually improved since then, I upped the ante this past week when I went wild at a farmer's market in Spooner WI. Monday I canned five jars of dilly beans, eight units of pickled beets, and 13 pints of corn relish. Although it was a long, wet day of cutting up in the kitchen, it was highly satisfying to dust off the canning funnel and jar lifter, and to be back in the swim of water bath processing.

• • •

Our glory in the kitchen continued yesterday after Susan and I sat down on the couch mid-afternoon to puzzle over that diurnal challenge that most households face: what's for dinner? Determined to do something about reducing our inventory of foodstuffs (after struggling to find space in the basement to store our burgeoning supply of canned goods), we started with the idea of featuring a beautiful fresh head of garden-surplus broccoli that had been given to Susan at work that morning.

As we have a goodly supply of organic pork in our freezer, we hunted online for a stir fry recipe that combined brassicas with tenderloin. While there were some, we got distracted (always a hazard when browsing the internet) by a recipe for spicy pork with kumquats. Say what? Incredibly, we had 5 oz of fresh kumquats in our fridge—exactly what the recipe called for. We took that as a clear sign that this is what we should have for dinner.

But wait a minute. As we looked more closely at the recipe, it called for additional oddball ingredients:
Chinese five spice seasoning
Hoisin sauce
Oyster sauce
Fresh ginger root
Mirin (aka rice vinegar)

Riding the wave of our good fortune all the way to the dining room table, it turned out that we had all of these in stock (no wonder the fridge is crowded), substituting only fish sauce for oyster sauce, which we decided was close enough. Yeehah! We were the winners of an impromptu kitchen scavenger hunt.

Not content to leave it there, we still had to figure out what to do with the broccoli (remember, that's where we started). This led to our improvising a second stir fry, this time blending:
Broccoli
Onion
Radicchio
Cashews
GarlicGreen banana pepper
Red bell pepper
Crimini mushrooms

While we made a quick trip to the neighborhood market to secure the last two items, all else was on hand. The cutting up took about as long as the cooking, and we finished in time to catch the PBS News Hour with Judy Woodruff, to see if we were at war yet with North Korea.

Dinner was rounded off with a bottle of chilled Riesling and a peach cobbler I'd made with fresh fruit that afternoon, topped with vanilla gelato (on sale at our local co-op). One more note: when we found the pork cum kumquat dish not quite as zesty as advertised, we improvised with a few spoonfuls of sambal oelek at the table, fine tuning both the color and the taste. Perfecto! (Fortunately, we always keep a jar of chili paste on hand in the fridge for moments like this.)

We figure we were the only ones in Duluth (maybe the country?) enjoying this particular menu last night, relishing our work both in the kitchen and at the table.

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!
 

Cancer Update: the Treatment Begins

Yesterday, my oncologist (Dr Alkaeid) decided on a definitive diagnosis: I have multiple myeloma, as original suspected. 

There was a delay in reaching that decision because I have it in an unusual form which makes tracking it somewhat more challenging, and it is somewhat more aggressive than its more common forms, but this bad news is counterbalanced by the cancer being pretty well understood and that it is in a family of cancers in which tremendous strides have made in treating it in recent years (when Susan told our oncologist that her father had died of multiple myeloma in the 1980s, the doctor said the 1980s was like the Stone Age in comparing treatment then with treatment now).

That said, there are complications. The number one priority is saving my kidneys (to avoid dialysis or a kidney transplant). As I reported Monday, their functionality was down to only 20% when I arrived in the hospital Sunday. They were being strained on three fronts: a) processing all the excess calcium in my blood as a byproduct of the bone leaching characteristic of myeloma; b) processing all the useless plasma cells that were being produced by the myeloma; and c) chafing at all the ibuprofen/naproxen I'd been taking to ease my back pain. My kidneys were just plain wore out and close to renal failure.

In treating the cancer, the first step is to kill off as many of the cancer cells as possible through chemo-therapy, but the docs have to be careful the this doesn't lead to a toxic dump that swamps the kidneys. 

After several days of trying to flush the kidneys of the excess calcium and abnormal plasma cell detritus (to enhance their functionality) last night I started a course of steroids and chemical warfare targeted to knock out the cancer cells at a rate that my kidneys could keep up with.

This will be done in courses of chemotherapy, each one taking two weeks. After a course is completed it is evaluated before another is started to see how to adjust the medication for the next course, or whether to stop that protocol. 

Assuming I get through that OK, the next target is to strengthen my bones through re-calcification. Again, care must be taken that the kidneys are robust enough tolerate the treatment. Meanwhile, my bones are thin and at least somewhat more susceptible to breaking than in a healthy person. I have to not just be careful about lifting; I have to be careful about sudden torquing or unusual weight loading of arms and legs.

On the brighter side there is reason to hope (though no assurances) that I can recover a significant amount of renal function if we take away the stressors. That is, the kidneys have some capacity to regenerate and it behooves me to make the most of that possibility, through careful lifestyle choices. This can include diet, travel, and workload but I don't yet know the dimensions of what will be asked.

As if this weren't enough, I still have the presenting back pain that got me to the hospital in the first place. While it's probable that it's related to the myeloma (for example, the calcium loss has led to partial collapse of three vertebrae—T 11, T 12, and L1—if you're keeping score at home), we're not sure of the mechanism yet or even the best way to treat it. 

That said, the doctors are agreed that it's a bad thing for me to stay supine and I need to be moving more and upright as much as possible. Toward that end, I'm taking oxycodone for pain relief and working with a physical therapist to get me out of bed every day and walking—I'm not doing anything quickly, but at least I'm starting to do some of it vertically.

Today, for the first time in a month, I did a 100-foot sojourn (around the nurses desk before heading back to bed with the aid of a walker), and sat up to take my dinner for the time since December. Small but important steps to life-after-hospital.

The news that landed best all day was a story this morning from one of the staff oncologists (Dr Perlov) who said that he treated a man just last December who presented with another version of multiple myeloma with the same degree of complications as mine and he's well on his way to full remission and excellent prospects for about 15 years of healthy life ahead. 

It sounded damn good to me.