Laird's Blog

On Being a Cancer Survivor

I recently received an engaging email from a close friend who has been going through her own journey with cancer, parallel with mine. Though we have different diseases with different treatments and prospects, it's nonetheless been a time for deep reflection for both of us.

She wrote:

Just catching up on your blog and Caring Bridge after a challenging week. I'm so glad to hear things are progressing in good directions and that you are home! "Cancer survivor" is a label I have not yet become comfortable with myself, partly, I think, because of the uncertainty; partly because it seems strange to add badges of pride when I'm trying to learn to be more humble; and partly because "cancer treatment survivor" feels more apt in my case (and yours has been and will be much more grueling); but in any case may it be an accurate descriptor of you (and me) for many, many years to come.

This is a provocative topic for me, and I think there are a number of threads swirling around it, comprising the yarn ball of my thoughts:

o  It helps me to hold a positive image of my future that is not about whitewashing. I need to simultaneously own that I have been very sick and that a positive attitude going forward is an essential part of my healing—that one attains or sustains “health" by working on many fronts, attitude being one of them.

On the one hand, embracing the label of "cancer survivor" may be seen as whistling past the cemetery (acting braver than I feel). On the other, I think it's good for me to not forget that I'll have cancer the rest of my life—however long that is. Axiomatically, I'll be a survivor until I'm not. Meanwhile, all actions I take from now forward are those of someone who has cancer and has been working diligently to not have my blood pressure spike when I think about it; to find ways to be vital and healthy anyway.

o  I need to make peace with cancer in my body. I don’t want to ignore it and I don’t want to be obsessed with it. I want to accept it as part of the package of who Laird is today. I’m a person who is not done living and still has a lot to contribute in the world. Today though, unlike two years ago, I am a person with cancer and I need to make choices going forward that keep that in perspective. I do not know how much time I have left (do any of us?) and want to choose consciously how I apportion my time. It probably means more time with friends and loved ones, and less as a process professional, and that’s OK. (I think of it as a late-in-life course correction.) The key is wanting to be more conscious and the label helps me maintain vigilance about my choices.

o  As a professional facilitator, I am always looking for additional ways to bridge to people, especially outliers. I’ve come to understand that my history of good health has, ironically, been a barrier with some folks (how could anyone who’s been that blessed possibly understand what I’m going through?) even as it’s helped me maintain a heroic work schedule (until I collapsed in December). Thus, being a cancer survivor gives me another point of engagement, that I fully intend to use where applicable.

o  So much of what we identify as hard in life has to do with fear, and I’ve learned that by shining the light in dark corners fear is diminished. Because I want to make it easier to talk about fear, it’s incumbent upon me to take the first step. Thus, my cancer becomes an opportunity, and the label is an invitation.

o  You are right, I think, to point out that it's more accurate to say that we've survived our treatments than that we've survived our cancers, the remnants of which remain in our systems with uncertain futures. That said, it is not for me to tell another whether it is a label they should wear. 

Long ago I made the choice to be a public person. Not only does that mean that I ply my crafts in the public eye (as a public speaker, as a professional facilitator, as a writer), it also means that I have committed to live my life with a high degree of transparency and a willingness to explain how I got to hold the positions and viewpoints that I do. (If you're not interested, don't read my blog; no one's arm is being twisted.)

It means that I'm willing to share details about my personal life that many others consider private—not because I'm the arbiter of where the boundary should be or because I'm an emotional voyeur or a drama queen, but because I am often in the position of asking others to be vulnerable with me and I need to walk my talk.

Right now, cancer is a big deal in my life. While it's not going to stop me going forward and it may not remain the first article above the fold in the biweekly publication of What's Going on with Laird, it's a compelling complication and an entrée to the Pandora's Box of what remains of my life. Make no mistake about it; I am going to open the lid. And I'm going to write about what I find—warts, spiritual revelations, clay feet, and all. 

I can't not do it.

Potholes on the Road to Utopia

Saturday I had a phone date with a prospective client—a community that was experiencing increased tensions and wasn't sure where to turn. Interpersonal dynamics were deteriorating and the folks calling me on behalf of the community were worried that they were going to soon start losing people—good people—unless things got turned around soon. Could I help?

Boy, did that energize me! 

The group does not currently train new members in their consensus decision-making process and doesn't have any agreements about how to handle conflict—two deficiencies that go a long way toward explaining why the wheels are just about to fall off the wagon. Yet, the cupboard wasn't bare either. When I asked how many people might come to a special plenary aimed at focusing on interpersonal tensions, I was told over 80 percent, which would be a terrific turnout. Further, the group started seven years ago, so they have considerable common history together, most of which is positive. That is, they have something worth saving.

While there are a number of things going on, a key one is understanding better how to work through differences. Inadvertently, the group had fallen into an unproductive groove where dissatisfied minorities were not voicing their concerns early enough in the process, with the result that the minorities were feeling steamrollered (where is it safe to bring up differences?) and the rest of the group was feeling monkey-wrenched (why are major concerns not surfacing until the last moment?). Yuck. Each side believes they are acting in the group's best interests but that is not being recognized by folks on the other side of the aisle.

The good news is that this can be turned around. While the group is (understandably) nervous about how to work constructively with strong feelings and is not confident they have the internal skill or permission to facilitate those moments, that can be learned. If you attempt to do problem solving without having first addressed major distress, you have a train wreck. Yet if you are too scared to deal with the strong feelings you feel trapped. In these circumstances it's easy to see why the group may be leaking a lot of oil, and coming away from meetings feeling drained.
Apropos this issue, here's an helpful image that I picked up Saturday (right before the call I mentioned above), as a souvenir while strolling with Susan and Jo through the Arts Fair at the Tall Ships Festival in downtown Duluth. While a lot of people may choose to rely on this as a reminder to take a bath, I prefer assigning this 62-foot rubber ducky (nicknamed Paul Bunyan's bath toy) the task of reminding me to not duck the issues. Who knows, maybe Baja Smoothies (masking the duck's right wing in the image above) help, too.

Tall Hopes and Tall Ships

Today I wrap up in Rochester. I'll have my exit interview with the Transplant Team this morning, followed by a conversation with Dr Buadi (freshly back from Ghana), who will go over my status and give me final instructions for resuming my normal life, or as close as I can come to it at this time. It's a conversation I'm keenly looking forward to.

As it happens, our return to Duluth coincides exactly with the arrival of the tall ships (a flotilla of at least eight classic ships powered by sail) in Duluth, triggering a celebration that will extend through the weekend and is expected to attract 300,000 tourists. Ugh. 

While traffic arteries may be clogged, that will not undermine my good mood. Regardless of what's happening on the water, I'll be coming home to complete my recovery and to start my new life as a cancer survivor. I'm ready.

Gradually, I've been able to overcome residual aftereffects of my treatment: persistent nausea, lingering diarrhea, and a balky appetite. Each day I've gotten stronger. It's been great having Jo join the care team from Las Vegas for this final push, giving Susan a break from cooking and gaining her complimentary help in managing the obscure pop culture clues in the daily New York Times crossword puzzles. (While Jo didn't think she'd be much help, it's turned that where she's strong is exactly where Susan and I falter.)

Last evening we ate dinner with Randy and Jerry, a couple from Grand Marais (on the North Shore) who have been in Rochester since February as Jerry battles the ravagement of Agent Orange, which he was exposed to in Vietnam 40 years ago. Susan became friends with Randy 20 years ago when they were both working in the art gallery world, and the friendship has continued. Jerry is at Mayo's with the blessing of the Veterans Administration (who can't do as much for him a this point as Mayo's can), and it's a tough road for him, facing infusion therapy every day with no end in sight.

It was delightful to be in the presence of their grace and hopeful attitude. Very uplifting. If possible, Susan and I will try to manufacture a reason to visit Randy and Jerry in their second home in Truth or Consequences NM (quite the contrast with Grand Marais). I had once visited the River Bend spa and hot springs in town (right on the banks of the Rio Grande River), and would love to do so again with Susan. Perhaps next April, when the calendar says it's spring but the outdoor gods in Duluth laugh at such folly.

Today I stand with tall hopes and am ready to sail into my post-treatment future.

Shooting the Vee

It's been nearly two weeks since I last posted. In the intervening fortnight I've been through the Valley of Despond, the Desert of no White Blood Cells, and have been spit out like a watermelon seed thrumming with Bone Marrow Vibrancy.

After about 10 days of enervation, bordering constantly on nausea, I was finally able to get traction on my white blood cell count last Wed—on my third day of being hospitalized to stabilize my reactions to anti-nausea medications. In my first 66 years I had not encountered an allergic reaction to medication. Since February, however, I've stumbled into four: elotuzumab (a chemo drug used to treat multiple myloma), compazine (an anti-nausea option), scopolamine (another anti-nausea), and benadryl (an antihistamine given as a prelude to stronger drugs. Who knew?

Anyway, it took about three days in the hospital to sort out that I was susceptible to the last three on the above list, and I recall sitting in my darkened room on the last night (the wee hours of Wed morning), when Scott, my night nurse, shared with me the good news: my white blood count had come in strong: after three successive days of readings inching forward (0.1, 0.2, and 0.3), I'd caught a booster rocket: 0.7. I knew then that I'd turned the corner on engraftment—the point at which it's clear that my stem cells have successfully recolonized my bone marrow and were busily replacing my depleted blood cells.

It's weird to go from several days of a mind set geared toward survival (riding out the ravages of the mega-dose of melphalan that I took July 27) to suddenly having the sun come out from behind the clouds and the nursing staff natter about scheduling my exit interview. Wha' happened?

After finally shooting through the rapids of my stem cell transplant, suddenly I was in shoal water, looking for the quiet bay where we'd parked the car: it was time to go home.

In this case, our stay in Rochester will be extended a couple days to accommodate the return of Dr Buadi, the hematologist who is overseeing my transplant. He will be returning from his annual pilgrimage to his native Ghana this coming Wed, and we very much would like his take on my status before heading home. We would like his read on how my numbers look and what it portends for my cancer.

It's still sinking in that I'm now on the other side of my transplant; that I've accomplished what I came to Mayo's to do and the test now is no longer my ability to cope well with chemotherapy, but to turn all that good work into cancer in remission. My work now is to return with Susan to Duluth and live a full and joyous life. Wow.

There are many, many friends and relatives who have been following my journey closely, and wishing me well along the way. For months they have been the wind at my back, gently guiding me toward this moment, and steadying my gunwhales as the current got choppy. I am humbled by all the good energy that's been directed my way. Thank you one and all.

Day Three

It's a new month and I'm entering the final stretch of my stem call transplant: recovery.

Yesterday I started feeling weaker—as predicted—and I was out of breath after walking downtown (a bit over a mile round trip) at a leisurely pace to collect a Sunday paper. Because I knew that was likely to happen it didn't freak me out, and the Mayo Care Team was not alarmed. In fact, my stamina is likely to decrease further before I hit bottom (around Tuesday or Wed) and start to rebound. So I'm preparing myself for All Ahead Slow on my engine setting his week.

I completed the crossword puzzle with Susan and Ceilee yesterday, and not much else. Though Susan had only left Rochester last Monday evening for a break from every day duty as my primary care giver, she couldn't resist sneaking down from Duluth for a 26-hour appearance on the weekend, and I'm glad she didn't. She has come to mean so much to me that my heart was filled with joy immediately as she arrived early yesterday afternoon. Yippee!

The three of us (with Ceilee) celebrated my extended appetite and energy Saturday evening (before today's diminishment) be eating at an Irish pub called Whistle Binkie's (amazingly enough, there are two locations in town), that featured Scotch eggs and Irish Stew. While the food was average, the ambiance was delightful and we laughed a lot—and that was good enough for us.

As July segued into August, I was up in the night a lot, somewhat disoriented, but never nauseous. It was kinda surreal and floaty, but I'd rather have just slept right through it. Today, at blood draw the nurse had trouble getting blood to flow from my Hickman port which meant fooling around with it at Mayo. The point of having a port installed is to facilitate blood draws, not complicate them, but sometimes it doesn't work that way. Oh well.

Annie arrived today from Floyd VA, and it was great adding her smiling face to the room. She'll be here for a week, overlapping with Ceilee for the next two days. Tonight Ceilee grilled pork chops, corn on the cob, brussels sprouts, and jalapeño poppers. Olé! I only ate about half of mine but that was plenty of calories for this recovering boy.

Meanwhile, Ceilee has been mildly inveigling Annie and I to get involved in Pokémon Go. Apparently he's been able to collect and capture goodies on his smart phone just traveling back and forth from Transplant House to Mayo's on my mundane daily transits. Those little darlin's are everywhere, and it just looked like sidewalks to me. While it's highly unlikely I'll get sucked up in the rush, it doesn't mar my vicarious enjoyment on Ceilee's behalf. He could be doing worse things, such as trying to make sense of Donald Trump's recent attack on a gold medal winner.

For me it's mostly a quiet day of recuperation and trying to regain strength. I am incredibly thankful to be surrounded by loved ones at this time.

With Nary a Cross Word Spoken

Today is Day Zero, or Transplant Day. In a process that took about 10 hours I received back half of the stem cells that were carefully extracted from my bloodstream last week. They are the colonizers being sent back to reboot my bone marrow after wiping out the cancer lurking there with melphalan two days ago. Around 60 days from now I'll find out how much good it's done me (that is, how far the cancer has been placed into remission). 

Until then, my job is simple: recover from the chemo as quickly as possible. There are no more procedures to go through. Today was the last one (barring the unhoped for event of a setback of some kind, say an infection while my immune system is down).

While I have so far been able to proceed nausea-free (which I'm celebrating while I can—Ceilee is grilling chicken breasts for dinner tonight!), I noticed that my breathing was much more labored returning to Transplant House this afternoon. Energy loss was a predicted side effect of the chemo, and it appears that it's here. I'm concerned that loss of appetite and the onslaught of diarrhea may be next. We'll see. The nurses have assured me that there is considerable range among patients regarding side effects, and I remain hopeful that I'll be able to dodge the bullet on some of them. It's all part of the mystery.

As Joy, the Mayo dietician, has told us stem cell folks, "If you're having a good day, then you're having a good day; take it one day at a time and don't let worry about tomorrow cheat you out of enjoying the present."

I had a thoroughly good connection with my sister, Alison, this week, and today we executed anther caregiver shift change. Ceilee caught a red-eye from Los Angeles last night and arrived in Rochester around 8:30 am. While I was going through my 10-hour marathon treatment at the clinic, Alison oriented Ceilee to Transplant House routines and got him settled. Alison is now en route back to Chicago, and Ceilee is in the TLC saddle for his father. It will likely be an early bedtime for both of us tonight. given that transplants simultaneously put a lot into a person (in my case healthy stem cells) and take a lot out of a person (energetically).
• • •The image above was take yesterday by Alison in the Transplant House dining room. It exposes one of my main coping mechanisms (and recreational pastimes): working the daily New York Times crossword puzzle. The one above was from Thursday, typically a medium level degree of difficulty. Puzzlemaster Will Shortz (of NPR weekend fame) follows a sequence whereby Monday puzzles are the easiest to solve and get harder from there, peaking out on Saturday. The larger format Sunday puzzle (a 21x21 grid instead of the 15x15 grid for all other days) is usually about the same degree of difficulty as a Thursday.

Susan and I tackle the crossword puzzle together every day (or at least every day that we're together). As we have complementary areas of arcane knowledge, there is a synergy about teasing out the answers as a team that we both enjoy and serves as so much frosting on the cake of our tasty relationship.

If we can complete the puzzle without resorting to Google searches, then we award ourselves a star (which, along with $4, can get you a really good cup of coffee). It's quite hard to get a star on Friday or Saturday, but we keep trying and we're gradually getting better.

I like crosswords for a number of reasons:

o  To be good at them you need to be able shift perspectives with ease. This skill matches up well with what you want in a professional facilitator—which happens to be my line of work.

o  While it may be of dubious cosmic value to be able to hold and access a large RAM in one's brain, you get rewarded for lateral thinking, and being able to integrate knowledge about a wide range of topics—all the while polishing one's credentials as a prototypical Renaissance person. Can we have too many people in the world who are good with general knowledge?

o  Facility with vocabulary and spelling—two underrated skills in the era of spell check and tweet speak—get rewarded.

o  Unless it's Monday or Tuesday (when we can often blast right through in one pass), it turns out that letting a roadblock incubate is a good strategy. As near I can figure out we are susceptible to mental gridlock from time to time (where we cannot get out of an unproductive rut), and pausing to let it marinate in our subconscious turns out to be a surprisingly effective strategy—when you come back an hour later or so, you can often see it differently and achieve a breakthrough. I like that I can access some portion of my intuitive brain when the rational part falters.

o  I get to work with a pencil (preferably a 2.5 HB, if you please), a tool that is otherwise falling into disuse. Thus, I'm doing my small bit to assist in its making a comeback. 

o  Doing crosswords does not promote the use of cross words—unlike reading about national politics, say. While there is no doubt that crosswords can evoke a certain amount of teeth gnashing, there is far more laughter and delight, such as when a clever clue is unmasked and interpreted appropriately.

o  You learn stuff. (If nothing else, at least how to be better at crossword puzzles, or how to think like Will Shortz.)

Of Shoes and Ships and Sealing Wax…



Here's a picture taken yesterday of my sister Alison and me in the foyer of the Mayo Building. Notice my ubiquitous devil bag by my feet, against the backdrop of the spectacular 13-piece Chihuly glass installation suspended from the ceiling behind us. 

[My daughter Jo took a look at this image and texted back, "Please tell Laird that he needs to pull his pants up higher so that his waistband is in his armpits.

Gearing Up for Chemo

It's the weekend. For Susan and I that means a couple day off—as in no medical appointments—before action resumes Monday, when I get a central port placed high in my torso (to ease blood exchange for the chemotherapy to come) and a sample of belly fat taken to test for amyloids (see more about this new wrinkle below). 

Good news for ducks and flower beds. It's raining steadily as I type and that's supposed to keep up all day. That makes it a good day to not walk to the clinic, and a good day to compose a blog. Susan and I had been hoping to stroll over to the farmers market this morning, but we gave up on that idea once the skies opened up.

We saw Dr Buadi yesterday. He's the hematologist overseeing my stem-cell transplant. All systems are go for my receiving the chemotherapy Wednesday (melphalan), to be followed Friday by the reintroduction of my stem cells. In the parlance of my Bone Marrow Transplant (BMT) Team, next Friday will be dubbed Day Zero. While Susan and I had been hoping this timetable would not have been so stretched out (six days between the completion of stem cell collection and the chemo treatment), we are grateful for the down time together this weekend. 

My sister Alison is slated to arrive late Monday morning (July 25) to tag in as my primary caregiver, allowing Susan to drive back to Duluth that afternoon. She'll have 10 days or so at home to catch up on work at church, to get a break from Mayo coffee, and to convince our dog, Lucyie that she's still loved. She'll then return in time to take back the caregiver baton from my dear friend, Annie, who will be in charge of Laird duty Aug 1-8.

From Day Zero onward my routine will be the same every day. There will be a visit to the clinic so that the BMT Team can get eyes on me to make sure everything is proceeding on course. This is important because I will be immune-suppressed after taking the melphalan, and therefore susceptible to catching random germs and diseases that a normal body could shrug off easily. If there's a complication, my BMT Team wants to be right on top of it.

When I first tried to imagine what the transplant would be like, I pictured a challenge similar to what I went through in Feb and March, recovering from getting knocked flat on my ass by both severe back pain and my body's response to the early cancer treatment. Last winter I wrestled with being bed ridden and learning to walk again. After talking with Elsie Martin though, a friend who went through a stem cell transplant 2-1/2 years ago, also for multiple myeloma (MM), she reported how important it was to her to have the goal of walking at least one flight of stairs every day. I thought, huh? I didn't attempt stairs until returning home after almost seven weeks of hospital and rehab therapy last winter.
But this will be a different deal. I will be attempting to not lose the ground that I have carefully gained since Feb, and that means I need to keep moving. To be sure, it needn't be fast; I just need to keep using my legs, because that will get me home faster. Conveniently, I have one flight of stairs separating my room at Transplant House from the kitchen/dining room, so I may adopt the same post-transplant recovery goal as Elsie did. If I am able to walk to my daily appointments at Mayo (as I have so far), so much the better.

In any event, I'm looking forward to moving on to this next and final stage of the transplant process (in the spirit of, you can't get done until you get started). I have a comfortable setting, a terrific care team, and top-notch medical assistance. Let's get 'er done!
• • •Now back to the amyloids. There was modest (inconclusive) evidence that I may have an incipient problem moving me in the direction of amyloidosis. This is a relatively rare, but serious disease that involves the accumulation of unwanted protein fragments (called fibrils) that the body has trouble disposing of. These fibrils can aggregate and interfere with normal body functions. While this disease can present in a variety of forms, one version compromises the kidneys and heart.

With that possibility in mind (because I need my heart and kidneys to be hitting on all cylinders as I continue my battle with MM), Buadi ordered tests to take a closer look for amyloids. Because they are rare and show up in many forms, they are difficult to diagnose. Nonetheless, it is a measure of my doctor's thoroughness that he's checking anyway.

On the good side, my kidney functions have steadily steadily improved from their dangerous low point when my cancer was first discovered in late January (I was only functioning on 20% capacity at that time and was close to renal failure), and that kind of improvement is contraindicated in the presence of amyloids. So the early evidence is mixed, and I think the best way to see this is my doctor is being prudent. While I don't want there to be any more complications, I want my doctors to be looking in case there are. Who would want it any other way?
• • •It looks like an all-day soaker today in Rochester—a good day to read or go to a movie as I keep building strength for the weeks ahead.

Getting Turned Inside Out

I've now completed three days of apheresis, having collected 4.4 million stem cells on my way to six. (Although the transplant will use only three million, my doctor wants double that amount in hand in case a second transplant is indicated.) While I'm getting tired of being a pin cushion (think lots of IV sticks and belly pokes) the end is in sight. With luck, I'll inch across the finish line tomorrow.

I awoke today to scary news. My brother-in-law Norm suffered a stroke yesterday, and his wife (my sister Tracey) went to bed last night with Norm in the hospital, not being able to talk. We got a brief note from her first thing in the morning apprising us of the situation. Fortunately, Norm recovered his speech later today. While they're still testing, it appears he'll have a full or nearly full recovery. Whew. It's sobering to be reminded that serious health challenges can strike any of us at any time.

On a positive note, there is a riot of flowers in bloom in downtown Rochester (after all, it's mid-July) and it's a multicolored joy to walk the pathways that Susan and I traverse between Mayo Clinic and Transplant House each day. Further, Rochester is an exceptionally clean and friendly town, and from the eighth floor of the Eisenberg Building (where apheresis is conducted) we have a nice panoramic view of the north side of the city in full green raiment. Today we got a bonus as storm clouds rolled through all morning. Though it didn't rain, the view was spectacular.

Looking back over my first 10 days in town, it's been wonderful having so much time with Susan (who is taking time off from her regular duties at St Paul's Episcopal Church to be my primary support person). Starting next Monday Susan gets relief as Alison, Ceilee, and Annie takes turns covering the next fortnight. While I'm anticipating good connections with those loved ones as well, it's been precious sharing with Susan all of my fears and joys as I surrender to the fast water of the transplant process, trusting the sturdiness of our intimate canoe to see us safely through. It is, after all, a big deal. Our future is at stake, and I hold dearly the hope of being able to enjoy substantial time together in good health.• • •Mayo Clinic thoughtfully offers apheresis patients access to movies while they go through the five-hour collection sessions. Monday we watched The Intern (a lovely comedy with Robert De Niro and Anne Hathaway). Being an older guy myself it was touching watching how De Niro portrayed a 70-year-old widower who was not yet done with making a contribution in the world. I admired his patience working in a company run by people who were a generation younger than himself—available to give advice if asked, but never pushing it. Without rancor or ego, he gracefully accepted the role of office intern after retiring from a successful career as a business vice president. He simply wanted to be back in the action and knew how to be a team player.

The action hinges off a personal crisis for the company founder and CEO, Jules Ostin (Anne Hathaway). She loves her company (an online fashion start-up) but the long hours take her away from her daughter and stay-at-home husband. The neglected husband has an affair, Jules finds out, and feels she has to choose between a job she loves and the family she loves. In the end, hubby repents and Jules gets to keep both, but left unexplored is how that adds up. Where are the extra hours needed to do both well going to come from? The movie got right up to the crucial question and then ducked.

Tuesday we saw Spectre (the latest James Bond thriller), and today we caught Star Wars: The Force Awakens (episode VII). Sandwiched between these two escapist thrillers (where once again, wouldn't you know it, good triumphed over you know what at the last possible moment), we enjoyed Inside Out, a delightful Pixar's release from last year. (Does Pixar ever produce a bad movie?) While I'm not sure that catching up on movies you missed first run is an even trade for having cancer, it's at least a sliver of a silver lining.

The best of the bunch was the animated film, Inside Out, which I had never heard of but Susan knew to be a winner. The concept is what's happening in the consciousness of an 11-year-old named Riley as she tries to integrate her five primal feelings: Joy, Sadness, Fear, Anger, and Disgust (think of a team of five trying to cooperatively resolve how Riley should respond in any given moment, with Joy as the team leader, but not necessarily always in control—it was hilariously insightful). 

The film's dramatic crisis occurs when Riley (an only child) and parents leave their happy home in Minnesota to explore a new life together in San Francisco. Riley stumbles out of the blocks in her first day at her new school, and this movie brought me to tears as Joy learns to make friends with Sadness, helping Riley reunite with her parents—rather than trying to keep Sadness confined to a small circle where she doesn't touch much.

What a delightful way to introduce the concept of emotional health—something we all struggle with, not just 11-year-olds. While Riley's brain worked overtime to make sense of her conflicted feelings toward her parents (why did they take her away from the Land of 10,000 Lakes, where everything was going so well?), it triggered sympathetic tears in me about my complicated relationship with my father, where I struggled mightily to understand my emotional responses (and his).

Anyway, that's what I noticed during cancer treatment today. What's it going to be like when the hard part comes?

Prime Time in Rochester

Today I completed four rounds of priming, which chemically encourages my bone marrow to release stem cells into the bloodstream. Tomorrow the harvesting begins. Each morning—for as many as are needed to gather six million stem cells—I'll start my day with five hours of apheresis, where my blood (through intravenous ports) will be circulated through a machine that is clever enough to extract stem cells from everything else.

It's a pretty straight forward operation. After getting set up, I just relax and let the machine do its job. As I went through several rounds of this in Duluth in order to shed my excess plasma cells, I know the drill. I'll be sure to bring a book.

The staff estimates that it will take 2-4 rounds of apheresis to get enough stem cells, after which I should be all set to begin chemotherapy—which starts with the injection of a poison to kill off everything in my bone marrow.

Meanwhile, Susan and I have been settling into a routine during our first week at Transplant House, located just four blocks from the Mayo Clinic. At least at the outset of my visit here I am strong enough to walk to and fro between the two. It's a bit over half a mile one way on fairly level terrain and terrific exercise for my legs and lungs. As a bonus, I've noticed that my peripheral neuropathy (numbness and tingling in my hands and feet) has diminished since my walking has increased. Yay! Because I'm expecting my overall energy to nosedive after I receive the chemo, it's important to keep building strength now to help sustain it as long as I possibly can (I figure it's easier to retain than to recover).

One of the conundrums that Susan and I face is anticipating my food interests after I take the chemo. We've been warned that my sense of taste will be wonky after chemo and that I'm likely to suffer loss of appetite. That's unfortunate because I need to keep eating to maintain strength. My weight is down to 154 as of this morning (from a high of 206 back in October 2014, when I first experienced lower back pain) and the transplant nurses have told us that it's common for stem cell recipients to lose 10-15 lbs over the course of the protocol—an additional droppage that I am loath to shed.

Yesterday we went to a local farmer's market and bought fresh veggies, enough to make a large pot of soup, in anticipation that I'll like soup during recovery. I sure hope I do. Today we went to a grocery store and picked up more ingredients for the what-will-Laird-eat-after-chemotherapy-has-wiped-out-his-taste-buds-and-appetite sweepstakes, which we expect to begin playing sometime next week.

It was great being able to take advantage of the season (mid-July, with lots of stuff available fresh and local), the weather (lower 70s), and my burgeoning stamina to add a two-mile detour onto our walk home after my daily dose of neupogen. Susan and I then had fun cutting up in the kitchen, adding peas, corn, potatoes, carrots, onions, green beans, Great Northerns, and a couple of diced chicken breasts to a base jump-started with some garlic salt, a can of crushed tomatoes, and a box of chicken stock. Yum.

I'm anticipating that the trickiest part of the post-chemo period will be adjusting to the hygiene protocols while I'm immune compromised. Lots of hand washing, teeth cleaning 4x daily (using a sponge-like thing called a "toothette" because a regular toothbrush may cause bleeding), wearing a mask when out in public, and generally being what Elmer Fudd would describe as "wery, wery cautious."

While I'll probably be plenty tired of it by the time I'm past the danger zone (typically 2-3 weeks), there is no way around it; I simply have to go through it.

Me and Fellini

This is my 1000th blog. Wow. I figure it's an opportune moment to step back and reflect a bit on what's transpired since I launched this site in December 2007.  8-1/2 years. Me and Fellini.
 
Frederico Fellini released his autobiographical masterpiece, 8-1/2, in 1963 (I was just graduating from eighth grade), featuring a movie director (played by Marcello Mastroianni) who takes a step back from a busy, harried life to slow things down and consider what he's accomplished and where he wants to go. This movie was notorious for its examination of intimate details in the director's life. Though it would be considered tame today, it was risque at the time. Now why would that remind me of my blog... or for that matter, my life? Hah! Art foretells life.

I started this blog to help drive traffic to the FIC website through the more contemporary venue of social media. While you'll never catch me tweeting, I at least have this one oar in modern waters. While assisting the Fellowship still motivates me, that alone would not have been sufficient to have sustained my interest. I reached this milestone because my blog has also served as a place to lay out my thinking about cooperative group dynamics—strung out like so many pearls, released one monograph at a time. Finally, I personally benefit from the discipline of writing, which requires me to be more precise and complete in my thinking. I write better reports, for example, because I write regularly for my blog. (Is one ever through learning how to be more to the point?)

This auspicious date comes on the cusp of my entering a new and crucial phase in my cancer chemo-choreograhy. (I came within an ace of writing "battle" with cancer, but I'm uneasy with the martial metaphor and believe I'll ultimately have greater success learning to live with cancer, rather than attempting to "vanquish" it.) In fact, I'm polishing today's post from my second floor room at the Gift of Life Transplant House in Rochester, where Susan and I landed Monday evening for the start of my stem-cell transplant procedure at Mayo Clinic.

It's interesting to have manifested cancer just as I stepped out of FIC administrative work. I reckon it's true that nature abhors a vacuum. As a cancer survivor (since January) I now have one more powerful way to bridge to people who feel isolated, which is a set of tools you never have too many of as a group dynamics technician. I've found that being able to bridge to folks who feel isolated is an unsubstitutable skill, so it's great having another point of entrée.

After two days in Rochester, I've been poked and prodded more than a side of US Grade A beef. This afternoon I met with Dr Buadi, who will oversee the transplant procedure. He gave the green light to proceed based on my baseline test results, and I received my first shot of Neupogen, a stimulant that will cause my bone marrow to release stem cells into the bloodstream, from which they can be harvested starting Monday.

Stem cell collection is accomplished through a process called apheresis. They'll draw my blood out of an intravenous port in one arm, cycle it through a machine that separates plasma from blood cells, and then return the residue into a matching intravenous port in my other arm. A single apheresis session takes about five hours and I'll do 2-4 of them to gather enough stem cells: about 6 million.

After that I'll be injected with a poison that will kill everything in my bone marrow—good cells and bad. Two days following that, they'll reintroduce my healthy stem cells to start the recolonization of my bone marrow.

As you might imagine, my main job throughout this is to maintain a positive attitude and to recover energy, motivation, and appetite. I'll be immuno compromised right after the poison injection, will lose my hair (such as I have any), and will feel like shit. But health is on the other shore and I'm highly motivated to cross this river.
For the duration of my time in Rochester (maybe six weeks altogether) I have a terrific caregiving team lined up. In addition to Susan (my main primary support), I'll have Alison (my youngest sister), Ceilee (my son), Annie (my ex-partner and Ceilee's mother), and Jo (my daughter) all doing shifts to give Susan a break. As if that weren't enough, there are even more who volunteered for shifts, but I didn't have more spaces on my dance card! 

It's an incredibly good feeling to know that so many folks are rooting for my recovery, and are willing to suspend their regular life long enough to lend a hand. The power of being touched by this kind of love is palpable, and it appears that one of my main life lessons these days is learning to place relationships more in the center of my life.

What does that mean? Let me share the story of two unplanned visits that created delightful bookends for me last week. On Sunday afternoon River Oneida came by for a couple hours, taking advantage of being in town to visit his son's family (most of which are in Duluth) and knowing that I was going through a major health crisis, he decided to see me as well. River lives at Twin Oaks, an income-sharing community in central VA that will be celebrating its 50 birthday next June (which is a far more significant accomplishment than my posting 1000 blog entries). I have been visiting Twin Oaks off and on since 1980, and have known River for decades as a fellow traveler in the arcane word of income sharing. Though I had not seen him in 4+ years we had no trouble whatsoever picking right up with the threads of our lives, as if it had only been last week. Sharing a community bond with someone creates that kind of intimacy.

Amazingly, this was followed by a surprise visit from Jim Crowfoot & Ruth Carey, two long-time friends who live at Sunward Village, a cohousing community in Ann Arbor MI. They were in state to attend the  Quaker annual meeting (held this year in St Joseph, close to St Cloud). On whim, after the meeting ended they decide they wanted to see Lake Superior and at the same time to see me before I headed to Mayo. Saturday they made both wishes come true wish and we had a lovely visit, replete with fresh blueberry pie and ice cream. (Does it ever get better than good friends and fruit pie a la mode?)

I love that I'm moving into a lifestyle where these kinds of accidental visits can find ready oxygen.

Today we arrived at Mayo for our first appointment mid-morning and settled into the waiting room. When the escort nurse collected us and took us to an examination room, she remarked , "Welcome back." I looked at her quizzically and she replied, "I recognized your devil bag from March." Holy cow! She had remembered my canvas tote bag from four months ago. Talk about putting patients at ease with a personal touch. I was gobsmacked. 
Later, after the doctor's assistant went over the adjustments to my medication list, we asked if there was a pharmacy she'd recommend. We were told there was one in the Mayo complex. When we asked where, she began her explanation with, "You know where the Starbuck's is, right?" You know you're in America when even the directions at Mayo Clinic start by referencing Starbuck's as a universally known landmark. What a (caffeinated) country!

For the next six weeks (or so) I'll be bivouacked at:
Gift of Life Transplant House
room 238
724 2nd St SW
Rochester MN 55902

Who knows where I'll be when it's time for blog #2000?

Healthy Uses of Power and Authority

If power is the ability to get others to do something, or to agree to something, how does the equation  change if one of the two people has authority the other doesn't have?
Let's say Sandy has been authorized to make decisions about the group's anniversary party. Taylor is also a member of the group and has ideas about a new interactive game that might increase participation (which has been waning in recent years). Now let's suppose that Sandy does not share Taylor's excitement about the new game because it will take too long, making dinner start too late for parents with young kids.

Sandy appreciates that Taylor is trying to enhance participation, but Sandy is also sensitive to complaints from the parents of young kids about how few group activities are designed to work well for their family schedules. What to do? Let's suppose Taylor is a new member to the group and has been encouraged to get involved. This offering of the new game at anniversary is Taylor's first attempt to do something for the group and Taylor is baffled by Sandy's cool reception. There is a risk that if this exchange goes poorly that Taylor will back off and become cynical about the group's supposed commitment to inclusivity.

To be clear, Sandy has the authority make the call without getting buy-in from Taylor. Still, Sandy wants to be careful about proceeding in a way that is not disrespectful to the well-intended newcomer. Yet neither does Sandy want to get bogged down negotiating with Taylor over an idea that's a non-starter. After all, what's the point of having the authority to make the call unless you exercise it?

At what point is Sandy being arbitrary? At what point is Sandy being held hostage to unreasonable expectations?

By virtue of delegated authority, Sandy is not obliged to get approval from Taylor. Is it enough that Sandy makes a good faith effort to hear Taylor and explain why there will be no new games played at anniversary? What level of response from Sandy constitutes due diligence? 

These are nuanced questions, and I don't believe there is one right answer. That said, it's worthwhile to dwell here a bit to describe the lay of the land and to offer some suggestions about how to proceed.

o  I believe the hardest part of this dynamic is that people do not tend to respond openly to others raising questions about how cleanly they've used power. Thus, the biggest challenge tends to be creating a culture in which these uncertainties can be explored without anyone going ballistic.

o  One thing that will help is having a conversation about what's wanted in the situation I've described with Sandy and Taylor. What can Taylor expect in the way of consideration and an explanation from Sandy? What latitude does Sandy have to go in another direction if unpersuaded by Sandy's suggestion?

o  It might be interesting to ask other members of the group who have had experience filling roles of authority for the group what they would like the standard of responsiveness to be.

o  Caution: One known pitfall here is sloppy delegation. Just imagine how much more complicated it can get when the hand-off to the person(s) in authority has not been well defined. Ugh. When people have to guess about the limits of authority, can misunderstandings be far behind?  

o  There's a difference between being unhappy with how someone used their authority (perhaps you feel they exceeded their mandate) and being displeased with their judgment (even though they had the right). Be sure not to conflate the two. The former is a process complaint; the latter is a disagreement of substance.

While the advice above does not constitute foolproof protection against falling into the pit, it'll help.

My Health and My Finances

This is an appeal for financial support. It has not been easy for me to write this, but it looks highly likely that my medical expenses in battling cancer will exceed my savings and I need help. 

I made the decision back in my 20s that by choosing to live in an income-sharing community (when I started Sandhill in 1974) I would be devoting my life to social change work and taking the radical step of redefining security in terms of relationships instead of bank balance. I'm about to find out how well that works.

As most of you know, I'm sick. In January I discovered I have an aggressive form of multiple myeloma and my #1 job right now is getting well. That means trying to place the cancer in remission so that I can resume my life's work: building a better world through articulating and promoting community and what it takes and on a day-to-day basis to live cooperatively.

The good news is that I have a decent chance of weathering this storm. A lot of progress has been made in treating multiple myeloma in recent years and I'm about to go to Mayo Clinic to undergo a stem-cell-transplant, designed to restart my bone marrow by wiping out the cancer there (the site of my cancer) and recolonizing it with my own healthy stem cells. This is the latest thinking in how best to treat my condition. With luck, it will knock back the cancer and open a window in which I can enjoy a good quality of life for years ahead. How long that window will remain open is the $64,000 question. It varies from person to person.

Where Medical Costs Swamp My Bank Balance
I am five months and counting into heavy-duty medical treatment with at least two more months of serious expenses ahead of me, after which I'm not sure what to expect, but I think it's reasonable to project some maintenance medicine will be ordered and that will mean further expenses.

While I am fortunate enough (by virtue of being over 65) to be eligible for the protective umbrella of Medicare—and have secured excellent supplemental insurance through Medica—I am still on the hook for some fraction of my expenses. This means that most of the staggering medical bills that I've been generating (as I follow the advice of my oncologist) are covered by either the federal government or by my insurer. Please note however, that most is not the same as all.

So my costs have been mounting and the end is not yet in sight. On the other side of the equation my income has mostly dried up (because my debilitated health makes it difficult to travel to clients) and I am facing the music for having lived a life that did not emphasize financial accumulation. Thus my savings are modest and it appears inadequate to handle the entirety of my health care bills. Hence this appeal.

Unfortunately, I cannot offer donors a tax deduction. I investigated setting up a Health Savings Account (which offers contributors a tax deduction), but I'm not eligible for that by virtue of being on Medicare.
I have known for many months that this was coming but have been putting it off, both because I was hoping for better information, and because it's awkward asking for support. As someone who managed FIC's Development program for 17 years I got to the place of being comfortable asking others to contribute to a worthy cause. And when Geoph Kozeny was diagnosed with pancreatic cancer in 2007 I cheerfully took the lead on getting $20,000 donated to cover his medical expenses. But asking for myself is harder.

The Back Story It was just about a year ago that I pulled up stakes in northeast Missouri after 41 years and moved to North Carolina. While my time as a Tarheel proved to be all too short (the down side was that I was really looking forward to seeing what I could create with Joe & María; the upside was that it was terrific moving to Duluth to be with Susan six months later), it marked the first time since 1971 that I was solely responsible for my own finances. It was an experiment to see if I could return to the work-a-day world as a financially self-sufficient adult.

It's now a year later, and the experiment continues. While the first half year went fine (I had steady work as a consultant), everything slid into reverse the second half, which has mainly been characterized by my suddenly needing to cope with the expenses of treating multiple myeloma.

A number of people close to me have discreetly inquired if I have enough money to cover my bills. The truth is, I'm not sure. I face a double whammy in that I'm accruing medical bills at a frightening rate and am simultaneously sharply diminished in what I can earn. Since I was hospitalized and discovered my cancer in January, money has been flowing out much faster than it's been flowing in. Taking stock of my finances today, on the verge of my going down to Mayo for a stem-cell transplant, my treatment is about to enter a new phase. While I will soon cease twice-weekly infusions in Duluth, those costs will be replaced by ones in Rochester, where I will be seeing medical professionals daily for about six weeks. Plus I'll need to cover my housing at Transplant House (while much more affordable than staying in the hospital, it isn't free). Thus, the health care meter will still be merrily ticking away at least until mid-August.
My financial reality over the prior 12 months partitions neatly into two disparate segments, each about six months long. At first, I reaped the success of my Dr. Jekyll consulting, characterized by steady work and limited expenses. While that put my bank account seriously into the black, the wheels fell off my financial wagon when my lower back pain flared up again in mid-December. It turned out that was a harbinger of bad news coming: the revelation of my cancer at the end of January. Essentially, Mr. Hyde had taken over the reins of my financial conveyance.
Today, even with insurance in place, I am puzzling out how much I am personally responsible for my medical bills. While the lion's share of the costs will be covered by Medicare and Medica, I am nonetheless on the hook for some fraction of the total bill and if the grand sum is grand enough—and believe me, mine is spiraling into grander territory all the time—even a small fraction of the total can be eye-popping. Here are the vagaries I'm wrestling with:

Financial Uncertainties Going Forward
o  Have I seen all the bills for work done so far (or will more trickle in later)? I have already had multiple experiences with people from Accounts Receivable (from various health care providers) telling me face-to-face that the bill they were handing me was complete, only to have them come back later with additional charges that they expected me to honor. Grr.

o  Is the accounting accurate? Has Aetna (my supplemental insurer Jan 1-March 31) paid everything they should with respect to my various bills? I have gobs of paperwork in hand (good) but it will take me hours to pore over it all checking for mistakes and inconsistencies (not so good). I have to keep in mind that as far as Aetna and St Luke's Hospital are concerned, both are more than happy to have me pay more, and I can't count on them holding my financial interests closest to their hearts—however much they tell me otherwise.

o  How much will I be expected to pay for the six weeks of treatment I'm about to undergo at Mayo Clinic? In addition to having limited familiarity with how Mayo charges, much depends on how I respond to treatment. If all goes well, the entire procedure will be done on an outpatient basis, which means no overnights in the hospital. As you might expect that will help contain costs substantially, but it is not prudent to base expected costs on the best possible outcome. It might be more expensive than that. In fact, it might be a lot more than that.

o  What kind of medical expenses will I be facing after I return home from Rochester? Even if I come through the stem-cell transplant with flying colors (hey, I'd consider walking colors to be a great outcome), my oncologist may recommend an ongoing course of maintenance chemotherapy, for which there will be additional costs. If my doctor tells me to take x—with the intention of keeping the light of my cancer under a bushel—I'm not going to compromise my health to pinch pennies. Rather, I'm going to take x now and figure out how to pay for it later.

o  How quickly, if at all, will I be able to return to consulting work, and therefore able to reverse the tide of my cash flow and start to see it coming my way again? I have work penciled in for September and October. Will I be well enough to answer the bell?
• • •The upshot of all this is that I don't have a clear picture of what I'll ultimately be paying to treat my cancer. While I have cash in hand to cover all the bills that have reached me so far, that's about all I have. I'm not confident that I have all the bills for the care I've received to date, I know there are more coming, and I don't know how quickly I'll be able to earn money again. 

Seeing this coming, I have been careful about paying down my bills. (Fortunately, no care provider is withholding service until I'm more current.) I have been managing my dwindling funds to make them last until I can see money coming in again—hopefully sometime this fall, but it may be later. Happily, care providers are mostly wiling to work with patients who are financially strapped. Thus, if I owe the hospital over $5000 (which I do) they are OK with my making payments of $100/month. By stretching out my payments, I manufacture some wiggle room.

What if the amount I raise with this appeal is more than I need to cover my medical costs (a nice problem to have)? As most of you know, one of the things I am prioritizing now that I've retired from FIC administration and have been facing my mortality is work on one or more books about group dynamics, starting with one on consensus. With that in mind I propose earmarking any surplus to help publish my writing. I have not yet turned my attention to how I'll get published so any extra funds will be most welcome there.

If you are moved by this appeal to make a contribution to my heath care, please mail a check made out to Laird Schaub to:
1014 Chester Park Dr
Duluth MN 55812

Alternately, you can send a contribution via PayPal, using my email address: laird@ic.org.

Thanks for considering it.

One Year and Counting

Yesterday Susan and I celebrated the anniversary of our first date together, in five-part harmony. As it was a Thursday, Susan put in her normal five-hour shift at St Paul's Episcopal Church, and our special time together ensued. It was especially fun to recognize how much I have been able to acclimate to local options in my first year.

1. Duluth Public Library
After eight hands of gun rummy (an afternoon staple) in which Susan walked away with an easy victory, we drove through an unsettled sky (featuring patches of brooding, gray nimbi alternating with windows of brilliant sunshine) to get to the downtown public library. Susan helped me register for a card about a month ago and it was time to rotate stock. In addition to securing a pair of Jeffrey Deaver pot boilers I managed to find a copy of Monique Truong's The Book of Salt. Is there any sense of security quite like having good books lined up for the month ahead?

While it's unclear how much reading energy I'll muster at Mayo's as I recover from my stem-cell transplant, I certainly don't want to be caught short.

2. Zinema
From the library it was a brief drive down Superior to get to Zinema, the avant garde theater downtown. There we caught a matinee showing of The Lobster, last year's mirthless exploration of a dystopian future in which unpartnered adults have 45 days to find a soul mate or are ruthlessly weeded from the population by being forceably turned into an animal and released into the woods—where renegade loners roam at large. (Yes, we had a lot of questions, too.)

It stars Colin Ferrell and Rachel Weisz (with John C Reilly in a supporting role as a lisping man who has trouble controlling his urge to masturbate). It was a disturbing film all around. While the box office appeal was dubious (Susan and I constituted two-thirds of the paying audience) it nonetheless helped work up a powerful appetite—which was our modest reward for having forsworn popcorn.

As someone who has devoted his life to promoting community and understanding both its appeal and its inaccessibility, I have necessarily come into close contact with a variety of dystopian fiction over the years—the better to appreciate what people fear about living closely with one another. Thus, I have read or seen:
—1984 by Orwell (1949)
—Blade Runner with Harrison Ford (1982)
—Margaret Atwood's The Handmaid's Tale (1985) and Oryx and Crake (2003)
—Children of Men by P.D. James (1992) though I haven't seen the 2006 movie based on the book, starring Clive Owen
Occasionally we come to know a thing more surely by the aspects that we don't want it to be, than by being able to articulate what, exactly, our city on a hill encompasses. Thus, the elusive qualities of community can be glimpsed from both sides of the street.

3. Bookstore at Fitger's
As we tried to puzzle out what the movie was all about, we continued our crawl up Superior to the refurbished Fitzger's Brewery. This lovely complex (of inn, brew pub, gourmet kitchen supplies, Mexican restaurant, bookstore, etc.) right on the shores of Lake Superior represents some of the best of Duluth, where locals have raised the bar (rather than razed it) by embracing their heritage to preserve some funky blue collar architecture replete with local flavor.

Like ciies all over the upper Midwest, Duluth had its own successful brewery for about a century (1857-1972), but Fizger's finally succumbed to the economic pressures of macro lagers (think Budweiser, Coors, and Millers) and disappeared under the successive waves of so many Clydesdales and silver bullets. Happily (or perhaps in this case, hoppily), locals bought the facility in 1984 and developed the concept of a boutique shopping complex that has ultimately been anchored by a hotel, and has fresh beer being brewed again on site. Opa!

We stopped here to do a bit of targeted shopping for my grandson's 5th birthday. They have a basement bookstore that reliably features local authors and I secured a copy of Little Elephants by Graeme Base (author of Animalia and Eleventh Hour). Meanwhile, Susan bought me a signed copy of Chester Creek Ravine, a collection of haiku by Bart Sutter, the port laureate of Duluth. Not coincidentally, Bart, just like Susan and me, is a 49er‚ which the two of us consider to be a vintage year.

4. Northern Waters
We followed up our successful book foray by moseying up the hill to the Mount Royal neighborhood, and an early dinner at Northern Waters. This restaurant was opened in the winter as the second facility operated by Eric Goerdt, following his fabulously successful smokehouse, located in the bowels of the DeWitt Seitz Marketplace in Canal Park since its launch in 1998.

Northern Waters is a great story about a local guy making good, taking local ingredients and becoming obsessed with smoking fish and meat. Springboarding off the brisk lunchtime sandwich business he'd developed at his original location, Goerdt decided to branch into restauranteering. At his second location (where we ate last night) you can tell immediately that something unique is happening. While there is a well-upholstered run of de rigueur booths along one wall, the remainder of the seating is surprisingly open, highlighted by one long wooden table in the center where clients dine communally (your group is shoehorned in with everyone else to minimize empty seats). You can also sit at the bar, by yourself at the front widow (a la Starbucks), or in one-off arrangements of odd-lot cushioned chairs that are casually arrayed around low tables.

The obvious point of this open layout is high octane mingling—dining as a social occasion, rather than as a mundane solitary act (like filling the gas tank) or an opportunity for rendezvous (let's tryst again like we did last summer). While we lingered there for about 90 minutes on a Thursday evening, Susan (the well-established local) pointed out that a city councilman, the mayor, and other up-and-coming politicos waltzed through at various times to amicably work the crowd. And I thought we were just having dinner!

As you might expect, Goerdt takes seriously his role as a market maker in defining beer and wine selections that are distinctive yet not budget crushing. It's a bull market out there these days and you really can't be a player unless you're willing to roll up your sleeves and take a stand. Thus, he offers five reds and five whites, all available by the glass or by the bottle.

For those favoring malt, he's got half a dozen beers on tap (plus a robust selection of back-ups in bottles) so there's really no excuse for leaving thirsty. 

Most distinctive of all, at Northern Waters tipping is expressly discouraged. Goerdt figures, and I agree, that it's confusing enough to navigate fair compensation for under-paid wait staff, so why go there at all? Instead, they pay staff a living wage and tell clients to knock it off with the tips already. Talk about radical! It changes the dynamic of how you relate to the person serving you. You can let go of any cynical supposition about how smiles may correlate to expected remuneration. They just want you to have a good experience and to come again. The wait staff becomes more of an active partner in the dining experience, where everyone wants it to go well. Refreshing.

Susan ordered the Salmon Satay, fillets grilled on skewers, served with coconut rice and Asian slaw. I countered with a rack of lamb with cannellini beans cooked down in mirepoix (the menu come-on advises, "it's like prison food in France in the 1800s"). For a finale we split a scoop of in-house cranked vanilla ice cream, slathered in a salted caramel sauce. Mighty fine.

5. Bedroom
While there was nothing peculiar to Duluth about how we closed our day (bedspring braille, where you let your fingers do the walking), it did help that with outdoor temperatures comfortably in the 60s that we needn't worry ourselves with overheating. Without getting into details, suffice it to say we were highly appreciative of my gradually increasing stamina and flexibility (do you ever have too much?)

I'm already looking forward to next year.

Community at the End of the Block

Jean and Larry live two doors down from Susan and me, at the end of the block. They are close neighbors, and, more importantly, they are becoming close friends. 

Sunday they hosted a lovely midsummer afternoon gathering of long-term neighbors. There were four couples, all of whom (excepting me) have lived within easy walking distance of one another for decades. Sunday was just the latest opportunity to celebrate that camaraderie—over wine, cheese, and conversation on the back patio.

I am shining my light on that interlude because it is a manifestation of community and that remains a central focus of my life, even as I no longer live in the intentional variation. Over the years I've remained as dedicated to community living as ever, but I am less attached to any particular form of it. To be sure, I have my favorites (the quirky and often misunderstood world of income sharing, which has always worked well for me), yet they all count and I am loath to fall into the trap of getting righteous over structure.

At heart, the central challenge of community is social: the quality of relationships among the people who comprise it. And those relationships are no less genuine because you do or do not own property together. While it's true that certain arrangements of joint ownership are likely to afford members additional opportunities to share their lives in meaningful ways, there is no guarantee that they will do so, or that they will handle awkward moments well—which is the essential litmus test of community: when the stakes are high and members disagree, does that bring the community closer together or strain the relationships?

After living in intentional community in northeast Missouri for four decades that I'll always cherish, it has been humbling to be the new kid on the block among Susan's closest circle of neighborhood friends. (It is a marker of Susan's status in the group that the other six have been both cautious about my admittance (was I good enough for Susan?) and yet open to embracing me when I'd passed the bar—the first person to pass muster since Tony (Susan's husband and my good friend) died 12 years ago.

I have been relishing my role as rookie and supplicant in the informal (read undocumented) though no less sincere dance of assessment and acceptance. The group has carefully, gradually created something that they cherish and they are understandably deliberate about the circumstances under which they'll crack the door open. In a way, I have the opportunity to take what I have learned about community living and distill it down to an essence that can be accurately applied to this divergent set of conditions. 

It turns out that connections of substance are valued universally and the language of heartfelt caring exports easily. As a parallel I am reminded of what Supreme Court Justice Potter Stewart had to say about hard-core pornography: I may have trouble defining it, but "I'll know it when I see it." I feel that way about genuine community—in contrast with what M Scott Peck styled "pseudo community" in A Different Drum.

As I look ahead to what the remainder of my life has in store for me as a cancer survivor, I intend to continue to till the fields of community. This honors both my years as a homesteader and my decades as a community builder. It is who I am. Fortunately, community is needed everywhere and thus one cannot make a mistake in location. There is work everywhere and I am hopeful of being able to continuing to travel to ply my craft. 

I await the results of my upcoming stem-cell transplant to see what success I'll have in curbing my multiple myeloma. If it goes well, I'll have the stamina and constitution to resume my career as a cooperative process consultant and teacher and that's my hope. Concurrently, it will mean that Susan and I will be able, in measures commensurate with our means, to indulge our fantasies to travel and enjoy parts of the world that have somehow escape our enjoyment to date. All and all, it's a pleasant target.

Meanwhile, it pleases me to have my spade in the ground only two doors down, gently working community soil that's already been well tilled.

Doe Snot and Other Fox Paws

When I was in high school (1963-67) it did not occur to me that typing was a personal skill that would be particularly useful in my life. For an elective my freshman year, I took woodworking instead.

And while I enjoy working with wood to this day, and have no regrets whatsoever about learning how to operate a table saw safely, eschewing typing turned out to be serious misstep. My choice was both sexist and shortsighted (I thought only secretaries needed to know how to type and men were not secretaries). Oh boy, did I get that wrong.

By the time my mistake became apparent I was 40 years old and remedial touch typing did not come easily for me. After about three months of trying to practice with all 10 fingers I was able to get my speed up to about half of what I could accomplish with two fingers, and I gave up. Since then I have absolutely become dependent on communicating through a keyboard, yet am limited to what I can crank out with my two pointer fingers working furiously in tandem.

While I get a certain amount of perverse pleasure in being able to get a tremendous amount accomplished with two fingers I'm more of a circus act than a model. Plus, I make a lot of mistakes by virtue of my fingers sliding all over the keys instead of simply dropping down crisply from above. (I suffer from a poor angle of attack.)

Also, my two-finger approach makes me susceptible to certain transpositions of letters, because my fingers naturally want to alternate in striking the keys, even if the word I want is not spelled that way. For all I know, people adept at using all 10 fingers may be equally prone to such misstrokes, but I am nonetheless confessing that this is my fate.

Some of these miscues, frustratingly common though they are, are easily spotted and corrected (such as typing "ign" instead of "ing," which is a letter combo that's useful enough if you are reaching for "benign" but not so good when "being" is what you had in mind). Of course, a good number of these mishits are immediately highlighted by the eminently visible red underling of any decent spell check program. But not all. And some of these can be pretty funny (or at least embarrassing) if allowed to sneak through.

Here are some of my favorite faux pas.

When Spell Check Meets Autofill

god instead of good
I have difficulty with double striking, in consequence of which I frequently wind up with one letter when I intended two. This leads to sentences like, "What would this mistake look like in the eyes of god humor?" You can see the kind of ecclesiastical trouble this particular brand of mischief can engender (I know that the lord moves in mysterious ways, but who is foolish enough to pretend to know divine humor?). Or, "What this child needs is a god spanking." Talk about divine wrath.

choosing instead of cohousing
Because I dwell in the arcane world of intentional community there are terms that are everyday to me yet obscure to most others (and therefore unknown to spell check). Whenever I type cohousing I enter into a battle with my laptop over control of my words. My machine is certain that I meant choosing and doesn't even bother to ask me about it; it simply substitutes what it "knows" I meant. Thus the dance begins. I patiently, yet firmly, retype cohousing and the computer, equally patiently, tries to bring me back to choosing, which I decline to choose. Finally, on the third try, it acquiesces, allowing me and my deviant ways. Sheesh. (I can almost hear it whispering in resignation, "Whatever.")
 
doe snot instead of doesn't
Often enough, the problem arises over when to hit the space bar. Thus, does not (or its frequent alternate, doesn't) is rendered as doe snot—a phrase I'm reasonably certain that I've never intentionally typed. Even though I've lived most of my adult life in rural areas where deer are prevalent and have become sufficiently familiar with them to have earned the sobriquet of community butcher—bringing me up close and personal with the all the bodily fluids that deer exude—I  try hard to conduct my homesteading business with suitable reverence, forgoing any snotty attitude. 

I tell you, god intentions are not enough. One must be diligent at all times.

Decision Making in a Fog

One of the challenges faced by forming groups is who makes decisions at the outset. When people first come together to explore whether or not it makes sense to form a group, there can be ambiguity about who has a voice in that.

Is it everyone in the room? Everyone who was invited to that first meeting (including those who couldn't make that first meeting)? Everyone identified as a stakeholder (including some who weren't even invited to that first meeting)? Only those in favor of moving forward? Those who show up to a second meeting after it has been announced ahead of time that the new group will form for x purpose on y date at z location? It can get confusing.

Because of the power and recognition associated with being a founder, some new groups are tempted to delay making decisions about purpose, values, and vision until the group has reached numbers that approximate the hoped for size of the group. While the impulse is understandable (you can only be a founder once; everyone who comes later is only a "joiner"), it's generally a mistake to delay these foundational decisions, if for no other reason than it's hard for people to know what they're joining if it's ill-defined. Who wants to join a fog?

While the dynamics outlined above can exist for any forming group, there are additional challenges for cooperative groups, where you can expect considerable sensitivity to the dynamics of power imbalances and how leadership roles are filled. In general, the dream of cooperative groups is that all members will have a say in how the group functions and what it does. 

On a practical level however, it can get cumbersome waiting to hear from everyone before moving forward—especially as the numbers swell and it gets increasingly difficult to get everyone to a meeting. Thus, groups need to address the question of how they move forward on solid footing when members miss meetings. What is the balance of the rights of missing members with their responsibility to not hold the group up through their absence?

Healthy cooperative groups of a minimum size (say a dozen) will need to delegate in order to get their work done efficiently. This requires establishing clear mandates (whereby the subgroup is authorized to act on behalf of the whole), and it will require that the group define the qualities wanted in people filling leadership roles. Further, there will need to be decisions made about how leadership roles will be filled. 

With respect to power (by which I mean the ability to get others to do something or agree to something) it will be a huge help if the group takes the time to develop a picture of how power can be distributed among the membership in a healthy way. (Hint #1: If your model is that it will be distributed evenly then you don't understand how it works; power is almost always distributed unevenly, but that doesn't necessarily mean that's a problem if there's awareness of the distribution and the ability to talk openly and in depth about how that's playing out—after all, power can be used wisely.). If there is the perception that power is being used inappropriately, how will the group discuss it? (Hint #2: This can be a tough nut.)

Even if you accept my recommendations of essential things to put into place early on, there is still nuance about how early on. It is unlikely, for example, that you'll tackle these key process questions at your first meeting, yet you may need to establish who will call the second meeting and who will draft the agenda for it. Even these simple next-step questions move you in the direction of filling leadership roles and determining who has more power than others. On the one hand it's hard to generate enthusiasm about discussing process concerns at the first meetings (when the focus is more properly on trying to build up a bonfire of excitement about all the good things your group is going to do in the world). On the other hand, failure to do so early enough can inadvertently push you down the road of a poor start with respect to leadership and power dynamics.

People who are experienced in cooperative dynamics (and the traps that leaders can fall into) can be leery of taking on too much of a leadership role too soon, yet their failure to do so can put the group at risk of losing precious momentum. Even when a forming group desperately needs clear leadership, anyone stepping into that void is at risk of being suspected of immature ego management (because of how much people carry around with them the lesson that prior leaders tend to misuse their power). Yuck!

One of the reasons that forming groups tend to be overly cautious about making decisions that will define the group is the catch-22 dynamic of needing sound leadership in order to make sound decisions yet being nervous about determining the early leadership for fear of backing the wrong horse in the absence of appropriate checks and balances. Thus, the group can be hesitant about making decisions without clear leadership, and at the same time hesitant about designating leaders without a clear decision-making process. Gridlock.

When forming groups are sloppy about asking members to fill leadership roles (not being clear about what authority leaders have to operate on the group's behalf and when they need to consult) then everyone suffers. Good intentions are not enough. You have to spell it out if you want to dispel the fog.

Reunion in Northfield

This past weekend, for the first time in 45 years, I attended one of my college's reunions (Susan and I both graduated from Carleton College in 1971). 

Driving into Northfield from I-35, we passed the Malt-O-Meal plant (it has be made somewhere, right?) and the carload of us enjoyed the same uneasy double take when we read the sign that proclaimed their output to be a "Post Consumer Product." The images of cereal offered up as something post-consumer was not particularly appetizing, until we unraveled the mystery: Malt-O-Meal is a breakfast product offered by the Post Cereal Company—think Raisin Bran, Grape Nuts, and Shredded Wheat—not a post-consumer product, as in something that's previously journeyed through someone else's alimentary canal. It was a challenging image.

In any event, Susan and I were two of 70-some folks who came back from the class of '71 to reacquaint ourselves with one another and with the college (it was sobering to discover that at least two major buildings completed after we graduated are now slated for demolition). Our two days were filled with countless conversations and the occasional moment of edification (it is a college, after all) where we learned about what Carleton has in store for the future and what each of us alumni has been up to since the reign of Richard Nixon. 

It was a lot of ground to cover. The trick of it was accepting early on that we'd never talk with everyone we'd like to, and that we were certain to be exposed to a steady diet of TMI. It works best if you approach it as a buffet, rather than an all-you-can-eat smörgåsbord. Just nibble when you find something delectable, and let everything else slide by.

While each day was long (bed never looked better each night) I got there in sufficient time to recharge my battery overnight and was good to go the next morning. It is a measure of the progress I've been gradually making with respect to my cancer that I get a little stronger each week, and can do a little more each week. A month ago, reunion would have done me in before dinner but this weekend I was able keep going until afterwards.

It turned out that the most envelope pushing aspect of the weekend was a lot of walking—much more than I'm used to. Even though the campus is relatively compact (accommodating only 2000 students, up from 1350 in my day) and I took my time, my feet cramped in the night and I had to get up and walk it off multiple times.

A nice bonus from the weekend is that I reconnected with two classmates (Barb North and Phil Wheeler) who are now living in Rochester, which will add to my larger support group in situ once stem-cell therapy starts at Mayo Clinic next month. I figure you can never have too many friends in your corner.

The other unexpected bonus from the weekend was access to a ripening Montmorency cherry tree in the backyard of our overnight hosts, Ray and Elsie Martin. It turns out that Elise doesn't care for sour cherries (it's a testament to our friendship that Susan and I like her anyway) and the two of them are about to depart to Nova Scotia for three weeks. Thus it's now or never for the cherries and we were happy to carry home a couple pies worth before the neighbors got them.

I think the best part of the weekend was seeing how relaxed people were. At least that was case for most of the folks participating from our class. At our age many are retired and it seemed to me that most were exhaling and enjoying life. There seemed to be a minimum of trying to impress one another with curricula vitae, and a surplus of bonhomie.

While pretty much everyone had their credulity stretched by efforts to explain how Donald Trump became the Republican candidate for President (what a country!) my age cohort came of age during the incredible folly of Vietnam and thus we know in our bones that this too shall pass.

Getting Stronger

It has now been 137 days since I went into the emergency room at St Luke's Hospital (with excruciating lower back pain) and discovered I had an advanced case of multiple myeloma and was close to renal failure.

Placing everything else on hold, my life since then has been focused on putting myself in the best possible position to contain the cancer and regain as much life function as possible. On the one hand, I'm 66 years old and have already had a full life. Maybe my allotment has run out and everything I've been doing the last four-plus months will distill down to looking for a graceful exit. 

As it happens, I've been able to devote a substantial portion of the last few months to connecting with friends and loved ones. If this is indeed my swan song, then I'm pleased with how it's unfolded. I've seen and been able to have heartfelt connections with almost everyone I'd like to, and the outpouring of support and well wishes directed my way has extended well beyond what I imagined it might be. It has been a very touching winter and spring.

However, I don't feel done. It feels much more like a new chapter to me than the end of the book. 

Though my prospects for living well with multiple myeloma are still difficult to assess, I am working closely with my oncologist in Duluth to try to push the cancer into remission and to regain what I can of my vitality and stamina. I have a lot to live for and am fully behind the joint efforts of my doctors, my friends, my partner (Susan), my kids (Jo & Ceilee), and myself to bolster my prospects.

Since the initial diagnosis and the onset of chemotherapy I have been making slow but steady progress in regaining durability, focus, and flexibility. My kidneys are recovering and I have suffered no falls or broken bones despite how much the cancer has weakened my skeletal structure through calcium leaching.

While it's pretty certain that I'll need to cross sky diving and alligator wrestling off my bucket list without accomplishing either, I'm fine with that.

I want to devote more time to writing and teaching; to laughter and the enjoyment of good food, to leisurely travel and the general enjoyment of sucking on the marrow of life's bones. To the extent possible I'd like to manage doing this with Susan as my fellow traveler and life enthusiast. I figure we could do that for the next 10-20 years and be a very happy couple. While it remains to be seen if my psyche is sufficiently strong to manifest this vision of Laird's future, it is a compelling image and will be more than enough to keep my eyes on the prize as I undergo a stem-cell transplant at Mayo Clinic July 12.

Thus, I have 25 days to go before surrendering myself to the rigors of Rochester, where we'll reboot my blood producing capacity and see how the cancer likes that.

I am freshly back (yesterday) from a trip to Portland, where I field tested the range of my recovering strength to hop back in the consulting/teaching saddle long enough to conduct Weekend III of a facilitation training program I launched there in December. I worked with long-time partner Ma'ikwe Ludwig and the teaching went fine.

Though I came in for a landing each evening on fumes (and was glad that the training did not extend to a fourth day), each night's rest restored me for the day that followed and I missed no sessions. While Ma'ikwe prepped the various two-person teams that facilitated meetings for our host group each day, I would work with the remainder of the class (say seven students) to simultaneously offer a deeper exploration of choice cuts of the facilitator's craft. With two interchangeable teachers on the flight deck, we were able to keep everyone engaged and working with fresh material throughout the three days. 

While this is the last piece of on-site professional work that I'll attempt before the July transplant, it was highly gratifying to see how well it went and that there are excellent prospects for my being able to return to effective pedagogy after the summer. This is valuable both to me economically (it's how I earn my bread) and psychically (I can still follow my career path as a social change agent).

In the three-plus weeks remaining before Rochester, Susan and I will attend the 45th reunion of our college class (marking the first time I've attended—it should be quite the time, and an unparalleled opportunity for yet more conversations with people I haven't seen in many moons), and a wedding reception for the daughter of a long-time friend. Who knows, maybe we'll even see a baseball game (if you could label what the woeful Twins are up to these days "baseball").

Life is full of surprises.

Rising to the Occasion

I'm typing this from the waiting room of Portland Union Station, where I'm patiently awaiting departure of the eastbound Empire Builder. Over the weekend I partnered with Ma'ikwe Ludwig to conduct a three-day facilitation training in the Pacific Northwest, and the best news is that I was able to answer the bell and am returning home without being depleted or exhausted. Hurray!

Though I was pretty tired by dinner time each day, I didn't miss any sessions and was able to give teacher-grade attention to the class—which is my baseline standard for doing the work. After placing my process work on hold to focus on my health more than four months ago, it was gratifying to be able to once again give to others—helping to address, even in a small way, the imbalance in my karmic balance sheet.

It was the most ambitious thing I've attempted since being diagnosed with multiple myeloma in late January. It is also the last piece of work I'll attempt before my stem-cell transplant, which begins July 12. (To be sure, I still need to craft my reports from the weekend, so the work from last weekend isn't yet complete, but I can accomplish that in my own rhythm and at home). If things go well with the transplant and I am able to place the cancer in remission, the work this weekend will be a prelude to my reestablishing my consulting/teaching career. If things do not go well—which is always a chance, no matter how much I think good thoughts—then this past weekend my be my last turn at the lectern. As everyone present was aware of that range of possibilities, it added both poignancy and preciousness to our time together. At some point I will inevitably teach for the last time. Perhaps it just happened.

Being able to do the work also served as a helpful marker, indicating how far I've come in my recovery of everyday functionality. After all, my health goal is not simply to keep breathing; I need to be strong enough to deliver the goods when working with groups, which has implications about stamina, ability to focus my energy away from myself (good facilitators, in my view, approximate egolessness), and lightness on one's feet. It was not at all clear going at what level I could perform, and it was deeply satisfying to find that my recovery was strong enough to be solid as an instructor.

To be sure, this would not have gone nearly as well if I didn't have an accomplished partner to work with and the class benefited substantially from all the work that Ma'ikwe and I have done over the years to figure out how to blend our energies when sharing the stage. Even though I never left the room, there were moments when I needed to dial back my energy in order to focus on recuperation rather than delivery, and I could trust Ma'ikwe to handle the temporary increased load in those moments.

Dexa Bounce
I went to bed early Sunday evening (9 pm), happy to give my body a rest. Although I had a wide open Monday (with nothing scheduled before a leisurely 4:45 pm departure from Portland Union Station), I awoke with a small headache and was worried about how draining it might be coping with that for 38 hours on the choo choo.

After gratefully consuming a Honduran breakfast lovingly prepared by my host, Luz (scrambled eggs, salsa, warm whole wheat tortillas, garnished liberally with fresh-from-the-garden kale sauteed in oil and garlic), I went back to bed, hoping that further rest would work its magic on my headache. Fortunately, that's exactly what happened! What I had forgotten was the serendipity that my chemotherapy protocol calls for me to ingest 40 mg of dexamethasone (a steroid) every Monday and I reliably get a boost in well-being from that treatment. It couldn't have landed at a better time, and my headache is gone!

Ma'ikwe and I are traveling together as we head east. I'll get off at St Paul Wed morning, and she'll continue on to Chicago and then Quincy IL that same day. Via Skyline Shuttle I'll be back in Duluth by noon. After Susan collects me we'll drop off my still crippled laptop at Downtown Computer in order to get my email restored (messages have been accumulating for 11 days and counting) and Microsoft Office enabled. I'm doing what I can to prepare myself psychically for the avalanche of messages that will accompany the restoration, but I don't have much choice in the matter. I'm simply going to have to take my lumps.

A couple times over the course of last weekend I was able to avail myself of a work-around to connect with Susan. I borrowed Nancy's laptop (she's a student in the course) to compose a brief email message and then used Ma'ikwe's smart phone to establish a hotspot sufficient to send the message. (I couldn't use my laptop because I don't have access to Apple Mail yet). Fortunately this convoluted process was successful and we were able to share a few snippets. Though all too brief (an appetizer is not an entrée) , it was way better than radio silence.

I'm already looking forward with joy to ease with which I'll be able to connect with her again starting Wed afternoon—when all I'll have to do is to turn my head to the right and start speaking.

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