Laird's Blog

Good News from Mayo: Steady As She Goes

Yesterday I was at Mayo Clinic for my Day 60 check-up (two months after my autologous stem-cell transplant, July 29) and everyone was smiling at the end of day.

The headline is I’m doing well. I met with Dr Buadi (my Mayo hematologist) and he officially labeled the transplant as “very good”; one notch below “terrific.” I didn’t earn the top rating only because my lambda light chain number was 2.7 (for reference, it was over 1800 when I was first hospitalized in January!) and not zero, and my creatinine number (measuring kidney function) was slightly above normal (though Buadi felt that was likely an artifact of my taking Bactrim, a medication that helps me tolerate other medications. Essentially the tests indicated that the cancer is still present, though in minuscule amounts.

In addition to having 12 vials of blood drawn Tuesday, I also had a bone marrow biopsy (my hip will be sore for a week), but there was not time before the meeting with Buadi to have it analyzed. Also, Buadi wanted a more detailed urine analysis (not yet in his hands) to get a more complete picture. However, I had had one done two weeks ago in Duluth and the result then was excellent, so I’m not worried.

The essential news is that I’m in good shape (for someone with multiple myeloma) and Buadi does not expect to see me again until next July, at the one-year anniversary of the transplant. Meanwhile, he has recommended that I go on a maintenance chemotherapy program where I take a single drug (Kyprolis) twice a week for three weeks, followed by a week off. If that regimen goes well, we'll back that off to every other week after three cycles.

So long as I tolerate Kyprolis well (which I did this past spring) and it continues to be effective in suppressing the cancer, he thought I’d be on that protocol for two years, after which everything would be reassessed. It all sounded good to me. Having a two-year window in front of me where he was expecting things to go well was the best news I’d had since my receiving my diagnosis in January. Susan and I are breathing much more deeply today. I feel like I just went off the endangered species list.

The only wrinkle in this good news is that Kyprolis needs to be taken by infusion (via intravenous transfusion into the bloodstream) which is accomplished as outpatient work in the hospital. On the one hand, this is a routine I’m familiar and comfortable with in Duluth, but it complicates traveling and my work as a teacher and process consultant. I’ll have to huddle with my oncologist in Duluth (Alkaied) to figure out how much wiggle room I’ll have around delaying some treatments in order to shoehorn them in around my road trips.

It will be a new dance, but it looks like I’ll be around a for a good while yet. Yippee!

Unpacking Impacted Tensions

As a professional consultant in group dynamics I rarely get asked to work with a group when everything is going fine. Usually they're leaking oil, have a busted leaf spring, or can't seem to shift into third gear—and are hoping for inexpensive repairs from me, the itinerant shade tree mechanic.

Overcoming Inertia
First of all, it can be awkward admitting (to a stranger, no less!) that your group has troubles that it's not able to navigate on its own. For most of us that's a humbling admission. 

One of the most important milestones in the history of my community (of 40 years), Sandhill Farm, was when we started asking outside facilitators to guide our annual winter retreats—where we'd set aside 4-5 days to conduct strategic planning; take a deep look at unhealthy patterns; and/or try out a new way of relating to each other based on the skill set and training of the facilitator. Unfortunately, it took us more than 15 years to start that tradition—to admit that we needed help. Up until then we relied solely on ourselves, and it was a bumpy ride.

But let's suppose you're past that hurdle. In general, the most complicated situations I encounter feature tension that's triggered by current events—yet is mainly fueled by a historic pattern of unresolved distress. In a blink, once the old pattern gets evoked the group enters gridlock, with frustration and despair souring the air. Not pretty.

So let's break down what's happening. Yes, it's complex, but it's not brain surgery. For the purpose of putting flesh on the bones let's say that the old dynamic centers around long-term member Dale, and the pattern is that Dale is all-too-often late in offering input on plenary topics (maybe Dale misses meetings, maybe he/she doesn't always read the minutes, maybe it takes Dale a while to formulate his/her thoughts). Suppose that some version of this has been going on for years and there have been a number of attempts to articulate the pattern and why it's problematic, yet the behavior persists. That's the back story.

The Presenting TriggerIn the most intriguing cases, the surface issue is compelling in its own right, and the groan response from the group can be baffling to Dale. (Why is everyone being so reactive to my germane comments?)

The key here is understanding that Dale is looking at one thing (the relevance of his/her input) while others have their attention on its tardiness. Dale feels disrespected by so many cold shoulders; the group feels disrespected by Dale (again) not contributing in a timely way. Both of these views can be examined and worked with, though not simultaneously.

The Dysfunctional Pattern
While some groups are not that stout when it comes to members giving each other constructive feedback (to be fair, it's a difficult skill to master), let's suppose that the group is ahead of the curve and is pretty good at it, and that serious attempts have been made to illuminate the dynamic for Dale. However, if the pattern persists for any length of time and the group feels that it's made reasonable efforts to try to turn it around, it won't take long before the group will gradually give up on Dale, expecting bad behavior—to the point that they might not even hear Dale's input; they'll just proceed immediately to "Here we go again" and "Wouldn't we all be better off if Dale would just shut up?" Not good.
  
The key point is that if the dynamic goes unresolved then it tends to continue to deteriorate. In addition to having problems with Dale, now there is a tendency on the part of others to not hear Dale, which undercuts the community's commitment to inclusivity and working with the input of all. Uh oh.

If this persists further, the group will start to be both irritated with Dale for coming in late and for failing to work with the feedback (as evidenced by there being no change in behavior). Perhaps the most insidious part of this is that the group will tend to believe that responsibility for the dynamic lies solely with Dale—not seeing their part in closing off to Dale. 

Instead of trying to talk it through (which experience has shown doesn't work), the group moves quickly from bad behavior by Dale to eye rolling, deep sighs, and crossed arms. Yuck.

Help Is on the Way
So how do you get off the merry-go-round? While every situation cannot be turned around (just as everyone is not meant to live together), I always believe it's worth a try. The approach that I use is to unpack a current example of the core dynamic—in this instance, Dale entering into the conversation late. Carefully, I would select someone in the group who is irritated by Dale and work this in a dyad, just as I would any conflict, relying on a four-step sequence of questions:

1. What are the feelings?
What is the emotional experience of each player?

2. What's the story?
What is the relevant series of events that is associated with the strong feelings? 


3. Why does it matter?
What is the meaning of the reactions? What's at stake?

4. What are you willing to do about it?
Now that you've had the opportunity to explain your experience in depth—and learned what the experience of the other player is—what are you willing to offer in the way of a unilateral olive branch meant to repair damage to the relationship without selling out, disavowing your values, accepting blame, or altering your personality. It has to be an honest offer that can be freely given. 

Note that this step is not, "What do you want the other person to do?" I find that offering something tends to land much better than making a request (which can land as a demand).

In my view it is essential that the above sequence be facilitated with curiosity rather than judgment. Just as the group comes to expect Dale to misbehave, Dale will anticipate the group's hostility and the facilitator will need to set a different tone—one that steers clear of blame and that opens the door to possibility. It is not an easy thing to do (maintain an attitude of wonder in the face of tension), yet it's worth gold.

The key to this working is that Dale and their counterpart be given an honest chance to follow through on their commitments to do something new, and that hearts do not remain hardened against that possibility. Of course, this won't get you very far if Dale (or their counterpart) makes an offer that they subsequently renege on. They have to follow through for there to be hope of turning the corner. 

It's important to see this is the lynch pin of the dynamic. If you can establish that Dale and others can change their behavior, then everything can shift—which is what you wanted all along.

Where's Walden?

Today's essay will unfold in four parts, where "Walden" is the common thread that weaves hem together.

1. Walden Pond
For most readers this will be the first association that comes to mind, the modest body of water about 20 miles west of Boston, made famous because philosopher Henry David Thoreau lived the simple life there during the period 1845-47, and then wrote about it.

Thoreau's best known work was Civil Disobedience, in which he laid out his thinking about the right relationship of the individual to government. He was also a naturalist and thus something of an inspiration—well ahead of his time—to those seeking back-to-the-land simplicity and a spiritual connection to place in the 20th Century. I was such a person when I helped start Sandhill Farm in 1974, an income-sharing agrarian community.

2. Walden Two
In 1948, behavioral psychologist B.F. Skinner chose to popularize his thinking by publishing Walden Two, in which he describes a fictional utopian community that operated under behaviorist principles.This book subsequently became the core inspiration for a handful of intentional communities that blossomed in the Hippie Era of 1965-75, including Twin Oaks (Louisa VA), Lake Village (Kalamazoo MI), and Los Horcones (Hermosillo MX)—all of which still exist today.

As someone who was deeply invested in community networking for 35 years, this was just one of the fascinating strands of cooperative living that I became aware of and tracked. Although behaviorist thinking never became dominant in the Communities Movement, the root principle of positive reinforcement (as opposed to controlling or guiding behavior through punishment) is alive and well in almost all cooperative living groups. It simply works better.

3. Woodsburner
This is the title of John Pipkin's first novel, published in 2009. I read it last month and it's the fictional account of four lives—Henry David Thoreau, Oddmund Hus (a socially awkward orphan Norwegian immigrant), Eliot Calvert (prosperous bookseller, inept playwright, and discreet purveyor of pornographic postcards), and Caleb Ephraim Dowdy (renegade minister and opium addict) whose lives intersect on April 30, 1844 in and near Concord MA when Henry accidentally sets the woods on fire—a thing he actually did.

In this treatment Thoreau is in anguish over whether to drop out (by building a cabin on Walden Pond and devoting his life to writing) or returning to the family pencil business, where they've been able to set the gold standard for domestic production based on a superior source of graphite called plumbago. Should he focus on civil obligations or civil engineering?

Simultaneously the other members of the dramatis personae are wrestling with important life choices, even as they strive to determine just how bad the fire is and what role they should play in containing it.

It's a barn burner—even if few actual outbuildings succumbed to the flames.
4. Walden Farkas
Earlier his week I spent an agreeable 18 hours visiting with Walden (and his two boisterous English Setters) at his home in McMinnville OR. Though it had been 43 years since we'd last seen each other, amazingly, we had no trouble dropping back into a depth of sharing that was the reason we had been friends all those decades ago.

Walden and I lived on the same dorm floors our freshman and sophomore years at Carleton College (1967-69) and became good friends. Although our relationship was strained when Walden dropped out before our second year ended, we managed to keep the pot stirred by getting together a few times during the first half dozen years immediately following. Then we lost track of each other… until two weeks ago, when a message from Walden magically materialized in my In Box.

In a laconic two-sentence email he reported that he'd stumbled across my blog and now lived in Oregon. Knowing that I was coming his way last week he suggested we get together. Well, hell, it seemed like a good idea to me, and it worked out that I could be dropped off in McMinnville Sunday evening, en route to my Monday afternoon rendezvous with train #28, the eastbound Empire Builder.

In this year of challenged health, I've enjoyed many wonderful visits with family and friends—people who made it a point to see me, not knowing if it might be their last time. Of course, no one knows for sure when the last time might be, but the question is understandably more in the forefront when you're diagnosed with an aggressive cancer. For all of that, the possibility of getting together with Walden had not been on my radar at all, and thus was a great treat.

I was touched both by his finding me, and by his deciding to reach out. He's mostly lived alone the past four decades (excepting his canine companions) and it meant a lot to me that he decided to interrupt his routine to invite me into his home.

Mostly we just yakked, allowing the conversation to flow wherever it wanted. There were funny remembrances, convoluted stories about what we'd each been doing the last four decades, bafflement that Donald Trump actually has a chance to become the next President, and the opportunity to share what we'd each distilled into life's lessons.

I may not know where Waldo is, but I seem to have no problem with Walden.

Reacquiring Warp Speed

This past weekend I was conducting Weekend IV of a two-year facilitation training in the Pacific Northwest. It marked the first work I'd done as a process consultant in three months—since co-trainer Ma'ikwe Ludwig and I conducted Weekend III of the same training.

As you can appreciate, this was an important marker for me as a cancer survivor who wants very much to be also be a career survivor, albeit on a somewhat modified (read humane) schedule. While the travel out (by train) was somewhat tiring, I came out a day early to arrive on site with enough breathing room to rest well before going on stage.

Under the model we use for the training, three-quarters of each weekend is devoted to preparing for, delivering, and debriefing real meetings that the students facilitate for the host group. The concept is that students learn faster facing live bullets than by hearing the trainers tell stories or conducting role plays. While I'm convinced that this is sound pedagogy, its efficacy hinges on the trainers being able to teach the moment—each of which is unscripted.

Thus, a training weekend presents a serious test of how far along I've come in recovering my cognitive agility. While the results in June were so-so, it was highly gratifying to be able to perform again at a professional level, to be able to come in and redirect sensitively as dictated by the situation. Whew. Thinking that I can do it is not the same as showing that I can do it.

An important teaching element is being able to demonstrate to the students how to make effective choices in the complexity and chaos of live meetings. In the most delicate moments this can mean being able to access any or all of the following skills:

o  Sorting the wheat from the chaff—extracting the essence of statements more or less as quickly as people speak.

o  Having a working memory of what has happened previously that bears on the current moment.

o  Phrasing comments such that the meaning is clear and requests are within the capacity of key individuals to respond positively.

o  Being ready to offer a deeper, cogent explanation of why your requests or observations are pertinent in the event the audience is confused.

o  Recognizing quickly when the group is heading in a dangerous or unproductive direction, offering a constructive redirection.

Describing such moments isn't nearly as powerful as witnessing them, so it's up to the trainers to be able to carry the mail.

While it's undoubtedly useful to be able to function on impulse power, there is nothing quite like achieving warp speed. It's nice to be back.

At the 16th Pole

The title for today's essay comes from the world of horse racing. In a one-mile race (typically once around the track), there are poles placed every 1/16th of a mile (every half furlong) which are visual indications to jockeys of how far along they are from the finish line. The last pole before the finish is the 16th pole.

In less than two weeks I'll be traveling back to Mayo Clinic to have my Day 60 check-up. Sept 27 marks 60 days since my stem-cell transplant, and Dr Buadi wants to see me then to figure out what success we've achieved in placing my cancer into remission. It's an important assessment, the results of which will go a long way in determining how best to manage my health going forward.

While the cancer was surely knocked back July 27 when I took melphalan (the poison that killed everything in my bone marrow, good cells as well as bad), the question is how far and for how long. As I have a relatively aggressive form of multiple myeloma the doctors need to keep a close eye on my markers, to be alert for its return. Both Dr Buadi (the hematologist who oversaw the transplant treatment in Rochester) and Dr Alkaied (the oncologist who oversees my treatment in Duluth) are anticipating that I'll be placed on a maintenance level of chemotherapy—because of the aggressive nature of my myeloma, how well chemo worked over the winter and spring, and how well I tolerated it. 

The tests coming up Sept 27 will determine which treatment will be selected. It might be pills; it might be infusions. While the latter is more awkward (infusions will need to be administered in a hospital or clinic on an outpatient basis, probably once every two weeks) pills can be taken anywhere. That said, I'll do whatever the doctors recommend.

Fortunately, I've been assured by Alkaied (I met with him this past Monday for the first time since June, before my trip to Mayo's) that there can be flexibility about dates. This is important to me as someone who hopes to resume his consulting/teaching career on a modified basis, and thus needs some latitude with respect to travel.

Meanwhile, the tests done Monday looked good. (I can hardly tell you how reassuring it is to watch your doctor scan the computer screen looking at your test results and saying, sotto voce, "Good" and even "Excellent." What you don't want to hear is, "Uh oh" or "Yikes!") Unfortunately, my Monday appointment with Alkaied did not allow enough time to return the most important test result: the amount of light chains in my blood and urine. In the kind of myeloma I have I was producing way too many light chain plasma cells and thus, in my case, this has been the most important indicator of the strength of the cancer. 

When I was first hospitalized in late January my light chain count was around 1600 (where 100 is considered acceptable). By the time I went to Mayo for the stem-cell transplant in July, the chemotherapy had driven that number down to under 50—proof that the chemo was working. So it was good news when Alkaied's nurse called Tuesday (I had left for Oregon by train Monday night) and told Susan that my light chain count was practically nonexistent. Whoopee!

Essentially, the test results at this stage (Day 48) could not be better. (Can you see me smiling?) Yes, it's early days and there will be more challenges ahead, but right now I'm enjoying the sun shining on my face, with the wind at my back. Today, life is pretty damn good.

Driving the Road to Recovery at a Safe Speed

I recently got this message from a regular consumer of my blog:

I am scratching my head. I had full faith that you would make it through, but I am taken aback by your—appearing to me utterly foolhardy—upcoming schedule. Do your doctors know?! Shouldn't you be resting and drinking lots of fresh juices, and work on de-stressing your life?

Usually, when people survive cancer they make changes in their lifestyle in order to rebuild their body's defenses. Let us know how you see that... reading your missive, I worry. 


As this is not the first time this question has come up, it seems worthy of a response. The inquiry comes from a concerned place and expresses reasonable questions. So… in no particular order, here are my thoughts about why I am doing what I'm doing as I recover from multiple myeloma, keeping in mind that I have every intention of rebuilding my body's defenses:

o  What can be more therapeutic than pursuing one's passion?
I'm convinced that attitude plays a large role in health. As such it's valuable to my health that I keep my social change work oar in the water, at least part time. While I no longer work full days (excepting when I'm on the job), it's important for my self esteem that I continue to contribute to making a better world, one meeting at a time, putting to use the knowledge I've accumulated over the years about the nuts and bolts of what it takes to function well cooperatively.

o  Yes, my doctors know my travel plans
I have two main doctors: Buadi (a hematologist) at Mayo and Alkaied (an oncologist) in Duluth. I have deep respect for both and both have signed off on my returning to work in moderation. So long as my body is telling me that my recovery is continuing and I'm not relapsing, I have a green light. They have even told me that ongoing maintenance treatments can be flexibly scheduled to work around my travel plans. If I go overboard I have no doubt that my body will let me know that I'm being overzealous.

o  My work is not aerobic 
While it requires sustained focus, process consulting does not strain my lung capacity, tax my kidneys, or pressure the tensile strength of my compromised bone structure. Further, you have to take into account that I have been doing this for work for three decades and have a fairly solid idea of what it takes. One of the distinct benefits of honing one's skills is learning how to conserve energy without compromising effectiveness. It's an art form.

o  I'm working about half rate
While my schedule may seem breakneck to others, it feels like coasting to me. For example, I expect to participate in no conferences this fall (last autumn I attended three). Here's what travel I have lined up from now through the end of the year, which covers a span of 16 weekends:
—one weekend community consultation
—four facilitation training weekends
—one FIC meeting (for which I have no organizing responsibilities)
—one visit to see my son and grandkids

o  Most of my work this fall will be training facilitators
The majority of what I'll be traveling to accomplish this fall will be conducting three-day facilitation training weekends. In each instance I'll be working with a co-trainer (not alone) and all three of the women that I'll be partnering with understand that they may need to fly solo for a time if I run out of gas and need to lie down to recharge my battery. What's more, I tested the waters in this regard last June (when I was weaker than I am now) and the training weekend went fine.

o  I'm a veteran train traveler
Per my wont these past three decades, I will generally travel to and fro via Amtrak, where I find the rhythm of the rails to be mostly relaxing; not draining. I know how to slow down my metabolism on board the choo choo and rest up for the work ahead (or how to recuperate from the work just concluded). Having done it already, I know that I sleep reasonably well in the reclining coach seats, bad back and all.

o  I am not you
Like most everything else, there is considerable variance among people's temperaments and accustomed sense of pace. What suits one may be overwhelming for another, or perhaps painstakingly slow for a third. In making choices for Laird I am not asking others to make similar selections. I am only asking others to give me room to find my own way.

Bridging

This evening, for the first time in more than a year, I'm hoping to play duplicate bridge. It will end my longest break from it since I first ventured into that arcane world in 1999. While I wasn't seeking a hiatus, one came to me anyway by virtue of the confluence of: a) my moving away from northeast Missouri (and the familiarity and comfort of my local club); b) my lack of a partner; and c) my ill health.

Now though, I'm doing much better in managing my cancer and I have the bandwidth to gradually reestablish social patterns in my new home (it is not enough to be catching up with Susan on Louise Penny novels and watching West Wing reruns). With Susan's blessing I'm venturing a return to what had become my favorite recreational pastime since I turned 50: duplicate bridge.

One of the niceties about the bridge world is that if you show up early to almost any club game, the directors will work hard to find you a partner. Thus, you need not arrive with a partner in tow (though that's preferable). In Duluth there is a game every Monday at noon and every Wed evening, which will afford me plenty of opportunities to play.
• • •As I thought about what to write about today, it occurred to me that the term "bridge" evokes a plethora of positive meanings for me, which it might be fun to illuminate:

1. Lift Bridge
 
This is perhaps Duluth's most distinguishing structural feature: the aerial bridge that connects downtown with Park Point, a long spit of sand that extends south, protecting St Louis Bay (which is the mouth of the river of the same name) and the estuary where all of the city's port facilities are located. In the image above you can view an ore boat making the transit between harbor and lake. Taconite (low grade iron ore mined in the Arrowhead country that Duluth is the gateway to) is loaded here on ships such as these, outbound for the steel mills of Indiana and Ohio.
The lift bridge was originally built in 1905 and then rebuilt in 1929 to be what it is today. To accommodate ships of all kinds the canal is 390 feet wide and the deck of the bridge can be lifted 135 feet (in about a minute via hydraulics and counterweights). It's raised and lowered about 5000 times annually, which works out to about 14 cycles daily.  2. Bridging Positions
A lot of what I'm called on to accomplish as a professional facilitator is creating a pathway between people where none exists, so that I can effect a restoration of flow of undistorted information and (hopefully) understanding. It's like being a plumber unclogging pipes. While not always noxious, dynamics among afflicted parties can definitely get anaerobic and tense at times. Thus, like plumbing, it's not so much that the principles are hard to grasp as that you are often asked to perform (with grace and even-handedness) under difficult and volatile conditions. 

To be good at this kind of bridging you need to be able to hear and see people where they are (rather than where you or others think they ought to be), which skill requires that the practitioner be facile at shifting perspectives and empathizing with the person feeling isolated (and possibly misunderstood). It's one of my most valuable skills.

3. Caring Bridge
This refers to the blog site used by my partner Susan and others to report on my progress as I steadfastly work to treat and contain my multiple myeloma (first discovered in January). While I mostly post about my health on this blog; others who have visited me or served in the capacity of being part of my care team have been encouraged to write their impressions and share information about my progress on the Caring Bridge site.

This site has now been visited more than 5000 times (since it was launched in late February), doing yeoman's work in keeping people informed—for which I'm thankful. It's great getting a variety of voices and viewpoints in play, especially ones for which I have no responsibility for directing or editing.

4. Duplicate Bridge
As noted at the outset of this essay, I am itching to start playing bridge again after a break of 15 months (reading Frank Stewart's weekday column in the Minneapolis Star-Tribune is not nearly enough). 

Tonight I'm hoping to put my toes back in those waters, bridging from my old life to the one I have today as a cancer survivor living in a new town.

In closing let me share a good laugh I had a couple months back when Sharon (Susan's sister-in-law), who is a very accomplished duplicate player, explained that there has been a brisk sale of bill caps emblazoned with the common bridge bid "No Trump" among American Contract Bridge League players—especially since the Republican National Convention. Maybe I can find one available at a tournament in nearby Carlton MN this weekend.

Hah! I figure if we can't retain our sense of humor, what hope have we?

Not Falling Behind

Susan put on wool socks yesterday—a sure sign that fall is in the ascendant. Also, we can't help noticing that it's getting darker and darker when the alarm goes off at 6:15 am each weekday. It's not our failing eyesight; it's an inexorable seasonal trend.

At least it is in Duluth. At COB Monday, the ice cream shops will shutter their windows until May, even as the locals begin to shudder in the presence of breezes off the lake. So the wheel of the calendar is turning, and I'm gearing up for the fall process season—where I'll (cautiously) step back into the rhythms of an itinerant consultant, freshly recovered from getting my multiple myeloma under control these past seven months.

Though it's too soon to know exactly how much of my health I've regained (or how much I've been able to maneuver the cancer into remission), it's not too soon to begin living the life I can with the health I have. In 10 days I'll board the westbound Empire Builder (train #27 if you're scoring at home) for the City of Roses. In Portland I'll be met by Luz Gomez, who will drive me the rest of the way to Medford, where Weekend IV of the Pacific Northwest facilitation training will be hosted by Ashland Cohousing.

I can hardly wait for the opportunity to teach again. It's one of the things in life I enjoy most, and is a great fit with my accumulated knowledge (40+ years of group living and almost 30 years as a process consultant) and limited energy (as I gradually continue to rebuild my stamina following the stem-cell transplant in July).

Two weeks after my gig in Oregon (note that I'm protecting a week of recuperation in between), I will be in Richmond VA starting a different version of my two-year facilitation training—this time in the Southeast (centered around NC and VA) hosted by Richmond Cohousing, a forming community in the capital of the Cavalier State. Following that I'll be enjoying fall in Duluth, leading up to a trip to the City of Angels to see Ceilee and my grandkids in late Oct.

If I have my way, I will springboard off the end of that visit to use Los Angeles as my point of departure for a romantic (and heroic?) traverse across the breadth of North America to attend the fall organizational meetings of the Fellowship for Intentional Community at La Cité, a well-established ecovillage just east of Montréal. 

My hope is to negotiate the entire trip from Los Angeles to Ham-Nord QC and back to Duluth via choo choo—to the extent possible. It will take me five days and 4839 train miles eastbound (with a sharp dogleg right in Vancouver) plus two days and 1505 miles on the rebound (from Montréal to St Paul via Schenectady and Chicago). It's a fantasy train trip, and includes a ride on the Canadian (Vancouver to Toronto) end for end—it's the only long distance train across the continent that I haven't ridden. I'll get home in the wee hours of Nov 9 and will happily spend the rest of the month in Duluth, snuggling with Susan and giving thanks.

While Wikipedia cautions would-be travelers on the Canadian (Via's train #2) that the scenery can get monotonous (lots of pine trees and lakes), I am, after all, a deeply experienced bourgeois in backwoods canoeing and have a special affinity for both the North Woods and the Canadian Shield (the Precambrian granite that dominates the terrain from Winnepeg to Toronto). As it happens, in the early morning hours of the fourth day the train will chug through some of my most familiar territory in western Ontario, including a refueling stop in Sioux Lookout, from which I've launched many a canoe trip on Abrams Lake. So I'll be fine. 

My trip aboard the Canadian will simultaneously be both eye-opening (new scenery, especially as we crawl through the Rockies where we'll glimpse Banff, Jasper, and the impossibly picturesque Lake Louise) and nostalgic. A nice mix. 

While I'd much prefer to conduct this journey with Susan, she has used most of her vacation days to support me in my health crisis this year and she feels the need to stay closer to her desk at St Paul's the remainder of the year—paying back the church's kindness and understanding in letting her take off a good deal of time while serving as my main support. I'm fervently hoping that 2017 will be more characterized by our traveling together for our mutual pleasure than for attending to my medical treatments.
• • •In closing I note that one of the regular features of autumn is the shift from daylight savings back to standard time, the mnemonic for which is "spring ahead and fall behind." Looking backwards, it's easy to see that my health was falling behind last fall (though I didn't know it at the time, my deteriorating back ultimately resulted in my hospitalization with excruciating pain and the discovery of my cancer). This year, ironically, I'll be "falling ahead," taking advantage of the change of season (when vacations are over and communities return to full strength) to reenter the orbit of my consulting career, cherry picking the aspects from which I derive the most pleasure (and believe I'm delivering the most good).

Hopefully, this year there will be no falling behind.

Monday, Monday

Monday, Monday, so good to me
Monday mornin', it was all I hoped it would be

   —opening lyrics to Monday, Monday by the Mamas & Papas (1966)

I know that Mondays generally have a poor reputation, but yesterday turned out to be a really terrific day for me.

1. Health Costs
After being buried in medical paperwork over the course of my hospitalization last January and subsequent battle with cancer (multiple myeloma) the last seven months, I've been in limbo regarding what portion of my staggering medical costs would ultimately fall to me to reimburse. While I had Medicare coverage in place as well as supplemental insurance (with Aetna for the period Jan 1-March 31, and with Medica from April 1 onward) it has not been easy to tell who was going to foot the bill for everything when the music stopped.

Part of what makes it hard is the long time lag between services and billing (in some cases months). Another is the way that doctor and hospital bills are typically recorded separately, even though they are coming from the same entity (in this case, St Luke's Hospital in Duluth) and arriving under the same letterhead. It is the very devil knowing how costs have been attributed and whether or not you've seen everything.

When you further add in the likelihood of 500-lb sumo wresting between the hospital and my insurance carriers, it leaves a financial lightweight like me breathless and confused. I want to be responsible for my bills—but what, exactly, are they?

I had delayed making payments on my St Luke's bills because the numbers kept changing and I am loath to accidentally overpay. I wanted to make sure both that the bills were complete and that all the intramural wrangling with the insurance companies was complete before I started signing checks. 

Thus, imagine my chagrin when I received a call last Thursday from a collection agency that was inquiring about my overdue St Luke's account. Yikes. I had hardly had any contact (other than routine paperwork) from St Luke's accounts receivable department and here they'd turned it over to a collection agency. 

From the person I spoke with, I was—for the first time—able to get straight answers to four questions: a) did this cover hospital bills, doctor bills, or both (answer: just hospital); b) over what period of time were the bills for (answer: Jan 1-March 15); c) could I count on the hospital bills being complete for that period (answer: yes); d) had all the negotiating with Aetna, my supplemental insurer, been completed relative to my bills (answer: yes). OK, that's what I needed to know to be ready to start making payments.

I was quickly able to negotiate a payment plan whereby I contributed $250/month against an outstanding debt in he vicinity of $5500.

That done, I still had important outstanding questions about my overall financial liability:

Open Question #1:  What would be my portion of the doctor fees for the first quarter of 2016?

Open Question #2:  What might I yet owe for hospital charges for March 16-31, the remainder of the time I was covered under Aetna? While I was not hospitalized that final fortnight of the first quarter, there was ongoing testing and infusion therapy, so I'm expecting further charges.

Open Question #3:  What would I owe while being under Medica's insurance umbrella (April 1 onward), which offered superior coverage, yet would include the entirety of my stem-cell transplant at Mayo Clinic. This had the potential to be a very large figure.

In Monday's mail I got a bill from St Luke's for $111.18. I had no idea what services it covered, or for what period of time, so I called to ask. It turned out to be the total of what I owed for doctor services for the first quarter of 2016—everything else was being picked up by Aetna. Whoopee, that was good news. I had been girding loins for a bill that was at least four figures.

While it was curious to me (as a retired administrator) that St Luke's accounts receivable was handling the doctor bills so differently than the hospital bills, I didn't ask why. I was just happy to get such a friendly answer to my first question.

Next, I called Medica to get a handle on what I might expect in the way bills for April 1 forward. Here the news was terrific: in all likelihood, everything would be covered by Medica! Now that's what I'm talking about!

Once I had committed to moving to Duluth from North Carolina at the end of March I had to switch insurance policies (it turns out that under federal guidelines one's options for supplemental insurance under Medicare are specific to the county in which you reside and the policy I had with Aetna—suitable for Orange County in NC but not St Louis County in MN—was no longer an option). With the help of a local broker, I chose to go with Medica's best policy: Prime Solution. While I contribute a small co-pay on medications, and my policy doesn't help with housing (such as staying at Transplant House for 5+ weeks in Rochester, which ran into four figures), it pretty well covers everything else, with no deductible. 

That was a great stone lifted from my shoulders (and a wonderful answer to my third question). While I don't yet have the answer to my second question, my exposure there is fairly limited (only two weeks of outpatient services), so I expect to be able to weather it.

Of course, I'm still paying hefty monthly premiums for both Medicare and Medica, I had bills from my time at the rehab unit of Ecumen Lakeshore in February, and I've still got cancer (which translates to more treatments and doctor visits ahead), yet it now looks like I have a decent chance to end the year with a bit of money still in my checking account—a possibility that did not at all seem likely a month ago. In that regard it was huge that I've received over $8000 in donations to help with my health care costs in response to the appeal I posted in this blog July 7 (My Health and My Finances). Almost 30 people (both individuals and couples) generously responded and it's made all the difference. Thank you one and all!

2. Maskless in Duluth
While the news about my financial exposure would have been enough to have made Monday a stellar day, it got better. I had taken a blood test Friday and Dr Alkaied's nurse (Alyssa) called Monday to let me know that everything was in the normal range. That meant I could stand down on mineral supplements (such as magnesium and potassium) and my neutrophils (disease fighting white blood cells) were now strong enough that I no longer needed to wear a mask in public. Hurray!

Every day, things are getting better.

Cancer as Opportunity

I've just read Tom Brokaw's A Lucky Life Interrupted. Published last year, it's a breezy, personal account of his journey with multiple myeloma, the same disease that I have, contracted two years ahead of me. While he doesn't have the exact same version of myeloma that I do, it's close enough. Especially his coping with chronic back pain amidst all the chemotherapy.

One the things that helps most in navigating a life-threatening illness is stories from others on the same journey, and Brokaw's offering was terrific in that aspect. While upbeat, it is not sugar-coated.

What I'm finding—which parallels what Brokaw reports—is that coping with cancer is another life experience, a chance to find out powerful things about yourself, even though you didn't sign up for the exploration. You can fight it, lament it, or roll with it.

o  Life gets stripped down to essentials. If you have limited time and/or energy, how will you budget what you have? This question suddenly looms large. While it may always have been there in some capacity, now it is front and center.

o  Beyond "why me?" there are richer existential veins to mine. Tom, on the advice of a close friend, was able to shift it subtly to "why not me?" which I adore. There is a lot there. First of all, you need to move beyond self-pity, and make peace with your mortality (which is surely coming, no matter how fast we run). One's life is changed by serious illness (you have to make adjustments to diet and concessions to the limitations of a body now more frail), but you can still be you. All you have to do is sort out what that is, and how to pursue it within your new constraints.

I fully intend to be as vital as possible, for as long as possible. While that's not a change of plans, it is now a concrete plan, not a vague ideal.

In writing the book, Tom ultimately made the choice to share his journey publicly. I have made a similar choice, and it helped me to have this peek behind his private curtain. Not because I am suddenly so wise or heroic, but simply because sharing our stories is the oldest coin in human relations, and, ironically, you don't grow richer by hoarding—only by spending.

o  I have written previously about how cancer can become a potential bridge to others who feel isolated by health challenges—something that I sense will, on occasion, be an asset for me as a professional facilitator. But there's more.

For example, I'm finding out a lot about my tolerance for pain, and my motivation to be physically functional. It's one thing to give up rock climbing (which I hardly ever did); it's more urgent making sure I can bathe myself and recapture my agility and stamina in the kitchen—while I can accept a wide range of limitations on my choices, I want to be minimally reliant on others (Susan especially) to meet basic needs. Apropos this dance, it was helpful to read what Brokaw wrote about his debilitating back pain and how difficult it was for him to accept limitations on what had been a freewheeling lifestyle.

While I don't aspire to complete independence (does anyone?), I do want a balance of give and take with Susan, where our relationship can settle into a rhythm that is a more partner:partner than nurse:patient. That's my goal.

o  Cancer, unexpectedly, gives me a forum to speak about wrestling with difficult choices, about death, about what it means to live a life well. I like having a chance at that bully pulpit. Like Tom, I'll be sharing about a life that has been full of magic moments, yet not without bumps and missteps along the way.

Cancer as Opportunity

I've just read Tom Brokaw's A Lucky Life Interrupted. Published last year, it's a breezy, personal account of his journey with multiple myeloma, the same disease that I have, contracted two years ahead of me. While he doesn't have the exact same version of myeloma that I do, it's close enough. Especially his coping with chronic back pain amidst all the chemotherapy.

One the things that helps most in navigating a life-threatening illness is stories from others on the same journey, and Brokaw's offering was terrific in that aspect. While upbeat, it is not sugar-coated.

What I'm finding—which parallels what Brokaw reports—is that coping with cancer is another life experience, a chance to find out powerful things about yourself, even though you didn't sign up for the exploration. You can fight it, lament it, or roll with it.

o  Life gets stripped down to essentials. If you have limited time and/or energy, how will you budget what you have? This question suddenly looms large. While it may always have been there in some capacity, now it is front and center.

o  Beyond "why me?" there are richer existential veins to mine. Tom, on the advice of a close friend, was able to shift it subtly to "why not me?" which I adore. There is a lot there. First of all, you need to move beyond self-pity, and make peace with your mortality (which is surely coming, no matter how fast we run). One's life is changed by serious illness (you have to make adjustments to diet and concessions to the limitations of a body now more frail), but you can still be you. All you have to do is sort out what that is, and how to pursue it within your new constraints.

I fully intend to be as vital as possible, for as long as possible. While that's not a change of plans, it is now a concrete plan, not a vague ideal.

In writing the book, Tom ultimately made the choice to share his journey publicly. I have made a similar choice, and it helped me to have this peek behind his private curtain. Not because I am suddenly so wise or heroic, but simply because sharing our stories is the oldest coin in human relations, and, ironically, you don't grow richer by hoarding—only by spending.

o  I have written previously about how cancer can become a potential bridge to others who feel isolated by health challenges—something that I sense will, on occasion, be an asset for me as a professional facilitator. But there's more.

For example, I'm finding out a lot about my tolerance for pain, and my motivation to be physically functional. It's one thing to give up rock climbing (which I hardly ever did); it's more urgent making sure I can bathe myself and recapture my agility and stamina in the kitchen—while I can accept a wide range of limitations on my choices, I want to be minimally reliant on others (Susan especially) to meet basic needs. Apropos this dance, it was helpful to read what Brokaw wrote about his debilitating back pain and how difficult it was for him to accept limitations on what had been a freewheeling lifestyle.

While I don't aspire to complete independence (does anyone?), I do want a balance of give and take with Susan, where our relationship can settle into a rhythm that is a more partner:partner than nurse:patient. That's my goal.

o  Cancer, unexpectedly, gives me a forum to speak about wrestling with difficult choices, about death, about what it means to live a life well. I like having a chance at that bully pulpit. Like Tom, I'll be sharing about a life that has been full of magic moments, yet not without bumps and missteps along the way.

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?

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