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.)
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. 😂😂😂" Sigh. When it comes to sartorial splendor, I've never been known as a trendsetter.]
As if the medical care wasn't amazing enough, one of the lesser known aspects of visiting the Mayo complex is that there is original art displayed on almost every floor of every building—next to elevators, in hallways, and in lobbies. I'm talking about sculptures, ceramics, paintings, lithographs, textiles… everything. When you digest that Mayo Clinic is comprised of half a dozen multistory buildings and that there are typically three banks of elevators to navigate each building, there is an incredible number of installations. As near as I can tell, most of the art has been donated over the years (by foundations and grateful patients), and all of it is available to be viewed by the public—the vast majority of which are there seeking treatment for a serious health issue, not to peruse art. Yet what could be more uplifting than seeing first class art on your way to getting first class treatment?
Alison arrived yesterday from Chicago as we negotiated a shift change among my primary care givers. After two weeks Susan went back to Duluth to crank out the monthly bulletin for St Paul's Episcopal Church (her half-time day job) and Alison is in until Friday, when Ceilee will relieve her.
Already Alison and I have had a great visit. After power napping in the late afternoon (it was good to lie down after the surgical installation of a central line catheter in the morning, and the aspiration of two fat samples from my belly in the afternoon—to assist in the hunt for evidence of amyloids) we had a leisurely dinner (corn chowder reprised from Sunday) and then sat in padded rocking chairs on the front porch for a couple hours after the sun went down.
We talked about family, growing older (Alison is thinking about getting a hip replacement as her originally installed factory parts are wearing out), and what it's like to be living in US society today, where Donald Duck Trump could be the Republican presidential nominee. Life is full of surprises and we're taking advantage of our four days together to—in no particular order—reminisce, catch up, plot future rendezvous (think family reunions), delight in life's mysteries, and laugh a lot.
Tomorrow afternoon I get what I came for: an injection of melphalan to conduct a scorched earth campaign against my cancer by wiping out everything in my bone marrow. The chemical will be placed in my blood via the central line. The procedure is straight forward, only takes an hour, and won't hurt. It will trigger a die off of cells all over my body. In addition to my bone marrow, the fast-growing cells of my digestive tract and mouth will be hit hard, and I expect to lose my hair. It takes a number of days for that to fully play out, and I should bottom out around Monday.
Of particular interest to me is how the chemo will impact my GI system, and whether I'll be weathering nausea, diarrhea, and other fun things like that. While I've been given prescription medication to help with potential digestive side effects, if I've learned anything over the last two weeks it's how much responses vary person by person. I'm crossing my fingers (as opposed to holding my breath) that I'll get by on the light end—which has been the case so far with all other treatments I've received where a negative GI response was a known possibility (knock on wood). Obviously, if I can dodge the nausea bullet it will greatly aid my efforts to maintain (or revive) an appetite. So my mantra this week is envisioning a calm tummy.
Tomorrow's infusion of melphalan will be followed by the reintroduction of my stem cells Friday, to start the recolonization of my bone marrow with good stuff (hold the cancer cells, please). Unlike the quick in, quick out process on Wednesday, the stem cell transplant will take all day. When Ceilee arrives on site at 8:45 am that morning (via an American red eye from LAX), I'll already be tucked into a bed at Mayo getting a saline infusion that lasts for four hours, prepping my body to receive the stem cells. After the stem cells have been lovingly inserted into my bloodstream there will be another four-hour saline infusion before I head back to Transplant House. Translating this into musical metaphors, Wednesday evokes Sting, while Friday conjures up Satchmo:
Up a lazy river, how happy we could be
If you go up a lazy river with me
—sung by Louis Armstrong; lyrics by Hoagy Carmichael
As a bonus, I'm looking forward to Friday (Day Zero of the transplant countdown) as my final opportunity to indulge in Mayo's collection of in-house movies, interspersed with more rounds of free-ranging conversation with Alison and Ceilee, a satisfying admix of the thoughtful, the provocative, and the tender.
"The time has come," the Walrus said,
"To talk of many things:
Of shoes—and ships—and sealing-wax—
Of cabbages—and kings—
And why the sea is boiling hot—
And whether pigs have wings."
—excerpted from The Walrus and The Carpenter by Lewis Carroll
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.
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?
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.
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?
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.
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.
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 Fitger'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 cities all over the upper Midwest, Duluth had its own successful brewery for about a century (1857-1972), but Fitger'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 former 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.
