Monday, August 22, 2016

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.

Thursday, August 18, 2016

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.

Sunday, August 14, 2016

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.

Monday, August 1, 2016

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.

Friday, July 29, 2016

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.)

Tuesday, July 26, 2016

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. 😂😂😂" 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

Saturday, July 23, 2016

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.