Laird's Blog

A Lovely Weekend at the Turn of the Weather

We got to flip a calendar page this past weekend and I thought I'd share with readers some of what I indulged in from COB Friday until Monday morning.  Sort of a day-in-the-life of cancer survivor awaiting transplant therapy.

o  Today, for the first time since last fall, the entire state of Minnesota was depicted in yellow on the US weather map, indicating that the highs today would be at least 60 degrees statewide. Woohoo! Can leaves be far behind?

Susan and I got a sneak preview of spring Saturday when we drove down to Stone Lake (about 90 miles south of Duluth) to spend the day with good friends, Ray & Elsie Martin. They had leaves down there, and the green in the winter wheat was mouthwateringly verdant. (To be fair, the air temperatures were still chilly and we put the fireplace to good use after dinner. So there's still considerable warming to accomplish before going crazy with Japanese eggplants in the garden.)

o  Yesterday afternoon, Susan and I attended a surprise birthday party for a friend named Nelson. It was held outdoors at a marina in Superior (which worked out OK if you were in the lee of the building, bathed in the late afternoon sun). In addition to meeting gobs of Susan's friends and local connections, they served a catered sit-down meal centered around pasties and a delicious cole slaw. 

There is nothing more evocative of place than characteristic food, and pasties are inextricably linked to the North Woods for me. I last wrote about them the last time I enjoyed a pasty (Catching the Ferry in 2010) when I spent a couple weeks vacationing on Drummond Island off the Upper Peninsula, and it all came back to me with the first bite. Finely chopped potatoes, carrots, and onions commingled with meat shreds in a savory pastry shell. Yum!

o  Since taking the plunge back in 1999, my favorite recreational pastime has been playing duplicate bridge. To be sure, I enjoy many things and love game playing generally, but nothing beats bridge at the duplicate level. I used to play regularly (once a week) at duplicate club in Kirksville when I lived in northeast MO, but I've only managed to play one time (last August, while visiting Sandhill) since leaving MO last June.

Of course, mostly this got set aside in recent moths to attend to my health, but I'm well enough now to indulge in occasional card playing and I was happy when Susan suggested that we play bridge with Ray & Elsie Saturday afternoon. While we only got in about 10 hands it has great fun (especially for Susan—the birthday girl—who was dealt one terrific hand after another) and I had the chance to play a couple of slam hands, the best one being off an ace with the king of trumps lying offside. When the defense failed to cash their ace on the opening lead I was able to wriggle out of losing it by establishing a side suit, and my 12th trick came from playing the seven of spades (a side suit) after roughing out the defense's 10. Very satisfying.

Susan plays bridge on Thursdays in a teaching class and I've been invited to go with her this coming week to see where I might fit into the Duluth duplicate scene.

o  Over the weekend, Susan and I started mapping out our support schedule for my coming stay in Rochester (in conjunction with my stem-cell transplant at the Mayo Clinic, starting July 12). We are blessed to have four different folks who have volunteered to do a shift while I'm in Rochester and take over the role of primary caregiver for a few days, giving Susan a break. In all, I've been told to expect a stay of six weeks, and it will be great for Susan to have regular breaks.

While she and I like being together, there are limits. Planning for breaks at the outset creates a more humane schedule. Here's what the support person will be asked to provide: 
—Escort me to and from Transplant House to Mayo's for daily testing and treatment.
—Be my cheerleading squad, helping me stay in good spirits while I cope with the heavy duty chemotherapy.
—Encourage me to get regular exercise  (seeing how quickly my body atrophied after three weeks in the hospital in Feb, I am determined to do what I can to not suffer as much physical deterioration this summer).
—Cajole me to drink enough liquids (three quarts daily).
—Get me to eat enough protein (despite the expectation that my appetite will be diminished).

This should leave plenty of time for visiting, working crossword puzzles, reading novels, and listening to Giants games on radio (streamed via my laptop). Who knows, maybe I can find four for bridge among the transient members of Transplant House.

o  Gradually, I've been upping the ante on social engagements as my strength improves. Susan and I attended a local performance of the Broadway musical, 42nd Street, Friday evening; we drove to Stone Lake WI for the day on Saturday; and we attended a birthday party Sunday afternoon. While I don't intend to be busy like that every day, it's nice to know I can handle it.

In fact, despite the increased activity level, I was able to navigate the entire weekend without once relying on extra medication to see me through. It's nice to have additional spring in my step right as there's additional spring in the air.

MM in the Spotlight

This past week I finished reading Salman Rushdie's Satanic Verses, the book that sparked enough controversy among orthodox Muslims that it resulted in the Ayatollah Khomeini issuing a fatwa calling for Rushdie's death in 1989. (Talk about literary criticism!) Although the British government stepped in to provide the author with round-the-clock protection and Rushdie is still with us today, there remains serious tension over freedom of speech in connection with the novel, and its examination of the Muslim faith in connection with British immigration.

Satanic Verses was written in the style of magical realism (a la Gabriel Garcia Márquez' classic, One Hundred Years of Solitude, published in 1967). I loved the free flowing nature of the narrative as it follows the improbable journeys of two protagonists, Gibreel Farishta (a Bollywood superstar) and Saladin Chamcha (a voiceover virtuoso), after they are the sole survivors of a terrorist attack on their jumbo jet.

Nearing the end of the book, I brought it with me to my infusion therapy session Monday, and was taken by surprise with this opening sentence to the final subsection:

Eighteen months after his heart attack, Saladin Chamcha took to the air again in response to the telegraphed news that his father was in the terminal stages of multiple myeloma, a systemic cancer of the bone marrow that was "100 per cent fatal"…

Three months ago I'd never heard if multiple myeloma (MM), and now it's everywhere. While I mused briefly over how closely I needed to be following that particular plot development, you have to shake your head at the creative ways that art can imitate life.

One of the fascinating things about MM is that it's a corner of the cancer world (roughly one per cent of cancer today shows up as multiple myeloma) about which there is a lot of progress being made in how to treat it. What had been "100 per cent fatal" 30 years ago is not the same sure thing today. The stem-cell transplant procedure that I'll have done in July offers real hope of containing the cancer and giving me several more years of good quality living. 

At the very worst it gives me something tangible and constructive to point towards, which is how my oncologists and I are approaching it. In turn, this helps me maintain an up-tempo attitude as I gear up for this summer's transplant. It allows me to be more thoroughly present for the limbo I am floating in right now, where, for the next 10 weeks, I'll be able to engage in regular email traffic, stay current with paperwork, attend concerts, and otherwise come across as relatively normal—even though I have little idea how much boost I'll garner from the transplant procedure. We won't know until we do it.

While none of this changes my overall fate (after all, we all die eventually), it definitely spices up my immediate prospects, and I am thankful for the gift of March through mid-July—this time out of time during which my pain has been manageable and there is ample room to read, reflect, write, and enjoy relationships. Life is good. No matter what happens with the transplant, I get the time I have right now.

While multiple myeloma is commonly abbreviated as "MM" in the medical literature, I laugh whenever I see that designation. Not because it evokes multi-colored chocolate pellets, but because "MM" conjures up Marilyn Monroe for me—just about as different an image from cancer as I could imagine. Life can be funny that way.
• • •This afternoon I get my dialysis port removed (although I never did dialysis, I had a catheter inserted into my jugular vein to facilitate blood draws and infusion therapy). That semi-permanent installation meant I was able to avoid all manner of needle insertions, but at an increased risk of infection. Now that my body's reaction to chemotherapy has stabilized, the scales have tipped the other way and my oncologist is more worried about infection than speedy infusions. 

As an additional plus, after the catheter is removed Susan and I won't have to be quite so careful in bed, worried about what equipment we might accidentally knock around while cuddling.

To celebrate, this evening we'll attend a reprised performance of 42nd Street, the Broadway musical. Tomorrow, Susan's birthday, we'll drive to Stone Lake WI and spend the day with good friends, Ray & Elsie Martin, helping them open up their cabin for the summer.

Life is good.

April: a Tough Month Along the North Shore

Mondays are my day for blood work, to make sure I'm on the right course with my chemotherapy.

After five hours of running the gauntlet of appointments, here's what's going on in my world:

o  The wind picked up last night and started blowing hard out of the Northeast. As the long axis of Lake Superior is angled from southwest to northeast at Duluth, that direction afforded the water all night to build up a head of steam as it crashed this morning into Duluth Harbor. Think 39-degree spray with waves in excess of six feet. Bracing. There is an ore ship hove to outside the harbor, unwilling to run the shipping canal under such raucous conditions.

Susan and I took an extra 30 minutes on the way home from the hospital and sat in a parking lot watching (feeling?) the waves crash ashore.

o  More good numbers from blood tests: my last light chain number had shrunk to 50, and all others were trending in the right direction as well. Thus, as hoped, my medical forecast is good news: steady as she goes into my July 12 date for a stem-cell transplant at the Mayo Clinic.

Weight, Weight, Don't Tell Me…
As a regular feature of my Monday check-ins, I get weighed. While you might think this is just SOP with doctor visits, it was a feature of concern in my health profile. I had lost about 50 pounds from the onset of my lower back pain in October 2014, and I was down to 150 pounds in early April—while I started this odyssey overweight, enough was enough. The doctors need my weight to stabilize as a precondition for the stem-cell transplant, and I didn't want to slide down any further either.

To be sure, I was interested in losing weight anyway. Now, battling cancer it seems an especially poor idea to be asking my beleaguered body to portage around extra poundage (particularly unproductive plasma cells), and I am motivated to find a new baseline. In this regard, April has been a great month. I've manged to keep my weight in the 150-56 lb range all month. Yippee. (And if I can keep it there the rest of my life, I'm happy with that.)

To get there I made a few subtle yet significant lifestyle adjustments:
—I've cut back significantly on between meal snacking.
—I try to not skip any meals, though I'll go light on lunch if anything.
—I satisfy myself with single servings and resist taking seconds.
—With the modest exception of pushing myself somewhat to eat something at every meal, I generally listen to my body and don't eat a thing if I'm not hungry or not inspired by the food.

In executing this plan it has helped enormously that Susan is a great cook. On my journey toward achieving a resemblance of domestic partnership I have a long way to go before I'm, pardon the expression, carrying my weight in the house, but Susan has been patient and we're both excited by my continued recovery from my February as a poster child for basket cases. Now that I've mostly got personal care needs under personal control, engaging on the domestic front is next up.

In the last fortnight I've taken over full responsibility for seeing that all of my pills and supplements make it to my mouth in a timely manner, and this morning I agreed to take over as chief coffeemaker. Can dicing onions be for behind?

o  As you'd expect, Dr Alakied was happy to see my numbers, and we enjoyed an easy flowing connection today. As it turned out, he had been having a not-so-easy week, where he had to tell patients bad news more often than good, and he shared with us that that's the hardest part of the job—when he's done his best, it hasn't worked, and he has to tell the patients that it's the end of the line what help they can get from medical intervention. It sucks.

It helps him a lot to have patients like me, who have a positive attitude and are succeeding beyond expectations in response to the treatments he recommends. Like a lot of us, it's hard to sustain a positive disposition when you're not seeing enough bounce from your efforts. Thus, my good news helped counterbalance an otherwise tough week.

It was highly satisfying to me to know that at least in a small way I was able to give back to Dr Alakied after he's given so much to me. A tender quid pro quo.

As a bonus, Dr Alakied took the time to explain in greater detail how my form of myeloma is different from more prevalent kinds and why that necessitates paying attention to different markers and recommending a protocol that's tailored to my specific case. As Susan's employment history included a stint as a research lab assistant at the University of Minnesota, she had a working understanding of some of the biochemistry, and it was a fascinating tutorial, complete with graphics.

o  Though April is appearing to be the lost month for spring weather along the North Shore (much as February was my lost month for cognitive engagement), we may be able to catch something nice right at the tail end. It turns out that this Saturday will be Susan's birthday and we're hoping to celebrate by joining friends Ray Martin and Elsie Myers as they open their cabin near Stone Lake for the summer.
When we get there Saturday morning we'll see whether the timing was prescient or wistful thinking.

(And if you think the local residents have been long suffering, the Minnesota Wild and Twins haven't had such a hot month either.)

Of course, even if April holds out until the bitter end, May is not far ahead and I expect a big boost when we flip the calendar on Sunday.

Reservations in Rochester

This week I got the call I wanted from the Mayo Clinic. They will begin my stem cell transplant procedure July 12. Yeehah! Here we go.

By implication this means the doctors are satisfied that my cancer is responsive to the chemotherapy, something I had to establish before they'd proceed, and that the protocol for the next two-and-a-half months is expected to be a continuation of the chemotherapy I'm already taking (and which I know I can tolerate well enough), aimed at gradually increasing my strength and recovery from the mess they found me in Jan 31 when I finally stumbled into the ER at St Luke's Hospital in Duluth.

Looking ahead, here's the front end of what will happen in Rochester. The first week is highly scripted. After that the schedule is more flexible, depending mainly on how I respond.

July 12-14                      Final testing begins.

Afternoon July 14          Meet with Dr Buadi (who oversees all stem cell transplants at Mayo). I need a green light from him after he digests all the test results. While we're expecting no surprises here, who am I to rule out surprises after all that's befallen me the past year?

Evening July 14             They'll start giving me injections to induce my bone marrow to make my stem cells available for collection.

July 18                           Begin harvesting my stem cells. This will proceed until they have more than twice what they think they need.

July 22 (?)                     Once they have the stem cells in hand, they'll give me an injection to kill off everything in my bone marrow.

July 24 (?)                     Two days later they'll reintroduce my healthy stem cells to start repopulating my bone marrow. The rest of my time in Rochester (perhaps six weeks in all) will be devoted to healing under close medical supervision, hoping that a robust response from my stem cells will dominate, placing the cancer in remission.

Mayo's has enough experience with transplants for people with my cancer and the volume is large enough that I'll be able to stay at Transplant House, a private facility in town (about a mile from the clinic) that is wholly geared to support people going through what I'll be going through. They have two large buildings conveniently located in Rochester (with daily shuttle service to the clinic) each of which houses abut 30 people. Each room has two beds (one for the patient and another for the primary caregiver) and a private bathroom. Kitchen facilities are open to all in the house with private storage space in the refrigerator and cupboards for each patient. Amazingly, this is available for $30/night.

I figure it will be a piece of cake adjusting to the housing after all my years in an income-sharing community. In fact, for me, being bivouacked temporarily at Transplant House will mostly represent an upgrade in living space. It will seem spacious. What do I need, after all, beyond a caring companion, a bed, a bathroom, a comfortable chair, a table, and an electrical outlet with a wifi connection?

Among other things, that means I won't miss spring in Duluth, which can be a tricky sighting.
No only am I a patient these days, but I'm discovering that being a Duluthian entails patience. Every day I look at the Minneapolis Tribune and peruse the weather maps. For most of April northern MN has stood out as the font of blue from which all other cold weather emanates in the continental US. It's impressive. And another week goes by without daffodils or lilacs.

I was driving to a rummage sale this morning when a person in the car casually reported that her husband was going to miss the sale because he needed to help out with the family maple syrup harvest. It's the second half of April for Chrissakes! Talk about a time warp. Sandhill would have wrapped up sugaring two months ago.

That said, the delay does not mean I've missed anything. Since I won't be going to Mayo's until July, I'm confident that I won't miss any spring flowers. Of course the upside of the delay is that the mosquitoes have not yet appeared either, which, up to a point, is a trade I'm willing to make. I give enough blood at the hospital; there's no need to give in the backyard as well.

Nutritional Leavening

I had a delightful hour on the phone this morning, catching up with an old friend who has done a lot nutritional training and research in recent years and had a lot to share with me about how nutrition may play a significant role in enhancing my chances to enjoy a happy ending in my battle with multiple myeloma (MM)

It's just another way in which I have landed well after getting buffeted about by the health gods. While no one wishes to contract cancer, all experiences are not created equal and I'd be an ingrate to not see the amazing extent of my good fortunate in the face of my life-threatening illness. In no particular order, let me count the ways:

o  I discovered the cancer in Duluth MN, which just happened to have a crackerjack young oncology team operating out of the local hospital who were up to speed on the latest in treating MM. They recognized what I had right away and got to work immediately.

o  The oncologists have good professional ties with Mayo Clinic (located in Rochester MN, abut 3.5 hours away by car) and were able to get me accepted there as a candidate for a stem-cell transplant. This is highly fortunate in that the Mayo Clinic is one of the leading places in the country for performing this cutting edge protocol for containing MM.

o  I finally broke down and went to the hospital (where the cancer has uncovered) while I was with my new partner, Susan Anderson. Though I had been intending to see doctors when I returned to my home in North Carolina, I didn't make it that far. I was at the tail end of a road trip that had started Nov 13 and thought I was only visiting Susan briefly as a final holiday stopover. However, I had anomalous back pain that was getting steadily worse and never got well enough to leave Duluth.

That meant that, unintentionally, I was with Susan when the bad news was discovered and there is no single thing that has been more valuable to me the last three months of riding the cancer whirlwind than having Susan steadfastly by my side. I have no idea whatsoever how anyone could manage the barrage of information and decisions I was facing without the kind of support that a dedicated partner can provide. I have been highly fortunate.

In fact, things have gone so well with Susan that I have now permanently moved to Duluth so that we can be together regularly instead of occasionally.

o  For most of the last four decades I have lived in an intentional community (Sandhill Farm) that grows 80% of its own organic foods. I enjoyed a diet that was low in animal protein, high in fresh vegetables, and as devoid of inorganic foodstuffs as we could manage. That's an excellent foundation from which to tackle cancer.

o  While my kidneys have been seriously compromised and the cancer is taking over my bone marrow, my health cupboard is not bare. In addition to whatever benefits accrue to me by virtue of my good eating habits (mentioned in the previous bullet point), I have a sound heart, good lungs, no history of major health problems, and all my factory installed teeth. So while my reserves are being called upon in this battle, it's noteworthy that I have reserves.

o  I generally enjoy good balance and have (knock on wood) not fallen once since the cancer was found. This is especially helpful in that a side effect of MM (at least in my case) is that I have been suffering calcium leaching from my skeleton which renders my bones more brittle, and therefore susceptible to breakage. Thus, falling is an especially bad idea right now and good balance has helped keep me upright at all the right times.

o  I have enjoyed an incredible outpouring of support from friends and family. In addition to an avalanche of cards, letters, emails, and phone calls, I've even been graced by a handful of personal visits—all of which have been calculated to buoy my spirits at a time when it was really needed. Wow.

o  Regardless of the ultimate outcome of my dance with MM (who knows how close death is?) I am currently enjoying a time of high lucidity and recovered energy and focus that allows me to reflect on what's happening, to wrap up loose ends that would be impolite to leave to others if things suddenly take a turn for the worse (no matter what, I'm still going to die eventually and all those odd and ends were going to need attention at some point), to reorient my priorities to emphasize close relationships more and a nose-to-the grindstone work pace less, and to be more in the present and more accepting (the flip side of which is judgmental and directive).

o  As a process consultant and professional facilitator I am frequently asked to bridge between parties who struggle to hear each other accurately or to put an innocuous spin on statements that diverge from the recipient's thinking. As you might imagine it's highly beneficial that I have a wealth of personal experience to draw on when attempting such bridge building and it occurs to me that I can now add to my repertoire what it's like to face death in the form of a life-threatening illness.

If I am able to return to active service as a process professional—which I have every intention of doing—this will be one more significant way in which it should be easier for me to hold others in distress who are questioning whether anyone else in he room can understand what they're going through.
o  I had process work commitments lined up that I would have had to cancel but I had already identified competent partners that I could hand the work off to. The clients still got served in a timely way, and my partners got extra exposure and income. 

o  I have money in the bank. While it's not yet clear if I'll have the dollars needed to handle all of the expenses that will ultimately fall to me, I might. Because this didn't befall me until I was 66, I am covered by Medicare and have a decent supplemental program to boot. That means that the vast majority of my expenses will be covered no matter what, but my treatment is not cheap and insurance will not cover everything. In getting sick I face a double whammy: the income ceases (my work life has been suspended to attend to the urgency of my health needs) at the same time that my expenses soar. While this is obviously not a sustainable pattern, I may be able to weather the storm without encumbering myself with crippling debt. I have a chance.

o  In addition to friends who are there for me at the heart level, holding me in the light, some of my friends—like the one I started this blog talking about—are information resources on the road to wellness. 

During this morning's phone call my friend introduced to her research on inflammatory foods: the importance of balancing Omega-3 intake with that of Omega-6, the evils of sugar (now there's a shocker), and being vigilant about pesticide residue on store-bought foods—regardless of whether or not it's organic.

As she suspected, my oncologists were not trained in nutrition. While they are not antithetical to it or hostile, neither are they focused on that approach and my friend was essentially offering to stick her thumb in that dike, or at least train me on where to stick my thumb. Fortunately, information about nutritional sensitivity is not all together new to me and I am not having an inflammatory reaction to her suggestions. Whew.

What's more, the call today comes in addition to an offer I received from another good friend a couple weeks back to help with a raw juice diet aimed in the same direction—better health through careful attention to nutrition and minimally processed food. What with all the visitors I've had lately I haven't yet had time to secure the juicer and get set up. With offers like this can the flow be far behind? Yeehah!

My cup of blessings overfloweth.

Getting Less Conflicted About Conflict

In the last week, a colleague sent me the link for a TEDx talk entitled: Conflict: Use it, Don't Defuse It. The two presenters, CrisMarie Campbell and Susan Clarke, are professional facilitators and they do a good job of laying out their main premise: that conflict is inherently neither good nor bad, yet most people (and most groups) avoid it (or try to contain it) to their detriment.

They claim—and I agree—that conflict is a source of energy and information, and if you can learn to approach it with vulnerability and curiosity you can get amazing results. In the video they share some powerful stories about their personal and professional lives where these lessons were brought home to them.

Unfortunately, Cris & Susan don't take it quite far enough. While making a case for the benefit to be derived from stepping away from defensiveness and combativeness, they do not make clear how someone can make that choice—especially in the heat of the moment.

Over my years as a process consultant and facilitator, I've learned that the point of entrée is working with the belligerents emotionally, where you're able to bring to the surface an accurate summary of what each player is feeling and what those feelings mean. It is crucial that this be accomplished with minimal judgment and maximal empathy, so that the person feels heard and understood (note that I didn't say that they feel agreed with, which may or may not happen).

Often, as the facilitator, I will demonstrate what I'm looking for before asking the other conflicted party to take a turn, simply because this request may be too difficult until they, themselves, have been heard. While it's important that the hearing and reaching out ultimately happen across the lines of the conflict, it is often useful for the facilitator to prime the pump—after which they gracefully exit the dynamic, leaving the belligerents to proceed on their own.

The key here is whether authentic hearing and sharing are happening. If so, the facilitator can step back. If not, then the facilitator steps in.

While conflict comes in all shapes and sizes, the most interesting forms (read volatile and intractable) involve at least one party being in active non-trivial distress. As such, once you're clear that there is a significant emotional component in play, then I think it's helpful to keep the focus on the feelings until they have been adequately identified and understood. This expressly means setting aside content (the action or behavior that triggered the conflict) until that's been accomplished.

To be sure, people will tend to squirm when you do this (because arguing over content is more familiar and is deemed safer), but it can be done. If you don't, then the unresolved tension tends to distort the information and cripples the problem solving. In short, attempts at problem solving without acknowledging feelings just don't work. Somehow, a bridge needs to be built between two conflicted people (it may be more than two, but any conflict can be broken down into a collection of pairs) or you won't get any constructive traffic between them. Further, it has been my experience that that bridge needs to have emotional girders or it will be brittle and insufficiently resilient.

While it's possible for the belligerents to have done sufficient personal work to be able to understand this dynamic and to unilaterally step back from the fight and reorient with vulnerability and curiosity (as Cris & Susan advocate), don't count on it. It takes an exceptional person to pause mid-salvo, lay down their ammunition, and ask their upset counterpart for more information. I've seen it happen, but not very often.

Better, I think, is developing a group agreement (and the group's capacity) about how you'd like to proceed and then authorizing the group's facilitators to step in and guide the process, reminding people firmly, but gently how they intend to act when conflict surfaces.

I realize that I'm asking a lot. For the most part, facilitators are expected to manage the content of meetings, making sure that the group stays on topic, listens well, and moves productively toward resolution of group issues. By adding responsibilities directly related to conflict, I am significantly expanding what's expected of facilitators—I am asking them to manage energy as well as content, and to work with people emotionally as well as rationally. This is a big jump and won't land well for everyone. Even if you like my thinking about conflict, you need to seriously consider whether you have facilitators who can answer the bell (or be trained to).

When I'm 64

Back in 2013, I took advantage of my 64th birthday to compose a blog about where I was in life, using the lyrics of the Beatles' classic "When I'm 64" as prompts. It was full of whimsy and fun. 

Well, here I am 30 months later and I'll be darned if I don't have an occasion to dust off that title and use it again...

As you know if you've been following this blog and my cancer saga, I have my blood tested every week. It's part of my chemotherapy regimen, helping my oncology team track my progress in battling multiple myeloma. In particular, I was on the edge of renal failure when the cancer was discovered at the tail end of January, and my #1 treatment priority has been reversing the kidney damage to avoid dialysis or a kidney transplant.

In my instance, the doctors are relying on a particular marker called immunoglobulin light chains. When the cancer was uncovered my light chain number was something in the vicinity of 1800 and they wanted it under 100. Gulp.

Fortunately, my body responded pretty well to the chemotherapy and we were able to drive the light chain number down to 66 after about six weeks of treatment. That said, I had a hiccup at the end of March, when my light chain number climbed back to 239—which development had my oncologist's immediate attention. 

In fact, this was considered a serious enough slippage that my doctor was ready to switch protocols, calling out heavier duty chemo guns in order to drive the light chains back down. Ugh. Thus, just 10 days ago I went into the hospital for my regular Monday morning blood draw, prepared to be admitted to the hospital for five days of amped up chemo. At the last moment, however, my doctor rescinded that order because my light chain numbers had dropped back to 111. Whew. Based on that reversal, he wanted to give the ongoing (less heavy duty) chemo protocol more time to get the job done. Maybe there was a delayed reaction and he knew it would be easier on my body if we could contain the cancer (and the light chains) using less poison rather than more.

Naturally, this reprieve was fine by me. It bought me a week of steady-as-she-goes, which Susan and I enjoyed thoroughly. Of course, there is a new blood draw every Monday, so all eyes were on the light chains ha emerged from the blood sample taken April 11, to see if the wind was still blowing in the same direction. Imagine how big my smile was when the nurse called Tuesday afternoon and reported that the light chain were now down to 64.

Not only was that the best news I could imagine getting, but it magically provided a perfect entrée to today's blog. Sometimes everything lines up just the way you'd like.

Does this mean there will be no more glitches en route to my getting stronger in preparation for the stem-cell transplant procedure (probably in July)? Alas, no. Cancer doesn't come with guarantees. There may be more potholes ahead on the road to recovery and I don't have a map that reveals their location. Yet it's good news nonetheless and has understandably leavened the mood for Ceilee and Annie's visit this week. 

I now have a green light to attempt some judicious reemergence as a process consultant prior to the stem-cell transplant, and I am working with Alice Alexander and the Coho Association of the US to have my debut be May 19 in Salt Lake City, when I conduct a half-day pre-conference workshop on how to facilitate conversations about aging in community. The main event, Aging Better Together, will be May 20-21 and there are still openings to join us if this topic grabs you and there's room on your dance card.

Maybe I'll see you there.

Old Home Week

Starting this evening I'll be visited by my son, Ceilee. While that would be exciting and newsworthy all by itself, it gets better. My pleasure will be doubled when his mother (my close friend Annie) will arrive for an overlapping visit tomorrow. Ceilee's coming from Los Angeles and Annie from Floyd VA, and they'll be with Susan and me for five days or so. We're all looking forward to the time together, as my old home intersects with my new one.

Even as I continue the joyful work of establishing Duluth as my new home (having happily thrown in my latter year allotment with Susan) one of the joys of my cancer diagnosis is the bountiful opportunities I've had to make connections with friends and family all over. 

It's interesting when you think about it. After all, no one is getting out of this life alive, and no one knows exactly how much time they have (or more pertinently, how much quality time they have). That said, there is a marked tendency to live one's life as if it will go on forever and to not seriously plan for end of life. A consequence of following that course is that mortality can take you by surprise and you might miss the chance to say goodbye, to take some moments to slow down the music and appreciate what each relationship has meant to one another. 

Thus the cancer has helped sharpen my focus and that of those I know. Not being sure how much time I have, the dire diagnosis created a sense of urgency and people are reaching out now (letters, cards, emails, phone calls, and visits) in incredible numbers. It's been a terrific time for connections (and reconnections). I have received those blessings because I might die soon. As no one will demand their time back if I don't expire in the coming months, this is a pretty good deal.

Thankfully, I'm not contagious and the doctors have placed no dietary restrictions on me (in fact, fattening me up is one of their top priorities). I've been able to bounce back sufficiently from the initial rounds of chemotherapy to participate in most aspects of everyday life, all of which has helped to grease the skids if a dear one is inclined to visit. Susan and I even have a couple of spare bedrooms available at Chez Anderson, easing the logistics.

It's nearly impossible to know how much life I'll be able to fully enjoy going forward, but then, why spend time on that question? Instead, I'm looking at, "How do I want to use what I have, recognizing that there may be little left in my hourglass?"

In my case, this is a Susan and Laird question, not just a Laird question. Susan has been a rock of support for me these past three months and I've made a commitment to enjoy, celebrate, and appreciate with her what life remains to me. So far it has meant a lot of gin rummy and enjoying PBS broadcasts Sunday evenings, but we're also talking about traveling together. Thinking up joyous ways to be together is not difficult at all; the principal challenge is manifesting the time and stamina. We will take these final rapids together, for as long as the fast water stretches out in front of us and we can keep the canoe upright. We are far enough along in our journey that we no longer need a map—just follow the current. Yeehah!

Meanwhile, amazingly, I have been able to return to work on a limited basis. Yesterday I drilled down on the teaching themes for an advanced facilitation training. I made an initial pass at this two years ago. Yesterday morning I doubled my thinking. While there's no knowing whether I'll have the time and energy to deliver that training, I know that it's a natural progression of my body of work in the field of cooperative group dynamics, and would be the thing I'd most like to complete if I can get to it (because it has the greatest potential for doing good in the world).

Thus, I've been able to return to conduct meaningful work less than three months after the initial diagnosis and treatment, to make encouraging headway in containing the cancer, and to enjoy this incredible outpouring of love and support from friends and family. My cup runneth over. Yes, I have back pain everyday, and I've had to reconcile with the reality that I'll never skydive in Montana or windsurf the Columbia River, but every time I open my eyes in bed Susan is lying beside me and it's a pretty good life all things considered.

This week my work output is likely to decline as I focus on enjoying Ceilee and Annie. But isn't that exactly as it should be? There will be more laughing, more cooking, more drinking, and more story telling. I can hardly wait.

Beyond Cancer

I went into the hospital with chronic, debilitating back ache Jan 31 and promptly discovered that I have cancer: multiple myeloma. Not surprisingly, that has been the centerpiece of my reality ever since.

Now though, more than two months into chemotherapy, I'm starting to stabilize and am going through a relatively quiet phase of therapy, where I try to build strength in anticipation of a stem-cell transplant that I'm expecting to undergo this summer at the Mayo Clinic.

Though I was knocked flat on my keister by the initial barrage of medications, I've steadily been regaining functionality, stamina, and lucidity ever since, the upshot of which is that I'm able to tread water with email, and engage in life beyond cancer. For the first time in two months I want to write about something other than knocking on the door of my mortality.

As I sit with the increasing possibility that I'll be able to get my process oar back in the water, the obvious next question is what do I want to do with that? Where do I want to go? That question morphs easily into, "Where do I think I can have the most positive impact?" or "What can I bring to the table that isn't easily found elsewhere?" The truth is, I'm not sure. But I have ideas.

My best arena is cooperative groups—where the members have made a purposeful commitment to operate cooperatively (as opposed to competitively). That cuts down the field quit a bit. Even though interest in cooperative alternatives is rising, there are not that many groups that have taken the plunge, and fewer still that have actually thought through what it means to learn to respond to differences with curiosity rather than combativeness.

Over the past three decades I have concentrated my group work with intentional communities, both because it's more accurate to assume a core commitment to cooperation in that setting, and because living together requires that members deal with at least a baseline level of issues (cleanliness, child rearing, pets, ecological impact, and diet to name a few). To be sure, some intentional communities have proven to be sufficiently clever that they've been largely able to duck functioning cooperatively even when their noses have been rubbed in it, but there are also many who have taken the bit in their mouth and are purposefully trying to pull in rhythm.

Those last are my best clients. They know they're doing something radical, they know it isn't easy, and they're willing to ask for help.

Having said that, the world of intentional communities is relatively small and obscure. Yes, it's growing and its relevance to the wider culture is becoming more easily recognized all the time, yet many people simply dismiss lessons gleaned from community living as a sideshow oddity—it's too far beyond the pale to be applicable to mainstream issues (such as how to solve problems without resorting to threats of war).

I have tossed in this last parenthetical example as an incendiary. How could anyone not be interested in exploring and developing more effective, less belligerent ways to solve problems? And yet the golden nuggets painstakingly mined from cooperative living that bear on this challenge are blithely ignored almost everywhere I turn. It's discouraging.

Thus, one reason to pause before returning to work in the trenches of intentional community, is to weigh whether my efforts there will be seen and available to inspire others.

Going the other way, intentional communities are concentrated cooperative groups, rich in complexity and complications—just the kind of environment where learning can be sustained at an accelerated rate. It is also where I have my best connections and am most likely to find meaningful work quickly. While I know that the application of my work is far broader than the micro-world of intentional communities, I may have to leave it to others to make that case, narrowing my focus to identifying the lessons, rather than disseminating them.

It's an interesting fork in the road. In the end, it comes down, for me, to which path appears more attractive: would I rather do the field work (panning for the ore) or the promotion (packaging the refined products)? Put that way, I'll choose the field: working to identify and access cooperative options in a dynamic; learning better how to see competitive traps before we fall into them; increasing my capacity to work with the whole person—all of us, after all, are rational, emotional, intuitive, and kinesthetic beings all rolled into one.

Presented with all these delicious options, you can see why I'm in no hurry to depart this veil of tears.

A Double Snouter in Duluth

Yesterday I went into St Luke's Hospital for a blood test, a consult with my oncologist (Dr Alkaeid), and infusion therapy (part of my regular chemo-therapy regimen to combat my cancer: multiple myeloma). My doctor had given me the heads up last Wed that one of the key markers for how my body was responding to the chemo was headed in the wrong direction. 

He was sufficiently worried that he advocated a sharp change in my protocol: giving me a much stronger course of medicine, requiring five days in the hospital, starting Monday (yesterday). While this course would be a risk in and of itself (we're dealing with serious poisons here, after all), he felt it was justified based on my deteriorating light chain numbers (up from 66 to 239, where 100 is the boundary of what's considered acceptable, and high numbers are bad). I agreed with his recommendation, and Susan & I went to the hospital yesterday with our loins suitably girded: we expected this to be a critical test of my ability to contain the cancer, and were not at all sure how strong I was relative to what was going to asked of me.

Then things got better. 

In the five days between last Wed (when I got the bad news about the light chain numbers) and yesterday, there was time for another round of testing to be completed and the newest light chain numbers came in at a svelte 111. While still north of the all-important 100 marker, it was less than half of the previous test, and suddenly the sun came out from behind the clouds.

Alkaeid's main concern at this point is establishing clearly that the cancer is responsive to chemo-therapy, and it's essential in that regard that all markers of the cancer's progress are moving in the "right" direction as a result of the my undergoing the chemo protocol. Poised to pull the trigger on the more drastic, heavy-duty chemo regimen, he saw definite signs (albeit delayed a bit) of the cancer remission he wanted in the light chain numbers, and that switched his thinking about whether the heavy artillery was warranted.

The much lighter light chains numbers translates into reasonable hope that the current (less-draconian) chemo regimen is being effective, which we all prefer be the case. My body has already handled the current protocol fairly well (I can hardly tell you how much I was relieved and pleased when Alkaeid—someone not prone to blowing sunshine up patients' asses—admitted that I had surprised him with extent of my positive response so far) and I feel quite confident that I can stay the course with the current regimen and come out ready for the stem-cell transplant.

Having switched abruptly from good news to bad and back to good within the course of five days, Susan & I are just now coming out of the revolving door of our emotions, and are not sure what this all means relative to when the stem-cell transplant is likely to happen (are we back to July now?) or what wiggle room exists for doing some extracurricular activities between now and whenever the transplant is scheduled. 

These are somewhat minor details in that we'll do whatever the doctors recommend; it's just nice knowing what that is. I am at the cusp of being ready to do things away from home (I'm aiming to attend a performance of the Duluth Symphony this Saturday) and Susan and I are past ready to starting enjoying being together, not just surviving it.
• • •The semi-obscure title for today's blog has its roots in the dice game Pass the Pigs. It happened that my youngest sister, Alison, visited me Wed through Sunday of last week (more or less the entire stretch of living under the pall of the hospital watch and Alkaleid's dire diagnosis). We enjoyed a wonderful connection, full of stories, reflections, and connections. 

Among other things we played a few rounds of a Schaub family-favorite: Pass the Pigs. In our version we play with two pigs each (the "dice" are actually molded in the shape of pigs) and you score them based on how the pigs land. As long as you score positively, you can keep rolling. If you "pig out," achieved by having the two pigs landing flat and on opposite sides, then your cumulative score for that round is lost and you pass the pigs to the next roller. There are many ways to score and one of the more exotic is by having one of the pigs land upright, leaning on its snout (worth 10 points). Even more unlikely is having both pigs leaning on their snout, whence the term "double snouter." This is worth 40 points if your playing Pigs, and a world of relief of you're a cancer patient living on he edge of recovery and suddenly delivered great news.

You might wonder how things could have shifted so dramatically in such a short period of time. Part of this is a consequence of how Alkaeid has chosen to handle what he shares with patients. He believes in giving news straight and not sugar coating dangers. If there is a possible bad outcome he's going to let you know what it is. That's what happened last Wed. There had been a significant degradation in the light chain numbers and he was worried. Following that thread he felt a shift in protocol was justified, which he vetted with his counterpart at the Mayo Clinic before recommending.

The other side of that is that he was happy to walk us through his analysis of the better test results Monday. It tuned out that there was also a positive immunoglobulin test result that had gone undiscussed on Wed but corroborated the notion that the current chemo-therapy protocol may actually be working fine, if a bit delayed. This helped him reach the conclusion to take his foot off the gas and stay the course with the less aggressive treatment. Whew. Now I don't have my next date with him until April 25—a glorious three weeks of giving this treatment (which I already know I can handle well) more breathing room.

I tell you, there's never a dull moment around here.

Fortunes Reversed

Yesterday I got another chance at my prime lesson in battling cancer: letting go of the illusion of control.

No sooner had I established (at the encouragement of my oncologists) that I was meeting or exceeding all my markers for a good response to my initial rounds of chemo-therapy, then a blood draw Monday turned up an adverse number, triggering a sea change in how I was being assessed.

In particular, there was a rise in the amount of "light chain protein" in my blood (there's also a heavy chain protein, but it's the light ones that are used as a marker of my cancer's progression) and this is something that the doctors think is critical to keep at a minimum leading up to my having a stem-cell transplant.

While there's part of me that's amazed and shaken that a single test could be so destabilizing to my treatment plan, this has not eroded my fundamental faith in my doctors. We will be in this together, wherever it leads.

In any event, after first laying out the expectation that I'd be entering a relatively quiet maintenance phase of the chemo protocol from now until a July transplant at the Mayo Clinic,  all of that shifted yesterday. Determined to get back on top of the light chains, the doctors in both Duluth and Rochester have agreed that a more aggressive plan is in order that will entail the introduction of some additional new drugs.  

This new cocktail is potent enough that I'll be readmitted into the hospital for five days, starting Monday, followed by a crucial week of observations to see how I respond. The doctors were straight with me. This will be my most severe test yet, and there's no guarantee that I'll survive it. (Quite the change from the calm waters I had woken up to when the week began!)

Once again it's time to set aside all other concerns and opportunities to prepare myself to simply ride the waves of my treatment, doing all that I can to be my body's ally. It is not yet time to be planning presentations or to be crafting book outlines. First I have to get well.

While it has been a jolt to have my plans knocked down (I liked the picture of a predictable, playful spring) and to again be staring down the chaotic barrels of what my cancer hath wrought, there is also a part of me that is relieved to be facing the hard stuff sooner, with minimal delay. It was always coming, and it feels better to be turning toward the boogie man, rather than away. If the cancer is stronger than I, so be it. If I am stronger, let's find out now and move forward.

The Flight from Here to July

I'm sitting at the dining room table, listening to the outdoor background music: deep bellowing of horns from ship traffic in the harbor. The St Lawrence Seaway officially reopens for business yesterday, and here at the extreme corner of the system, they're not hiding their light under a bushel (much less their horns in a bell jar). There are one or two hefty ore boats freshly loaded with taconite outbound for steel mills somewhere in Ohio or Indiana, and away we go.

Just as the Seaway opens, Susan and I are at the cusp of segment two our four-stage journey through the gauntlet of cancer treatment. While I'd like to tell you that all will be smooth sailing, our journey comes with no such guarantee.

For a quick review of the bidding:

Segment 1
Discovery of the cancer, diagnosis, and initial treatment, to see if the bad signs can be turned around and if my body is sufficiently responsive to treatment (did we get there in time?). In my case this included collecting all the information of a complicated and aggressive cancer and its attendant side effects. While it's turned out to be a lot, my team of doctors felt we had good reasons to be hopeful of a positive response to immediate treatment and wasted no time in going there once they'd secured my approval.

To be clear, there was no certainty I'd come through this initial phase well, but I did. Without going into details, I've been able to turn around every single marker associated with the cancer, and it appears I have an excellent  chance of being able to come out of this with functioning kidneys (read no kidney transplant; no dialysis). My sense is that I was very close to not being able to come back from the kidney damage I had already suffered (about which I was unaware until I was hospitalized in late Jan and began looking under the hood), but it appears I've dodged that bullet (at least for now--my kidneys will be challenged again by the stem-cell transplant therapy in July).

So it's wonderful news to be in my position, having successfully ridden the storm-tossed seas of Segment 1, with all its uncertainties, and finding a stretch of calm water in front of me.

Segment 2
Relatively quickly, my oncology team agreed that my best long-term chance for turning the cancer around lay in a stem-cell transplant, where the healthy remnants of my bone marrow (ravaged by the cancer) could be salvaged and harvested from my system and then reintroduced to my bone marrow after wiping out the unproductive stew that was currently dominating my marrow (so that I can resume the efficient production of red cells, white cells, and lymphocytes—the things my bone marrow should be doing).

First though, I needed to stabilize and reverse the deterioration of my system, which included courting renal failure and heavy-duty calcium leaching from my skeleton. Having turned things around (as planned) it will still take a while strengthening everything for preparation for the stress of the stem-cell transplant itself (no point in undertaking the cure of it swamps the boat).

Thus, this is a purposeful pause between Segment 1 and Segment 3. While this is a relatively "quiet" time in the overall protocol, it's a needed step.

Segment 3
This is the stem-cell transplant itself and the immediate recovery afterwards. It should only take about a week to harvest the healthy stem cells, kill off what remains in my bone marrow, and reintroduce my stem cells. Thereafter it's a battle between my body, bolstered by the judicious application of myriad meds to reboot my system. It will basically be up to my body to handle the trauma of the transplant, to regenerate the stem cells, and to take advantage of the opportunity of a clean slate to push the cancer out of the way and proceed on a healthy path.

Segment 4 
The recovery from the transplant will happen by degrees and there is an important marker after 100 days, at which point I'll be thoroughly tested and evaluated for what we've achieved. It will be at this point (probably somewhere in October) where the oncology team will be able to offer a new prognosis about how much cancer-free time all this effort has earned me. I will be given no guarantees. I will simply have purchased a chance.

Based on what I learn at that stage, I can plan accordingly.
• • •In meeting with Dr. Alkaeid Monday (who's playing point person on my Duluth oncology team), we went over where we were and where we were headed relative to the recommendations from Mayo (secured last Thursday in my meeting with Dr Buadi).

First off, the doctors were in alignment about the treatments and their timing. Whew. They further agreed that my responses to Segment 1 were strong and positive, which was what I wanted to hear, and they gave me permission to resume any aspect of my life that I felt healthy enough to attempt between now and the July transplant. While no one's thinking about sky diving, I'm toying with a modest resumption of consulting and teaching.

This last has been a great buoy to my spirits as I can now indulge in some proactive thinking about life as a cancer survivor. While I have little clue about long-term possibilities, my life doesn't not have to be on hold as I go through the calmer waters of Segment 2.

I especially enjoyed a metaphor about the first three segments of my cancer protocol that Dr Alakeid passed along to me in the context of Monday's consult. He suggested that I think about it in terms of learning to fly. All parts of flying are not equally dangerous. In fact landings are the most dangerous, with the challenges there being the only times that are more stressful than take-offs. Actual in the air flying is rarely a problem. 

Mapping that onto my cancer protocol, he was pleased to report that I had successfully negotiated the take-off (Segment 1) and was in the air! Not everyone makes it this far and he was quite happy with my progress. Now we're entering the relatively safer in-flight portion of the protocol, putting ourselves into the best possible position for the most critical step: landing (represented by Segment 3, the stem-cell transplant).

So hurray for where we are Serious works remains yet my current position is as good as I could hope for. I aim to make the most of this pause to have a terrific landing (and enjoy the flying time between now and then). As far as I know, everyone is down with that.

Good News from Mayo

Thursday I was accepted for stem-cell transplant therapy at the Mayo Clinic, as a protocol for addressing and containing multiple myeloma. It was what I wanted, and it's a big deal that I got it. Now the challenge is making the most of the opportunity.

Here is what lays ahead:

o  Between now and when the transplant is performed (projected to be mid-July, but that's a soft date)), I'll likely go through 4-6 cycles of chemo-therapy, all geared toward boosting my kidney functions and eliminaing calclium leaching from my bones. While I've made significant progress on all of these markers across the board, I can do better and the doctors, understandably, want to make the best possible use of the transplant.

o  Once we get the OK for the transplant (because the markers are good), we'll temporarily relocate to Rochester for about 6-8 weeks, where the finer detailed road map looks like this:

—Evaluate
Mayo will conduct their own blood tests, to make sure they align with the numbers coming back from test results in Duluth. According to what we were told yesterday, there are few surprises at this stage and 90% of the time the evaluation phase results in a green light.

—Harvest
Next step is collecting my stem cells. They will inject me with a shot every day that will cause my bone marrow to cough up its stem cells. The doctors will start collecting the stem cells five days later and continue that process until they have more than enough to do two transplants. Excess cells can be frozen for long-term storage and viability.

—Sterilize
Once they have enough stem cells, they give me a single shot of something to kill off everything remaining in my bone marrow (the good and the bad indiscriminately). As you can imagine, we're talking about heavy-duty poison here and this begins a stretch where I might struggle again with the chemo. Let's say sterilization takes place on Day 1.

—Reintroduce my own cells
Two days later the doctors will reintroduce my own stem cells to my bone marrow, on Day 3.

—Recolonization
For the following three weeks my job is recovery. By Day 6-7 my blood counts will be low and I'll lose my hair. There won't be many good days. I'll be taking heavy-duty chemo and just trying to ride the choppy waves without swamping my boat. This projects to be the darkest time.. Somewhere around Day 14 my blood counts should start to recover. From here on recovery tends to accelerate. Most transplant recipients are sufficiently far along that they no longer need close monitoring and can return home in the range of Days 18-21.
 
At this point the key question is how much the cancer has been brought under control: it could be anything from hardly any to full remission. While the transplant treatment is not dangerous per se (that is, few die of it directly), there is no guarantee that this will contain the cancer—which is the point of all this.
Huddling with my doctors after the transplant (perhaps 100 days afterwards) we should finally be able to make a reasonable assessment of my post-transplant prognosis—how much I can look forward to time with little or no pain, which opens the door for Susan and me to think about how to use that precious commodity. Until then it will be difficult to suss out exactly where I stand, yet that doesn't mean we have to stand on the sidelines until October.

No Trips Abroad
Though from this point on most of the chemo will be conducted as outpatient therapy, I will still need to remain near enough to Rochester and Duluth to have minimal complications with scheduling. That is, I'll need to be tethered to my Minnesota treatment centers. While brief forays out-of-state might be possible on rest weeks (between active cycles of chemo-therapy) they will be limited.

One Thing at a Time
Job One from now until transplant is my getting stronger (turning around weight loss, eliminating dependency on walkers and wheel chairs, managing daily needs and hygiene with minimal dependency on Susan, and continuing to push my kidney functions in the right direction). This will directly translate into my being to make the best use of the transplant.

Resuming "Normal" Activities
I asked my doctor when I might prudently be able to return to some of my work (as a process consultant or community networker), and got an interesting response: I can resume any time it makes sense. It's simply a question of what I have the capacity and motivation for taking on. This was something of a surprise (I had been thinking that career resumption, if at all, might happen only after the transplant and we got to see what that protocol had accomplished.)
Among other things, this significantly changes how Susan and I will be viewing the months ahead in Duluth. If we aren't looking at the transplant happening sooner than July, then I have over three months to get stronger, to enhance my capacity to handle the chemo well, and start crafting the life that Susan and I want our partnership to be. I'm limited only by my energy and my body response—rather than by the calendar (I have to wait until July) or by the stigma of cancer. Though I'm still coping with back pain on a daily basis, I'm jazzed to begin this work.

We do not have to put off conversations about what we want. We can start now. I especially like how this allows us to start moving toward a rebalancing of focus after two months that have been intensely unbalanced, coping with Laird's emerging health crisis. Now we can shift to Laird & Susan's opportunities.

Sounds better, doesn't it?

Mushing South

We've been blessed with a mild winter in Duluth (which is assessed mainly along the lines of the Ice Index: the less ice I have to navigate between house and car, the milder the winter). Given my compromised health (multiple myeloma or MM) necessitating many visits to and from doctors  for treatment and therapy, that's been fortunate.

Wednesday Susan and I traveled by car to Rochester and an important date with specialists at the Mayo Clinic to see if I'm a suitable candidate for stem-cell transplant therapy, which is one of the most promising new protocols for treating MM. Our date was at 8 am Thursday which mean arriving on location no later than Wed evening.

Wouldn't you know: even though we're in the post-equinox, tail-end-of-the-dog days of March, the US Weather Service predicts that we'll sashay through 3-5 of wet, glumpy snow to get there. I reckon winter couldn't resist taking at least one more bite of my apple.

On the other hand, Susan drives a Subaru—the official car of the North—and 3-5 inches of crystalline sunshine should be no match for all-wheel-drive. We just left a little earlier.

While Mayo has let us know that they'll orchestrate all my appointments in Rochester, and my oncology team has made sure that all the test results and their diagnostic thinking has been duly passed along, Susan and I are driving south with just about as much surety as the Fellowship of the Ring headed for Mordor—after sifting through all the choices, what remains is the best option, regardless of its improbability. Like the Fellowship (an appellation I have a strong affinity with) I head south on the wings of trust and the loving support of many. 

Beyond what room I'll be in for my first appointment and the name of the doctor that I'll be meeting, tomorrow is another exercise in letting go. I don't know what questions I'll be asked, or even the basis for Mayo's decision about whether to accept me for stem-cell transplant therapy. I don't know how long it will take them to make a decision, or my options if I get turned down. In short, there are many unknowns and I head south thankful that I am not making this journey alone, that Susan will be participating with me as a team.

We arrived in Rochester and got settled in around 6 pm, right before the spring snow started arriving in earnest. When we woke up this morning, there were 10 inches of fresh snow on the ground. Luckily, we were able to make it to all of our appointments without leaving the block of buildings that comprise the essence of the Mayo Clinic, and thus were able to avoid any nasty weather encounters. Whew.

I felt drained from the ride down and went to bed early. What's the best way to get psychically ready for the unknown? Not sure, I had a small dinner and cashed in. I figure that laagering my energy for today was the right call. No dancing; no blackout bingo.

So here were are, on the cusp of finding out what Mayo is willing to support in my effort to place my cancer into remission. I have only the vaguest sense of probabilities, but I know what my doctors have faith in, and I have faith in my doctors. While there does not seem to be a serious risk to my mortality in attempting stem-cell transplant therapy, neither is there any guarantee of a positive bounce. We'll have to do it and find out what we get. It's part of the adventure.

Redefining Home

As planned, Saturday was discharge day from Ecumen Lakeshore. Susan and I are happily sleeping at the same address now, in her house near Chester Park.

This time around is a night and day difference from the last stretch (Feb 19-26). I can negotiate trips to the bathroom solo; I can go up and down stairs without crashing my limited energy budget; I can sit upright for several hours at a stretch without any back pain. Today I walked to the car to keep a dentist appointment and didn't use the walker at all. Mostly though we're enjoying the novelty of being together, my diminished pain, and the sharp decline in the need to be chauffeured to and from doctor appointments. 

This respite will only last a few days and then it's down to Rochester for our big date at the Mayo Clinic Thursday.

During this at-home interlude, I'm particularly interested in keeping my eyes open for any emerging markers, pointing the way to what my post-Mayo rhythms may look like. Given my strong attraction to writing, I've been thinking about how to set up a table and chair so that I can make the most out of each session. I won't need much, just sturdy furniture and an out-of-the-way location with adequate light and power.

The goal is to reduce my dependency on Susan's logistical support to as little as possible, so that our time together highlights the preciousness of our connection; not the precariousness of my health. While I still have an unpredictable relationship to secondary torso pain (think ribs, mainly), I'm gradually gaining better control of my breathing and am making steady progress getting in and out of bed without sharp pains.

To some extent, Susan and I sit on the edge of a precipice, waiting out the two days remaining before our date at Mayo. My prospects for successfully managing the cancer are hinged directly on Mayo's response yet I have only a vague idea what's likely. Essentially, I've cast my lot with my oncology team's assessment and recommendation. Happily, my sense is that we're all singing from the same hymnal and thus my presentation should come across (on the doctor-doctor level) as cohesive and sensible, well-backed by test results that have positioned me as a good candidate for stem-cell transplant. We'll see if the good doctors at Mayo agree with that assessment.

While there remain a large number of variables in how this will play out, the Mayo decision looms large. If accepted for their protocol, I expect the treatment to entail heavier-duty chemo-therapy than I have undergone to date, relying on the doctors and support staff at Mayo to manage the high-risk procedure of sterilizing all my bone marrow and then repopulating it with my own, healthy stem cells.

All of the little things that Susan and I are tweaking at 1014 Chester Park these few days are just so much putzing with furniture while we wait to hear for whom the large bell tolls.

To be sure, there is connection and sweetness to these light days clustered around equinox, and I am pleased that the clock beats no faster than it does. The doom of Mayo will arrive soon enough and will be no less potent for having incubated a few extra days.

The key piece is that Mayo is something I will experience with Susan; not alone. That is my lode star.

Joie de Vivre and Cancer

I'm enjoying a quiet, no-doctor-appointment Friday on my last day at the Ecumen Lakeshore Rehabilitation Center in Duluth. I've basically reached my targets for turning around my kidney functions (since being initially hospitalized Jan 31) and done all that I can to make myself a suitable candidate for stem-cell transplant after having been diagnosed with multiple myeloma).

I have an important date next Thursday at the Mayo Clinic to see if I'm acceptable for the next step. Meanwhile, I'm at a pause point, with an opportunity to reflect. My pain levels have ebbed (at least temporarily) and I've been steadily increasingly my flexibility and mobility through physical therapy.

What's on top today is my relationship to the unknown. While I've written previously about how much my life spiraled into chaos after my marriage dissolved 13 months ago—just at a time when all the major elements of my life seemed familiar, welcome, settled, and productive. Rising out of the fog of chemo-therapy I see now that all has been stripped away in the tempest of my 66th year, not just my marriage, my home, and my community (which seemed like plenty at the time).

Even as I started over the summer to reinvent myself with a new base in North Carolina (with María Stawsky and Joe Cole), and was blessed to uncover a precious, though long-dormant intimacy with Susan Anderson, the cancer was already at work in my bone marrow, moving me inexorably along the path toward my current health crisis. I had naively thought that my work life (as a cooperative group consultant) was going to be spared the turmoil of the past 18 months but here I am with all work cancelled or at least on hold at least into May.

I caught myself this morning looking ahead, projecting a return (at least on some minimal level) to the work I know and love, yet am also aware of how that can be a trap—of how my holding onto that dream of recovery may be Laird's clever way to avoid the work of fully examining the ways I've become dependent on my accomplishments to define my identity. 

The universe has gone to considerable effort to shake my life up; will I be strong enough to continue to sit in the uncertainty of love as the petals of the mystery unfold in their own rhythm? Can I resist forcing a favorable interpretation on events? Will I be able to find and sustain the fortitude needed to allow life to come to me—refusing the wheel?

Of particular interest to me right now is this wild and improbable juxtaposition: on the one hand my world has been stripped down to the elements of relationship and spirit—that which remains after the flood of divorce and fire of cancer have scoured my soul. On the other hand, I have been singularly blessed to have found Susan and yet another chance at centering my life in love—even amidst the ashes. How do these two realities blend?

As I sit with this, it has bubbled up for me that the key piece remains Susan and what we create together—not the extent to which I am able to revive my beloved consulting career. Having been allowed a peek at the unknown, my prime challenge is to not be so hasty in seeking resolution. 

Going forward, Susan and I will make choices based on my ongoing response to cancer therapy that celebrate intimacy and joie de vivre—not the chance to author one more report.

Out By Friday; Hold the Mayo

My stay at Ecumen Lakeshore rehabilitation facility appears to be drawing to an accelerated close—perhaps as soon as Friday. My health insurance company (Aetna) has been in consultation with Ecumen and they've determined that I've now received a reasonable amount of benefit from my stay here and it's time on move on—which means moving in with Susan as my cancer recovery focus continues.

To be sure, I'm not out of the woods (in fact, I'll be moving right next to the woods, as Susan's house is located across the street from Chester Park and its 2.5 miles of hiking trails). I still have major cancer treatments ahead. The shift in venues simply means that my level of support no longer requires such intensive care. I have been able to make use of the regular physical and occupational therapy being offered to now be able to manage the demands of daily living (think basic grooming and hygiene) without imposing unduly on Susan once it's just the two of us at 1014 Chester Park Dr. (I'm not expecting Lucie, the seven-year-old black lab mix to be much help one way or the other.) Plus, I was able to make good use of being bivouacked at Ecumen to avoid negotiating stairs for all of my outpatient treatments at St. Luke's the past three weeks.

Barring some unforeseen curve ball arriving the next couple days, today's news means that Susan and I will be traveling the four+ hours to Rochester from her house next Wed, instead of from Ecumen Lakeshore. My body has been responding well to the various treatments aimed at enhancing my kidney functions and I expect to present as an excellent candidate for stem-cell transplant treatment when I have my Mayo consult a week from tomorrow. We'll see.

If accepted by Mayo, I'm still facing a long stretch of targeted treatment and recovery, the main challenge of which is harvesting my healthy stem cells, killing off everything in my bone marrow and then repopulating my bone marrow with my own stem cells. Obviously, it is essential to maintain a highly sterile environment through this procedure and I'll be imbibing some heavy duty chemicals throughout. 

I'll again be entering uncharted waters and I'm expecting to enter a period lasting several weeks where I'll simply be holding on, taking deep bites of the fruit of the unknown, letting go of the concept of control or being the master of my fate. I will simply be and see how well that goes. Scary, but I see no reasonable alternative to reentering those rapids. I will again be putting my complete faith in the hands of my optimism and in the strength of the support and love that surrounds me. Either that will be enough, or it won't.

Assuming I'm approved to proceed at Mayo's and that I respond well to the treatment (two large ifs) I expect the heavy lifting to be accomplished by mid-May. Although I'll undoubtedly start by being hospitalized at or near Mayo's, there will come a time (parallel to the limbo between St Luke's and Ecumen Lakeshore that I'm in now) when I will no longer need such intensive watching and I can go home, visiting Mayo's periodically for outpatient treatment and testing.

At some yet-to-be-specified point after that, there will be an assessment of where we're at and the extent to which I can resume "normal" activities. So there's still a lot of fog to cut through, yet there's a path.

From now going forward, Susan and I are lining up visits from Susan's daughter, Britta; my sister (Alison), Ceilee and Ann Shrader; Stan from Sandhill (along with long-time ex-member Julia Reed); followed by a visit from María Stawsky from Chapel Hill—all of which will go a long way toward keeping my psychic tanks topped off and my life force burning brightly. Meaningful relationships and giving myself to love will see me through.

My Cancer Odyssey Continues

I has now been about a month since my previous blog entry—by far the longest I've ever gone between postings since I launched this site in December 2007.

I decided that this pause was necessary in order to focus all my energy on my treating a diagnosis of multiple myeloma, a cancer related to my body producing too many plasma cells. I have it in an aggressive form and—with the able assistance of a young and crackerjack team of oncologists in Duluth MN—am treating this cancer aggressively in turn. We'll see who prevails.

Happily, I now feel enough better that I am tentatively sticking my toes back in the healing waters of publishing to see what I can do—both to get clearer about what I'm experiencing and to let others in on the story. (It is an all-together different thing to simply experience a thing than it is to take the time to try to share the depth of that experience with others. Thus, my writing about my journey helps me understand it more profoundly.)

Though I am not in a position to make any promises about how much I can sustain this renewed effort, I'm intrigued enough to try to do what I can...
 • • •After being hospitalized and diagnosed with cancer Feb 1, my first hurdles were large and varied:

o   I needed to come to grips with my facing a serious, life-threatening illness, which has required of me that I set everything else aside excepting considerations of my health, my intimate relationships, and my relationship to spirit—all of which are intertwined. Fortunately, I have much to draw upon in all three arenas. So the cupboard is not bare.

o  Once the diagnosis was made, I immediately embarked on an aggressive treatment of the cancer. My kidneys had been severely compromised and I needed to turn that around pronto to have a chance at recovery.

o  While it was not difficult for me to make that decision (on some level I've known for months that there was something seriously wrong with my core health and I was trying to limp into my home base in Chapel Hill for time in dry dock over the holidays, such that a thorough check-up could be scheduled nicely between consulting and networking assignments). Clearly I was selling my health short. I didn't make it past Duluth and was psychically ready to yield when the word came down.

o  That said, it was completely foreign for me to enter the world of Western drug therapy and I had almost no frame of reference with which to make sense of what was happening to my mind or body. I could barely tell what day of the week it was and I was mostly floating. I couldn't complete sentences or string together meaning. While this had a euphoric quality, it was also highly disorienting, and I have no idea how anyone could self-manage this phase of treatment without strong support.

Fortunately, the fog of February gradually lifted and I am regaining a lot of functionality, bits at a time. I can't tell how long this new phase will last, but it's been enormously reassuring to be able to place myself again on a more familiar map of reality.

For the last fortnight I have been at Ecumen Lakeshore, an assisted living facility along the North Shore of Duluth. It has been an excellent transition facility for me. I no longer need the intensive services of the hospital, yet need too much support for independent living with Susan.

At Lakeshore I am getting help in three main ways:

a) Regular physical therapy which helps me regain strength, appetite, balance, and functionality.

b) Easy access to doctor appointments and outpatient service at St Luke's in conjunction with my chemo-therapy (navigating Susan's second story every time I make a trip to the doctor's was exhausting; at Lakeshore I'm able to handle all the car trips without negotiating stairs).

c)  It is an essential bridge between the onset of chemo-therapy and my upcoming application to Mayo to be considered a viable candidate for stem-cell transplant therapy—which protocol my oncology team strongly supports.

Thus, the road map for me is to complete my last two weeks at Lakehsore and then drive down to Rochester MN with Susan for an appointment Oct 24. There we will meet with a transplant expert to determine if I’m a suitable candidate.

o  If this gets approved, we will be placed in a queue to get the transplant procedure done, which we anticipate may take about two months to complete (once you take into account all the careful work needed to successfully eliminate all the bad plasma in my system and replace my cancerous bone marrow with healthy stem cells). That's my most optimistic scenario.

o If Mayo turns down my application, the fall back will be to apply for this procedure to be done at the University of MN, where my oncologists also have personal connections. Obviously, there are a number of reasons why there may be delays, even if I ultimately get supported, but the essence of all this is that I cannot test my ability to place the cancer into remission until and unless I get approval for the protocol. One step at a time. The next big milestone will be the appointment in Rochester.

o  As I'm sure everyone can appreciate, there are nontrivial questions about wether the protocol will succeed even if I get approved to attempt it. That is, I may be getting to the cancer too late to turn it around—something we cannot know ahead of time. It’s a genuine test of my optimistic spirit.

o  There are also serious questions about how I’ll be able to afford all this, even with full Medicare coverage—but we’re crossing bridges one at a time and I don’t want money to stand in the way and my giving this my best shot at management (even as I perform due diligence about applications, paperwork, etc).

o  Last, I cannot complete this update without honoring the incredible upwelling of unconditional support I've been receiving from all over the world, from people who wish me well in this health odyssey. I reckon I'm only about a quarter of the way through the gauntlet so far, with many variables and speed bumps yet to be encountered before I'll fully know where I stand.

I am in awe of how much we all know that we need to stand together in times of need and am deeply touched by how many of of my friends and acquaintances have been reaching out to me in my hours of need. I am blessed.

Uncanniest of all has been my burgeoning, unconditional love with Susan, all of which has blossomed in the last nine months. Here we are committing to the unknown with each other based almost wholly on heart and trust—on being in the right place at the right time. Yes, we've known each other since our salad days in college, but that can hardly explain the strength with which we've come together in recent months, where we are facing the considerable unknowns of my health together.

It is a miracle to experience love like this and I wouldn't miss it for anything.

Caring bridge site is up

Hello everyone,

This is Jo here (Laird's daughter) Laird is focusing on recovery right now and is, as I'm sure you have noticed, not writing blogs. Susan and Laird are trying to maintain updates on his caring bridge site. The address is caringbridge.org. You will have to sign in to see his posts. Then just search Laird Schaub. Thank you to everyone who asked for this link, we apologize for the delay, we had to figure out how to get into this account.

Best wishes,

Jo

Cancer Update: Treatment Continues

I. I'm slowly working my way up the table of periodic updates: from horizontal to right anglethough there are apparently some among my readership for whom that subject can never be insuffiienctly compelling nor can the content ever "too right" to be labeled as inappropriate as blog material. Just bring it on, and let the blue pencils fly. Sheesh. I'm no convinced this is a good way to run a railroad.

I face a stiff challenge first thing evey day when the PT folks push me to give them "true weight" right out of the box. This request invariably puts me my off my feed (do they believe I've heretofore been conspiring to obsfuscate?) It just wrong foots the whole day.

II. While I'm at it, I've also noticed some subtle changes to the frequency and duration of my walker perambulations. Though I have no idea why that constitutes compelling information, I nonetheless have it. Surely Therapists want consistent information about weights and it makes sense that they're more likely to get if it's requested at the same time daily.
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That said, I chafe because they are willing to let the high standards (just barely possible in the controlled hospital environment) be the enemy of the good that's routinely possible but mostly wasted. Sigh.

III. Finally, there are some oddments about difference ways that readers prefer receiving information updates, which includes a marked perference away from cognition and toward gestalt. Is that worth noting? Apparently it is, as here I am already doing it, as well as preferences about how how that info is conveyed. 

While everyone wants blood be be drawn only as needed, and wants samples to be fresh, the patient wants the total number of draws to be minimal where the doctor what wants to emphasize freshness and blood that's least likely to coagulate.

Nursing staff wants to emphasize frequencing of testing for vitals (blood pressure, heart rate and blood temperature) to avoid surprises. Patients want to reduce routine testing in the service the same goals. It gets confusing. And when the music stops, everyone is supposed to get their butt in a chair or go home. Can you see why this is nerve-wracking?

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