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 of 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.