Gearing Up for Chemo

It's the weekend. For Susan and I that means a couple day off—as in no medical appointments—before action resumes Monday, when I get a central port placed high in my torso (to ease blood exchange for the chemotherapy to come) and a sample of belly fat taken to test for amyloids (see more about this new wrinkle below). 

Good news for ducks and flower beds. It's raining steadily as I type and that's supposed to keep up all day. That makes it a good day to not walk to the clinic, and a good day to compose a blog. Susan and I had been hoping to stroll over to the farmers market this morning, but we gave up on that idea once the skies opened up.

We saw Dr Buadi yesterday. He's the hematologist overseeing my stem-cell transplant. All systems are go for my receiving the chemotherapy Wednesday (melphalan), to be followed Friday by the reintroduction of my stem cells. In the parlance of my Bone Marrow Transplant (BMT) Team, next Friday will be dubbed Day Zero. While Susan and I had been hoping this timetable would not have been so stretched out (six days between the completion of stem cell collection and the chemo treatment), we are grateful for the down time together this weekend. 

My sister Alison is slated to arrive late Monday morning (July 25) to tag in as my primary caregiver, allowing Susan to drive back to Duluth that afternoon. She'll have 10 days or so at home to catch up on work at church, to get a break from Mayo coffee, and to convince our dog, Lucyie that she's still loved. She'll then return in time to take back the caregiver baton from my dear friend, Annie, who will be in charge of Laird duty Aug 1-8.

From Day Zero onward my routine will be the same every day. There will be a visit to the clinic so that the BMT Team can get eyes on me to make sure everything is proceeding on course. This is important because I will be immune-suppressed after taking the melphalan, and therefore susceptible to catching random germs and diseases that a normal body could shrug off easily. If there's a complication, my BMT Team wants to be right on top of it.

When I first tried to imagine what the transplant would be like, I pictured a challenge similar to what I went through in Feb and March, recovering from getting knocked flat on my ass by both severe back pain and my body's response to the early cancer treatment. Last winter I wrestled with being bed ridden and learning to walk again. After talking with Elsie Martin though, a friend who went through a stem cell transplant 2-1/2 years ago, also for multiple myeloma (MM), she reported how important it was to her to have the goal of walking at least one flight of stairs every day. I thought, huh? I didn't attempt stairs until returning home after almost seven weeks of hospital and rehab therapy last winter.
But this will be a different deal. I will be attempting to not lose the ground that I have carefully gained since Feb, and that means I need to keep moving. To be sure, it needn't be fast; I just need to keep using my legs, because that will get me home faster. Conveniently, I have one flight of stairs separating my room at Transplant House from the kitchen/dining room, so I may adopt the same post-transplant recovery goal as Elsie did. If I am able to walk to my daily appointments at Mayo (as I have so far), so much the better.

In any event, I'm looking forward to moving on to this next and final stage of the transplant process (in the spirit of, you can't get done until you get started). I have a comfortable setting, a terrific care team, and top-notch medical assistance. Let's get 'er done!

• • •

Now back to the amyloids. There was modest (inconclusive) evidence that I may have an incipient problem moving me in the direction of amyloidosis. This is a relatively rare, but serious disease that involves the accumulation of unwanted protein fragments (called fibrils) that the body has trouble disposing of. These fibrils can aggregate and interfere with normal body functions. While this disease can present in a variety of forms, one version compromises the kidneys and heart.

With that possibility in mind (because I need my heart and kidneys to be hitting on all cylinders as I continue my battle with MM), Buadi ordered tests to take a closer look for amyloids. Because they are rare and show up in many forms, they are difficult to diagnose. Nonetheless, it is a measure of my doctor's thoroughness that he's checking anyway.

On the good side, my kidney functions have steadily steadily improved from their dangerous low point when my cancer was first discovered in late January (I was only functioning on 20% capacity at that time and was close to renal failure), and that kind of improvement is contraindicated in the presence of amyloids. So the early evidence is mixed, and I think the best way to see this is my doctor is being prudent. While I don't want there to be any more complications, I want my doctors to be looking in case there are. Who would want it any other way?

• • •

It looks like an all-day soaker today in Rochester—a good day to read or go to a movie as I keep building strength for the weeks ahead.

Getting Turned Inside Out

I've now completed three days of apheresis, having collected 4.4 million stem cells on my way to six. (Although the transplant will use only three million, my doctor wants double that amount in hand in case a second transplant is indicated.) While I'm getting tired of being a pin cushion (think lots of IV sticks and belly pokes) the end is in sight. With luck, I'll inch across the finish line tomorrow.

I awoke today to scary news. My brother-in-law Norm suffered a stroke yesterday, and his wife (my sister Tracey) went to bed last night with Norm in the hospital, not being able to talk. We got a brief note from her first thing in the morning apprising us of the situation. Fortunately, Norm recovered his speech later today. While they're still testing, it appears he'll have a full or nearly full recovery. Whew. It's sobering to be reminded that serious health challenges can strike any of us at any time.

On a positive note, there is a riot of flowers in bloom in downtown Rochester (after all, it's mid-July) and it's a multicolored joy to walk the pathways that Susan and I traverse between Mayo Clinic and Transplant House each day. Further, Rochester is an exceptionally clean and friendly town, and from the eighth floor of the Eisenberg Building (where apheresis is conducted) we have a nice panoramic view of the north side of the city in full green raiment. Today we got a bonus as storm clouds rolled through all morning. Though it didn't rain, the view was spectacular.

Looking back over my first 10 days in town, it's been wonderful having so much time with Susan (who is taking time off from her regular duties at St Paul's Episcopal Church to be my primary support person). Starting next Monday Susan gets relief as Alison, Ceilee, and Annie takes turns covering the next fortnight. While I'm anticipating good connections with those loved ones as well, it's been precious sharing with Susan all of my fears and joys as I surrender to the fast water of the transplant process, trusting the sturdiness of our intimate canoe to see us safely through. It is, after all, a big deal. Our future is at stake, and I hold dearly the hope of being able to enjoy substantial time together in good health.

• • •

Mayo Clinic thoughtfully offers apheresis patients access to movies while they go through the five-hour collection sessions. Monday we watched The Intern (a lovely comedy with Robert De Niro and Anne Hathaway). Being an older guy myself it was touching watching how De Niro portrayed a 70-year-old widower who was not yet done with making a contribution in the world. I admired his patience working in a company run by people who were a generation younger than himself—available to give advice if asked, but never pushing it. Without rancor or ego, he gracefully accepted the role of office intern after retiring from a successful career as a business vice president. He simply wanted to be back in the action and knew how to be a team player.

The action hinges off a personal crisis for the company founder and CEO, Jules Ostin (Anne Hathaway). She loves her company (an online fashion start-up) but the long hours take her away from her daughter and stay-at-home husband. The neglected husband has an affair, Jules finds out, and feels she has to choose between a job she loves and the family she loves. In the end, hubby repents and Jules gets to keep both, but left unexplored is how that adds up. Where are the extra hours needed to do both well going to come from? The movie got right up to the crucial question and then ducked.

Tuesday we saw Spectre (the latest James Bond thriller), and today we caught Star Wars: The Force Awakens (episode VII). Sandwiched between these two escapist thrillers (where once again, wouldn't you know it, good triumphed over you know what at the last possible moment), we enjoyed Inside Out, a delightful Pixar's release from last year. (Does Pixar ever produce a bad movie?) While I'm not sure that catching up on movies you missed first run is an even trade for having cancer, it's at least a sliver of a silver lining.

The best of the bunch was the animated film, Inside Out, which I had never heard of but Susan knew to be a winner. The concept is what's happening in the consciousness of an 11-year-old named Riley as she tries to integrate her five primal feelings: Joy, Sadness, Fear, Anger, and Disgust (think of a team of five trying to cooperatively resolve how Riley should respond in any given moment, with Joy as the team leader, but not necessarily always in control—it was hilariously insightful). 

The film's dramatic crisis occurs when Riley (an only child) and parents leave their happy home in Minnesota to explore a new life together in San Francisco. Riley stumbles out of the blocks in her first day at her new school, and this movie brought me to tears as Joy learns to make friends with Sadness, helping Riley reunite with her parents—rather than trying to keep Sadness confined to a small circle where she doesn't touch much.

What a delightful way to introduce the concept of emotional health—something we all struggle with, not just 11-year-olds. While Riley's brain worked overtime to make sense of her conflicted feelings toward her parents (why did they take her away from the Land of 10,000 Lakes, where everything was going so well?), it triggered sympathetic tears in me about my complicated relationship with my father, where I struggled mightily to understand my emotional responses (and his).

Anyway, that's what I noticed during cancer treatment today. What's it going to be like when the hard part comes?

The Hole in My Whole

You can't judge an internal injury by the size of the hole.

—Salman Rushdie, Satanic Verses

This is the kind of insight that I would ordinarily have passed right by, but when I came across it last month, I lingered. Checking on Wikipedia I was pleased to see that others have found this a noteworthy sentence before me.

As someone suffering from grievous injury (life threatening cancer), I wonder how the metaphoric hole in my health impacts me.

How I Relate to Death
Overwhelmingly, my 66 years (so far) have been characterized by good health. I've rarely been sick, have never broken a bone, and went 27 years as a process consultant before postponing a job due to ill health. Now, perhaps, that good fortune is catching up with me. In late January I discovered I have multiple myeloma, and it represents a major league health challenge. It may kill me.

While I'm working hard with my oncologists to contain the cancer and secure several additional years of high quality living, it's too early to tell who will prevail in the next roll of the dice. I will be undergoing a stem-cell transplant in July (which entails six weeks of treatment at The Mayo Clinic in Rochester MN) and my life expectancy will be profoundly influenced by the outcome of that procedure.

Because expectations have a direct bearing on results, I have learned to be an optimist. Thus, I look ahead to July with hope and a positive attitude. My will and my constitution are strong and I think my time at Mayo will go well.

That said, rosy glasses are not the same as a sure thing, and the several months between diagnosis and transplant have given me ample opportunity to sit with the very real possibility that my life may soon end. Here's what I've noticed so far.

The Dying Die has Many Facets
—There is the practical side, not wanting to leave loose ends for others to clean up and making conscious choices about how possessions should be distributed. (In fact, if you're diligent enough a will is not needed because everything of value has already been assigned.) Because I have not led an acquisitive life, this aspect of the looking was not that difficult to handle.

In the arena of possessions the trickiest part falls under the category of "intellectual property." Over the years I have invested a great deal of thought and time into the field of cooperative group dynamics, and most of that is captured (in one form or another) in my considerable body of writing. Who should own that? What would I like its disposition to be?

While there may be some monetary value in my writing, I believe that's a long shot and I'm mostly concerned with how my ideas are treated after I'm gone. Will they be lost, or will they continue to be alive in cooperative conversations? 

While this is of compelling interest to me, it's more about leaving something of value for others than about ownership or credit. Thus, if you could offer an assurance that my ideas would continue to be worked with I would happily exchange that for attribution (people knowing that the ideas came from me). I want my contributions to last, but have no attachment to people knowing where the ideas came from. Attribution helps when one is alive, because it leads to additional invitations, but it isn't of much value after I'm dead.

—On the social side, I have been amazed at the outpouring of support that has been extended to me in my illness. In addition to well wishes, this has yielded hours of heartfelt emails and a plethora of visits to Duluth, celebrating connections at my time of need.

By setting aside my work obligations there was suddenly plenty of time for relationships (in addition to therapy) and this felt solid as the thing to place in the center of my attention. There is a tendency to let relationships slide in the pursuit of one's work life, and I was grateful for the mid-course correction—reminding me in no uncertain terms that people matter more than things.

Though the adjustment was not monumental, it was noteworthy and I was glad to make it. I figure it's never too late to get your priorities right.

—Emotionally, this marked the first time I've faced my own mortality other than as an exercise. What if I only have a matter of months to live? Am I afraid? 

Though I am not counting on there being a life after this one (and am therefore plenty motivated to make the most of the one I have), I've always known that eventually the sun would set. Unexpectedly getting information that the sun may be going down more quickly than I was anticipating did not change my fate—it just moved it up on my radar screen.

So here I am watching myself for signs of denial or avoidance. I've gone through some stretches of physical pain, and I expect that there will be more ahead. Maybe the pain will become too much and I'll freak out. Though it hasn't occurred so far, who can say it won't down the road? While I don't believe in heroic medical procedures where there is no reasonable prospect of improving one's quality of life, how can I be sure I won't grasp at straws at the end? I think the most honest answer is that I don't know.

—Spiritually I don't know if I'm any closer to knowing God, or her will. I'm convinced that I would not have lasted much longer if my cancer went undiscovered beyond my hospitalization Jan 31. But even being close to the edge did not lead to any epiphany about the meaning of life, or right relationship to Spirit. I have not regretted any major life choices; I have not pined for replays.

Mostly I'm happy with my life. While I'd prefer having more time (to push my thinking and my contributions a little further), I'll be at peace if that doesn't happen. I've had a good run.

My sense is that I've sustained enough damage that I'll never return to the health I once had. Mind you, I may have a number of productive years remaining—which I'm hoping for—but it's hard to imagine that I'll ever portage a canoe again, or hike segments of the Pacific Coast Trail. For that matter, I'll never build another cistern or fell a tree.

That's OK. There are unlimited books to read, conversations to have, and articles to author. There is plenty of wonder left in the world. While there is a hole in my life that will never close, there is still plenty of the whole left to explore, to taste, and to savor. Susan and I prefer to focus on the amazing opportunities that yet remain, rather than lamenting those that got away. 

We think of it as a style choice. If the brave leaves can emerge from the trees of Duluth, as they are now, than surely I can green up again 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.

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.

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.

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.