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 increasing 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 consult at the Mayo Clinic 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 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, 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 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

It 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 March 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 angle—though 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.
.
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?

Cancer Update: the Treatment Begins

Yesterday, my oncologist (Dr Alkaeid) decided on a definitive diagnosis: I have multiple myeloma, as original suspected. 

There was a delay in reaching that decision because I have it in an unusual form which makes tracking it somewhat more challenging, and it is somewhat more aggressive than its more common forms, but this bad news is counterbalanced by the cancer being pretty well understood and that it is in a family of cancers in which tremendous strides have made in treating it in recent years (when Susan told our oncologist that her father had died of multiple myeloma in the 1980s, the doctor said the 1980s was like the Stone Age in comparing treatment then with treatment now).

That said, there are complications. The number one priority is saving my kidneys (to avoid dialysis or a kidney transplant). As I reported Monday, their functionality was down to only 20% when I arrived in the hospital Sunday. They were being strained on three fronts: a) processing all the excess calcium in my blood as a byproduct of the bone leaching characteristic of myeloma; b) processing all the useless plasma cells that were being produced by the myeloma; and c) chafing at all the ibuprofen/naproxen I'd been taking to ease my back pain. My kidneys were just plain wore out and close to renal failure.

In treating the cancer, the first step is to kill off as many of the cancer cells as possible through chemo-therapy, but the docs have to be careful the this doesn't lead to a toxic dump that swamps the kidneys. 

After several days of trying to flush the kidneys of the excess calcium and abnormal plasma cell detritus (to enhance their functionality) last night I started a course of steroids and chemical warfare targeted to knock out the cancer cells at a rate that my kidneys could keep up with.

This will be done in courses of chemotherapy, each one taking two weeks. After a course is completed it is evaluated before another is started to see how to adjust the medication for the next course, or whether to stop that protocol. 

Assuming I get through that OK, the next target is to strengthen my bones through re-calcification. Again, care must be taken that the kidneys are robust enough tolerate the treatment. Meanwhile, my bones are thin and at least somewhat more susceptible to breaking than in a healthy person. I have to not just be careful about lifting; I have to be careful about sudden torquing or unusual weight loading of arms and legs.

On the brighter side there is reason to hope (though no assurances) that I can recover a significant amount of renal function if we take away the stressors. That is, the kidneys have some capacity to regenerate and it behooves me to make the most of that possibility, through careful lifestyle choices. This can include diet, travel, and workload but I don't yet know the dimensions of what will be asked.

As if this weren't enough, I still have the presenting back pain that got me to the hospital in the first place. While it's probable that it's related to the myeloma (for example, the calcium loss has led to partial collapse of three vertebrae—T 11, T 12, and L1—if you're keeping score at home), we're not sure of the mechanism yet or even the best way to treat it. 

That said, the doctors are agreed that it's a bad thing for me to stay supine and I need to be moving more and upright as much as possible. Toward that end, I'm taking oxycodone for pain relief and working with a physical therapist to get me out of bed every day and walking—I'm not doing anything quickly, but at least I'm starting to do some of it vertically.

Today, for the first time in a month, I did a 100-foot sojourn (around the nurses desk before heading back to bed with the aid of a walker), and sat up to take my dinner for the time since December. Small but important steps to life-after-hospital.

The news that landed best all day was a story this morning from one of the staff oncologists (Dr Perlov) who said that he treated a man just last December who presented with another version of multiple myeloma with the same degree of complications as mine and he's well on his way to full remission and excellent prospects for about 15 years of healthy life ahead. 

It sounded damn good to me.

Time to Slow Down

For the last four decades I've devoted myself to the creation, exploration, and promotion of community living. Over that time, whenever I talked about the "C" word, I've been invariably referring to community. As of yesterday, however, the "C" word immediately in front of me is cancer.

As readers of this blog will know, I've been battling chronic back pain for 16 months, and acute lower back pain since mid-December. As I have been through previous episodes of this since its first occurrence in October 2014, I've been treating it similarly and expecting it to settle down with the help of prescription medicine and bed rest.

But after 6+ weeks of yo-yoing back and forth between almost functional and can-hardly-get-out-of-bed-to-pee, I finally faced the fact that I needed help beyond what my own body could provide, and went to the ER at St Luke's Hospital in downtown Duluth yesterday afternoon. It turned out to be a good thing that I did.

As soon as we got past the admittance dance (how do you spell that last name again?) and I could lie down in a bed (the pain all but disappears when I'm prone but is excruciating when sitting or standing), things started picking up steam. The ER doc, Scott Wolf, quickly had me relate my history and ordered blood work. My blood pressure was 98/56, which is abnormally low for me, and testing revealed that I was down about a quart. Not good. Further, there was gobs of calcium in the blood and everyone agreed it was time to admit me to the hospital. 

Before I had a room assigned I was whisked off to x-ray and the doc who read the film (Nick) noticed that my bones were thinning and showed the characteristic pattern of calcium leaching—hence the elevated levels floating around in my blood. The preliminary diagnosis is multiple myeloma, a form of cancer in which the body produces abnormal plasma cells. Not only does these cells reduce the number of useful red cells, white cells, and platelets (that help with clotting), they also weaken the bones.

The diagnosis was preliminary and there is much testing to follow—even if the cancer diagnosis is confirmed, it comes in different presentations and the doctors need to know how far long it is before prescribing treatment.

Pin cushion Monday
Today, my first full day in the hospital, they've been drawing more blood, giving me all manner of supplements, queuing up some more x-rays, a CT scan, and who knows what all as the they circle around a diagnosis. With all the adhesive, gauze, and tubes, it looks like I'm trying out for the walking wounded drum and fife corps.

They're also flooding my body with intravenous liquids (two units of blood and all the saline solution they can pump into me) as the standard treatment for pepping up my kidneys. 

In exchange I get cable TV and anything I want to eat between the hours of 7 am and 7 pm.

I'm starting to get the picture that I'm facing a serous health threat. While I don't yet know the full dimensions of it, I've been gradually digging myself a hole for quite a while now and it's time to start working my way out of it.

Mixed feelings
I'm experiencing a perplexing range of emotions:

o  Foremost, it's likely that I have cancer. While the docs have been upbeat, cancer kills and at this point I don't know how close to the edge I am. That's scary.

o  Paradoxically, it's also a relief to finally be getting solid diagnostics abut what's causing my recurring pain, and what I can do to fix it.

o  Over the past month I've been going through a roller coaster of feelings as I attempt to puzzle out why I'm in such pain and the right way to think abut getting through it. It's been bewildering and exhausting. Do I push through the pain or listen to my body?

Right now I feel overwhelmed, and at the same time well taken care of. In a day or two the fog will lift and I should be able to get my first glimpses of the road ahead.