Good News from Mayo: Steady As She Goes

Yesterday I was at Mayo Clinic for my Day 60 check-up (two months after my autologous stem-cell transplant, July 29) and everyone was smiling at the end of day.

The headline is I’m doing well. I met with Dr Buadi (my Mayo hematologist) and he officially labeled the transplant as “very good”; one notch below “terrific.” I didn’t earn the top rating only because my lambda light chain number was 2.7 (for reference, it was over 1800 when I was first hospitalized in January!) and not zero, and my creatinine number (measuring kidney function) was slightly above normal (though Buadi felt that was likely an artifact of my taking Bactrim, a medication that helps me tolerate other medications. Essentially the tests indicated that the cancer is still present, though in minuscule amounts.

In addition to having 12 vials of blood drawn Tuesday, I also had a bone marrow biopsy (my hip will be sore for a week), but there was not time before the meeting with Buadi to have it analyzed. Also, Buadi wanted a more detailed urine analysis (not yet in his hands) to get a more complete picture. However, I had had one done two weeks ago in Duluth and the result then was excellent, so I’m not worried.

The essential news is that I’m in good shape (for someone with multiple myeloma) and Buadi does not expect to see me again until next July, at the one-year anniversary of the transplant. Meanwhile, he has recommended that I go on a maintenance chemotherapy program where I take a single drug (Kyprolis) twice a week for three weeks, followed by a week off. If that regimen goes well, we'll back that off to every other week after three cycles.

So long as I tolerate Kyprolis well (which I did this past spring) and it continues to be effective in suppressing the cancer, he thought I’d be on that protocol for two years, after which everything would be reassessed. It all sounded good to me. Having a two-year window in front of me where he was expecting things to go well was the best news I’d had since my receiving my diagnosis in January. Susan and I are breathing much more deeply today. I feel like I just went off the endangered species list.

The only wrinkle in this good news is that Kyprolis needs to be taken by infusion (via intravenous transfusion into the bloodstream) which is accomplished as outpatient work in the hospital. On the one hand, this is a routine I’m familiar and comfortable with in Duluth, but it complicates traveling and my work as a teacher and process consultant. I’ll have to huddle with my oncologist in Duluth (Alkaied) to figure out how much wiggle room I’ll have around delaying some treatments in order to shoehorn them in around my road trips.

It will be a new dance, but it looks like I’ll be around a for a good while yet. Yippee!

Reacquiring Warp Speed

This past weekend I was conducting Weekend IV of a two-year facilitation training in the Pacific Northwest. It marked the first work I'd done as a process consultant in three months—since co-trainer Ma'ikwe Ludwig and I conducted Weekend III of the same training.

As you can appreciate, this was an important marker for me as a cancer survivor who wants very much to be also be a career survivor, albeit on a somewhat modified (read humane) schedule. While the travel out (by train) was somewhat tiring, I came out a day early to arrive on site with enough breathing room to rest well before going on stage.

Under the model we use for the training, three-quarters of each weekend is devoted to preparing for, delivering, and debriefing real meetings that the students facilitate for the host group. The concept is that students learn faster facing live bullets than by hearing the trainers tell stories or conducting role plays. While I'm convinced that this is sound pedagogy, its efficacy hinges on the trainers being able to teach the moment—each of which is unscripted.

Thus, a training weekend presents a serious test of how far along I've come in recovering my cognitive agility. While the results in June were so-so, it was highly gratifying to be able to perform again at a professional level, to be able to come in and redirect sensitively as dictated by the situation. Whew. Thinking that I can do it is not the same as showing that I can do it.

An important teaching element is being able to demonstrate to the students how to make effective choices in the complexity and chaos of live meetings. In the most delicate moments this can mean being able to access any or all of the following skills:

o  Sorting the wheat from the chaff—extracting the essence of statements more or less as quickly as people speak.

o  Having a working memory of what has happened previously that bears on the current moment.

o  Phrasing comments such that the meaning is clear and requests are within the capacity of key individuals to respond positively.

o  Being ready to offer a deeper, cogent explanation of why your requests or observations are pertinent in the event the audience is confused.

o  Recognizing quickly when the group is heading in a dangerous or unproductive direction, offering a constructive redirection.

Describing such moments isn't nearly as powerful as witnessing them, so it's up to the trainers to be able to carry the mail.

While it's undoubtedly useful to be able to function on impulse power, there is nothing quite like achieving warp speed. It's nice to be back.

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.