Tuesdays with Mayo

No, I'm not referring to a new sandwich option at Ruby Tuesday's—I'm talking about my current treatment protocol in my ongoing dance with multiple myeloma.

The Back Story

I started experiencing serous back pain in late 2013, which eventually led to my getting tests done at my local hospital in Memphis MO in December 2014 (you may be wondering what took me so long, but I have a reasonable tolerance for pain, and I've always been able to heal myself by "riding it out," so that's what I was attempting). In any event, I had a CT scan done which was interpreted as negative for cancer, but highly suggestive of early onset arthritis. No fun, but not so bad.

So I soldiered on, with the help of serious doses of ibuprofen. Except I didn't get better. After being bed ridden for the first month of 2016 (and in excruciating pain), it was time to try the hospital again. This time the CT scan told a different story. The back pain was associated with three collapsed vertebrae at the top of my lumbar section, caused by calcium leaching associated with multiple myeloma. The headline: I had cancer.

While I was pretty far down the rabbit hole by the time this got discovered, I was able to rally, get the cancer under control, and undergo a bone marrow transplant (aka stem cell transplant) that summer at Mayo Clinic in Rochester. That gave me a fresh set of downs to work with. 

{Here's how that works. Multiple myeloma is centered in the bone marrow. When you undergo a transplant, you are given a poison that kills everything in your bone marrow—cancer and all—after which your bone marrow is repopulated with your own stem cells, that have been carefully harvested right before you're given the poison. This sets the cancer back for about a year.). 

While there is no cure for multiple myeloma, there is a growing panoply of treatments available to manage it, and the strategy was to milk each of those as far as possible, essentially hoping that new treatments would come online faster than I would go through them.

It's a fascinating dance.

Where I Am Today

Now fast forward four years—an entire presidential cycle. When I came back from Mayo Clinic in August 2016, the prospects were bright for our electing the first woman President. Remember back then? My how things have changed. The prospects for my health have improved greatly, while the prospects for the country, sadly, have gone in the other direction.

In less than a week we'll be spinning the election wheel again, and we'll see what we get this time.

After completing the stem cell transplant at Mayo, my ongoing care and treatment were overseen locally, at St Luke's Hospital in Duluth. That went relatively smoothly for four years, as I worked through a progression of treatment protocols. First Kyprolis, then Ninlaro, followed by Daratumumab (I knew you'd want to know). When the effectiveness of Dara waned this past summer, I'd run out of FDA-approved options and needed to reach out into the quirky world of medical trials—where drugs being tested for FDA-approval are put through their paces. While expenses are 100% covered by the sponsoring pharmaceutical company, effectiveness is more iffy, and you can encounter some science fiction side effects. 

Still, it's better than dying, and being near Mayo ("near" being a relative term—it's a 3.5-hour drive one way from Duluth, if the roads are clear) means I have access to the latest trials. At the recommendation of my hematologist at Mayo (Dr Buadi) I opted into a trial for MEDI2228 (drugs aren't christened with their exotic names until they pass FDA muster), which I started Sept 1.

Although I only receive doses of the drug every six weeks (via intravenous infusion) I am required to travel to Rochester every Tuesday for data collection (mainly a blood draw and an eye test). Typically, Susan and I are driving seven hours round trip for about 30 minutes worth of medical work. It's a schlepp. (The silver lining is that there's a Trader Joe's in Rochester, and there isn't one in Duluth.)

—Fall Colors on Parade

One delight has been watching the autumnal foliage advance, week by week. We even got a decent look at the progress of the fall harvest. (Corn and beans both looked exceptionally good in the southeastern corner of the state.)

—Photosensitivity

I was cautioned at the outset that some users of MEDI2228 experience a marked sensitivity to bright light and increased susceptibility to sunburn. While none of that showed up at first, it gradually did, to the point where it was unsafe for me to drive after six weeks. Ugh. I squint so much that Susan refers to me as Mr Magoo. While it's semi-amusing that I wear a bill cap indoors (to deflect light from overhead lamps and bright sunshine), it's meant that Susan has had to handle the full load of seven hours behind the wheel every Tuesday.

When we had to negotiate an early snowstorm Oct 20, the return drive from Rochester took a grueling six hours (instead of three-and-a-half) and she was a wreck (though not the car) by the time we finally pulled into our driveway. Welcome to winter.

—Navigating the Warrens

Mayo is one of the largest medical facilities in the world, and it's the largest employer in the state of Minnesota. Over the years it's grown into an incredibly complex complex, with everything connected via tunnels, elevators, and overhead skyways, so that patients don't have to brave uncertain outdoor conditions going between buildings. It's easy to get lost—but you're never that far from an information kiosk, where friendly faces can point you in the right direction. 

After being in the maze every week for the last 10. I'm starting to navigate it like a veteran (and Susan knows her way around even better than I do). I can even find the Starbucks through the subway system, and know when to look up to see the awesome Chihuly blown glass sculpture suspended above the atrium of the Gonda Building.

As a former nonprofit administrator, I have an appreciation for administrative competency, and Mayo has it in spades. There are patients and medical personnel converging on their facility every day from all over the world, and yet, they know where everyone is supposed to be at all times. Appointments are sequenced to allow for the vagaries of doctor schedules and travel time between facilities, so that you never need to hurry, nor are you asked to wait that long. I am in awe of how they keep it all straight.

—Election Day

As it happens, my next trip to Mayo is on Election Day. As we should be finished there by 2 pm, we should be home by 6 pm—in plenty of time not to miss any of the Trump death watch, and the chain reaction down ballot Republican catastrophe. (When you weld your wagon tongue onto the back of a manure spreader, you shouldn't be surprised that you come out smelling like shit.)

The Road Ahead

Even as things get sorted out on the national level, it's not clear whether MEDI2228 will be effective in containing my cancer. If the marker for my disease (lambda light chain) does not decrease in the next couple weeks it will be time to look for another trial (hopefully one that's like Susan—easy on the eyes).

The good news is that all of my other vital signs are solid (heart, kidneys, and ambient pain level) so, while the doctors are closely tracking my progress, they are not alarmed. Thus, while I have no idea what's next, I'm confident that I'll be given the best chance possible. 

And my adventure continues.

Fortunes Reversed

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

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

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

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

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

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

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

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

The Flight from Here to July

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

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

For a quick review of the bidding:

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

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

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

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

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

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

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

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

Based on what I learn at that stage, I can plan accordingly.

• • •

In meeting with Dr. Alkaeid Monday (who's playing point person on my Duluth oncology team), we went over where we were and where we were headed relative to the recommendations from Mayo (secured last Thursday in my meeting with Dr Buadi).

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

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

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

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

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