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.