Day 700 - Roses and Thorns

Hi everyone. I hope this post finds you happy and healthy in 2019.

Although I feel like celebrating each day that I wake up alive, today calls for a little extra celebration because it marks 700 days (!) of life following my bone marrow transplant.

Sharing this news with you certainly brings a smile to my face. But it is accompanied by a sense of loss that belies every new milestone I reach.

Loss with which my friend Chaeleigh, for example, became acutely familiar when her BPDCN relapsed last year only 20 months after receiving her first transplant. Chaeleigh graciously helped me navigate the BPDCN waters during my treatments because she had the same experience the year before.

It is not lost on me today that she never reached Day 700 after her first transplant. On my darkest days, I always referenced her experience with BPDCN when I was hanging on to hope by a thread. I’d think to myself—yes, the statistics are grim, but Chaeleigh is surviving this! If she can do it, so can I! Now I’m the one blazing the trail in her stead as she tries to recover from her second transplant (something I wouldn’t wish on my worst enemy even once).

And then there’s Emily. Vibrant, glittering, irreplaceable, one of a kind, Emily. My friend with whom I shared a bond forged by fire.

We first met in early 2016 at Emily’s local Louisville business, The Diaper Fairy Cottage.  At the time, Caroline was a newborn, and I was a brand-new mama who was overwhelmed and had no clue what she was doing. On the second floor of The Cottage, Emily created a safe space for new moms and their babes. We sought and shared advice, laughed, cried, commiserated, and generally helped one another through those daunting first weeks and years with young children.  Emily created and facilitated it all.

Little did I know that 10 months later, Emily would be diagnosed with acute myeloid leukemia. Just four weeks before my own diagnosis. 

We both had incredibly poor prognoses. We both needed transplants.

Emily and I reconnected quickly and supported one another from afar during treatments—she in St. Louis and I in Columbus. We shared our fears, our experiences, and most importantly, gave one another hope.

Then we were both bridged to transplant. And we each reached day 100. And we both returned to our friends and loved ones in Louisville.  Then we reached day 200. And day 300.

We were surviving together. We were going to change the conversation around “fighting” cancer and lobby against some of the medical verbiage used (e.g. “salvage” chemo), together. We were going to spread our stories far and wide so that maybe, just maybe, someone else would find our guidepost and not feel so alone on the path we’d already worn.

Then, only a month shy of reaching the first anniversary of her transplant, Em relapsed. After enduring more treatments, an under-the-wire donor came through and she received a second transplant in St. Louis last May.  We all truly thought the clouds had parted and this was the miracle that was meant to be.

But reality was cruel. Emily’s cancer came back with a vengeance, well before her new immune system ever had a chance to settle in, take over, and eradicate the disease.

Emily chose to return to Louisville last summer and spent her remaining time surrounded by those she loved most—her husband, daughter, family, friends, and countless others. The day after Thanksgiving, Emily left behind her “human suit” (her words) and gained her glittery angel wings.

Among the flood of tributes, beautiful messages, and outpouring of love, someone commented, “Quiet please. A lady has left the stage.” Indeed.

One tradition Emily implemented in our new mamas group was to have everyone share their weekly “roses”- things that were good, happy, or going well, and “thorns”- things that were presenting challenges in our lives. 

In the best nod/thank you/I love you/I miss you I can think to give to Emily, I’m laying out my status update for you “roses and thorns” style. 

Thorns first.  Because I want to end with the good stuff.

2018 THORNS

Losing Emily.

Chaeleigh’s relapse.

The health battles faced by so many of my friends and family.

Chronic graft vs. host disease, which is the result of my partially mismatched (9/10) immune system not yet recognizing my body and attacking it as foreign.  The disease manifests itself randomly, with unpredictable symptoms and side effects including things like fatigue, limited range of motion, skin rashes (that sometimes look like the BPDCN which makes it extra scary and anxiety-producing), extreme sensitivity to sun, dehydration, blurred vision, and others that don’t make the highlight reel.  Thankfully, we’ve been able to (mostly) keep the disease from becoming completely debilitating with medication.

2018 ROSES

With few exceptions, as of late July last year, all of my blood counts are on the low end of “normal.”

My immune system is 100% donor! My most recent chimerism test showed that the donor’s marrow has completely taken over. This is exactly what we want, because we know that my own “host” cells are susceptible to the cancer. I haven’t discussed this test much publicly because for a long time my results were abysmal and as low as 40% donor at times.  Low chimerism numbers often indicate relapse, transplant failure, or that one of those two things is on the horizon.  100% donor is a BIG deal.  Hurrah for the transplant doing it’s work!

We also attended the Kentucky Derby - something I told John from the hospital bed that I was determined to do again if I survived.

We celebrated our 10-year wedding anniversary with a great trip to Chicago, Asheville, and Charleston. 

I finally got John to wear a family-themed Halloween costume.

I visited San Diego and was mere feet away from wild sea lions. This one was serious about naps.

I visited NYC at Christmas time. 

I celebrated my youngest nephew’s 1st birthday (significant because he was still “baking” during my treatments) and saw Caroline reach age 3.

Last but certainly  not least, I returned to work at Stites & Harbison, where I received quite possibly the warmest welcome home I’ve had in my life.  I am privileged to spend my working hours with people who are not only excellent attorneys, but extraordinary human beings. They are like family, and I missed them.

As always, recovery is an ongoing process. In the meantime, though, I am taking full advantage of the gift of life that for so many is prematurely cut short.

Wishing you days filled with more roses than thorns-

xo

Rebecca