Yesterday I reached a huge milestone--300 days post-transplant!
I thought I'd take this time to check in after my holiday hiatus, during which John, Caroline, and I spent some much needed quality time with friends and family. In December, in addition to Christmas, we celebrated Caroline's 2nd birthday and checked off an item on my bucket list by attending a New Years Eve wedding. I also became a first-time godmother this past Saturday.
On January 4th, I had my 9 month follow-up appointment with my oncologist at Ohio State. My counts were much improved from where they were after my bout of pneumonia in November. I also received my second round of immunizations (5 shots!) and my doctor is slowly weaning my daily steroids. Otherwise, I'm trying to hibernate as much as possible for the next few months to avoid cold and flu season.
Despite enjoying our holidays, the past week or so has been emotionally difficult. I learned that my uncle (the same one that hosted us for seven months during my treatments in Ohio) has chronic myeloid leukemia (CML). CML has a high survival rate, and his treatment for now will likely consist of chemotherapy pills and periodic blood draws.
But like all medicine, there's no promise of a cure-all, and at the end of the day it's still cancer (a disease which I have several choice words for that need not be repeated here). I'm just honestly having a hard time grasping how something like this could happen to him when he and my aunt so generously opened their home to us last year.
Then my friend Emily called with the worst news. Last year, she had acute myeloid leukemia (AML)--it's aggressive with a poor prognosis just like BPDCN. She was diagnosed less than a month before me, and her transplant was about 40 days before mine.
Only a month out from reaching her one-year milestone in February, and just days after celebrating her 15th wedding anniversary, Emily learned last week that she relapsed.
I'm heartbroken by her news. We support and lift one another up in a way that no one else really can unless they've been through it. Emily has a school-aged daughter, and our situations are just so similar. She's also an amazing contributor to the Louisville community; watching her determination and strength last year often got me through on days I didn't feel strong.
For her to have made it this far and relapse is absolutely devastating. She has to begin climbing the mountain again from its base. And this time she has less equipment to help her climb.
In more literal terms, Emily first needs chemotherapy to put her remission again. She left Louisville this morning to begin a month-long clinical trial at Siteman Cancer Center in St. Louis, which will hopefully knock the cancer out quickly. Emily is focusing her energy on achieving remission before thinking about any next steps. (Also, on Emily's behalf, to my lobbyist/government friends out there--can we PLEASE ask the NIH to remove the phrase "salvage chemo" as acceptable medical terminology? It's morbid, cold, and dispassionate. Cancer patients need hope. Period. And (insert sarcastic tone here) "salvage" doesn't quite do the job.)
If Emily achieves remission, in order to beat the AML, she will probably need a second transplant. We both agree that we wouldn't wish one transplant on our worst enemy, let alone two.
Emily's relapse is a reminder of just how fragile this all is. I saw her yesterday to send her off and she looks completely healthy. The news of her relapse came as a shock to us all.
I'm just a couple of months shy of my first re-birthday (my immune system will be 1 year old on March 22nd). We remain hopeful and cautiously optimistic about my progress in this new year. In the meantime, please light a candle and/or pray for Emily, her family, and her medical team. I need her, her family needs her, Louisville needs her.
And Emily, this is for you on the days when you're not feeling so strong (John made this for me and it stayed in my room during transplant; these words are for you now):
