Oh, my dear friends, near and far, I’m long overdue in providing a proper update on this wild journey I’ve been on for the last 42 months since my diagnosis with Myxoid Liposarcoma in July 2020. I’ve tried my best to keep y’all in the loop as much as possible through the ups and downs of what has been the longest and toughest challenge of my life; sharing some of the setbacks, but also the wonderful joys, wins, adventures, and lessons I’ve rapidly and meaningfully learned along the way.
I’ve been somewhat quiet outlining the specific and many ways that my team of experts at MD Anderson in Houston have been guiding the medical intricacies of my fight. Not wanting to get too far ahead of myself, or give false hope, or seek too much attention related to the ferocious requirements of the treatment plan, I’ve quietly kept my head down and eyes on the path forward, determined to battle this nasty opponent with as much vigor and grit as I could muster.
The truth is that cancer care can be, and has been, absolutely physical hell. To give you a better sense, over the past almost 4 years I’ve been through twelve rounds of chemotherapy, sometimes for five-day stretches in the hospital, using two combinations of powerful and toxic drugs. I completed one experimental clinical trial. We used an innovative cryoablation to address a pesky tumor in my left arm. I experimented with two targeted oral drugs meant to address a prominent genetic mutation marker associated with my cancer. And I’ve received seventy-three individual doses of radiation on six specific areas of my body. Not to mention the 50+ scans I’ve endured along the way to monitor, and navigate the progression of the disease. Some of the treatments and phases were much harder than others. Some have shown promise and slowed the progression of the metastatic disease. But sadly, overall, we’ve not been able to find that magic combination of things to fully get things back on track for me.
My spirits have ebbed and flowed throughout. But I’ve never given up, not for one damn day. I’ve been fighting like hell for this life I love and value so much. I’ve been fighting not just for me, but for each and every one of you who I know have been just as invested in my desired recovery. And, I’m proud as hell of my determination, quiet resilience, and graceful yet realistic hope along the entire path.
This all brings me to the really hard part. The words and realities of my situation that I have been dreading and holding at bay as long as possible, but sadly feel it’s time to share. It seems that I am entering the final phase of this journey with cancer. Right around Christmas I developed incredible pain in my back and legs, unlike anything I’ve ever experienced before. Scans confirmed that tumors pressing on my spine were significantly escalating things at a more rapid pace. And now, in the last week, those same tumors created the loss of feeling and functionality in my legs. After working so damn hard to adjust to my life as an amputee when the disease took part of my leg in November 2020, the more permanent loss of my mobility and independence has been a particularly difficult pill to swallow. To be honest, I hadn’t fully grasped or processed just how proud I was to be such a brave and strong warrior through the amputation phase of my journey, so, I wanted to briefly acknowledge that bad-assery amidst this update.
So, what does this all mean and what comes next? I’ve elected to come full circle and finish my life back here where it all started in Cleveland, Ohio. Doug and I moved into a perfect little condo that the universe revealed just around the corner from my family. There, I’ve begun receiving at-home hospice support to manage my symptoms and pain as safely and peacefully as possible. Much of the pain has subsided, and I’m spending my days reflecting on the absolutely incredible 44 years of this life I’ve loved so deeply. I’m doing my best to connect with friends and family, laugh and cry and mourn and grieve, but most importantly, celebrate. I’m holding as tightly as can be to my perfect little tribe with Doug Zullo and our sweet corgi, Rosie, my wonderful parents and incredible older brothers. And I’m working hard to continue to receive each sacred minute with as much grace, gratitude, wonder, and appreciation as I can.
Like every single one of us, I truly have no concrete knowledge or control over how much time lies ahead. But I do have legitimate hope that there remain good times ahead. I will embrace and celebrate each and every day as it comes. All I ask is that you continue to send me, my husband and our family your quiet prayers, your happy memories, your good wishes, your positive intentions. They have meant so much throughout all of this, and will continue to play a vital role as I traverse the unpredictable days, weeks, and who the heck knows — God willing, even months ahead.
As I am able, I will do my best to share more of the lessons I’ve been learning along the way in hopes that one or two will provide comfort and/or inspiration to some of you out there. And there are specific people I hope to have the chance to highlight who have truly saved and enriched my life beyond measure these past four years.
Until then, sending love and an abundance of gratitude to you all. And please, in honor of my life and spirit, remember to be kind to one another.
Love Always,
MMN