I was told going into the Cytoxan priming (chemotherapy) that every MS symptom I ever had would flare like your worst relapse — this from other HSCT patients, not necessarily my medical team. I understood the words but I didn’t know how it would manifest in my body. I think this gif is apropos of exactly what happened.
A quick decline
I went to Taussig for my daily check in and care and went home afterwards as usual. By bedtime, I knew I couldn’t (or shouldn’t) try and walk up the stairs because I was very unsteady. With the assistance of my husband, I was set and situated for bed on our living room couch on the first floor. I woke around 10:30pm and needed his assistance to get to the bathroom. I had him push me in my fabulous Rollz Motion rollator to conserve energy.
I took a few steps towards my bathroom, which resembles Harry Potter’s cupboard under the stairs in our 1930s home, and I collapsed like an accordion. Luckily I am quite adept at falling, no bracing on wrists for me. I fell backwards on my booty, unharmed but I was 100% stuck. Neither of my legs was working or moving at all. I could still feel sensation, however every nerve stopped receiving or firing signals.
My husband paged the medical oncologist on call. I couldn’t help with any of my bodyweight to get up off the bathroom floor. We decided to dial 911 and head to the emergency department (ED) for possible (probable) inpatient admission. Very important to note that I pay extremely high property tax and I am totally fine with that when EMS is called and they arrive in two minutes with a remarkably attractive crew.
18 hours in the ED
The attractive and burly EMS crew carried me off the floor, outside onto the gurney and off with sirens blaring, we went. A short drive and admission to the ED later, I spent 18 hours on an awful ED bed waiting for an inpatient spot on the Bone Marrow Transplant (BMT) floor at Cleveland Clinic. My heart goes out to our healthcare professionals. There is a global shortage of nurses and the real-life impacts are felt in every corner of every hospital and for every patient trying to access care.
In those 18 hours I saw wonderful nurses, the ED doctor, a neurological resident, the head of the MS team at Cleveland Clinic, spoke on the phone with my transplant nurse, saw a BMT Nurse Practitioner, spoke to my MS doctor, received a CT scan of my head and tried and failed to sleep.
Inpatient BMT admission
I was moved to the BMT floor and had the best care. My neurologist came to visit me and chat about what happened as well as the on call BMT doctor and resident. Despite how scary this reads, I wasn’t scared. I didn’t think that what was happening was permanent. My blood cells bottomed out by design, they call this nadir. What happened was expected but not anticipated and it’s hard for me to write or explain that distinction. I needed rest, medications and a safe place (without falls) to hopefully recover my blood counts and regain mobility.
I spent the next two days with nurses who helped me to and from the bathroom, helped position my legs because I couldn’t move them and took wonderful care of me. Slowly, little by little, I regained movement and sensation and the tingling and numbness abated.
Fear and hope
Not being able to move either of my legs was a new low. But through this episode, I was comforted knowing my body would build back up. So I had restless sleep, a mountain of pills and a lot of time to think about this process. I’m walking through hell. I’m here for this fight. I know, and for the first time in my life accept, that I have zero control over my body. I also know my body will keep going. Our bodies are amazing. Science is amazing. I’m giving over to the wonder and awe of both.
Amidst this immobility, my bone marrow is tirelessly working, creating millions of stem cells in preparation for harvest. I have a compassionate and capable team rooting for me. This team is measuring everything to document and discover a new path forward for other MS patients. I have a village rallying around me – this includes breakfast deliveries, sitting by my side in the ED, being part of my home care consults and offering to mow our lawn.
There is a huge difference between planning and preparation and being in the thick of it. I’m in it. I’m living it. It’s my reality.
I’m home now, recovering with my generous and wonderful parents who, lucky for me, have a ranch style house.
I’m fortunate but there’s nothing easy about this.