Over the course of the last few months, I’ve connected with fellow MS’ers on Instagram beginning with my weekend takeover of the Shift.ms channel. This impromptu takeover happened the weekend prior to my HSCT journey kicking off at Cleveland Clinic. I’ve directly connected with many people around the world. I asked my followers-turned-friends if they had any residual questions about HSCT.
Q: What progression and symptoms have you experienced with your MS?
A: I was diagnosed with MS in June of 2013 from eye pain in my left eye. Turned out, I was diagnosed in less than 24 hours with optic neuritis and that was a contributing factor to my MS diagnosis the same day. You can read more on my diagnosis story in my initial blog post. I had one relapse that October where I went almost completely blind (and regained my sight) and then was relatively stable until February 2018. During this time I did not experience pins and needles, electrical shots, vision changes, numbness and tingling, or any other common MS side effect.
From 2018 to present, I have had a swift and steady decline in mobility, energy and balance. I started using a cane in autumn of 2020, and purchased my first rollator in the beginning of 2021. I had lower body paralysis as a fun side effect of chemo twice during harvest and transplant so was incredibly grateful to already have these aids at my disposal. I still need and use my mobility aids to get around today as I heal.
The interesting thing is that I am a MS anomaly — I have not experienced further disease progression according to the number of lesions in my brain and spine. All of my MRIs from 2018 to 2022, are stable – no new lesions, no advancing old lesions and nothing active. Yet, despite “good” MRIs, I have had increased neurodegeneration and disability. This was a significant contributing factor to why as a patient, I failed Ocrevus and I qualified for HSCT through insurance.
Q: What MS disease modifying therapies or DMTs have you tried?
A: I was initially put on Rebif in 2013, then tried one does of Plegridy in 2015 and had an awful allergic reaction. I tried Copaxone for several months before graduating to Rituxan/Rituximab for infusions in 2018. Lastly I tried Ocrevus in 2019 up until transplant.
Q: How do you differentiate a symptom versus an attack or disease progression with your MS?
A: I was told following diagnosis that a relapse was a new or worsening symptom that lasted more than 24 hours. When I was first in the hospital, when I lost my vision and when I initially started to have walking difficulty, I was given three days of IV steroids. In the first two instances, the steroids helped. With my increased walking, balance and stamina changes, steroids offered little to no relief and did not slow disability progression. It was a necessary evil I had to endure to prove this wasn’t a relapse but rather neurodegeneration.
My neurologist was wonderful at explaining the difference between disease activity and neurodegeneration. Our current MS medications are designed to prevent new lesions from forming but they do absolutely nothing to help current damage. I unfortunately fall in the “damage already done” category therefor the medications on the market couldn’t and didn’t help.
Over the course of the pandemic my walking went from strained to incredibly difficult probably due in large part to the fact that the vast majority of my lesions are in my cervical spine. I knew it wasn’t a relapse, because disability progression was consistent.
Q: How did you decide to pursue HSCT?
A: All the credit here goes to my medical team. HSCT was not even on my radar. I heard Selma Blair had received a stem cell therapy treatment that was considered experimental and expensive. I assumed it was out of my grasp therefor I did not give it much attention. Following my six-month infusion of Ocrevus in February, I had an in-person consult with my neurologist. He said, “I think you should consider bone marrow transplant.” I wrote about that consult here. I remember hearing him but not comprehending. I had 10,000 questions. My friend Maggie picked me up from the appointment and I got in her car, fastened my seat belt and burst into hysterical tears. I tried to explain everything I was just told. I was both overwhelmed with emotion and numb.
The following day, I rang a physician friend of mine who just happens to be a badass bone marrow transplant oncologist. I ugly cried on the phone to him and he walked me through the clinical process, the oncology outcomes and the process at Cleveland Clinic. I also began my own extensive research on the HSCT process. I learned that there are several clinics in Mexico and found resources from other MSers in the UK and around the globe who were sharing their story.
I was scared but for the first time since my decline truly took hold, I had hope. There was no way I was walking away from this opportunity.
Q: How did you afford HSCT?
A: My transplant was covered under my employer-based insurance. I was not a part of the ongoing BEAT MS clinical trial in the United States.
Q: What were you most scared of in advance of HSCT?
A: It seems silly in hindsight, but I was so scared to get my central line catheter in my chest. Having never had chemo, I couldn’t wrap my brain around what that would be like or the effects it would have on my body. So, in absence of imagination related to chemo, I chose to focus my fear and uncertainty on having a central line with three lumens coming out of my chest! I wrote about my fear, the amazing surgical nursing team and the glory of opioids. Read more here.
The thing is, that central line is freaking magical and I truly had nothing to fear! After a few days, the swelling in my neck and chest went down and I barely even registered it was there except when I was changing my bra. It was a pain to take a shower because I needed to wrap my chest in Press n’ Seal, but I managed. The function of the line allows you to have blood drawn and receive medication and supportive care without needle pricks to the arms. Not so fun fact: potassium — one of the supportive care medications often administered — burns and hurts like nothing I’ve ever felt when given direct to the veins in your arm, but you don’t feel a darn thing when it’s given in the central line or PICC line.
I named my catheter, Inspector Gadget. It was crucial for stem cell harvest, or apheresis. See photos and read about that day. Once harvest was confirmed, the catheter was removed, a band aid placed on the small opening in my chest and I was sent home to await hospital admission a month later.
Q: What surprised you before, during or after HSCT?
A: Recovery was brutal. I thought chemotherapy and my month-long inpatient stay would be the hardest but it wasn’t. I was so sick that my body blocked a lot of the hard days out. I have patchy memories of the really awful days, +3 through +8.
Recovery is long and arduous. I have never experienced the full-body wrecking that is bone marrow transplant or the complete lack of energy because I’m rebuilding an immune system from scratch. I don’t think you can be prepared. I don’t think others can understand. It is felt or experienced but not understood. I wanted to feel better faster. Despite being told it was a year-long recovery, I wanted to be running marathons immediately. Patience is not my virtue. (Please note: I have never in fact run a marathon and even if I was able bodied, I don’t think I ever would).
Q: How are you doing post transplant?
A: This year has been one long emotional roller coaster. I am trying to take it one day at a time and get up and tackle what I can and be content with whatever that happens to be for the day. Recovery and healing is gauged week-over-week or even month-over-month. So while I’m taking it one day at a time, I can’t gauge success on any given day.
At the time, I couldn’t imagine returning to work, and then I did. Then a few weeks later, it got easier. I hit 6,500 steps one day and the next did no more than 2,500. I made myself dinner. I hosted a dinner party. Each thing seemed insurmountable the week prior to me accomplishing that goal. I have no clue where I will be a month from now let along six months.
I’m feeling good. MS fatigue and heat intolerance are all but gone. I used to have poor circulation in my hands and feet and they are a normal temperature and color now. I get stronger and have days when muscle groups that didn’t work before, come back online.
I am not cured, but I am healing. And my healing looks vastly different from my friends and fellow HSCT warriors. Comparison is hard and needs to be managed. My hope is strong as is my determination to do everything in my power to support my body, mind and soul.
Have a question I didn’t answer above? Leave me a comment or get in touch directly!