Small Pile of Miracles
Well, it’s been a while since my last MS update. I guess I have a lot to share with you all. I promise that I am not going to use ChatGPT to help me write any of this. I’m not even going to run my final copy through to check for errors or opportunities for grammatical improvement. This is partly because I’d like to get back to writing more frequently and this is good practice, and partly because I want to use this time to dig into parts of my heart and brain that I haven’t explored in a while without the help of thousands of computers. This way I think you’ll get my raw, real and unrefined thoughts. Sort of like a Grandparent who has lost all of their verbal filters. It’s more fun that way, isn’t it?
If you’ve read any of my past updates, you’ll likely remember the promise I made to myself. That promise was, and still is, a promise to openly share about the trials that I (and my family) go through to potentially, maybe in some small way, help someone else who is walking a similar path behind me. I feel like I've dropped the ball with this promise. I’m sorry for that. Aside from a few close friends and family members, I’ve not shared much over the last few years.
If we’ve bumped into each other and you’ve asked how I’m doing with my MS, my answer has likely been “meh, doing OK” or “I’m doing well!” Both were lies. Now don’t take that as I’m not doing well overall! I have so much to be grateful for. So many life changes outside of MS that are exciting and continually give me joy and purpose. I have many incredible people in my life. I look at the friends and family that I have in my life and am in awe. God has given me THE best people, and not just one, but dozens. It’s incredible, but I’d be telling another lie if I said that this disease hasn’t impacted all the corners of my life. Even the good ones.
Here is the truth. Physically, I'm not doing well. I’ll get into those details in a bit. (Phew… even typing that “out loud” felt like a deep exhale).
Anyways, hopefully this update is encouraging to you. I think that you'll find a little pile of what I believe to be small miracles. I think you’ll also find a little bit of dumb luck (for lack of a better term) along with some beautiful examples of human persistence. I’ll own the dumb luck part, give credit to God for the miracles, and the persistence really belongs to those who kept digging for answers on my behalf and encouraging me to do the same.
For the last few years, I’ve been on a DMT (Disease Modifying Therapy) drug called Ocrevus. Twice a year I’d sit in a chair for four hours and receive an infusion meant to kill off B-cells. To get scientific on you, for those of you who don’t know, your B-cells are a type of lymphocyte that protects the body by producing antibodies to fight off infections. Essentially, MS happens when your immune system mistakenly identifies your own nervous system as a troublemaker. It attacks the protective covering of your nerve fibers in your brain and spinal cord that result in pain, mobility issues, cognitive issues, and much more. By removing these B-cells from my body, my meds are intended to help reduce inflammation, protect my nerve tissues and slow down disability progression.
Less B-cells = Less attacks = Slowed Disease Progression. In theory anyways.
But like any DMT. It’s not intended to fix you. It’s not intended to reverse damage already done to your body, and it does not make you feel better. It only maybe keeps you from feeling worse. Over the years when I considered stopping the infusions, I’ve always been presented with the question, “well, what if you get worse?” It felt like a scare tactic type question with a legitimate hint of genuine concern that I could not answer. Sometimes I’d say, “well, what if it’s doing nothing for me?” Sure, I did not have new lesions forming on my brain or spinal cord, but maybe that’s because I was following a strict nutritional plan (the Mathew Embry special IYKYK), or maybe my body was fixing itself or maybe, just maybe.. IDK. So many maybes. You don’t know what you don’t know, so you keep taking it. It’s confusing and a bit disheartening.
I can also admit that I am privileged and fortunate to have access to any type of MS treatment. I am blessed to have health insurance when many others don’t. Of the whopping $180,000 a year that my drugs cost, I only have to pay $15,000 out of pocket. 15K is a lot of cash, but it’s not $180K. And while I'm grateful to have had access to these treatments, my eyes have also been opened to the cog that is the world of pharmaceuticals. As publicly traded corporations, the primary goal of pharmaceutical companies is to maximize profit for their shareholders. I don’t care what the ethical statements on their websites say. The makers of Ocrevus reported sales well over $65 billion in 2024 with net profits in the billions. Did you know that the average MS patient diagnosed in their 30’s is roughly a 2 million dollar profit center for pharma over the life of their disease? Now multiply that by the 2.9 million people in the world who have MS. Who would want to disrupt that!
Another fun fact. The maker of Ocrevus, settled a major $900 million whistleblower lawsuit in 2022 for allegedly paying illegal kickbacks to doctors for prescribing its MS drugs. To me and many others, that is a conflict of interest. Yes, I believe there are many great drugs and medicines that have improved and even saved lives. At the same time, I also believe that there is a systemic problem in medicine when treating seemingly becomes more of a priority than curing.
It’s funny how once you’re diagnosed with a disease, how much more you notice all of the drug commercials. Seriously, it feels like one out of every three commercials nowadays is an ad for a new drug or pharmaceutical. And why is everyone so happy? Every person has the biggest smile on their face. The sun is shining, people are hugging and smooch each other, playing tennis, jogging, and doing all the most fun activities. The music too! Even my kids know the Wegovy jingle and they sing it like they’re singing a Christmas song.
I suppose they’re all wonderful tools to distract you from the lengthy list of side effects and risks. Perhaps seeing these happy actors on these drugs will keep us from knocking harder on doors where behind them lies real change, or maybe even a cure. For the last few years. We’ve been knocking pretty hard on those doors. And by we, I mean mostly Amy.
Now back to how I’ve been feeling. I am pretty much in constant pain while I'm awake. Sleep is my great escape, but even that requires a hefty dose of melatonin and the occasional THC gummy to help me fall asleep. I learned that 50mgs is too much for me for either of those things! When I finally do fall asleep, I still find myself tossing and turning to get comfortable. Six hours is considered a good night's sleep. If I see anything later than 6am on my clock in the morning, that is “sleeping in”. I always have burning in my limbs and torso. The pain is a steady 7 out of 10 on the pain scale. I remember when I was just a little kid seeing a gas stove for the first time in a family member’s kitchen. Growing up in Fairport NY where your electrical bill is like $3 a month, all of our appliances were electric. When you’re five years old, that little blue flame on the gas stove is just too cool not to stick your finger in. When people ask me what the burning feels like, I tell them it’s like touching the little blue flame, only with your entire body.
My latest symptom is a crushing almost bruising pain in my shoulders and arms. Almost like the feeling you get after Tetanus shot. But this feels like a dozen Tetanus shots in each arm. Oftentimes it takes a good five to ten minutes before I can even move my arms in the morning. I spent the last year going to orthopedic and spinal specialists thinking it was unrelated to the MS. I had a handful of MRIs and x-rays and a nerve conduction study done. It was the first time I ever had one of those! As I laid on the table I finally decided to ask the doctor what they were testing for. She said, “Well, a number of things, but we’re trying to rule out ALS.” Geez, I wish someone had told me that prior to the test. Thank God, it wasn’t that. They did eventually find a torn labrum in each shoulder, but I guess that was not the root cause of all the pain. It was just the MS all along.
Then there is the cognitive stuff. It’s not uncommon that I’ll start sentences and often only get a few words in before I forget what I was going to say. To be honest, the cognitive symptoms can be more frustrating than the pain. Lastly, I’m exhausted, always exhausted.
I often think of two people when it gets really bad. I think of my Dad (who also has MS), who I remember working very hard for our family, also sometimes just needing to lay down on the floor and take a few minutes. I lay on the floor often. I understand now. I also think about a family friend who dealt with years of burning in her body so badly that she all but lived in a bathtub of cold water for many hours of the day. Instead of complaining about her circumstances, she shifted her focus to praying for people while she lay in her pain. I think about her all the time. I try to be like her.
I am not angry. I am not bitter. I’ve never once had the thought of “Why me?” I really mean that. I also do not feel sorry for myself and I don’t want you to either. I am just ready for something new. I am ready for some relief, and even just for a minute, feel like my pre-2019 self again.
Now back to those doors we’ve been knocking on for the last few years. Being part of many different MS support groups and Facebook groups, we were always tuned in to new research and advancements in treatment. It is no exaggeration to say that for a good 12-month period, every morning when I woke up the first thing I’d do is open a Google tab and search “New MS cure” to see if someone had announced a miracle fix overnight. It became an obsession, really. Almost a desperation to stumble across some magic pill that would regrow the myelin on my nerves. As if something were released, I could run down to Walgreens real quick and things would go back to normal. Amy would spend hours researching and sending me articles. Sometimes we’d be surprised with promising search results, but nothing that wasn’t 10+ years away from even seeing a clinical trial. Too many hoops and too much red tape.
I’ve been fortunate to meet many other people with MS around the world through social media. Through these connections, I started to see a few of my international MS friends completing stem cell transplants. HSCT, or hematopoietic stem cell transplantation, is a promising but fairly intense treatment for some people with relapsing-remitting MS (this is what I have) and rapidly progressing MS. It aims to stop immune system activity by wiping out the old immune system and using a patient's own stem cells to build a new one. I had a friend who had lost most of their eyesight due to MS. As a last ditch effort, they completed this treatment, over a few months regained their eyesight, and they were able to fully go back to work.
I’d see someone else post about completing this procedure. Then another, and another. All international stories of people regaining mobility and being able to walk on their own again, able to regain some normalcy. So many promising testimonies of successful transplants. Out of both skepticism and excitement, I’d message these people directly to ask about their experiences and always be encouraged by their responses. The discouraging part? None of these were happening in the United States. I wondered why?
If you’re a Hollywood buff, you likely know who Selma Blair is. She starred in movies such as Cruel Intentions and Legally Blonde. She has openly shared about her MS journey, which included HSCT. She’s been a voice for people with MS and a strong advocate for research. She had very promising results. If she can do it, it must be available to others?
We initiated a conversation with our doctors only to receive quite a bit of pushback accompanied by suggestions to maybe try a different DMT instead. We’d ask questions like, “Why isn’t this offered regularly in the US?” and “Haven't you seen the research on this procedure working?”. We found article after article with scientific evidence of positive results. In-fact, over 82% efficacy! Russia, Mexico, the Caribbean and many other countries were opening up clinics to offer HSCT to MS patients.
We continued to push for more answers with my doctors and always received reluctant responses like “yea, we think it’s a promising option, but…” followed by what to me seemed like ethnocentric statements about potentially subpar treatments from places outside of the United States. “Sure, you can go to Mexico, but it wouldn’t be my first choice for you.” seemed to be a common theme. We asked about clinical trials somewhere in the states? Only a few were happening, and for some reason I wouldn’t qualify for it? Perhaps the biggest obstacle was, even if they could do it here in the states, it will never be covered by insurance.
Back in 2019 there were some locations in the United States offering HSCT, but you had to pay completely out of pocket. World renowned doctors practicing at some of the country's best hospitals were treating patients just like me with very favorable results. Places like Northwestern and the Cleveland Clinic. That was until the FDA decided to abruptly shut them down. They claimed that there was not enough research, it was too dangerous, and there was a lack of proper protocols, etc. Did you know that 40-50% of the FDA’s budget is covered by user-fees? User-fees is code word for Pharmaceutical and Medical companies. Are you seeing a trend here?
With reluctant blessing from my doctor to go to Mexico for this treatment, we started to do some initial planning. A handful of you likely heard me share about the potential for a trip like this in our conversations. I sort of sat on this idea like a mule. Yes I wanted to do it, but it would be $70K cash, I’d have to be in Mexico alone for eight weeks. I was not afraid of the procedure but I was fearful to be away from family in an unfamiliar country. I’m supposed to work. I’m supposed to provide for my family. I’m not supposed to get up and leave to take care of myself. Right or wrong, it felt dishonorable. A specific few of you would ask me every week, when are you going to Mexico as if it were a quick trip to an all inclusive resort for just a few days. I’d answer…IDK. My resistance or mule-like lack of forward movement to make this trip is the dumb luck I mentioned earlier. The only movement I made was to a place where I built up so much resentment towards our medical system and lack of progress for MS fighters like me and my Dad.
All along the way, my wife Amy, who if you know her, has bull-dozer like tendencies when it comes to making things happen. She can be a little scary with her process, but it’s all out genuine care and love. Behind the scenes, she had been compiling HSCT research, influential medical contacts, and carving out opportunities to build some advocacy here in Rochester to fight for a stem-cell transplant for me. Through her persistence, she somehow convinced a Hematologist here in Rochester to review her research and sit and listen to us while we pleaded our case. As a doctor who does stem-cell transplants for pediatric leukemia patients, surely he’d consider one for me? The idea seemed crazy to me. Not to Amy.
We finally had a meeting with him in 2022. He said he was apprehensive to meet initially, but after reading through what Amy sent him, he wanted to give us the courtesy of a meeting. He was kind, gentle and listened to us. He didn’t make us feel like we were crazy. He said that the research looked promising, but it would be an uphill battle for the hospital to allow him to do this. It would not be covered by insurance and the costs would be substantial. He promised to take the request to higher-ups at the hospital and he’d get back to us.
A few weeks later, we received a message in my MyChart. The answer was no, but he wished us luck. Disappointed, but not surprised. Amy kept searching, for years. I kept lazily digging my heels in about Mexico.
Through more of Amy’s research and looking for someone who would be a medical advocate on my behalf, a few years later we crossed paths once again with this Hematologist. Without getting into the details, it was a miracle connection. Amy presented some new findings to him through MyChart. We held our breath. After a couple of back-and-forths via email, this September we received a message from him.
“I will do your transplant”
I had pretty much stopped checking my MyChart messages. Even the 2-step authorization code to get into my MyChart gets sent to Amy’s phone. She called me instantly ecstatic with the news. I was skeptical but also excited. My laziness about going to Mexico was somehow justified (the dumb luck). Obviously God was doing His thing to no credit of my own. We set up a meeting with the Doctor to discuss next steps. I was excited to learn what's next, but more excited to hear him say “I will do your transplant” in person. It felt more real than a MyChart message. He indeed said those words.
While sitting in his office there were a lot of tears. He said his passion is patient advocacy. We felt that from him. He listened intently. We discussed realistic expectations. He felt like a therapist. Alongside him, his assistant, and Amy, we spoke about how the last six years of how my disease has deeply impacted my family. In ways I’d never really thought of.
Through a small pile of miracles, the persistence of Amy and my new Hematologist, and my stubbornness regarding Mexico, I will likely be one of the first MS patients to have a stem cell transplant in Rochester. My Neurologist, Hematologist, and some consulting doctor from Northwestern are all working together. Four years ago, I would have said “impossible!”
I remember sitting at one of my favorite cocktail places here in Rochester with one of my best friends sharing with him about going to Mexico. It reminds me now of a lyric from one of my favorite artists, Ken Yates. “Some of the greatest resolutions never make it home from the bar.” In this case, I’m glad.
While there are a lot of details to figure out, things feel hopeful. We still need a few miracles, but we’re working hard and trusting God for everything to come together. We’ve locked in April 15th as a start date for the transplant. While the hospital has confirmed the procedure, insurance is not going to cover any of it. We’re required to put down $50,000 on March 1st, with potentially up to another $120,000 due at the end of the procedure. Yea, that is a lot of cash. I’ll need to sell a lot of clocks!
Truthfully I struggle with the thought of “Am I even worth spending that much money on?” I don’t know how to answer that, but I do know that my kids and Amy are worth it. My friends are worth it, my extended family is worth it. The people who’ve helped me along the way are worth it. I want to feel relief so that they can feel relief.
Ok. I know this post has been way too long and I’m likely leaving out important details, but to close things out I thought it would be important to share what the process is going to look like and some of the risks & benefits:
How it works
Collecting stem cells: A small dose of chemotherapy is given, and about two weeks later, stem cells are collected from my blood using a process called apheresis.
Rebooting my immune system: I will then be given a high-dose chemotherapy regimen to suppress or ablate my old, faulty immune system.
Infusing stem cells: The collected stem cells are infused back into my body to rebuild the immune and hematopoietic systems.
Benefits and risks
Potential benefits:
Long-term suppression of MS activity, with some studies showing high rates of no evidence of disease activity (NEDA).
Reduced relapse and progression rates.
Reduction in brain lesion volume.
Significant promise in promoting myelin repair by differentiating into myelin-producing cells to rebuild damaged sheaths
Potential risks:
HSCT is an intense and risky procedure, with a risk of treatment-related death, although modern clinical trials have shown lower mortality rates.
Possible side effects include blood and lymphatic system disorders.
I’m not afraid of the procedure itself, but I am dreading some of the things it will require. It is about a six month recovery time which includes a period of isolation during the chemotherapy and after the infusion of stem cells. I’ll likely have a couple of weeks when I’ll need to live alone to avoid complications. Time away from family, work, my dog, my friends and avoiding some of my favorite activities will be a part of the process to ensure a favorable outcome. I’m not looking forward to that part, but I am trusting the process and God’s plan.
In the end, aside from the potential of feeling better, my hope is that a successful procedure done here in Rochester will open up doors for others in the future. I get excited thinking about maybe one day, Rochester being a place that provides this treatment to many around the world. I hope a domino effect occurs where the status quo is welcomely challenged. I hope insurances see the value and benefit and begin covering stem cell transplants for others.
Alright, I think that’s it for now. Thank you for reading and thanks for asking how I’m feeling. Now you know the truth :)
Whatever it is that you’re fighting through. Keep it up. Love you all.
-Jeff