Fine Tuning

Today was a big deal, for little reasons. I’ll have to sum-up the last 2 1/2 months to fully explain why, so bear with me.

In June/July of last year, I started my treatment plan for an autoimmune version (Special Edition) of Cerebellar Ataxia, a condition that interferes with the messages sent from my cerebellum, the part of the brain responsible for movement. ALL MOVEMENT. You need to move to stand still (balance is just shifting, or moving, your weight and body parts to stay upright). You need to move to speak, more than you might think. You need to move to do literally everything, and so life became very difficult, but with an aggressive treatment plan in place, I started looking forward to the near future and everything I planned on doing once I overcame my own body’s evil plot to bring me down. It should be noted that this was not my body’s first attempt at murdering me, as I had previously survived a massive heart attack in December of 2012.

A big part of this treatment plan came from the amazing doctors in the Neurology department at the Mayo Clinic in Minnesota. After my insurance company approved the visit there, I scheduled a week-long stay, which was made easier because my cousin Vinny lived nearby and was willing to house me and transport me back and forth on a daily basis, which to this day I haven’t shown enough appreciation (Thanks Cuz!). I went into it with high hopes, but as usual, my health insurance ruined everything. They approved some doctor visits, but no testing (labs, imaging, etc.), so when the neurologic team ordered multiple MRI’s, PET scans, bone density scans, etc), the insurance company submitted them for prior-approval with no time-frame on approval except their standard 2 week waiting period, despite the fact that I was out-of-state, seeing highly in-demand doctors, and EVERYONE knew prior to me leaving home that these tests would be ordered. After 1 week, we still hadn’t received the needed authorization to have these tests done, so I came back home, and over the course of 2 additional weeks, I had all of those tests done locally, and then submitted all of those results back to my team up at Mayo. They eventually got back to me with some recommendations on a treatment program, but not the treatment plan I actually started, for several reasons. I am not a doctor, nurse, pharmacist, or any other version of medical professional. The treatment method recommended consisted of a new-to-me treatment (plasmapheresis), and 2 new-to-me drugs (Cytoxan or Rituxan). Because both drugs are chemo treatments (Rituxan is not technically a chemo drug, but is used in the treatment of some cancers), which have to be administered by nurses certified in administering chemotherapy IV’s and monitored by doctors familiar with chemo medications and the dosing of said medications, I was quickly assigned another neurologist (I think we’re nearing 8-9 different neurologists in 2 years), this one a neurologic oncologist. I absolutely love my newest doctor, and between him, my endocrinologist, and my primary physician, I felt, and still do, that my condition was in good hands. The problem with the whole situation was there were a lot of people trying to treat an extremely rare neurologic disorder, and the primary administrators of the treatment were 300 miles apart and worked for different companies (Mayo in Rochester, MN, and Aurora St. Luke’s in Milwaukee, WI) so communication between the 2 teams didn’t happen, at least not that I’m aware of. When I saw my new local neurologist, we discussed the plan and their recommendations for administering the plan, and I was admitted into the hospital that afternoon and began treatments later that week.

The plan was relatively simple. Every 2 weeks, I received Plasmapheresis on Monday and 2 days later, I went to the Vince Lombardi Cancer Clinic and received a Rituxan infusion. I was doing well physically and handling the treatments, at least initially, but shortly after this treatment plan started, I started having some side-effects that I attributed to the Rituxan. A few days after the infusion, I started experiencing joint pain in my wrist, back, neck, knees, and feet. Not all at once, but 1 or 2 of them after each treatment. I would struggle through the 2nd week of this treatment cycle for about 10 weeks before I talked to my doctor about it. My thoughts at the time were, “Is it even worth having the treatment if I only get 4 days out of 14 where I can actually experience any improvements that were being made?” Doc agreed and we moved it to every 3 weeks instead of 2 and that helped a lot, but each time I had the Rituxan treatment, the pain worsened, and with each additional treatment, the duration of the pain was longer until I was back to the same situation as I was on the biweekly schedule. This brings us to the last infusion I had on April 19, 2019. I went in early that morning and had the infusion as usual. The few sessions before that I had been experiencing some pretty severe pain, and I allowed that to give me some anxiety about the impending pain. In addition to knowing it was looming ever-closer, I had just tapered down on my Prednisone prescription from 10mg to 5mg (I was on 100mg per day at one point!), and I was already miserable (lots of inflammation so lots of pain), so I knew this one had potential to be ugly. The following Saturday, 3 days after the Rituxan infusion, like clockwork, my back started aching and by 7:30 that night I had to lay flat in bed and fight for every second of sleep I could get. The pain was still there on April 22nd, my next scheduled plasmapheresis, and while it wasn’t as severe as it was 16 days prior, it was still debilitating. For 16 days it took almost everything I had in me to get out of bed, use the bathroom, and get down the stairs. I f***ing love my coffee in the morning, but if my wife Meghan (the most incredible person in this story, btw) hadn’t prepared the coffee maker every night so I just had to push start, I would have gone without, because preparing a pot of coffee to brew would have been too painful.

To further expand on the pain involved with this last treatment, let me try and explain just one aspect of it. I’ve had to use steroids for inflammation since my mid-20’s. I always tried keeping the dosages low and the length of time I used them to a minimum, but around the age of 35, I had a pretty severe flare-up of my psoriatic arthritis in my knees. I had them both drained and they shot them both full of cortisone, which had become a regular procedure around that time (I went on to have 3 knee replacements, all on the same knee), and prescribed Prednisone as a follow-up procedure. I ended up being on that dose for 3 months or so, and I didn’t taper off at all, I just stopped, cold-turkey, and a week later, I started experiencing the strangest pain. I later discovered that I was experiencing Costochondritis, inflammation of costochondral junctions of ribs or chondrosternal joints of the anterior chest wall. Essentially, inflammation where the ribs attach to the sternum. A wrong move would quickly cause this immobile joint to reach out and tag me with a quick, brief pain strong enough to temporarily knock the wind out of me. I never went off of Prednisone without a slow taper after that, but even when slowly tapering off I started experiencing this not-so-sensational sensation. As I started tapering down from my 100mg dose, I was cutting the dose by large percentages, and I started experiencing this pain again. but this time it was where my ribs attached to my spine. This last time was so severe that I felt like a super-ball (not the big fist-sized kind of super-ball with s**t inside of it, but the kind my parents played Jacks with) was lodged directly above my rib and below my skin, and every single time I twisted, stood, sat, looked up or down, left or right, I wanted to scream as that super-ball rolled over that rib, jamming it downward, causing it to once again knock the wind out of me, a few times causing me to fall back into my chair, stumble while walking, and once took me to my knee, setting it off all over again. The pain wasn’t terrible, maybe a 5 or 6 on a 1-10 scale, but it happened dozens of times a day. I couldn’t sleep. My mood, which for the most part has been superb despite my situation, was slipping quickly. I was scheduled to have plasmapheresis on April 22, and Rituxan on the 24th, but I also had an appointment with my oncologist on the 24th, so I pushed the Rituxan back a day to the 25th so we could address the pain before putting myself through another 3 weeks of misery and suffering. I also had a video-conference follow-up with Dr. Z at Mayo scheduled for April 30th, so I thought it best to postpone. It turns out my doc agreed with me. We held off on the Rituxan, and I had my call with Mayo exactly 1 year after my initial visit to them.

The call was relatively brief, maybe 45 minutes, but I am thrilled that I scheduled it. When I explained to the doctor there what therapy regimen we had been following for nearly a full year, she asked me at least 3 times to repeat myself, and she was stunned. When they use the Rituxan, it’s a 1G dose, a follow-up 1G dose 2 weeks later, and then every 6 months after that with continued monitoring of bloodwork to ensure antibody counts were as low as they should be. Needless to say, changes need to be made. I’m waiting for the 2 doctors to speak, and then I’ll have a new plan going forward, probably a LOT easier for my body, and my mind, to handle. It’s been 36 days since my last Rituxan treatment, and every day now I am stronger, more coordinated, and just plain old-fashioned better, but it’s not just the meds helping me…

Sometime around Labor Day of last year, my wife Meghan had an aunt and uncle in town, and her uncle stopped in for a visit. We talked for a bit, and he mentioned that he had changed his diet to combat his cancer. He won the battle, and inspired me to start researching diet, and if it might be able to help my condition. I spent the next 6 months reading blogs, scientific research papers, and comments on various websites, eventually reaching out to some real experts (doctors, nutritionists, etc.) and a few individuals who were helped by a diet change. Earlier this year, I was severely suffering with sciatica issues on my right side, so I reached out to my nephew, Dr. J, a student at Palmer College of Chiropractic in Davenport, Iowa. He helped convince me that a chiropractor was the way to go, and after 5-6 sessions over 2 weeks, my sciatica was almost gone, but he also asked me about my diet and any potential food allergies I might have. So did the doctors who saw me at my local chiro office. This motivated me to really dig in and find a plan I could follow, and get in the right mindset to commit to it. On February 22nd, 2019, I started my new plan.

I need to be clear about something before I get into the details. I am not recommending anything to any of you. I don’t care what you eat or why you eat it. One of my least favorite people on planet earth are the ones that preach their values and beliefs on others, usually taking a simple difference of opinion and escalating it to name-calling, and many times much more than that. I do me my way, you do you your way. EVERYTHING is that simple. I’m not preaching at all, I’m just sharing my story. That’s it.

Those of you who know my story know this started in Feb, 2017, when at 6′ 1″, I weighed 273 lbs. After the ICU and nearly 3 months of NO FOOD and a severe lack of fluids, I was down to 203 lbs. After a few months of high-dose steroid treatment, I was back in the 250’s again. The prednisone wasn’t helping me lose the weight, despite being down to only 10mg per day, and then I made the change.

No meat or fish

No dairy

No eggs

No gluten

No added sugars

Minimal oil use, really minimal

I started this on Feb 22. On Feb 20, I weighed 253 lbs. I immediately began shedding pounds at a startling pace. Eventually the weight loss slowed, but today, 11 weeks after making the change, I weighed-in at 220.2 lbs! My energy level is through the roof. My psoriasis is clearing up (it’s about 50% improved fro the start date. I have been able to exercise, at least it’s exercise in my book. I’m getting stronger every day and I really believe that by the end of this summer, I’ll be able to walk short distances without a walker. Hopefully. That is the most optimistic thing I’ve said since this started.

I’d like to thank those of you who continue to think of me, pray for me, and visit me. It means the world, and that support is a huge part of my recovery. Thanks to all of you!