Knowledge. Story. Rest.

As I slowly and surely recover from chemo in solitude, I have a lot of time to think and remember how I got here. I recognize lessons learned and forgotten. There's no deep secret insight from me. My head is shaved, but that is as close I get to being a Buddhist monk.

I strive to keep this blog informational and not a place for an emotional ramble down an MS-fevered memory lane. There will be no angry, weepy tirades, or gross bodily functions, I promise. But I am a patient in a hospital. Things might get human. Reader beware.

I heard people with MS are now following this blog. So I will initially focus on a couple logistical things I did, or should have done, as a newly-diagnosed MS patient.  Then there will be a story.

Knowledge
The first thing I did right. I followed my doctor's prescribed anti-inflammatory and disease modulating recommendations diligently. I am convinced those actions in 2007 saved my vision, which is still very good today.

The second thing... I did not do right. I went into denial about the future, wasting time. Now I know. Patients in early-stage MS have a lot more time than they realize to think and read about what is actually going on in legitimate medical research. This allows MS patients time to consider treatment options down the road, in case they have a new progression of MS crisis that can cripple and kill, as I recently did.

Recalling how I actually did things related to my MS care, I now remember an old parable about a kind cat that saved a drowning bird, then ate it a bit later.  I should have remembered that parable sooner. It would have got me thinking about medical contingency plans.

Back in 2007, I wish I had bookmarked http://clinicaltrials.gov to learn about legitimate medical research trials much earlier than I did. I also should have bookmarked and learned earlier to navigate http://www.ncbi.nlm.nih.gov/ for the fascinating wealth of curated science data there.

Using those websites would have kept me better-aware, and would ultimately have helped save time and frustration. I could have sorted through facts and fictions faster, cutting through most of the advertising BS and the often dangerous ideas of good- and bad-intentioned advocates that clog and cloud the inter-webs and modern media.

For medical research, the NIH website curates among the greatest libraries civilization has ever known. Anyone can read what is there. It all belongs to the world. I now have a renewed mindfulness to not rely only on a doctor, an individual blog, Google, Facebook, or a list of links on some company or association's website. Those are merely hints of breadcrumbs, often helpful, but often screened by and attached to conflicting agendas. The NIH websites seem daunting, but they are searchable. If you want to find gold, look where the gold is and start digging.

Story
Of course, I did not plan my MS treatment contingencies… I did it wrong, in denial. Back in 2011, I abruptly became an early-stage MS relapsing-remitting MS patient who had just failed the pharma industry first-line standard of MS drug therapy, betaseron. I was out golfing badly with friends when excruciating burning pain hit my hands. I screamed and swore like I was on fire. My friends must have thought I was crazy. They finished golfing and I sat in the cart. I knew it was the MS. A doctor would have just made me suffer more, so there was no sense further ruining a pretty day.

Medical evaluation came a couple days later. Describing neurological pain to a doctor, or anyone, is hard. Imagine pouring gasoline on your hands, lighting it with a match and just letting it burn. It never gets better. I could choose to barely live in a fog of sedation that still hurts, or get used to and accept the pain so as to live an aware life. That's what I did. Nurses still ask me what my hand pain is on a scale of 0 to 10. They look at me cross-eyed when I say it's a 10 and I take nothing for it. I just thank God that the pain stays at 10 without throbbing back and forth. Consistent pain is predictable, and then sort of ignorable. Maybe someone thawing out from severe, finger-and-toe-losing frostbite feels this level of pain. I talked to a mountain climber who once had that kind of frostbite. His pain description seemed to match mine. It's the periods of healing that are worst, he said. New nerve growth adds new pain. My meditation now is that painful healing of nerves is something that, if I am lucky, I will get to experience from MS recovery.  It's just nerves, not missing fingers, right? Don't be a wuss. Man up.

An MRI scan showed the likely pain cause was that a new MS lesion popped up in my spinal cord. The pain was the least of my problems. The lesion was a sign that MS was attacking my spinal cord. If a new lesion hit my brainstem, it could be quadriplegic hell.

So the neurologist advised that I was getting bumped up to the next level of more aggressive drugs to stop the autoimmune attack on my central nervous system. MS had been grinding me down since the mid 2000s, and now this hand pain was portending faster crippling progression. I was happy to have the new FDA-approved drug, Tysabri, to try to stop it.

Back then, I did not know, that by 2011, Dr. Burt and other top immunologists had already discovered and confirmed a lot about how chemotherapy and hsct can reset an immune system gone awry. Burt's scholarly papers had documented many very promising results with early-stage Phase 1 and Phase 2 treatment subjects.

It took me awhile to comprehend that after decades of very early-stage FDA medical research, FDA phase one through three trials finally get into the "hey this looks like something that can help treat patients and not kill too many of them" stage.

Then I realized that in phase research trials, the medical reality for doctors and patients is that any FDA-approved treatment is still decades into the future, and not of use to current individual medical crisis.  Criteria for any patient getting into a phase trial are extremely stringent. It's an extreme long shot to become a human lab rat. Timing is key, as the condition of the patient must meet the needs of the carefully designed research trial.

So that spins my story back to 2011, when I knew nothing of Dr. Burt.

My cousin, Cynthia Gibas, who is a professor of bionformatics at North Carolina State University, had recently attended a conference. The field of bioinformatics has little or nothing to do with hsct, but it does involve complex analysis of biological information such as genetic code. Anyway, this big-brain cousin of mine had heard from another biology-related professor that "something interesting with MS research was going on at Northwestern."

That "something interesting" between stories of my mom's silly cats, and me munching holiday turkey and dressing, is about all I remembered.

Days later, in idle curiosity, I looked online and found Dr. Burt's research via a google search. Lucky. But then I read it. Killing of the immune system with chemo looked terrifying! Thank GOD I'd never have to do that, I said.

I followed through to the NIH patient trials site anyway. There were no trial openings. The criteria of closed/filled trials may have excluded me anyway. Never mind. I bookmarked and forgot about it.

I just  got on with life as an agricultural technology writer and marketer. Good work, lucky to have it. Along the way I continued my troublingly more slow attempts at life adventure. My body worked OK. I ate much healthier than 85% of Americans. But MS was kicking my ass out of the active lifestyle I loved. At some point along the way, I realized that the physical strength of my aging father had surpassed mine once again. That kicked me hard, even though at age 70 he can still outwork most men half his age. He's tough, to put it mildly. I accepted and got over it.

In less than two years, Tysabri began really failing me. My right leg stumbled more. Summer heat made me stupid, weak and half-blind. Worse, using Tysabri was putting me at higher risk for a horrific, deadly brain infection called pml. PML is caused by an innocuous little virus called JC. JC only becomes a problem when bathed in the super MS drug, Tysabri. More than half the people in the world carry JC. Like the majority of microbes in the human body, it causes no ill effects in anyone. Unless, sometimes, if you are on Tysabri.

But a blood test on me showed my immune system was already acting aggressively to attack JC. My neurologist, looked startled and concerned when he viewed the results in front of me. He attempted to regain composure, and said they were getting better at catching the pml infection before death. Instead of dying, patients just ended up crippled and alive.  Get me off this shit! I told him. I got off Tysabri immediately. The neurologist's plan was protective steroid infusions, and possibly transition me to new not-yet-approved drug, but probably just put me back on Tysabri after a few month's break. Because nothing else worked better…

My life entered a stage thinking about last-resort, calculated and efficient acts of desperation. You can guess what that means. But I had not yet given up. I started looking at research studies, but found I did not qualify for any.

Except, I found my old bookmark to Dr. Burt's work. From there I found that the Phase 3 patient trials had opened. The criteria showed that my age, failed drug treatment history, generally healthy body and aggressive inflammatory MS likely qualified me as a human lab rat for the trial. I sent a carefully crafted proposal to the study administrator and was invited to meet Dr. Burt. I booked a flight.

But before the meeting, my MS got worse. I woke up and my legs would not move, locked up by extreme relapsing-remitting inflammation. Brainstem lesions had arrived. A new MRI showed six. Welcome to hell, Wayne.

Fortunately, doing dialysis plasma exchanges with a catheter in my chest for months in Minneapolis reduced enough autoimmune antibodies from my blood for me to move again. A bit. This rapid recovery after removing antibodies was further proof to me, and I believe to Dr. Burt, that fixing my immune system with chemo hsct would address the majority of my MS issues. My nerves were likely not yet irreparably damaged. However, allowing the MS attacks to continue much longer would probably take me into nerve-damaging secondary progressive MS.

My neurologist disagreed and wanted me to wait for another drug and go back to Tysabri. I fired him. I'd followed his standard of care long enough. The time for decisive action to take advantage of an extremely rare opportunity with Dr Burt was now or never.

My health insurance company, BCBS Minnesota, has refused on three appeals to pay for the experimental treatment. It appears they only sometimes pay for experimental treatment in cases of life-treatening cancer. Insurance does not consider MS a life-threatening illness. As MS inflammation attacks my brainstem, I could not disagree with the insurance company more.  An MS lesion popping up or expanding in the brainstem is not only crippling, it can stop brain signals to key organs, including the heart

Again, the opportunity and my condition required decisive action now, so that is what I did. My treatment here at Northwestern with Dr. Burt is on a self-pay basis. Last fall, I wired Northwestern a significant part of my life savings to reserve the spot I have now. I don't need as many anti-nausea or pain meds as most people. That will keep expenses lower. I will appeal to the Minnesota state board of insurance now. Maybe I'll get lucky, and months/years? from now I'll get some money back.

I fully recognize how fortunate I am to be in a financial position to do any of this. Im not rich, but there were life decisions, sacrifices and pure strokes of luck that I am thankful for now. I'm very thankful to the many colleagues and employers who've helped me through a mostly satisfying career, even when MS kept me from being a top performer. It's been a pretty good run despite all the MS crap.

REST
Part of the normal protocol with this procedure is that my blood immune cell counts are now in what is called a neutropenic state. That means I have no immune system. Sounds scary, but I'm at the absolute best place in the world to be doing this. Dr. Burt and his people know what they are doing. I am in very good hands. They've done this hundreds of times before with live, happy patients thanking them at the end.

In 9 days, I should have a new immune system that isn't trying to kill me. When that happens, I will have something more to say.