Bone Pain = Good?

Day 10 after my stem cell transplant and several days of neupogen injections, deep pain in my  hip joints came on hard and fast.  The nurses say this is a sign that cell engraftment has begun. Yay!

Tonight's blood test for white blood cell count could show the beginnings of my new immune system. What's been stuck at 0.1 all week could pop up to 1.0 overnight.

Until then, I will attempt to comfort myself with a chicken quesadilla and a couple Tylenol.  The nurse offered me codeine. Based on past experience, that level of pain relief would not be worth the hangover headache of coming off codein. I'll be fine, but that @%$* quesadilla I ordered better get over here and comfort me.

Pop quiz for neurologist's knowledge and character

It's troubling enough that most MS neurologists prescribe immune-modulating drugs with very little training in immunology, other than literature and assurances they receive from drug company sales reps.

But neurologists should at least have vast knowledge about how brains work, right?  After watching this Ted Talk Video, I'm realizing the guy I recently fired did not even have that going for him.

If I could go back in time and give myself advice about how to evaluate my MS neurologist, I would have advised myself to give him a pop quiz.

Quiz time would be at some point when sitting next to the neurologist comparing before-and-after MRI scans of the brain. We'd be looking at scans showing where my immune system scarred my brain. He'd be saying this one's bigger, that one's smaller, one disappeared or new ones appeared.  

Stop him and ask "What does that part of my brain do, where that lesion is?

If he confidently uses the term "silent area" that's a strong indication the this doctor is either a dinosaur or a quack.  Grade F.

If he says "it's hard to say exactly what that exact spot does, but that area of the brain generally is associated with XYZ function…" Grade A

If he says "I don't know," that might be as passing Grade C. At least he's being honest and may be open to learning new things.


http://ed.ted.com/lessons/what-percentage-of-your-brain-do-you-use-richard-e-cytowic#review

A different MS Clinical Trial -Hope for secondary progressives?

This post has nothing to do with HSCT or what I have just done to stop my aggressive relapsing remitting MS.

Except that when I was reading about the recent Vatican Stem Cell Conference where Dr. Burt spoke, I thought the CEO of Opexa had some interesting things to say about cellular-level therapies. I looked up the company and found that they are now  recruiting secondary progressive patients for a drug trial. Something interesting is going on. There are very few drugs that can help secondary progressive patients. This could change that.

Details of trial locations and basic qualifications here.
http://www.opexatherapeutics.com/clinical-trials/abili-t-clinical-study-for-secondary-progressive-multiple-sclerosis-overview/default.aspx

This trial has been given FDA Fast Track Status.  Very exciting.

Early Evaluation and the road ahead

Still in the hospital waiting for stem cell engraftment, I’m experiencing remarkable physical improvement much sooner than I expected.

Legs

Already, my crippling leg spasticity is GONE.  They can move. I can tap my toes.  The horrible fluid retention that gave me old lady kankles over the past two years has just disappeared.  I have returning sensation in my feet. Sort of a warm, pleasant feeling, like a sunny day at the beach.

Hands

Still the on-fire-all-the-time pain I've had for years.  But maybe it’s an 8 instead of a maxed out 10. Hard to say.

Core

While I was clumsily glorying around the hospital room with my newfound legs, I felt a faint, then stronger memory return in my lower abdomen. Holy crap, that’s my core! Those key muscles tie the body’s entire locomotion system together.  MS people often lose core muscle function. I was one of them.  Years ago, a PT would work with me to try to find those muscles. I never could. The nerve signals to do so were blocked.

Bladder

I’m not pissing myself or using my emergency urinal as much anymore.  I can get to the bathroom. Always a good thing.

Eyes

Bright and sharp. I can read up close, or gaze out my window to watch kids playing over at the children’s hospital atrium.

Self PT

The nurses demand I be very careful now. I still have no immune system and my platelet counts are low. A fall right now could be disastrous.  So I’ve started using a four-legged walker to do laps around the room. It’s also a balance point for some basic PT. It’s all clumsy, but happy. I must look sort of like this circus bear.

There’s no telling how quickly or slowly I will improve from here. I expect to have a long road of work ahead if I’m to walk like a man.  Hollywood says we need to get psyched up and motived before we even start a physical challenge. So maybe I must Kill the Bear

Or kick ass, remain calm, and carry on, like This Mild-Mannered Meteorologist.

Mostly I intend to return to my active lifestyle joyfully and not take myself too seriously. Keep sailing, Bob

In addition to seeing a physical therapist, I’ll work out at a gym. And transition gently from clumsy walking to natural fluidity of movement.  I'll be inspired by the Olympics. Maybe try something new?

I hear pilates is good. I’ve never done it.  I’ll give it a shot.

I never pictured myself as one of those guys doing tai chi barefoot in the park. Pretty sure I won’t go there. Nor to where Keanu Reeves took it in Man of Tai Chi.

I used to work out a lot, learning half of what I know from the worst teacher going, experience. I learned it is important to be efficient and identify dangerous exercises before they hurt me. But it’s sort of tragic to waste time on useless stuff when there’s so much better to do. No Cross Fit for me, please. Sometimes it's best to just laugh at stuff like that.

Anticipation, oh maddening you are

Just realized I should have started an office pool to wager on what day my engraftment will occur. Three days of neupogen injections, and my cell count is 0.1. That's virtually nil. It must be 1.0 before I can re-enter the world. I'm getting a bit anxious.

I asked Dr. Burt how stem cell engraftment happens. How do my stem cells know to return to my bone marrow?  He looked bemused and said this: "Two explanations are correct -- millions of years of evolution, and a miracle of God. It will happen." He winked and went off to his next patient. No wonder everyone around here loves Dr. Burt.

The following is a post from a former Dr. Burt patient who is now living an epic disease-free life. I'm not sure what he does. In his Facebook photo, it looks like he's saving sea turtles. I like this.

Keith Ludwig Engraftment is like a bag of popcorn in the microwave. It's not a matter of IF it will pop, it's just a matter of WHEN. One of these days, they will write 0.1 on your white board. Next blood test will show something like 0.9. Before you know it, they will be telling you. "you don't have to go home, but you can't stay here". Enjoy the pampering of the staff while you can.

Alarm Fatigue

Sitting for weeks in a hospital, I can relate to this interesting article on hospital alarm fatigue. Too many alarms stress caregivers and patients. That's not good for anyone's health. And it defeats the purpose of an alarm. When everything sounds like a crisis, humans get numbed to it and real crisis can be missed. My friend Paul summed it up with this quote: "Nothing screams incompetence like an unheeded alarm." Paul's a smart guy, but I don't know if history can reward him as being the first to make that deep statement. I think he might have picked it up from the TV show, Futurama.

Fortunately all of my alarms here at Northwestern have been heeded. And really, there has been nothing that has happened to me here that could be considered as crisis worthy of alarm. They planned all contingencies ahead of time. So I can sit here comfortably bored, mindfully safe. It's been helpful that the nurses showed me how to mute noises on my infusion machine that sounded like alarms to me, but were merely signal noises. When my infusion finishes, I can hit a mute button and just call my nurse to say, "Hi, my infusion's done." Whether we're talking about patients or farm animals, staying calm is much better for healing. When alarms sound, humans become much like frightened, stressed animals. I think the medical equipment industry could learn a thing or two about stress reduction from Temple Grandin.

Beyond medical equipment alarm stress, the current U.S. healthcare system in general is not good at calm, thoughtful healing. What it is pretty good at is triage, scrambling to the patients in most-urgent need of rescue from crisis. That's how my MS health care was handled before I got here.

Finally, all the alarms with no benefits just pissed me off. Tired of being a cash cow for pharmaceutical companies, I channeled the anger of a stubborn bull who'd been cattle-prodded one too many times.  It was quiet rage that gave me the ability and resolve to finally say no and ignore ill-informed admonishments to be be terrified of HSCT. Anger is powerful motivational fuel, but it takes a toll and burns out fast. I got lucky that it worked for me. Had I failed to get here, I might have ended broken and bitter beside the road. What I did is no way to get healthcare. It shouldn't be that hard.

I have this hopeful vision that many more MS-ers will become aware of, and benefit from, HSCT treatment. But instead of going into death-throes animal rage to accomplish it as I did, they will be zen masters who simply turn off the crisis alarm and calmly move forward. They will know the reality, and need not fear.

Please be kind

My Google analytics dashboard shows that half the people visiting here are viewing the blog via smartphones, from many parts of the world. It's hard to follow a blog on a phone, but I appreciate that you do. I've found that a blog is a chaotic way to convey or find information.

I don't curate this blog. I don't have a fact checker or a copy editor. It's just me, an HSCT patient, doing stream-of-consciousness writing and posting. Occasionally I will review old entries and realize I'm getting redundant, or that good things got buried. I've had to just accept some limitations and give myself a break. I hope you can too. Maybe you will find something relevant, useful or moderately entertaining.

I don't make money with this blog. I don't endorse any product, treatment or anything else. I'm not doing  a fundraiser. If you see an online ad that appears to be related to me, it's not. Please let me know what you saw. Google Adwords, Facebook, or some other entity may be picking up keywords and positioning ads that appear next to my blog on your particular interface.  I'd have no idea this was happening unless you told me.

Here is a good article that may have been buried.

Vatican Conference Hopes to Promote Truth on Adult Stem Cell Therapy

And here is the disclaimer that I started with.
*DISCLAIMER: Nothing in this blog constitutes medical advice. Nor should any of it be considered a credible source of facts or attribution for journalists. I am merely a self-educated patient pursuing MS treatment and sharing some of what rolls around in my addled brain along the way. The blogosphere is populated by lunatics, sages and fools. I may be one of them or all three. Believe and proceed at your own risk.

**My thanks to George Goss, Barb Yoder Coppins and all the participants in their moderated discussion groups for sharing information resources, encouragement, experiences and knowledge about HSCT.

Chemo Update: Platelet Infusion

In this HSCT procedure, Cytoxan is the chemo that is used to stop the bone marrow's production of old autoimmune cells that cause MS.  In trying to help family, friends and other MS sufferers understand this important aspect, advocates of HSCT often repeat a mantra soundbite "No Chemo, No Cure!"

The chemo STOPS the disease. Stem cells then build a new immune system. To me, this is different and better than some of the stem cell repair stories that have been hitting the news recently. Those techniques use a different type of stem cell altogether, and no chemo. From what little I know, those cells do repair nerves, but the underlying disease of MS still remains for the patient. They will have to stay on immune-suppressing drugs, or go back with more stem cells for further repairs later. I won't.

That said. Chemo is chemo. It's no fun. It has dangers. Any facility that does it has to really know what they are doing.  The patient needs a certain mental fortitude to step up and do it, then get through it.  For me, I found inspiration by watching women beat breast cancer with far harsher chemo and radiation. Krista, Karen, Julie… my cancer-surviving friends, you were and are my inspiration. Sometimes people call me a badass for doing what I'm doing. You chicks are far tougher than me. And to my Aunt Margarette who survived breast cancer, my great admiration. I wasn't really there to see any part of your struggle, but I know you did it. So I dub thee my badass auntie. I'm glad you are still around.

Anyway, my chemo has caused a reduction in blood platelet cells. This was expected and I was forewarned. Today I will get a platelet infusion. Thanks to the anonymous blood donor who provided those platelets. They will keep me from bleeding.

Results already? How safe is safe? What's really at stake?

Having no MS autoimmune attack on my nerves anymore has already unlocked my legs well enough to walk around a bit. Oh sweet mobility! Also, for the first time in I don't know how long, I am feeling my "core" abdomen muscles activate when I walk. MS had taken out my core muscle control years ago. I'm absolutely startled to feel these results so quickly. It seems too good to be true, but Dr. Burt says he's often seen this happen.

But the stem cells will still take time to engraft. Until then, I sit in this hospital room with no immune system. Biosecurity is infused antibiotics, oral antiviral/antifungals and a team of highly-trained nurses with certification designations well-beyond their "RN."  I've always got a pressurized flow of HEPA-filtered presurized air at my back that goes out the door away from me.  All this boosts my confidence in Dr. Burt's data that show the risk of death from this procedure, at this place, is less than 1%.  Not the 20% my now-fired neurologist told me.

I'm actually allowed to get up and walk out my door into the general chemo ward.  I could visit the six other Dr. Burt patients who are currently here.  I don't.  One patient found me online and asked for my room number for a visit. Good Lord.

Yesterday a young enthusiastic woman with a stack of activity flyers entered my room. And a teenage hospital volunteer has bounced through my door asking how she can help. To me, right now, those little helpers are potential angels of death.

If you follow the news at all, you've read about new strains of antibiotic-resistant bacteria. There's a resistant strain of CRE in a different Chicago hospital right now. It could be here and nobody knows it yet. With bacteria, new resistance can pop up at anytime, anywhere.  MRSA is another one of the resistant devils the nurses here at Northwestern are on alert about. Their cleaning protocols are designed to prevent those bugs from getting a foothold.  They watch my body temperature closely for signs of fever that might indicate a need to switch antibiotics. There are backup options of other antibiotics to switch to. I'm covered.

Maybe I am a little germaphobic paranoid because I fear death right now just as it's looking like I'm beating MS and getting my life back. But mostly I'm afraid of being the guy who screws everything up for the many future thousands of patients who stand to benefit from Dr. Burt's work.

Every day, Dr. Burt makes his rounds as a physician and visits me. With his pleasant bedside manner, it would be easy to forget that he is one of the world's most important academic medical researchers.

We chat briefly. I'm bleary from chemo, my brain is a bit shell-shot by my recent MS attacks. Although I try to put on a reporter hat and ask intelligent questions, I'm no medical reporter. Dr. Burt's answers are always interesting. I'm not going to repeat them here. He does not want me to. He's a true academic and no media hound.

It has been a long journey getting myself into this program as a patient.  I'm much better to the HSCT cause as a patient success story than as a would-be reporter trying to get a "scoop."

Dr. Burt began all this 30 years ago in animal studies. His dedication has finally taken the research to a point where it is starting to help people. This is big stuff. I'm so lucky to be part of it.

Happy Belated Birthday to Me

Last Tuesday, January 21, I received the infusion of my own stem cells that will build my new, properly functioning system. While I'm thrilled to simply call this another shot at life, the event is referred to as a "birthday" for HSCT patients. Dr. Burt and the nursing staff take time with each patient to do a sweet little party with small, thoughtful gifts. I got an oatmeal-raisin monster cookie. Yum!

In the past, I've tried to ignore my birthday, as if that will somehow keep me young. But each year, family, friends and other do-gooders remember, so I am gratefully forced to make an exception. If nothing else, it inspires me to thank my mother, and then go find a readable book. Here is a quote from one that feels appropriate for me, and other patients looking forward to brighter days.

“When adults say, "Teenagers think they are invincible" with that sly, stupid smile on their faces, they don't know how right they are. We need never be hopeless, because we can never be irreparably broken. We think that we are invincible because we are. We cannot be born, and we cannot die. Like all energy, we can only change shapes and sizes and manifestations. They forget that when they get old. They get scared of losing and failing. But that part of us greater than the sum of our parts cannot begin and cannot end, and so it cannot fail.”
― John Green, Looking for Alaska

Video of Dr. Burt

Earlier in my blog, I posted a video. It got buried. Here it is again. Worth watching, because  I'm going to be that guy.

MS in remission w/own stem cells - JAMA Report

https://www.youtube.com/watch?v=Y8SAgUB5hQs&feature=youtube_gdata_player


If there is an award for science and health video reporting, the JAMA Report above deserves it. It is accurate and informative about what is really happening with HSCT treatment here at Northwestern. And it gives a very cogent overview of the science behind it all.

I can tell you this because I'm living here as a patient now and looking forward to my own health improvement results. I showed the video to one of the bright nurses who care for me here.  She had not seen the video before, but enthusiastically recognized and named staff people in the background. She also pointed out subtle changes that had occurred since the video had been shot. I like a nurse with attention to detail.

Gratitude

Many thousands of people around the world have autoimmune disease severity as desperate as, or worse than, mine. Few know about Dr. Burt. Fewer still qualify for his research-stage treatment. Some of my previous posts attempt to explain how I became one of the few to qualify to be treated by Dr. Burt here at Northwestern University.

A small number of very brave MS patients may seek similar, but different HSCT treatments overseas. I followed the stories of a few who heroically succeeded. I also found less-publicized stories about others who quietly died in the process. With limited, but some, data, I calculated the risk versus reward odds as best as I could, then tossed the calculations aside as it became increasingly obvious that I was dying from unusually aggressive MS anyway. I was willing to fly to Bangalore, India, but thanks to my fortunate acceptance at Northwestern, I did not have to. I now realize I might have tried and failed in a far-off land as my MS attacks accelerated. One disaster could have quickly cascaded into the next. Thank God I didn't fly to Bangalore.

I sent a personal thank-you note to Dr. Burt's research study administrator for recognizing my treatment qualifications and then getting me into this treatment as my condition started to rapidly deteriorate. This is not that note. As a professional courtesy to a very busy person, I will not name her. Suffice to say that she is one of the most remarkable and compassionate people I have ever known. When I stumbled at the gate, she worked on many fronts to help see me safely through. She is one of many who personifies this entire program. The following pasted excerpt from her response to my thank-you is a better view of what this place is about than anything I can write.
----

Wayne,
Thank you for the nice note. It means the world to me. 
I am very fortunate to have a job where I get to make a difference and help extraordinary people like you. I am especially grateful to work for Dr. Burt who I feel is more than a national treasure, he is a gift to humanity. He has made many sacrifices to develop therapies that have saved lives and end suffering. I know that this therapy has changed the course of your MS and you will see improvements in your health. I hope that you already have seen some changes for the better. The best thanks that my team and I can get is to see you do well.

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.

Stem cell update

An extra bit on the stem cells:  Remember, these stem cells are my cells, harvested from my bone marrow in December. I got them back Tuesday. 

It was impressive when the cyro-freeze specialist rolled in a cask to my room and pulled out one of my two cassettes of stem cells from liquid nitrogen on Tuesday. Protective gloves, vapor, the whole sci-fi drama. 

I was infused with one cassette of cells, which is now hopefully finding a way back to my bone marrow to engraft and build my new immune system. This takes days. I do not understand the biological process. The cells just know where to go and engraft; back home to the bone marrow. When they do, my immune cell counts will rise and save me. This process has happened with many hundreds of patents before, so i have faith that it will happen with me.

Anaphylactic shock sometimes/rarely happens as a reaction to one of the preservatives with cryo stem cells. It did not happen to me, thank God. The medical team standing by was amply prepared with countermeasures to complications, but they were not needed.

One unavoidable side effect of the stem cell preservative is that I will smell like cream corn for several days. It's not a delicious corn chowder smell. If you've ever worked in or been near a corn canning factory in July, you know this is not nice. I feel sorry for my nurses. They never complain.

Odd bonus: The second cassette of stem cells is not something most patients have. Perhaps because I have dense bones, my abundant stem cell harvest in December gives me an extra cassette in cryo storage for life at Northwestern University. These cells are only useful to me in the unlikely event that I might need an additional bone marrow immunity boost. Sadly, they are matched only to my body and are not useful to anyone else who might need a new immune system. Stem cell harvest is unpleasant, difficult and expensive, so it's a bummer that I can't donate mine. Science just isn't there yet. But who knows what the distant future may bring?

Countdown to Stemcells

Premeds at 9:30. Stemcells at 10. This is it, what I have been working for.

Sitting here with no immune system, pumped full of antibiotics and antivirals. Guts churning. I have not eaten in 48 hours. Not much sleep the past few days. Crippling MS leg spasticity comes and goes, but that's not unusual for me since my recent MS attack in June.  I can get out of bed on my own most of the time to get to the bathroom, or a chair. I do a few careful leg exercises. It's minimal maintenance activity to stay functional, while being careful not to fall.

Lots of thoughts of insight and delusion in these sleepless hours. Probably none fit to write here. Suffice to say: new immune system, recovery, and new life to contemplate.

No-straw Monday

Hiccups are very bad with chemo-induced acid reflux. The nurse gave me prevacid for the acid and baclofen for the spasticity. But hospital food service kept giving me a tasty afternoon fruit smoothie, with a straw.

Kids with sippi cups, drunks with umbrella drinks, and me, an MS spaz with a fruit smoothie. Straws give us hiccups. Hiccups are very bad with chemo-induced acid reflux. Did I saw that before? Can't believe I had to figure this out on my own. Good grief. I told the nurse to warn the other patients.

In other news, this is a transition day. No more cytoxan chemo, and no more lasix and constant peeing all night. They'll keep me on some other drugs to protect bladder and kidneys from the chemo. Maybe the burning in my guts will abate and I will be able to sleep at night.

Now is also the time I will start to become neutropenic. Immune system count will go way down over the next two days. They say this will make me even more tired than I am now. The clean room, IV antibiotics and antivirals will hopefully prevent infection.

I think I get my stem cells back on Tuesday to rescue me with a new immune system, presumably similar to the one I had when I was a newborn baby, without MS. They'll watch to see if stem cell engraftment occurs and for my immune cell counts to start rebounding.

January is a long winter month. But outside my window, I can see the daylight getting longer.

Good Morning

Actually, it's past noon. Mornings are for sleeping.  Nighttime is for peeing, and peeing and peeing.  That's the way it works with Dr. Burt's cytoxan chemo protocol.  He's washing a lot of fluids through me along with several protective drugs to reduce negative side-effects of the chemo.  I get acid reflux, headache, and it feels like I'm being kicked in the gut sometimes, but it is manageable. I'm to eat three small meals a day, but it's not easy and I'm losing weight.

I'm showering on my own each morning with a high-level antibacterial soap, as best I can with my continued leg spasticity. A nurse helps me wrap my picc line to keep it dry. And she helps me dry off and get dressed. I'm as weak as a cub.

I asked Dr. Burt what he thought of the similar treatments going on in Ottawa. He said he disagrees with the higher-level chemo toxicity that their protocol uses.  Egad, I'd hate to be those people.

The Canadiens

This article from Ottawa cheers for their local medical researchers. It does not mention that these guys are a couple years behind Dr. Burt and Slavin, who first pioneered the research. But at this stage of the game, everyone's a pioneer, including participating patients like me. I'm just very glad to read  that these Ottawa doctors are  observing the same positive results with patients as Dr. Burt has.  Further confirmation that HSCT is a legitimate treatment!  And the summary of the procedure is well-written, I think.

Ottawa doctors behind breakthrough multiple sclerosis study

The Chemo Room — It's not a bubble.

Germs are my enemy, especially now that I will he on five days of Cytoxan chemo to intentionally delete my defective immune system. Cloistered here at Northwestern Hospital, I will be vulnerable to infection until I get my stem cells back and they engraft to start building a new non-autoimmune healthy immune system. Target date to be released back into the wild world is somewhere the first week of February. 

Friends and family ask if my hospital bed is inside a big germ-proof orb, like the one a young John Travolta lived in during his first big movie break in 1976, The Boy in the Plastic Bubble. Nope, no bubble for me. What I do have is a  pretty normal hospital room with a high-troughput hepa air filter, and nurses who wear masks, gowns and rubber gloves. Also, walking into the chemo wing requires going through a massive double-door airlock that closes with a reassuringly solid boom. I assume this is to scare off unfriendly anti-hsct neurologists and infectious feral street cats.

In my room, the IV machine I'm hooked up to  looks like a mutant jellyfish tree. Several bags of translucent fluids simultaneously drip their contents down dangling clear tubes into an octopus catheter in my arm. A tube within the catheter snakes up inside an arm vein, through my shoulder, under the clavicle and to within an inch or so of my heart where drugs will get pumped though my body. When I get nauseous or headachey from the chemo, my nurses offer a progression of several different drugs to calm my symptoms.

I'm not very mobile due to leg spasticity, but I'm encouraged to unplug my IV machine and run it on battery power so I can walk around the hall a bit to keep my muscles working and the blood flowing. Bald, in a hospital gown and pushing a wheeled rack of infusion drugs, I no doubt look like a hare krishna trying to sell salvation through magic jellyfish. So far, nobody's buying.

  

Phase 2

I'm tying up loose ends and meditating on my journey ahead. Most of my hair has fallen out from the chemo used to harvest my bone marrow stem cells in December. That low dose of chemo has already suppressed my immune system enough so that I have noticed some improvement in my walking. This bodes well for the hoped-for success of HSCT Phase 2 as outlined below.

Jan 15:

Fly to Chicago and have a picc line catheter installed in my jugular vein. Chemo, drugs and my stem cells will be administered via this port. I thought about posting a video of the procedure here, but opted not to. Suffice to say, I've had it done before. You stay awake for an outpatient surgery. It hurts a bit, but the worst part for me is that it's awful to think about. The surgeon says it's no big deal. Riiight.  I will be attempting yogic meditation to allow my consciousness to leave my body, and the operating room, while he's shoving that squid-like contraption through a hole in my neck.

Jan 16-20

MS is an autoimmune disease of the central nervous system, so a daily chemo blast will be used to wipe out the immune system that went haywire on me years ago. Because of this intense immune system suppression, I will be in isolation, under constant monitoring and receiving a cocktail of antibiotics to prevent infection. I will also receive additional drugs to protect my organs from the chemo. 

Jan 21-31:

The bone marrow stem cells that were extracted from me in December will be transplanted back to build a new "antigen-naive" immune system that won't attack my nerves. This is often referred to as "stem cell rescue" because the patient cannot live for very long without an immune system. As the word "rescue" implies, this is the riskiest time of the procedure. 

 

February???:

Discharge from the hospital will be possible as soon as tests show that I have a functioning immune system. This will likely be sometime the first week of February, depending on how quickly the stem cells engraft and I develop adequate white blood cell and antibody counts. I can expect my new immune system and my body function to see anything from rapid, to gradual improvement. Every person is different, but Dr. Burt says patients often continue to improve for 2 to 3 years after HSCT.

The Future:

HSCT is a bit risky and not easy, but I expect to succeed and recover to begin a new life without MS. I base this on the fact that I am still considered to be in the early, inflammatory stages of the disease. Chemo will stop the inflammation in its tracks. HSCT is the only known effective way to halt MS, stop inflammation and allow the nervous system to heal.  

In addition to working on whatever writing projects I can handle, I will begin physical therapy in March to regain mobility. Visits to an endocrinologist and hematologist will help ensure vital body systems still function properly.

I've always enjoyed challenging myself physically. Though never a gifted athlete, I was tougher and stronger than most. Now MS has made me fragile, and barely able to walk with a cane for a few hundred feet. 

Fighting back from MS will be my biggest challenge ever. Successful  completion of HSCT is just the beginning.  My vision for the future may no longer include full-contact martial arts, snowboarding or breakneck-speed mountain biking, but long walks around the lake, sailing, canoeing, golf and an active lifestyle now feel once again within my grasp. For that chance, I am beyond grateful.