Positive Reinforcement

The guy in this video had a neurologist who told him to go for it. Now he is five years MS-free.  My neuro tried to scare me off with made-up tales of doom.  I fired my neuro and will just keep watching this video. My stem cell harvest conditioning begins Friday.

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

Tests passed, waiting for neupogen

It appears that I have passed all the tests that might have have put my procedure on hold or disqualified me.  So now I wait for Friday, when I will get a short blast of cytoxan chemo, then go back to the hotel to inject myself with neupogen for several days.  This is supposed to knock stem cells out of my bone marrow and into my blood, where they can be harvested by a dialysis machine.

For cytoxan side effects, I'm told to expect a condition referred to by patients as wasabi nose. I actually like wasabi, so we'll see how accurate the analogy is. Vision problems and nausea may also occur. From the neupogen, I may get achy bones, fever, nausea and possible vision issues. I don't like any of those, so I may have to dip into the goody bag of drugs my nurse has provided.

In Minneapolis I mostly live alone in my fortress of solitude condo, so time alone in a Chicago hotel isn't much different for me. I'm catching up on my book club reading, working a little on the high-speed wifi, chatting with the hotel help, and meeting a few guests who are here for the same reason as me.  A remarkable 20-something young man named Daniel has similar MS issues to mine and is a month ahead of me in the procedure. He's handling it all like a champ, but his mom is with him and worries more than she sleeps. How can anyone tell a mom not to worry?  I can't be done. She is a lovely lady and I just hope she doesn't get sick from stress and sleep deprivation.

Though I don't mind being alone, I still love to see people. While in Chicago, it's been very nice to see my stepdaughter Anna twice! She's a sophomore at Loyola and well on her way to taking over the world with a tour de force of charm, scholarship and determination.  I'm amazed at the fine young lady she has become. Also, my cousin Jennifer and her husband Jamie visited for a day of dining and museum gawking with me. They are delightfully smart, kind people to chat with.  And soon, my friends Sylvia, Doug, Tony, Kelly and Marry Bess will be arriving in waves to keep an eye on me and/or cause a ruckus. I'll just have to see what, if any, of their high jinks I'll be up for when the neupogen kicks in.

Dr. Burt

I met Dr. Richard Burt and his smart head nurse again this week. We talked about my test results and the discomforts and dangers I can expect moving forward in the process of rebooting my immune system with chemotherapy and my own stem cells. When Dr. Burt asked me if I understood what I was in for, I told him I'd already been following his work for more than two years. He's treated more than 100 people without killing them. Yes, I know that's not a guarantee of safety. But I'd fired my neurologist and was moving ahead. To paraphrase Hunter S. Thompson, I already bought my ticket, now it's time to take the ride.

I am not a scientist, but brilliant scientists who change the world excite me. I realized this in the 1990s when I snagged a job as a graduate science writer at the University of Wisconsin. My job was to root out professors from their laboratories, write stories about their research, and popularize their work enough to attract research funding from wealthy non-scientists. The work was science journalism, but it was also PR. I was good enough at it to win a two-year paid fellowship, and then was honored with a trip to the National Press Club to meet Glenn T. Seaborg, winner of the 1951 Nobel Prize in Chemistry and a major contributor to the Manhattan Project. Seaborg died of old age a few years after I met him. By then I was hooked on science writing and on my way to interview more great scientists. My 25-year career, reporting on and promoting corporate research in the rapidly-growing fields of high-tech agriculture, has been a fascinating way to earn a living.

Now multiple sclerosis, and my drive to stop it, has hit life's pause button for me. Looking back, maybe it's not surprising how I responded when standard MS treatments failed me. I found and persuaded Dr. Richard Burt, one of world's most brilliant immunologists, to treat me with his innovative chemotherapy and adult stem cell protocol.

In 2011, Science Illustrated ranked Dr. Burt's stem cell work as one of the Top 10 Advances of the Decade. Burt was also selected for the Scientific American 50.

The odds of me recruiting someone of Dr. Burt's stature to stop my MS seem astronomical. Yet here I am after a long journey on a rocketship to the moon. Many have applied to his program and been rejected. I feel very fortunate. Though the process I'm about to go through is frightening, it helps to remind myself I've got the most competent medical team on the planet working on me.

A day in the life of a lab rat named Wayne

I've been subjected to many medical tests and procedures in recent years, but nothing quite like yesterday, bouncing from one Northwestern med tech to the next. The tests included:
Pulmonary function, EKG, heart and vein ultrasound, chest x-ray, 14 vials of blood and peeing in a cup. I got to skip the MRI scan because I just did one a week earlier in Minneapolis.

Since I'm generally healthy except for MS, I expect that I passed everything just fine. But danged if I still don't know how to tie a hospital gown shut. I personally don't care who sees my backside, but may need to pick up some duct tape later to avoid being banned from the hospital.

After I got my street clothes back on, the final lab rat test of the day was optional and self-imposed.  Rather than hail a cab, I rolled my wheelchair around the Northwestern campus, along Lakeshore Drive and back to the hotel. It was a pretty decent arm and ab workout, and somewhat enjoyable to get out on a 50-degree December day. My phone gps said I went a little over a mile.  Maybe not impressive, until one considers that the streetward slope of Chicago sidewalks requires braking with one arm and pushing forward with the other to avoid rolling out in front of auto and bus traffic. It was inefficiency in motion, but I made it. Now thinking about ordering a Gino's East deep dish pizza.

Line Jumper to Chicago

A kid fantasy so common it's a cliche – jump to the head of long lines at Disneyland by riding around in a wheelchair you don't really need.

Fast forward to adulthood, Sunday, Dec 1, 2013 and it's way too real.  I've got MS, and the wheelchair is needed. This ain't Disneyland. I must get on a plane to Chicago to start the daunting three-week process of stem cell harvest from my bone marrow. It's phase one of of a stem cell and chemotherapy procedure that I hope will beat this shitty disease and help me live a normal life.

Any number of friends or family members would have gladly driven me to the airport, or all the way to Chicago. I could have hired a cab. But dammit, I bought a condo close to the light rail for a reason. So I roll out of my condo alone at 5:30 am with a backpack on my chair and a suitcase in my lap. It's a brisk eighth-mile roll in the dark to the light rail station. I make it just fine, even if my rig resembles the Clampetts heading off to Beverly Hills. 

A lady on the train is eyeing me incredulously, so I strike up a conversation. She's headed to work for her job as a trainer for TSA. I tell her a little bit about the reason for my journey. A few minutes later, we're getting off at the Lindberg terminal and I find that she's temporarily adopted me, going out of her way to guide me up the chutes and ladders maze of wheelchair-friendly elevators that leads from the bowels of the underground light rail station all the way up to airline ticketing.  

Throngs of tired, frazzled people are headed home from Thanksgiving, so the lines to ticketing and through security are over an hour long. Fortunately, my new friend from TSA knows everyone who works at the airport. And she has mastered the art of command presence, ordering people out of my way, then jumping me to the front of check-in. I get my ticket and am assigned an airport runner who escorts me to the head of the long line at security, then to my gate. 

Anyway, I made it to Chicago alone, but not really alone. It's time for a week of medical testing before my stem cell harvest can begin. Of hundreds of people who applied to this program and were rejected, I was accepted. It's time to rock and roll so I can get rid of the wheelchair. Despite its advantages at the airport, I do not want it.

UPDATE:Glad I didn't wait for Lemtrada/Campath/Alemtuzumab

An earlier blog post, Follow the MS Money, explained my reasons for ignoring a neurologist's recommendation to not do HSCT and instead await hoped-for FDA approval of the drug alemtuzumab (Campath/Lemtrada) for treatment of MS sometime in 2014. 

A November 11 news item affirms that I made the correct decision to proceed with HSCT. The 2014 launch of Lemtrada is now in doubt because of an unacceptably high risk of thyroid cancer. FDA sorting out the risk/benefit equation for Lemtrada will take longer than expected. I can only imagine how many MS patients will get worse as they await a drug that trades mild improvement in MS symptoms for a high risk of cancer.

I'm glad I did not wait. Though HSCT is not without risk, the potential quality of life benefit is much greater. Whereas Lemtrada has shown a 1 point improvement on the MS disability scale of 1 to 10,  HSCT is showing greater than 1 point of improvement, with 2 to 3 points of improvement for highly inflammatory relapsing remitting MS cases like mine. 



TOPIC UPDATE:

In the report on Genzyme’s Lemtrada, FDA drug reviewer John Marler detailed a litany of conditions and complications that could be caused by the MS treatment. He also called into question the way clinical trials of the drug were conducted.

“The certainty of the risks of potentially lifelong hypothyroidism [a thyroid condition], serious infusion reactions, melanoma, and other malignancies, Grave’s ophthalmopathy [a thyroid-related eye disease] and other autoimmune disorders and prolonged increased susceptibility to infection may not be balanced by the uncertainty that exists in the limited evidence of potential clinical benefits from clinical trials that were not well-controlled,” Marler wrote.  Full article below.

Report slams Genzyme’s MS drug on eve of hearing

People of faith, adult stem cells, and science.

When I first launched this blog on October 27, 2013, many of my friends, colleagues and acquaintances learned for the first time that I have multiple sclerosis, a disease I have struggled with since 2007. That alone is a big piece of news to digest.

Bigger still, I piled on additional news with the word jumble “autologous hematopoieic stem cell transplant” (HSCT), a procedure I will soon undergo at Northwestern University in Chicago. Please allow me to define a couple of those words. Their definition in regard to the type of stem cells involved is important, and I should have done a better job of defining these words earlier to clarify that there are no embryonic stem cells involved in HSCT.

AUTOLOGOUS

1:  derived from the same individual (me)

2:  involving one individual as both donor and recipient <an autologous stem cell transfusion> 

Hematopoietic

refers to organ where blood is formed. ex. the spongy bone, " a site of the bone where blood is formed" (In my case, the immune system component of blood, antibodies, lymphocytes and white blood cells.)

Emotions and Facts

The media has done stems cell science no favors. In offline conversations, several of my friends, people of faith and science, used the word “controversy” when referring to stem cells. Online, I have learned that some people who have already done HSCT try to avoid saying the words “stem cells” at all, partly because it leads to difficult social situations. I can understand their reticence. But I believe patients like me must be part of the solution to an educational problem being grappled with by leaders of both science and faith institutions, including Northwestern University, the National Institutes of Health and the Vatican. 

Following are two links to demonstrate how doctors, patients and faith leaders are building bridges of understanding.

After you click the following link, either read the whole article, or scroll halfway down to read what Dr. Burt had to say at the 2013 Vatican Conference, as well as two of his patients. In December, I will be another one of Dr. Burt’s patients. Though I am not personally Catholic, I find it very encouraging that the Vatican is open to listening and learning about stem cell science.

Vatican Conference Hopes to Promote Truth on Adult Stem Cell Therapy

http://www.zenit.org/en/articles/vatican-conference-hopes-to-promote-truth-on-adult-stem-cell-therapy

Following is a video link to a remarkable young lady who spoke at the 2013 Vatican Conference. She and her mother describe how horrific disability was stopped and reversed by the same HSCT procedure I will soon undergo with Dr. Burt. Though her MS attack started much earlier in life than mine, her MS symptoms and frustrations with conventional MS drug treatment were very similar to me.

http://www.youtube.com/watch?v=J7B2KQIyrZA

The Purpose of All This for Me

Despite following standard of care MS drug treatments and suffering their side effects, my MS advanced from a slow relapsing remitting form to a more rapid aggressive form in June 2013. It put me in a wheelchair for awhile.  After some extreme temporary treatments with steroids and blood plasma exchanges, my vision and hand coordination has improved and I am just now starting to ambulate with a cane. This is a very positive indication that stopping the immune system attacks with chemo will put me on the road to recovery.

In Chicago, the plan is for my harvested adult stem cells to be transplanted back to me after chemo wipes out the defective immune system that is currently attacking my brainstem. In short, MS is trying to cripple and kill me, so I am turning to fight back and kill it with chemo first. If all goes well, my stem cells will be transplanted back to quickly rebuild a new immune system that will no longer attack my central nervous system.

I could not do this without remarkable advances in technology that will surely become safer and better over time for future patients. But for me, the time is now. I am putting my life in the hands of Dr. Burt and his competent staff. I am being afraid and doing it anyway, with great confidence and faith that this medical adventure will work and give me my life back.

Thank you all for your support, well wishes and prayers.