One of the points of argument I had with the neurologist I fired in November was about FDA approval of the MS drug Lemtrada (formerly known as Campath). Just back from a Sanofi/Genzyme sales conference, he was convinced that the drug would be approved in December and that I should wait for it rather than following through with my hsct plans.
My review of the business press had indicated that the drug's approval would be significantly delayed or outright rejected due to safety concerns. The neurologist refused to even look at the article I had found, preferring to believe a drug company sales rep over his own patient. I can only imagine what kind of graft was exchanged with my neurologist and many others who attended that conference.
It is not a happy thing that approval of an MS drug with the potential to help MS patients has been delayed and might not ever be approved. However, it is a travesty that a drug company and a bunch of puppet neurologists who should have known better dangled the hope of Lemtrada's imminent approval to patients who opted to not pursue other available options. For many MS patients like me, timely treatment equals mobility preservation.
I feel somewhat vindicated in my decision to trust my own research and take control of my own healthcare. But I'm also mad as hell at the thought of the many MS patients who have once again been harmed by the drug industry's sowing of false hope.
Today's news:
Lemtrada rejected by FDA
The article my neurologist refused to read:
Report slams Genzyme's MS drug on eve of hearing
Monday, December 30, 2013
The Hair
Both my mother and father have thick, luxurious hair. It doesn't thin, and it didn't really start to gray until they hit their late fifties. Since then, it's been more of a gradual frosting than a graying.
In volume, it's almost too much hair, actually. Without regular haircuts, Dad can start to look a bit insane; a cross between Einstein and the Unabomber, perhaps. Fortunately, Dad's obsession is more with chainsaws than with nuclear physics and blowing things up. So far, this has worked out just fine for the world.
Mom keeps her hair styled just right, so she always looks fabulous. Like Annette Funicello, perhaps. Though Annette died of MS complications at age 70, it looks like my mom is going march past that landmark in good condition. My dad, a county full of farm cats, my sister, and I are quite thankful for that.
It's no surprise that I inherited the genes for thick hair. Like my dad, if I don't get regular haircuts, I start to look crazy. Amongst friends, my hair is a running joke. After a few beers, they've been known to grab hold and tug to see if it's real. When the hair doesn't pop off, laughter ensues.
Now, three weeks after my blast of stem cell-mobilizing chemo, my hair is frazzled and starting to fall out. I knew this would happen, so it's not a shock. But it is still a bit unnerving to watch my best physical attribute now starting to plug the bathtub drain. It may be an illusion, but I'm convinced that the follicles actually hurt. I'm also hesitant to look in a mirror. Grandpa's stories of sheep dying of a heart attack after being sheared creep forward from the back of my mind. He loved telling the tale of a sheep who thought it was a dog and was shocked on shearing day.
But I'm not a sheep or a dog. Just a guy with hair falling into my computer keyboard. It's 10 below zero outside, and I should probably go get a cheap buzzcut at the local stripmall, then maybe get a stylish hat.
If any hair survives into January, it will be fully obliterated by a much higher dose of chemo in mid January. God and science willing, my new immune system will be functioning by early February. The hair should start to grow back by May. More importantly, my MS will be stopped and my walking can start to improve. Leaning on walls and furniture is getting old.
In volume, it's almost too much hair, actually. Without regular haircuts, Dad can start to look a bit insane; a cross between Einstein and the Unabomber, perhaps. Fortunately, Dad's obsession is more with chainsaws than with nuclear physics and blowing things up. So far, this has worked out just fine for the world.
Mom keeps her hair styled just right, so she always looks fabulous. Like Annette Funicello, perhaps. Though Annette died of MS complications at age 70, it looks like my mom is going march past that landmark in good condition. My dad, a county full of farm cats, my sister, and I are quite thankful for that.
It's no surprise that I inherited the genes for thick hair. Like my dad, if I don't get regular haircuts, I start to look crazy. Amongst friends, my hair is a running joke. After a few beers, they've been known to grab hold and tug to see if it's real. When the hair doesn't pop off, laughter ensues.
Now, three weeks after my blast of stem cell-mobilizing chemo, my hair is frazzled and starting to fall out. I knew this would happen, so it's not a shock. But it is still a bit unnerving to watch my best physical attribute now starting to plug the bathtub drain. It may be an illusion, but I'm convinced that the follicles actually hurt. I'm also hesitant to look in a mirror. Grandpa's stories of sheep dying of a heart attack after being sheared creep forward from the back of my mind. He loved telling the tale of a sheep who thought it was a dog and was shocked on shearing day.
But I'm not a sheep or a dog. Just a guy with hair falling into my computer keyboard. It's 10 below zero outside, and I should probably go get a cheap buzzcut at the local stripmall, then maybe get a stylish hat.
If any hair survives into January, it will be fully obliterated by a much higher dose of chemo in mid January. God and science willing, my new immune system will be functioning by early February. The hair should start to grow back by May. More importantly, my MS will be stopped and my walking can start to improve. Leaning on walls and furniture is getting old.
Sunday, December 29, 2013
Bagels and Brunch Reunion
One year after the divorce, what can be said about the end of a 14-year marriage? It is the elephant in the room I have not mentioned in this blog. Suffice to say we chased a dream and woke up when I got diagnosed with MS. Though MS wasn't the only cause of the end, it certainly did not help.
Relationships are hard enough without the stress of an erratic debilitating disease. Despite platitudes about "in sickness and in health," life is more complicated than that. We tried mightily, but in the end we were not making one another better people by staying together. It was truly a no-fault divorce. We cried and parted as civilly as any couple could.
The years were not wasted. We loved, worked hard, played hard, helped raise a delightful young lady and traveled to some very wonderful places. We remodeled and paid off the mortgage on our house in addition to saving a bit of money. When we sold the house and divided the property, it was enough for me to buy a nice condo, pay cash for the expensive hsct treatment in Chicago, and have some left to live on if recovery from chemo takes longer than expected. I'm not rich, but I'm not broke. I expect to continue working for a living. For all of that, I am forever grateful to Jill.
And I thoroughly enjoyed visits from Jill's daughter Anna while I was in Chicago. The girl I've known since she was four is now 19, mature beyond her years, and thriving at Loyola University. Between final exams, Anna took a cross-town bus to visit me with snacks, bagels and good conversation. When Jill connected though Chicago on a business flight, the three of us got together for a very nice brunch. As usual, Anna's enthusiasm was contagious. It made me think about my new MS-free life ahead. If I can muster even a fraction of Anna's energy, single life is going to be better than OK.
Relationships are hard enough without the stress of an erratic debilitating disease. Despite platitudes about "in sickness and in health," life is more complicated than that. We tried mightily, but in the end we were not making one another better people by staying together. It was truly a no-fault divorce. We cried and parted as civilly as any couple could.
The years were not wasted. We loved, worked hard, played hard, helped raise a delightful young lady and traveled to some very wonderful places. We remodeled and paid off the mortgage on our house in addition to saving a bit of money. When we sold the house and divided the property, it was enough for me to buy a nice condo, pay cash for the expensive hsct treatment in Chicago, and have some left to live on if recovery from chemo takes longer than expected. I'm not rich, but I'm not broke. I expect to continue working for a living. For all of that, I am forever grateful to Jill.
And I thoroughly enjoyed visits from Jill's daughter Anna while I was in Chicago. The girl I've known since she was four is now 19, mature beyond her years, and thriving at Loyola University. Between final exams, Anna took a cross-town bus to visit me with snacks, bagels and good conversation. When Jill connected though Chicago on a business flight, the three of us got together for a very nice brunch. As usual, Anna's enthusiasm was contagious. It made me think about my new MS-free life ahead. If I can muster even a fraction of Anna's energy, single life is going to be better than OK.
Saturday, December 28, 2013
The Forgetting
Halfway done with my hsct immune system reset, and staring down the barrel of 2014 Auld Lang Syne, I'm obliged to remember why it is important to forget. Too much remembering of mistakes, bad luck, good luck, wrongdoing and rightdoing could drive a man insane. So could reliving too vividly all those moments of happiness and bliss that make an entire lifetime seem worthwhile until we mourn their loss. We learn from the past, we dread it, we love it, but we cannot live there.
Immunity is a different kind of memory, but with similar peril. Get exposed to chickenpox as a child, and the immune system remembers how to fight that virus in the future. Same with vaccines; be it polio, flu, tetanus or any other, the injection of a modified live or even a dead virus elicits an immune response that remains on a hair trigger, guarding against exposure to the actual disease for many years.
An autoimmune disorder, such as MS, might just be too much immune system memory. Maybe it was my exposure to Epstein-Barr virus (mono from kissing a pretty girl), or LaCrosse encephalitis (from being bitten by swamp mosquitoes) that set me down the path to MS. Or it could have been exposure to pesticides and solvents on the farm. Whatever, long after the disease or chemical had been purged from my body, my immune system remained hell-bent on attacking where the invading pathogen used to be. It's been open season on the protective myelin sheath of my central nervous system ever since.
I will not let a memory that never fades poison my future. That's true for life in general, and now for my immune system as well. Resetting my immune system and stopping MS with chemo won't be easy, but it's nothing less than another shot at life.
Happy New Year!
Immunity is a different kind of memory, but with similar peril. Get exposed to chickenpox as a child, and the immune system remembers how to fight that virus in the future. Same with vaccines; be it polio, flu, tetanus or any other, the injection of a modified live or even a dead virus elicits an immune response that remains on a hair trigger, guarding against exposure to the actual disease for many years.
An autoimmune disorder, such as MS, might just be too much immune system memory. Maybe it was my exposure to Epstein-Barr virus (mono from kissing a pretty girl), or LaCrosse encephalitis (from being bitten by swamp mosquitoes) that set me down the path to MS. Or it could have been exposure to pesticides and solvents on the farm. Whatever, long after the disease or chemical had been purged from my body, my immune system remained hell-bent on attacking where the invading pathogen used to be. It's been open season on the protective myelin sheath of my central nervous system ever since.
I will not let a memory that never fades poison my future. That's true for life in general, and now for my immune system as well. Resetting my immune system and stopping MS with chemo won't be easy, but it's nothing less than another shot at life.
Happy New Year!
Wednesday, December 25, 2013
Reflection, Rest and Recuperation
With a successful stem cell harvest behind me, I can now reflect a bit on what I just did and why. Logistically, the simple answer is that I now have the stem cells I'll need to build a new immune system after chemo is used to wipe out my defective autoimmune system in mid-January.
The aggressive, inflammatory nature of my relapsing/remitting MS is one of the things that makes me an excellent example of someone who can benefit from Dr. Burt's hsct protocol. I'm not always totally crippled, but when my immune system flares, my central nervous system shorts out and shuts down.
Since June, the flares have been coming on horrifically hard, locking up my legs and causing crucial body system shutdowns. The fact that I can go from wheelchair-bound to getting up and walking around means that most of my issue is with immune system flares and is not yet due to permanent nerve damage. This was confirmed with several MRI scans that showed active enhancing lesions on my brainstem. Allowing the flares to continue would certainly cause permanent disability. This is what convinced Dr. Burt to treat me outside of his Phase 3 study. Getting randomized into the control group of conventional drug treatment would have allowed further attacks and potential nerve damage.
Consulting with Dr. Burt and nurse Amy, we concluded that mild fever from the neupogen is probably what triggered another awful ms relapse with severe spasticity during the injections. It just doesn't take much to exacerbate that weak link.
But I am hale and hearty in other ways. Unlike most other patients, I had no nausea or bone pain from the neupogen.
Getting home on the plane was a piece of cake. But, I found that Christmas eve might be the only day of the year when wheelchair row is the longest line at airport security. 100 grandmas, and me. But, like I said, I'm not totally crippled yet, so I yelled "praise Jesus" got up and wobbled five steps through the Total Recall xray machine. That saved 20 minutes by avoiding a pat down.
Now I'm just resting and nursing the wound from the pic line catheter that was in my neck. Installing that thing hurt a lot more than I expected. I would have said some very bad words, but the surgeon literally had me by the jugular.
The aggressive, inflammatory nature of my relapsing/remitting MS is one of the things that makes me an excellent example of someone who can benefit from Dr. Burt's hsct protocol. I'm not always totally crippled, but when my immune system flares, my central nervous system shorts out and shuts down.
Since June, the flares have been coming on horrifically hard, locking up my legs and causing crucial body system shutdowns. The fact that I can go from wheelchair-bound to getting up and walking around means that most of my issue is with immune system flares and is not yet due to permanent nerve damage. This was confirmed with several MRI scans that showed active enhancing lesions on my brainstem. Allowing the flares to continue would certainly cause permanent disability. This is what convinced Dr. Burt to treat me outside of his Phase 3 study. Getting randomized into the control group of conventional drug treatment would have allowed further attacks and potential nerve damage.
Consulting with Dr. Burt and nurse Amy, we concluded that mild fever from the neupogen is probably what triggered another awful ms relapse with severe spasticity during the injections. It just doesn't take much to exacerbate that weak link.
But I am hale and hearty in other ways. Unlike most other patients, I had no nausea or bone pain from the neupogen.
Getting home on the plane was a piece of cake. But, I found that Christmas eve might be the only day of the year when wheelchair row is the longest line at airport security. 100 grandmas, and me. But, like I said, I'm not totally crippled yet, so I yelled "praise Jesus" got up and wobbled five steps through the Total Recall xray machine. That saved 20 minutes by avoiding a pat down.
Now I'm just resting and nursing the wound from the pic line catheter that was in my neck. Installing that thing hurt a lot more than I expected. I would have said some very bad words, but the surgeon literally had me by the jugular.
Monday, December 23, 2013
Abundant harvest
Stem cell harvest complete! 15 million harvested and I only needed 2 million. Considering how hard it was to get them — from chemo, to harsh drugs, to a painful pickline neck catheter — it's too bad I can't donate or sell the extra. Though they'll help me kick MS ass in January, these cells are quite useless to anyone else. Doc said not even close family members can use them, with the exception of identical twins.
Abundant harvest is not a given. A gentleman two doors down from me went through the same procedure, but did not make the minimum. He has to try again tomorrow while I get to head home. A tiny woman across the hall got 8 million on her first try. You just never know.
Abundant harvest is not a given. A gentleman two doors down from me went through the same procedure, but did not make the minimum. He has to try again tomorrow while I get to head home. A tiny woman across the hall got 8 million on her first try. You just never know.
Friday, December 20, 2013
Three Friends
Dear Doug, Sylvia and Tony: Despite your contentions that I don't ask for help, you came to Chicago and shepherded me through some difficult medical moments. The ugliness included a cytoxan chemo infusion, another crippling MS attack, and several exotic drug injections.
Now, the worst of my latest MS attack seems to have passed and today's blood test showed all is well on cell counts. Just a few more injections until my stem cells are ready to be harvested on Monday. Then phase 1 of stopping my MS will be complete!
Thank you for remaining calm, attentive caregivers and companions during moments where others might have freaked out or overreacted to the detriment of my quest to see this through. You made my situation better, not worse.
Best,
Wayne
Now, the worst of my latest MS attack seems to have passed and today's blood test showed all is well on cell counts. Just a few more injections until my stem cells are ready to be harvested on Monday. Then phase 1 of stopping my MS will be complete!
Thank you for remaining calm, attentive caregivers and companions during moments where others might have freaked out or overreacted to the detriment of my quest to see this through. You made my situation better, not worse.
Best,
Wayne
Thursday, December 19, 2013
Neupogen Injections
After hundreds of jabbings, stabbings, infusions and blood draws, you might think needles wouldn't bother me anymore. But seven years with MS and its intrusive treatments have done little to ease my needle phobia.
The tiny needles terrorize me as much as the big ones. Perhaps I'm paranoid that they'll break off if I flinch or sneeze. To get by, I've learned meditation tricks. My happy places include warm seas with dolphins, long motorcycle rides, and secret snuggles with Salma Hyek in an arcade photo booth. She laughs, bites my ear, we snap a picture... and the needle is in. Details are important for distracting fantasies.
There's been a lot of needles and not enough Salma this week, but the cute blonde nurses have been very competent and kind as they've attended to me. Everyone at Northwestern is fantastic. Even the hospital food is very good.
Friday and Saturday was an infusion of Cytoxan chemo to shock my bone marrow and begin the release of stem cells into my blood. That required a big needle and a catheter tube into my jugular vein for a few hours , followed by several blood samples with smaller needles to make sure that the Cytoxan was doing its job without wrecking my kidneys. Blood tests showed that white blood cell and other immune cell counts had doubled, just as expected.
I left the hospital on Saturday and checked back into my hotel room with friends Sylvia ands Doug watching over me. Job one has been to stabilize my headache, nausea and muscle spasms with several different meds.
Job two at the hotel has been self injections of Neupogen to release even more immune stem cells into my blood until stem cell harvest on December 23. As the stem cell count rises, my MS symptoms are getting worse. This is expected, and temporary. My hands and legs are very shaky right now. Typing this blog is slow and difficult. Walking with a cane is now almost impossible. I'm grateful to have friends assisting with my injection and mobility issues.
Do not worry if I don't blog much. Getting through the next weeks will be a challenge. I just need to chill and have faith that this is all worth it. Certainly there will be fewer needles as I leave MS and its drugs behind.
Merry Christmas!
Wayne
The tiny needles terrorize me as much as the big ones. Perhaps I'm paranoid that they'll break off if I flinch or sneeze. To get by, I've learned meditation tricks. My happy places include warm seas with dolphins, long motorcycle rides, and secret snuggles with Salma Hyek in an arcade photo booth. She laughs, bites my ear, we snap a picture... and the needle is in. Details are important for distracting fantasies.
There's been a lot of needles and not enough Salma this week, but the cute blonde nurses have been very competent and kind as they've attended to me. Everyone at Northwestern is fantastic. Even the hospital food is very good.
Friday and Saturday was an infusion of Cytoxan chemo to shock my bone marrow and begin the release of stem cells into my blood. That required a big needle and a catheter tube into my jugular vein for a few hours , followed by several blood samples with smaller needles to make sure that the Cytoxan was doing its job without wrecking my kidneys. Blood tests showed that white blood cell and other immune cell counts had doubled, just as expected.
I left the hospital on Saturday and checked back into my hotel room with friends Sylvia ands Doug watching over me. Job one has been to stabilize my headache, nausea and muscle spasms with several different meds.
Job two at the hotel has been self injections of Neupogen to release even more immune stem cells into my blood until stem cell harvest on December 23. As the stem cell count rises, my MS symptoms are getting worse. This is expected, and temporary. My hands and legs are very shaky right now. Typing this blog is slow and difficult. Walking with a cane is now almost impossible. I'm grateful to have friends assisting with my injection and mobility issues.
Do not worry if I don't blog much. Getting through the next weeks will be a challenge. I just need to chill and have faith that this is all worth it. Certainly there will be fewer needles as I leave MS and its drugs behind.
Merry Christmas!
Wayne
Wednesday, December 11, 2013
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?
https://www.youtube.com/watch?
Tuesday, December 10, 2013
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.
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.
Friday, December 6, 2013
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.
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.
Tuesday, December 3, 2013
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.
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.
Monday, December 2, 2013
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.
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