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.
Monday, December 30, 2013
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
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