Wednesday, January 28, 2015

Hey everyone.... sorry to leave you all hanging. I came down with a chest cold the day after I arrived so it's been relatively uneventful and I've been resting up to ensure I stay on schedule. I did have a couple of friends, Jeff and Francis, come keep me company for a few days so that was a nice break from my solitary confinement.

BLT Bloody Mary. God Bless America 

The first two weeks out here consisted of appointments and testing all the various functions of the body to ensure good health. Echocardiogram, EKG, pulmonary function testing, enough blood work to kill a man, cryopreservation in case of infertility from the chemo, you name it. The good news is everything came back clear.

That meant I was able to start mobilization on Monday... (mobilization is just a fancy term for my first round of chemo). Rach and I woke up bright and early Monday morning and headed down to Northwestern Hospital to get settled in to spend the night.


First I was put on an IV drip of fluids and mesna, which is a medication to prevent the chemo from staying in my bladder and causing bleeding. After that was probably the worst part of the whole day - catheter placement. They had to put a catheter in as another precaution to ensure none of the drug remained in my bladder (I was conscious during this...any nurses out there kudos for the job you all do). Then a couple hours later they started my IV drip of cyclophosphamide chemotherapy. That only lasted about two hours.

The rest of the day was relatively uneventful...I just felt tired and lethargic, and occasionally a little nauseous. The staff at Northwestern is amazing which made it all go smoothly.

I was discharged from the hospital around 7:30 last night and we just stayed pretty low-key for the remainder of the evening. It was good to be able to come back to my own room and shower and grab some food.

Grabbing some food at Knickerbocker after discharge

Wednesday nights are milk and cookies night down in the hotel lobby and I'll be damned if the nausea keeps me away from those.

Until next time,
Troy

Chicago's Gold Coast from Navy Pier

Sunday, January 11, 2015

“This looks like classic multiple sclerosis.”

Those were the first words the neurologist bluntly uttered after he scanned over my brain MRI. Just a few days prior, I had been at my primary care physician’s office complaining of difficulty with my balance, issues remembering the most basic words, vision problems and more. He optimistically believed it was an inner ear infection causing me vertigo.  Still, he wanted to order a brain MRI just to be certain.  Three days later my doctor called me asking me to come in and speak to a neurologist on his lunch break; the writing was on the wall.

Image of my brain MRI for those curious what a brain lesion looks like (white spots)

I sat there with a thousand mile stare as the doctor continued to speak. “It isn’t a death sentence”… his words falling on deaf ears. All I could envision was me sitting in a wheelchair. I had seen people with multiple sclerosis before.  How is it possible that I had a disease which affects two to three times more women than men? Isn’t this a disease only people over 40 or 50 get? My mind was racing at a million miles an hour.

We talked about treatment options and I was referred to a specialist in Boston.  One thing was clear: there is no cure. There are new and innovative ways to slow the disease and 5-10% of people with MS never progress to severe disability (benign MS). I walked out of the office more confused than I had ever been.  I had woken up that morning thinking I knew something about my future and by early afternoon I didn't know shit about what was in store.

All the self-pity bullshit wore off quickly. One thing that I can’t stand is people who get caught up in a world of “woe is me” – it is a toxic mindset and it ends up becoming like a parasite inside of people attaching itself to their personality. There will always be people worse off than you are. All the children with cancer or loved ones who tragically die, who was I to feel sorry for myself? It was time to look for an alternative.

That is when I came across an article about a young man- a young man who was diagnosed with a more aggressive form of MS than myself and was already in a wheelchair. That was until he underwent a life changing yet experimental treatment. His name is Edwin McClure and he is the single reason I am here typing this blog right now.


Now I don’t believe in fairies and I sure as hell don’t believe in miracle over-the-counter herbal cures but this was different. It was science- pure and undeniable science using a procedure that has been used since the 1960s. This procedure, known as hematopoietic stem cell transplantation (HSCT), was being used to put MS into remission. I sent all of my information into Northwestern Memorial Hospital.

That takes us to today. I am in Chicago and will begin the process starting tomorrow. I could not have done it without the help and love of my friends, family, coworkers… many of you falling into more than one of those categories. I will be putting periodic updates up through this entire process and promise to be blunt about the whole thing; letting you know which parts suck and which aren’t nearly as bad as you may think. Until next time.

-Troy