Long overdue blog post sorry for the wait and thank you to everyone keeping in touch. I'm going to go a bit in-depth about the process with this one so bear with me. With that let's dive right in.

On the 18th I had my PICC line placed in preparation for admission the next day.

My PICC

The purpose of the PICC line is so there is constant access to the circulatory system for blood draws, medication administrations, stem cell transplantation, and blood transfusions. The process of having it put in was relatively painless and it is without a doubt better than being stuck multiple times every day for various testing. Impossible to tell in the picture but the line goes all the way up through the arm and rests right before your heart. 

Shameless hospital selfie

I admitted to the hospital bright and early the next day and immediately began the first phase of transplant which was 4 days of chemotherapy (cytoxan) and 5 days of a rabbit derived immune suppressant (rATG). The purpose of this is to completely wipe out my faulty immune system to prepare me for my stem cell infusion. 

I would be lying if I said those days weren't tough and some of the hardest days I've ever been through. Between the nausea, fatigue, urinary catheter, and overall feeling of death it was hard to see through it and be positive. None of it would have been possible without the love and support of my family/friends and the amazing staff at Northwestern (world class people).

Room 1669 - Chateau Gunter

That takes us to Tuesday the 24th which was stem cell infusion day. They call it your "birthday" because that is when your new immune system begins to be born. (I expect presents on this day now FYI). I have a long 6 minute video of the infusion process that Blogger wont't let me upload but essentially they take my previously cryogenically frozen stem cells, heat them up, and put them through my PICC. You feel nothing during this process but you get an overwhelmingly strong taste of creamed corn in your mouth and you also emit the odor for some time. 

Over the next two days my immune system tanked to nothing (as it is supposed to do and remains that way today) as I wait for my stem cells to engraft and form my new immune system. My numbers should go up within the next day or two and that is when you know you are on the home stretch to recovery. Still not feeling myself and obviously tired as hell but much better than a few days ago.

Copy of my chart for those curious

I have already noticed a difference in my MS symptoms at this point. The work that Dr. Burt and staff do here is nothing short of a miracle and it's a damn shame it's not more widely accepted and published. I have personally seen people worse off than I here already regain movement in their extremities- movement that was lost years ago. It's not always perfect and there are no guarantees in life, but this is the pinnacle in current treatment options.

I strongly encourage anyone that knows someone who is struggling with a debilitating autoimmune disease to reach out and see what Dr. Burt and team have to offer. Don't let fear or other inhibitions stop you - take control of your future and at least explore the possibility. This isn't science fiction this is happening and it's happening without people knowing. 

I'll leave you with some videos of Dr. Burt if anyone is interested in more of what he does. It's at minimum worth the watch if you are a science nerd. 

https://www.youtube.com/watch?v=WjDS2Yq5Ksc

https://www.youtube.com/watch?v=s3TgPFy1Ozo

On the mend,

Troy

View of Chicago from my room

Update time! This past week has been a busy one.

Starting this past Saturday I began doing two injections a day of a medication called neupogen. The whole point of the medication is to stimulate my bone marrow to create more stem cells and furthermore to release them into my bloodstream. Even from the perspective of someone who hates needles they really aren't all that bad - you just pinch some belly fat and inject them slowly. 

Neupogen shots (subcutaneous for my healthcare readers)

The worst part of the drug isn't the injection itself, it's the fact that after about 4 days of doing them your bones feel like they're splitting in half (I'm assuming from the stem cells leaving the marrow into the blood stream). The good news is I only had 6 days of these. Which brings us to Thursday. Thursday was the day I've been dreading since I initially signed up for this treatment - Harvest day.

Rach and I got up bright and early to do my last neupogen injections. The adrenaline must have taken over the anticipation because I didn't even feel nervous. We arrived at Northwestern Hospital and made our way up to Interventional Radiology for vas catheter placement. After a brief waiting period I was brought back into the procedure room where a doctor and a few nurses explained the procedure and prepped the area. I was about to have a tube shoved into my jugular. Needless to say I wasn't thrilled.

They numbed the area and began the process. The entire procedure took about 25 minutes and I felt nothing more than pressure which was a relief. Before I knew it the doctor was telling me I was all set to head over to the blood center for stem cell harvest.

Feeling like Will Ferrell in Old School with a dart in my neck

We arrived at the blood center and met with my nurse Patty. She took us back into our room and I was hooked up to the harvest machine. Here is a short video of it in action:

The concept is fairly simple. It takes your blood from the catheter and processes it through the machine. During the process the stem cells are collected as well as some plasma. The blood is then circulated back into your body.

Time lapse of my stem cells

It's a painless process and I laid there sleeping most of the time. After four hours of being hooked up to the machine I had collected 5.26 million stem cells, an excess of the 2 million that is required to continue on with treatment. I was done, except for the minor detail that I still had a tube in my jugular. Patty cut the stitches around the cathether insertion site and told me to take a deep breath. It burned like hell when she pulled it out and I finally got to actually see what the doctor had put inside of me. What kind of blog would this be without a picture for you all?

The beast

I probably would have passed out if the doctor showed me that before he put it in so I was thankful for his discretion. After waiting about a half hour to make sure the bleeding stopped Rach and I were free to go home for the evening. We grabbed some Chicago dogs and called it a night.

Patty and me

Until next time,

Troy

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

“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.

http://www.cbsnews.com/news/treating-ms-symptoms-with-stem-cells/

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