I need Joel Schumacher
Updated: Oct 22, 2019
It's been 305 days since transplant, 116 days since my first glass of wine, 116 days since my first haircut, 53 days since my first virus, 63 days since my first kidney infection, 63 days since my first ER visit, 108 day since my first post-chemo mani/pedi, 102 days since our trip to Vegas, 104 days since the Elton John concert, 63 days since I went back into neutropenia, 58 days since I came out of neutropenia, 70 days since my first girls night out, 64 days since my first spa day with a girlfriend.
And 104 days since I counted days or used math in my blog.
So, you know, it's been pretty routine around here.
I haven't posted for some time and so much has happened. The deets are boring, but the gist is above, so consider yourself caught up. (Except for Vegas. Absolutely fantastic! So good to see old friends! So incredible how 20 years and 2 children has changed how we do Vegas! No, we did not bring the kids to Vegas!)
For the New Year, I made the same resolution as all of us do, especially those of us with multiple kids and a busy schedule: Organize the bathroom and bedroom closets.
As the colder weather hit all time lows, so did my energy level and that new-found ability to climb tall mountains. Actually, there have been days when I've never felt this poorly. I hit the trifecta: MS, viruses, post-HSCT. Having one of the viruses that the elementary schools provide means extra inflammation in my body. Extra inflammation amplifies old MS symptoms. In my case, cog fog, weakness, trigeminal nerve pain, and dysesthesia (the MS hug), and intense fatigue. Nights were the worst after long days of powering through for school activities and sports. No matter what, though, I'm still not letting this f*&%ing disease win (sorry, Mom).
But then the virus left the house and my symptoms are slowly going with it. And as a consolation prize, we got a 60-degree day to ride bikes followed by a snow storm for sledding.
These past 100 days have been filled with a back-and-forth dialogue in my own head. Depending on the day, I was a winner or a loser. Some days it was "This treatment is why I can be in Vegas like nothing was ever wrong!" and "Wow! This treatment improved my game! I'm finally scoring against my 8 year-old." And some days were "Damn HSCT! It didn't work on me! I've never felt this awful." "I lost my hair for this?!"
But I continue to smile at my family and take full advantage of the great days. I invoke spousal privilege when I need to vocalize my fears on a bad day. But I know that 10 months is still way too soon to determine if this worked.
I continue to see my incredible team of hematologist/oncologist, neurologist and GP. My neurologist and I decided that I will do a round of Ocrevus. My blood work shows that a few of those bad guys (remember the horror movie?) are lifting their ugly heads, so we're going to put them down. It's an easy two days of infusions. I'll bring a good book and Matt with me.
And here's the best news I was saving for last: Dr. Burt at Northwestern in Chicago, published the latest results of his study on HSCT for MS and the results have been all over mainstream media. While we certainly don't need it, it has provided quite a bit of validation for many of us who had to push past the horrified facial expressions and doubts about foreign doctors and conspiracies to harvest my organs in an international bait and switch scam. The armchair stem cell therapy experts (I didn't have stem cell therapy!) got their clinical data from an American medical journal now.
You can bet your bottom B-cell I'm gonna post and like every news report on my timeline. In my head, I'm doing a victory lap--in slow motion--with a shit-eating grin on my face. My friends and family are giving me a golf clap and a nod. Maybe a little epic 80's movie soundtrack matches my stride. Chariots of Fire. No. No. St. Elmo's Fire.
Play the game/ You know you can’t quit til its won
Here are a few links to the news since the latest data has been published in the Journal of American Medicine Association:
Effect of Nonmyeloablative Hematopoietic Stem Cell Transplantation vs Continued Disease-Modifying Therapy on Disease Progression in Patients With Relapsing-Remitting Multiple Sclerosis A Randomized Clinical Trial (JAMA, January 15, 2019)
Stem cell therapy could be life-changing for some multiple sclerosis patients, study finds (CBS News, January 16, 2019)