Day +330
I realized this morning that It's been a year since I launched this blog. That means you've heard just about enough to speak cogently about stem cell transplants, what an MS hug is, and what soda pop scalp means to this MS-er.
You also probably caught yourself thinking "she should do HSCT" when you watched the gorgeous MS-er Selma Blair sporting a flashy cane on the red carpet at the Oscars. You may even notice that MS is depicted more often on the big and small screen. You may have discovered more celebrities— or friends—revealing their diagnosis. While all of them help bring the disease to the spotlight, it also brings the shocking truth: Walking canes can come with diamonds embedded in them! Holy fashion sticks, Batman!
In the very quick 11 months since I've had HSCT, I've seen this country come a long way in its understanding of MS, of this treatment. I have watched many warriors and navigate a complicated and sometimes complicit medical community. And I'm proud to say I've become a kick-ass (sorry, Mom) self advocate. I've taken the lead in putting a team of specialists together who truly do care about my recovery and quality of life. Watching the data from these American trials prove and justify my decision has empowered me in my role as CEO of my own body.
As I recover, I make myself available to fellow MS-ers who are considering this treatment. Without exception, they all started their trip to the clinic in Mexico or Russia with the same disapproving doctor or family member who are begging them to wait until it's worse and/or an American doctor will oversee the treatment. But I tell them the same thing I was told by my own HSCT mentor, and what her mentor told her, and his mentor told him. And frankly, what we all know but don't really practice: You're the boss of your body.
As the boss, your job is to hire specialists to keep your body functioning at top performance. If your specialists tell you that your body isn't sick enough to get this treatment, fire them. If your specialist tells you your body is too sick for treatment, fire them. If your doctor isn't keeping up on the latest medical research, send it to them and then find a new one. If your autoimmune disease specialist is a neurologist, find a hematologist. Tell your neurologist that he is in charge of your brain and your hematologist is in charge of your cells. Tell them to work together. If they don't, fire them. There are great doctors right there, right near you, right now. Hire them.
Your body is your company. You would never hire an IT person who doesn't keep up on the latest tech. And you wouldn’t put the finance guy in the marketing department. Make better hiring decisions and make sure your hires are in the right department. But most importantly, remember who the company belongs to.
They get to go home every night. You live in this.
This is how it works. Actually it doesn’t, but this is how it should work.
Rant over.
On a fun note, I am a former blonde-turned-brunette now parading around as a blonde. My post-chemo hair was dark, curly and covered with grey. I decided that my 45th birhday (last week!) and my 1st stemmie birthday (next month!) are the perfect ages to become a blonde again. It’s nice to look in the mirror and not see HSCT written all over my head. It’s nice to have hair again.
So, I haven't done any math on this blog, and I apologize for that. I'll tell you this: On Friday last week, I officially turned halfway-to-90 years old! I didn't think of it that way until my precious partner reminded me as I drifted off to sleep on Thursday evening. But I slept really well.
By far, my 40's have been my second favorite age.