Comments are closed.
A Haunting
July 28th, 2015
T minus 5 days until I leave for Chicago
I’m still telling you the story from back in March — and here we are in July; I’ll get caught up quickly. I promise. I think it’s funny that some of you are most surprised that I play bridge. When I am 90, I’m going to be wicked good at it. I’ll wear a visor and everything. Also, some of you have asked if you can share this blog. Of course you can. Especially to anyone who has MS and is thinking about HSCT.
The day after I return from Chicago I find a Facebook page for people who’ve undergone this treatment there. Someone just rode a bike for the first time in ten years. Someone just stepped out of a wheelchair. I spend the entire day reading this page and crying. Why am I a sad sack? What do you call a deer with no eyes? (No eye deer.)
Also, one thing I learn from the FB page is that insurance denies this procedure a lot. Many people are having long-drawn-out battles with their insurance company. (Is this foreshadowing? I would be if I hadn’t already told you that I am leaving in 5 days.)
I have the informed consent form. I know from my job that this is supposed to be easy to read — pitched at about a 6th- to 8th-grade level. This form is 20 pages long, single spaced, so it must be designed for a very smart 6th grader. I figure that I want this treatment so badly, I am probably reading this for what I want to understand, not for the truth. I would have preferred for the nurse to walk me through it, step by step, with the form in my hand so I can ask questions. Instead, I send it to my friend, Cheri, who is lovely and wise, especially about this sort of thing.
She says that everything looks good, but suggests that I speak with a few other doctors. So, even though I just want to keep the ball rolling, I set some things up.
This is what I get:
- From my neurologist. I wouldn’t bet the money and the farm on it, but if you have the time and a big wad of cash, I’d say it’s worth a shot.
- From a doctor that specializes in stem cell transplant: I don’t think autogenic (using your own stem cells) stem cell transplant will work in the long run. MS is like a grenade. Pins need to be pulled from it in a certain order, and we don’t know that order. One of the pins might be a pre-disposition to MS. He recommends Allogeneic (a sibling’s stem cells). My sister, Laura, gets tested, but she is not a match. The nurse calls to say that we are dead in the water. Those were her words.
- From another neurologist: You are not progressing enough to have this treatment. I don’t think it will work. Also, I have no way of telling if this has progressed to secondary MS, and this doesn’t work if you have secondary MS. (The specter of secondary progressive MS raises from a far-off graveyard to haunt me.)
I email my neurologist to ask: What do you think the chances are that this is secondary progressive MS? I get no response. The hauntings increase.
I re-read the JAMA article. Sure enough, they tried this on people with secondary progressive, and it didn’t work.
Okay. So, the FB page. I could ask them. I pose the question, then stalk the webpage, with my little secondary progressive ghost peering over my shoulder the whole time.
The response is overwhelming. Do it. Do it now. Trust Dr. Burt.
I don’t want to trust him. This is the MOST unscientific way to proceed, but my ghost and I schedule the next set of appointments in Chicago.
test Filed under Stem cell transplant for MS | Tags: Chicago, Dr. Burt, HSCT, MS | Comments (9)9 Responses to “A Haunting”
What do you call a deer with no legs and no eyes? (still no eye deer). I remember being told that joke by our waiter at a diner in Wyoming the morning before heading to Titcomb basin in the Wind River Range.
I remember when they told me the BiVAD was terminal, that no one has ever come off of it, it was transplant or death.
Those two moments seem so far apart from each other, and yet they aren’t because they are my life.
I’m here.
Essentially you remain open, strong, funny, and true to yourself. You may call me crazy, but it looks to me like you are going into this with the correct state of mind. All the best!
As if I didn’t already know you’re my soul sister – I was just wishing for a bridge partner this morning. We’ll play after our marathon training.
You, my friend, are a bad ass. But we all already knew that.
XO
Always eye-opening to be on the other side of the CRF, innit?
And that nurse needs a refresher smack upside the head for her “bedside manner.”
I love the ghost image. It’s a synchronicity from the future, one possible outcome. You’re coming to the edge of the big drop on the roller coaster, and you’re gripping the seat belt tightly, but with your eyes open. You’re living the definition of true courage — not wearing a “No Fear” tee-shirt (usually a lie or sign of low intelligence). We’ve got your back, but you’ve got your front.
Oh, and bridge, really?
You are so brave.
(And your little ghost too!)
xxoo
Karen – what is the other joke – the one you tell after the no eye deer – not the still no eye dear but the one where you put your hand between your eyebrows and wave it around?
Did you know that Davey Crockett has 3 ears? A left ear, a right ear, and a wild front ear.