How It All Began

I was a little disappointed at my neurologist appointment last December, when my dr failed to congratulate me on my 24th MS anniversary. Of course, she was probably still in school then so I can see why it didn't make a mark. I'm sure the neurologist who did interpret my first MRI is retired, and or dead by now. So I guess I'll just have to buy my own anniversary gift. But this way I know I'll like it and it will definitely fit. So I guess it's a win. Or maybe Dr S is waiting and has something  extra special planned for my 25th, this December!


It's not like its a huge cause celebre anyway. But I'd never turn down some extra half and half (hint, hint).


In fact, the original event started out kind of lame. Pun definitely intended.


I'd been having weird feelings in my legs. They had were heavy and stiff  for weeks. Like they had been encased in lead. I remember going to a friend's birthday party and we were playing a relay game and I felt like I was walking like Frankenstein. It was dark out so no one said anything. I enjoyed the fancy Japanese meal, chopped and cooked in front us, like  all the other party goers. I just didn't contribute to a win for the relay race. Later my new gait caught my sister off guard and could not stop laughing. So I could have been a good party  add-on. If it had been lighter. Oh well. their loss.


After a few weeks, I think, it didn't go away so my mom made an appointment with our family Dr. He was our doctor for as long as I can remember and he was always very comforting for whatever you were in for.   Whether it was   ring worm or the fact you couldn't feel your legs. So of course, he was very professional and reserved as he did the office exam.

I didn't feel too worried. Just mostly annoyed.

My mom had been reading up on all the potential contenders to cause such symptoms as I was experiencing: Guillon-Barre was the horse we were rooting for. Or possibly some strange tropical foot worm I had picked up in Hawaii the previous month and it could all be fixed with an antibiotic. Even an enema would have been fine, if it would make it go away.

I can only imagine the ferocity with which a parent might investigate potential life-long mates for your children when you are afraid it might be that no good guy with the earring and no job she might get shackled with. So we searched high and low trying desperately to avoid what was the most likely culprit. MS.

My mother's sister, my Aunt Moira, had spent some of her remaining weeks at my parents house, but I only remembered a little of her. Her hospital bed was set up in the Blue Room.  Which was actually the room I was born in and was later my own for several years. I remembered  her eye patch and her slurred speech. And that she had been an opera singer. (Oh, If I could only have inherited her voice instead. Happy Birthday's here would not be such a travesty.) But I didn't. I remember playing on the big cannon at my Grandparent's house after her funeral.

She was 27 when she came to stay with us. She'd only been diagnosed 9 or so years before that, but my mom is pretty sure she had symptoms long before then. But it was not so easily diagnosed back then. And really all they could do was give you steroids.  She was in and out of the hospital for awhile. She'd bounce back and they'd send her home. Then she'd get worse and go back in, probably for another round of steroids. And finally she asked to just stay home and eat Haagen-Dazs coffee ice cream. ( Apparently, we also have love of good treats in common too.) She didn't' want to die in the hospital.

She rebounded one last time after which she went home to my Grandmother's. Where, finally, with the aid of some morphine, she went to her eternal home. I was curious to know just how she did go, and though I'm sure it was probably not too far anyway, I don't think hastening someone's death is ever anyone's place ,or something you can get over. So just don't.  There is always the next morning and opportunities you couldn't dream of in your current state but you are so glad you got to see that smile, or hear that word, or hold their hand. And you are glad you took every opportunity of embracing life while you could. Even if its hard. Because life is really hard.


So we went to the appointment and gave the doctor our list of choices. And in is very calm way, he soothed us and said we'd need to wait for an MRI before we could discuss a diagnosis. I remember not being too freaked out, or nervous. Just kind of matter of fact and 'woah, my legs are really funky'. But I still wasn't really worried. As the doctor escorted us back to the waiting room I heard a mention of MS. I could tell my mom was starting to lose it. Which meant of course I was going to too.

"Mom" I said  "don't cry. You're going to make me cry."

So obviously we both cried.


But still, there was some hope.  The MRI was scheduled for the next day. At some ungodly hour. Like 9 am. Which is anathema maranatha in my family of night owls. I got the  instructions of no metal or make-up (as if I 'd get up early to apply any, if I did even wear it, which I didn't). I slept to the last minute then quickly pulled on my stretchy pants after I rolled out of bed and into the car.


But in that one day I had time to think about the possibilities and things were starting to "feel"  real to me and the what ifs? and now whats? came pouring down.

I'd never really set my future plans  in stone. I was 13. There were so many options it was difficult to choose just one. After I read Madame Curie, I thought "great,  I"ll be a physicist!"  But being not gifted in mathy type things brought me back to reality. I had always felt a strong pull to Mother Theresa and her work. I had sent her some money and a picture of me in my First Communion dress. She sent me back a letter typed out on the back of a prayer card and the picture, which she had signed. But  I might like to have my own kids. Would I be able to? Would I ever get married? Would Prince Charming be willing to stop our trusty steed just at that shrubbery up yonder so I could go pee. Again? Would he get annoyed and say no? Would I be able to ask? (Spoiler, he hasn't and wouldn't.) So its all good and way better than the fairy tales I would still lose myself in. Like the one about the Russian-Jewish convert. Which still cracks me up because Shane can speak Russian, is a convert, and I think has some Jewish blood on his German side.  And obviously I could have kids. Unless the six living with us are just squatters. But that's ok. I'll take them any day.


So many thoughts crowded through my brain that morning. The main one being.

"Man I'm tired. Why couldn't we have gotten an afternoon appointment?"

I have a knack for zeroing in on the important aspects in a situation. Sleep and what's for dinner.

My dad met us and we had lunch.  Or maybe it was after the neurologist appointment and the reading of the MRI. I'm not sure. I hope we went to Dick's, but I think not. Which in retrospect was probably a good thing. Don't want to taint a Dick's Deluxe with an unpleasant memory.

We met Dr. Mesher for the first time.  He did the typical neurological function exam. And then we got to the MRI. And there were the bright hazy spots on the brain.And yes. It was MS.  I think I would have been shocked if it hadn't been. But not unpleasantly. And then came all the questions no one can answer but you ask anyway. Pretty much at all the appointments for the rest of your life. And the answers are all the same too. We don't know. I can't say. We'll just have to wait and see. It's different for everyone.

Like I said, the only thing to be offered back then was a round of steroids. Or maybe that wasn't offered either, as I was so young. I just remember trying desperately to get him to give me a hint of what to expect and when. Which he couldn't. Then my melodramatic self kicked in.

Would being at home be a risk to any of my siblings?

I'm still laughing at that one. Yeah, I'm really not sure where that come from. Maybe I was feeling cut off and thought making it real would....um I'm not really sure what it would do. Maybe I was trying to get out of my kitchen job next week. Or maybe it would be easier to cry for some other reason, like leaving my family, than cry over the crap hand I'd just been dealt. Because it seemed silly to cry over what your cards might be in the future.  But you knew the possibilities from  your draw pile and they all sucked.

The doctor kept his cool and didn't look at me like I was a freak and explained,
No, you don't need to be sent to a desert island. Yes, you can have kids. No, there aren't any drugs available yet.


Cell phones were not so ubiquitous then, so we waited until we got home to share the news. I think I cried some more. Then took a nap. Then we ordered pizza. And some time later another aunt came over with a big pink box of King Donuts. Maybe things weren't so bad.

Oh Where Are My Pictures?

If you  know the hairbrush song from Veggie Tales, use the melody when reading the post title. I do.

As the title suggests, I can't find any pictures more recent than January. But I did find these ones.

 There's the Christmas tree. Now its gone!

Every year for Christmas, lately, we usually agree to  go in together and get something bigger than would fit in a stocking. And then leave it at that. And then Christmas morning chide the other person for getting stocking fillers too and good thing we both  did or one of us would feel silly. So this year we went all out on a new bookshelf. We have needed one desperately for a long time. The shelves in the library and the bonus room have been full and books have been piling up on the floors and window sills. But it's not like it's dirty laundry. Although a few socks could have snuck in between Don Quixote and The Federalist Papers. Honestly, I have read neither of those. I did watch the Man of La Mancha but I'm pretty sure they never made a movie out of the latter book. But it makes me feel well read to have them on the shelf. We decided to put the enormous book case next to the huge clock so neither would feel inferior. And its been a great addition.

Having the books more accessible has made for so much more reading and conversation. And conversations about reading. I'm so glad we finally got them.

Speaking of addition, I decided to do some subtraction in the kid's school supply department. Fiona and Malachi got into the school cupboard and spread the zillion flashcards just waiting to be strewn about like rose petals. So I summarily swooped them all up and prepared to dump them in the recycle bin. Kateri begged me to save them so she could put them on the free table at homeschool class. Because someone might want them! She did. No one took them. I guess we are not the only ones.

Fiona got a back pack for Christmas, I wasn't trying to do a Christmas theme but I guess that's what you get when all your pictures are from early January. She and Malachi put on their packs and go adventuring around the house. Which is pretty much the cutest thing.

And I would be remiss if I did not mention the fact that it is MS awareness week. I think it got lost in International Women's Day? (I guess that is a thing) which was earlier this week. Actually from the headlines it sounds like it MS awareness week is actually a month. So, back off bitches! The orange t-shirt gimp brigade is here.

But not here. Ever. I don't wear orange. And not just because I don't want to look like a convict.

Speaking of orange shirts, quick up-date. The hospital in Florence is still reviewing my case for HSCT. The hospital in the Philippines said yes they could fit me in, in June or later. Moscow said yes but not until 2018. Mexico said yes but no date yet. But I'm waiting for a yea or nay from Italy until I sign up for anything. Shane made a handy-dandy spreadsheet for me. color-coded and everything for where we are in the process for each facility. And I might make an impassioned plea to the investigator at the Hutch - which is still red-just to make sure they are really serious about last two NOs they gave me. but there are more greens now on the chart, so its looking real. 

Hopefully soon we can start working on our Italian. I'm glad I started when I was young. Now I can ask anyone "andiamo aprendere un café?"  if they'd like to go for coffee). But it will have to be on a Lunedi or Martedi. I forgot the other days of the week.

Introducing My Stunt Double and HSCT update

Maybe. An astute and avid reader of my blog, aka Mr. Factchecker, aka Shane, aka my Husband who I think only reads a post if I link to it from Facebook, pointed out last week that the post I wrote seemed really confusing, so I decided to try and clear some confusing points up. And instead I deleted it. Not on purpose. I  typed up some pre-ramble to add to it, then watched in horror/confusion/disbelief as my finger hit the delete button. Then when it asked if I was sure I really wanted to toss the post again I watched my pointer stretch itself out and almost reluctantly hit Yes. And it was gone. I'm not sure why I felt surprised. It was really like watching a car crash, something beyond your control. Except it wasn't. I probably only have about 20 minutes before the kids come in from outside (Oh wait, here they are) so I am not going to try and re-create the muddled mess it was. And you are welcome.

Things have been kind of busy around here. If you did happen to read the mysteriously disappearing post, it was about a "new" therapy for MS and other autoimmune diseases called HSCT, or Hematopoietic Stem Cell Transplantation.  It's not really new in and of itself, its been done for certain types of blood cancers for quite some time, but since it's "off label" it has to go through all the hoops before it is accepted as a legitimate therapy for MS. Meaning most insurance will not cover it yet. And it costs up to $400,000.

For the procedure, you have your own stem cells extracted. Then you are given chemo. Once your immune system is 'mostly dead' they swoop in and save you with the extracted stem cells they harvested in the beginning. The stem cells are naïve, that is, they  don't remember the taste of myelin and don't go around chewing on your central nervous system for another fix. Sounds great to me.

There are two versions of HSCT -Myleoablative and Non-Myleoblative. The first wipes out your immune cells, including the bone marrow cells. The non-myleo leaves the bone marrow alone. They have had amazing results with both versions, though the non-myleo sometimes needs a second round of chemo some months after. Initially it requires up to a month long stay, or longer, in a hospital. With the myleo HSCT it will require re-vaccination for your past immunizations, generally not  with the non.

Post HSCT the myleo version results in a complete halt of MS activity, the non tapers off over a few months or longer but eventually gets there. It does not do this for everyone, but around 80% or more, which is a far larger percent and with a far more drastic stopping of progression than any of the drugs your neurologist can give you.

Lemtrada is a newer drug just out for MS. You gotta love the names they come up for these drugs. The actual name of the drug is alemtuzumab. Under another name ( Campath) it has been used for the treatment of certain types of leukemia. It was pulled from the market in 2012, then returned with a  new name, Lemtrada, and a new price tag. Basically it went from about $2,000 a dose to $20,000.

The story is you get 5 days of it. Then a year later, 3 more days. I don't know if they know how long beyond that it keeps being effective. But it kills off certain of your immune system cells. And then does it again a year later. So you are constantly being knocked down. It makes much more sense to me to just get it all done at once, and then start to build up your new immune system and keep it going. It also  comes with some fun cancer risks and leaves the lucky recipient open to a host of opportunistic infections. Sounds fun, right?

While were on the crazy-name train, due out this year is ocrelizumab. Another immune suppressing drug. As we discussed all this with my neurologist I made the brilliant connection- alemtuzumab-ocrelizumab. They both end in MAB. And they are both monoclonal antibodies. MAB. My neurologist was quite impressed when I popped out that gem. Then she let me go back to watching Sesame Street.

And she very nicely took the paperwork from a clinic I am applying to and filled out the information they want. The previous week she ordered another MRI with gadolinium, despite the fact I'd just had one in December without contrast. It was worth it as there was an enhancing lesion, which you can only see with the contrast agent. As we were filling out paperwork at home Shane asked,

"So is it wrong of me to hope you have an enhancing lesion?"

All the gadolinium does is highlight any recent damage, meaning there is new activity and most of the clinics prefer to treat patients with active MS. Funny name for what causes you to become less active in real life. But we found one, so yeah me!

After giving her the paperwork we did the whole walk the line, touch your nose touch my finger routine. It was ....fun? There was no math so I was happy. And I didn't totally flunk the balance part. Also good. She did say she'd I've me between a 4 and a 5 on the EDSS scale. (You want to be as far from a 10 as you can)

So after our second trip to the office, we finally had and submitted all the paperwork to the hospital in Florence!

What? Florence? I thought she wanted to go to Germany? Or the Hutch?

I did. But the Hutch said no. And after a couple weeks, so did Germany. But then we found Florence. They do the same procedure (BEAM, it's called) of myleoablative HSCT that the Hutch is doing and Germany does as well. Rumor on the Facebook HSCT forums is that Florence has a little more wiggle room for who they will accept than Germany. There is no other hospital offering the BEAM protocol. The Philippines is just about the same as BEAM. the others are non-myleoablative,  (Russia and Mexico).

But the advice is, apply everywhere and take what you can, when you can. So Shane did. I got to push the send button on the final application for Florence. So I had a part. And I got to read his correspondence so I got to see how well he presented me to them. They are in for a fun surprise if/when we finally get to meet in person. But They've seen my brain so I'm sure they are prepared. Or in for a fun treat. Russia, the Philippines, and Mexico all said yes but, again I want the full meal deal. One and done.

So we stopped looking at neat places to rent in Heidelberg and are looking at some crazy cool places in Florence and the Tuscan countryside. Not sure what might actually be the result of it all, but it is fun to think about the kids having a great time while I get some serious alone time.

I have also thought of turning this blog over to Shane, this is the stunt double part. He's a good writer and can communicate real facts in an effective way. And it wouldn't take him days to get the pertinent information concisely packaged and posted. But he has a job, so its kind of iffy.

Sorry if this still doesn't make sense. For the real story on  HSCT check out WHEELCHAIR KAMIKAZE'S blog.