Sunday, April 24, 2016

Ring, Ring!

Or whatever that bubbly sound is when a Skype call comes in.

We heard back from Italy and the Dr. wanted to schedule a Skype call with me. I forwarded the message on to Shane. Shane wrote back to me and said it was all taken care of. At 9:00 on Thursday morning we could expect  a call! I asked him if it would be weird to have him on the call as well. He asked if I'd read his reply to the doctor. So I went back to his email to the hospital team (from me, like I said, he's also making me look good on paper) and re-read it. There it was. He gave them my husband's (that would be Shane's) Skype name and mentioned he(Shane again) would be joining us on the call. (Cute and smart!)

Shane  told me it would be a video chat. So I immediately hung up the phone and called the salon. Usually I wait until my neighbor points out 'Wow! You've really got a lot of gray!' to get my hair done. But this time I decided to beat her to it. I thought just in case they thought I was too old and might not be able to handle the procedure, I would nip that possibility at the root. I ended up having to take an early morning appointment on the week-end, which I regretted for about 5 min when I woke up Saturday morning. I figured I'd get a hair cut too. I pondered trying something different/shorter/crazy as I might not have to keep it for too  long if I didn't like it. Shane thought maybe I should enjoy it long for as long as possible. Which I did. And I'm glad.

All week we were working on our list of questions to ask. By which I mean the night before, we sat at the computer together and watched a movie. Then we jotted down the questions we wanted answers to. We had looked over the rough treatment plan and discovered a four-week gap between hospital stays. 2 weeks in. 4 weeks out. 4-6 weeks in again.

I was really excited about the prospect of maybe being able to come home for the four weeks, in the event we do not take all the kids. The four weeks is before your/my immune system is destroyed so it seems like it could work. Other patients talked about travelling at that time and it felt like it would help break up the hardness of not being able to see the kids for 2-3 months at all. Honestly, I'm not worried about all the other aspects of the procedure.

Nausea? I had the worst morning sickness with Malachi. Most days I was  bedridden and threw up every day for 3 months straight. No matter what I did or ate, every evening without fail I had to take a call from Ralf. So awful.

Losing hair? Big deal. After all the post-partum hair-loss I've really only got about three left anyway.

Headaches? Those were the worst with Cyril and kept me from doing just about anything. I do feel like I 've had some good training and can't wait to put it all to good use again.

But now I'm not pregnant. I won't be taking care of a 2 year old as well feeling crummy. I won't be nursing Fiona, so I can take big pain killers when I need them. I can lie in the bed. Read a book. Watch a movie. Someone else will bring me food. I know I'll eat my words when it comes to it, but for now, it all sounds kind of dreamy. Plus, like everyone who's gone before me, the knowledge that this is changing my future for the better will carry me through.

Shane asked if I thought I'd feel differently about the future and planning things afterward. I had to think about it. I don't know what it is like to plan without the thoughts of 'I hope I can do this/walk/have the energy/drive/eat real food' like I'd like to be able to in order to  participate in whatever the future plan might be. Having a  host of not-fun surprises that descend on you at whim does make for iffy planning. It feels a bit like living under a Damoclean sword. I don't remember when it wasn't there.  Or what I was like then. (Except I could wear high heels. Silly thing. I don't miss those at all.)


I'm not really sure how to think about it all. I know, in any situation, we always have a choice in our response. Even very difficult situations, which mine really isn't. Inconveniencing, yes. Limiting, I might let it be more so than it is.  But not unbearable. I would like to be able to say 'Yes. This is so. But I choose to respond like this.' And not let it influence my choices. I'd like to be the kind of person who finds the bright spot in every situation. Who greets adversity with excitement for a new challenge. Who embraces the unknowns with the enthusiasm of a kid opening a Christmas present. Who sails into uncharted territory with the energy of  a sailor looking for lost treasure in a new land. Who delves into the earth like.... Ok I'll stop. Its getting silly.


But when your Christmas present is 'oh look! Concrete boots! You shouldn't have.'
And you open the treasure chest and find a 'feels like you are riding  a merry-go-round for life card.' And you can't quite keep up with the what feels like 50,000 steps, but its only like 3, or 7. No, Blue! And  you are not allowed to write anything down,  but you need to do them all, in order, to get to the end of the race and get your prize. And even if you do give up you can't remember the way back or which gift goes in which box.  Well. One gets really tired of surprises. And is tempted to stop opening boxes.

Thankfully, Shane is the adventurous sort. He loves opening boxes. And he has the energy to pull me along as well.  He was listing out all the options for potential HSCT facilities and dates, trying to get me to focus on what was most important in my choice of location, procedure, and timing. Would I wait X amount of time to get treatment A? or B? Would I take the sooner date or hold out for the preferred location? If AX is to CX  as BX is to RQ, then WTF is P? Then my head exploded. So I made a latte and sat down. I know he is only trying to help me clarify things in my mind. But it still hurts. It helped. Florence is still my preferred place and treatment regimen. After the Hutch. Shane has to keep reminding me that ship has sunk. Not that I don't know that, I just keep thinking how much easier it would be for everyone. And now my dream boat, after Shane, is to go to Italy. And they were about to call us!

We got the kids up early, you know, like 8:45, so breakfasts would be over before we got the call. We sat down with pen and paper (Shane was going to be note taker)  and our list of questions. Then I had to pee. So I quickly ran to the bathroom and was relieved, ha ha, to find they had not called while I was gone.

9:00 came. 9:05.  9:10. I peed again. We checked the time. CET to PST. Yes, we had it right. Maybe its like the waiting room. It will take another 15 min to see the doctor. 9:20. Maybe there was an emergency and they are saving someone's life. That would totally take precedence over the Skype call. 9:30. Maybe they are on Island time. Could happen any time in the next 2 hours. Finally, at 10:10 Shane sent a message to the doctor saying we were still waiting, maybe something went wrong. Then he looked at the account and realized there were three options for calling us. We were on one account, and had given them a different account. And the accounts were not linked. Which for life of me makes no sense. We checked the other account and saw the incoming call at 9:00. And 9:02. Then again at 9:06.... altogether 10 of them! We sent a mail explaining and apologizing profusely and begged them to give us another chance. Ok. We didn't beg. But Darn! If only we'd  done X first, or Y (enough with the variables!) sooner we'd  have caught them before they gave up and left for the day.

We wallowed in our disappointment for a bit. Then Shane went to work, because that's what he does. And I went to my sister's house for margaritas, because she had some left over and I wanted to show  off  my cute hair.

The next day was Friday. Radio silence on their part. We sent one last email explaining the problem, how it was fixed now, and whatever time worked for them we would make it work.

The weekend descended like a great big sucky thing. We were frozen (Ok, a frozen sucky thing)waiting for Monday to come and hopefully bring us news. The whole process of applying, waiting, being rejected,(I'm looking at you Heidelberg and Seattle) waiting some more, getting hopes up, messing up, feeling abandoned, but still hoping. And waiting. Is really exhausting. I said before, I don't know how anyone ever gets anywhere in the process without a Shane. It's like a fulltime job. On top of his full time job. We've been doing this for months and were hoping this last call would finally give us the go ahead to start making plans. And now it was gone. Like Christmas just disappeared . There wasn't even a box to not open.

So we continued on with the days. Doing mundane but necessary things. Cleaning out closets. Grocery shopping. Prepping for AC installation next week. Which is very exciting but also reminds you that you might be here to enjoy it all summer long because you are now at the back of the line and  won't be in Florence until 2020.

Then, this morning I checked my mail, and oh happy day! Just like when you get to the bottom of a box of cereal on a Saturday morning, and despite the colorful picture advertising the fun toy included in every box so you've dutifully eaten 5 bowls, including the sugary dust you shook from the bag, and still there's no prize. You've ingested all those crunch berries for nothing. So you give up, pull the empty plastic bag from the box so you can toss them in the garbage, and there at the bottom of the box is the brightly colored and totally useless plastic toy. Your weekend is suddenly saved!

There in my inbox was Florence. Saying no worries. We don't hate you. It happens. We will set up a new time and let you know as soon as possible. It totally soothed my restless spirit. Shane was equally pleased. And hopefully soon we will get to sit and wait for the electronic bubble sound of Florence calling. We'll be ready. Again.





Thursday, April 14, 2016

More of The Same

After deleting the post explaining the crazy medical treasure hunt we've been on, I thought I'd leave a few educational nuggets here in its stead.

This ARTICLE talks a little about Dr Burt and the procedure. And highlights some of  economical benefits of HSCT has as well.

Dr. Burt does his work in Chicago now. We have applied there, along with all the other clinics. His procedure is different from the one they are running out of the Hutch here. The Hutch is following the BEAM protocol, if you're curious. Florence also does BEAM. Dr. Burt's does not ablate the bone marrow cells. Or as the HSCTers refer to it, it's non-myelo. So its is less arduous, has a faster recovery, and you might not need to re-immunize for all your childhood vaccinations. However, occasionally patients might need an additional dosing of a chemo drug within the first year if there is any disease activity. To rule out this potential possibility many people, me included, try for a clinic offering the BEAM protocol. BEAM has  shown to stop progression immediately. The non-myelo does achieve this as well, but a bit more slowly. I think at about the 2 year mark they are even? But don't quote me on that. Or on any of my spelling of big medical words ar terms. I think I have finally gotten the letter order for HSCT down, but sometimes I still slip.


Seriously, it has been crazy chasing down all the information the various clinics want/need. I don't see how anyone without a Shane on their coordinating/technical team ever successfully apply anywhere. If left only to my own devices, I would have just cried and given up the time I unscuccessfully tried to burn images onto a CD. Or was it  a DVD? I don't know, because Shane did it all. So of course it all worked.  In my acceptance speech I will certainly give him all the credit he deserves. I am still waiting until all the acceptances come in to write it though.

Like I said, Russia will take me in a couple years. Germany says 'Nicht!'. As did The Huch, all three times I begged. The Philipenes say 'yes', or 'si' because most people speak English or Spanish in addition to Tagalog. And we are still waiting to hear what Florence says. And Chicago. Everyone said apply everywhere, take what you can get. So we did. And we will. As soon as all the si's and yes's come in.

Actually Chicago says I look good on paper so they might invite me to come down for a visit and then they would give a final yea or nay. The upside to Chicago is it is not on the other side of the world and insurance might cover the procedure so we would not have to indenture the kids for a year. Good thing we had six of them if we end up going to Florence. at $1500 a plane ticket we migh rethink the whole family vacation thing. And it looks like they suggest you plan on staying about 3 months.

And Italy wrote back this morning they would like me to set up a Skype call with the doctors there  next week. I read it after Shane left for work so I squealed then called him and asked him how I'd do that, I think I have a Skype account but I don't know what the name/number is? I had forwarded the email to him and he already set up the video chat with them. Video chat!!? So I  immediately hung up and stated preparing. First I called the salon and made a hair appointment.  And now I';m making a list of all the questions I might have. And trying to think of how I'll keep the kids quiet for an hour and would it be weird so have Shane on the call too? He's really cute and much better spoken so they might appreciate it, but maybe they'd like to see if I can manage on my own or not. And would that make me more or less likely to get in? Pity points? I'd take them.


Too many thoughts to get through. Good thing I have a week.

Also in preparation, Shane and I went last week to meet with a hematologist here. Though the Hutch did turn me down, the coordinator was super nice and sent me loads of links to studies being done by other facilities and suggested I start working with a hematologist here for follow-up care in the event I end up going out of country. So we met with Michele and  she didn't think I was crazy  but offered her support and services for anything we might need.




 Just to show our lives are not completely consumed by medical stuff, here are the babies, as everyone calls them, on Holy Saturday. I really liked Malachi's thoughtful stare. And his fancy duds.











Wednesday, March 30, 2016

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.







Thursday, March 10, 2016

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.


Saturday, March 5, 2016

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.

Thursday, September 17, 2015

New Things

Or, things that should be old by now but are new for me. And , no I am not talking about any new technology. Though speaking of technology, for some reason blogger is not talking to my One Drive, and I am really not interested in sorting out any more petty squabbles and digging into 'he hit me first' stories that can, and do continue for days. So I'm going to ignore it until they sort it out themselves. Sadly, the internet is the loser as I can't post cute pictures of my super cute kids. But no pictures does not preclude me from poking the keyboard for a bit, as I actually have a few minutes  before somebody draws blood and I have to clean it up before the stain sets.(Hydrogen peroxide for all your children's activities. Works on urine too.)

Fiona is napping so I was going to read more of Fr Spitzer's book, but the 'atmosphere' is not conducive to thinking so I figured I could let the gelatinous gibberish that is my brain's offspring lately coagulate here for a bit instead. My apologies. Especially since I can't make it up to you with a (Fi)cture.

I really don't know how other moms find time to write. Or eat. Or brush their hair. I have yet to find a way to facilitate any independent, as in just me, activity that does not necessitate copious amounts of hydrogen peroxide, bleach, or new wall board. Or toilet seats.

Speaking of toilets, Shane, who was consoling a naked Malachi as he was pining for his brother's tape measure,   just leapt off the couch and exclaimed,

"What is that on your finger?!" Then proceeded to have the couch and  his, Shane's, pants sniff tested to make sure 'that' was not anywhere else. It wasn't. We, or rather Shane, scrubbed Muffin's hands and put a diaper on him. Apparently, he had used the toilet (yeah!) but still needs some help in the clean-up department.

I just stayed back and watched the whole event. I had been typing for three minutes so I figured some catastrophe was bound to happen any minute. It's not so bad when you can look at such events as a disinterested third party. Or highly entertained by it because its always fun to see people freak out about what you spend most of your day dealing with.  Not that Shane freaked out. He's used to it by now.

It also helps if you do get called in for the clean up. Yesterday I decided to get a jump on the clean up and went out to buy new toilet seats. (Sorry for the toilet-themed post. That's just a consequence of having little boys.) Also a consequence of said boys having difficulties trying to pee in that microscopic basin that keeps moving all over the room just as you lock on to it. Every visit to the bathroom is a like new game of Asteroids. So off to the hardware store I went to try to restore some decency to the bathroom. (You are welcome.)

I had no idea there would be so many choices in the toilet seat department. Also, I had absolutely no idea they made some with built in night lights! Seriously? I don't need another thing to keep supplies with batteries.  Of course I took a picture to show Shane.



 His response was,

"Really? That's so cool! Did you get one?"

Needless to say I did not get anything that would encourage more nighttime activity. Or boys guzzling gallons of water before bed to increase their trips in the dark. Just like 'free' time, sleep is a highly valuable and scarce commodity these days. But maybe I'll remember when it comes time to fill Shane's stocking.


He's earned it this year. Especially for taking care of the poo finger.

I was going to share our academic plans for this year but this post has taken me 5 hours, as many cups of coffee, twice as many diaper changes (for the kids), and  every other sentence I get questions like 'what's for dinner?' 'do you know where my book is?' 'what's the air speed of an unladen swallow?'

In a nut shell we are doing less. I signed the kids up for lots of classes and the week before we were to start I cancelled them all. Except two. The little kids are continuing piano, and as this is Audrey's last year for Drama and Trudy offered to take her to that, we kept that as well. But nothing early in the morning!

I can't believe I didn't so it sooner. As in years ago. It takes so much energy to leave the house with all, or even some, of the kids. And even though Shane's mom has been doing the driving most of the last couple years, it is still an effort to make sure everyone is up and breakfasted and has TWO shoes in the morning. Matching was optional. Plus, I was realizing that outside classes were taking up all the schooling energy I had and leaving us with nothing for the work I would like to be doing with the kids.

Add to that two toddlers, dentist appointments, grocery shopping, and occasional doctor appointments, I'm swamped. As energy is scarcer and scarcer these days and ignoring that fact turns me into exhausted,grumpy, none-fun mom, I finally felt it was time to speak up.

I brought it up to Shane a week before we were to start, bracing my self for the talk I had given myself every time I felt overwhelmed, and honestly, scared, by it all. He listened and then said,

"OK. I do think we need a more family centered and directed school year , not focused or restricted by what classes are available. And something that will not suck all your energy. Let's do it."

None of the,

'oh come on. Don't be such a wimp! My mom's been doing all the driving any way so its not really any effort on your part. This is what we are supposed to be doing now, for the kids.'     Which is what I had been expecting.


So the next day, I joyfully wrote cancellation checks to all the teachers and only had to rip up three of the five, for clerical errors. not sure if it was just the fact I had to write so many numbers that tripped me up or if I was just excited to be unsigning up for the stress that would have accompanied all the classes. Plus, knowing I would not have to do all the tuition checks again in a month was pretty exhilarating.   Either way, every time I realized it was not going to happen I was thrilled and over the next week felt more and more assured we were doing the right thing, planning the activities and subjects we would be doing instead. Shane felt the same way, so I must be right. And the first day of nonclasses while the other mom's were scrambling to get kids in cars and diaper bags and lunch bags packed, I was still in my pajamas drinking coffee. Not because I was being lazy but because we had the crappiest night of sleep we'd had in a long time with both babies waking up just before midnight and not going down again until 2:30am. But the entire time Kateri and I were tending to the babies , Shane still had work in the morning so I thoughtfully did not bug him, all I could think and rejoice about was the fact I didn't have to drag all the kids out of bed in a few hours.


I had always felt resentful of the schedule I had forced us into in years past. I felt a tension between what the baby(ies) needed and what participating in the kids' classes required i.e. being away from home all day. Camping out in the car for hours. Coming home exhausted at dinner time with no energy to cook or clean. Finally recovering just as the next week started. Looking back at those years I  think what an idiot I was. Or maybe that is just the Now Me imagining doing it. Maybe the Then Me did have more energy and a bigger brain. Definitely had better hair.

My definition of homeschooling has definitely evolved over the years. And I am sure it will continue to do so. Right now our plan feels a comfortable fit for the family. I'll share some more details on curriculum etc later. Shane took the kids outside to play so I want to use the time to get dinner going and if the post got any longer I think we would all die of boredom.

 
Oh, look at that! Shane, the peace broker, finally got things talking to other things, resulting in my being able to post a picture. This was from last week. My dad's sister, Sister Judit, was here visiting for a short time and we got to host her for lunch. She is a nun with the Society Devoted to the Sacred Heart ofJesus  (see if you can spot her). She was previously in Hungary and before that Taiwan so it was great to see her here again. Now she is in California, they get sent wherever there is a dire need, so hopefully there will be more opportunities to see her.


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Thursday, September 10, 2015

Tradition...


....just because its how its been done for years doesn't mean it's the best.

I thought the story of the girl making a roast for her mom was great illustration of this. The girl invites her mom over and decides to make a roast for dinner. Her mom is watching as the daughter takes out the roast and readies it for the oven. The girl takes a knife, slices off an inch from each end, and throws the scraps in the garbage.

Bewildered, the mom asks,

" Why are  you wasting good meat?"

Having seen her mom make roasts over the years, the bewildered daughter answers,

"Because that's how YOU always made roasts!"

To which the mother responds,

"Yes, but I only did that because my roasting pan was too small."




Speaking of Tradition, capital T, there has been a lot of buzz about Pope Francis' visit to the US, with people trying to predict what he will do and say to try and get with the 'in' crowd and modernize the 2000 year old behemoth of a Church. As if it needs to be turned   into a place where people can do whatever they feel like and still pretend to be part of the Catholic Church. Because, if not, someone might be offended  or feel excluded, or heaven help us, think about it and change their behavior. Why change yourself  when you can just re-write the Ten Commandments? Oh, that's so much better. Its so refreshing to be unfettered by the  Truth, given by, you know, God HIMSELF, and which the martyrs have been dying for years to protect and hand down to people foundering and struggling to find their way as best they can in this crazy world.

Yes, lets just rearrange the directions on our compass and see where it gets us. Well, spoiler alert, but guess what? IT'S NOT HAPPENING!

Here's the deal. There is Truth. If you accept It and promise to live by It to the best of your abilities, welcome to the Catholic Church! If instead, you would like pick and choose your favorites or throw out your non-favorites and continue to live like it's all optional, welcome to the 30,000 and growing other denominations. If you can't find one that's just right for you, don't fret. You can start your own.

 You cannot change Truth to fit your liking, comfort level, or wedding plans.

Abortion?- Killing is still  a no-no.

Contraception?- See above. Along with the teaching on sexuality, fertility, and people are not to be (ab)used as recreational, or occasionally useful means to whatever end I think will make me happy at this particular moment, but which has, in reality lead to a mutual disrespect for women and men, a devaluing of children, and the disintegration of the family. Happiness? Not so much.  Heartache, misery, abandonment, lack of respect and de-humanization of everyone? Just read the news.



There is a lot of confusion about freedom these days. In most people's minds freedom means freedom from. Freedom from responsibility, restrictions, morals, ethics, standards, and pretty much anything a person doesn't like or want to do. Sounds like a 2-year-old's fantasy playland. But, also like a 2 year old with no boundaries,  there are serious consequences. For society and the individual. And despite all the shiny rhetoric and glossy promises, you will be  a slave to so many masters you can't tell up from down. But you are free, man. To be yourself. In all your self-indulgent, self-destructive, egocentric ways. But someday you can get all upset about immigrants not having a place to go to escape real abuse. Like someone trying to KILL them. So, you know. You care. Obviously. And you can relate. Totally.


Perceived slights remedied with misguided  charity is all the rage these days. With disastrous effects.

If you need help figuring out what/how your testicles/ovaries were created for there is help. 'Gender reassigning', sterilization, putting on new clothes, demanding people call you by a different pronoun depending on your mood and a host of other 'solutions' will not help you understand who you and your place in the universe . Sex/sexuality is huge. So huge in fact, there are rules around it. To protect the person. The persons. And the person who might exist as a result. It cannot be manipulated without disastrous outcomes. That is how BIG it is. And that is why the perversion and misuse of it is so toxic. To all of humanity and to the struggling individual grappling with the understanding and implementing of their God-given sexuality.

Women wanting to be priests will be disappointed too. Again. As they are every time and always will be. Amen. Not sure if or why this might make it into a family-focused event, but disgruntled women seem to keep trying so it might.

Marriage will not be redefined to 'include' anything and everything attempting to mimic the first God-given sacrament.

Homosexual behavior  will not gain equal status with married behavior. Individuals with homosexual inclinations will be reaffirmed as people, deserving of love, respect, dignity, and their place in the world, as they always have been and just as every other person deserves as well. Also, not sure if/why this topic might try to make an appearance but everyone wants to try and steal the spotlight so it might happen.

Divorce will still be not-an-option. Just to clarify annulment is not Catholic divorce, but a declaration that this never was a marriage in the first place. Maybe one party was already married. Or was planning on not keeping their marital promises before they were even said, lied, to the other.


So I am sure there will be lots of disappointed parties to bemoan the fact that 'The Church hasn't changed in 2,000 years!!!'

And it won't in the next 2,000 years either.



In breaking with some tradition, we've decided to structure our school year a little, or a lot, differently this year. I'm hoping it will allow for more time for focused work at home and more energy for me to facilitate the work. It has already reduced a fair amount of stress felt in former years by the old way of doing things. And was actually suggested by my mom several years go. Slow learner, I guess.





I thought this article on melatonin and MS was super similar to this one, written by yours truly.

See, I wasn't making it up. There may have been lots more published in the past few months, but as my Surface is lately being occupied playing The Croods , or Despicable Me 2, I was not able to see the news feed Shane set up for me to peruse the latest templated articles. Not sure how much of a loss that is. But I'm a big fan of both The Croods (seriously a lot of life lessons  in this one) and Despicable Me 2 (what is NOT funny about yellow twinkles with that make sounds just like my 1 year old and have the same sense of humor as my 2 year old) so in the end I think I got a good deal.