Thursday, August 25, 2016

Good News, Bad News

Sorry for the hiatus. But frankly, there has not been much to report. Which is good news. Just lazy summer days with few appointments or obligations requiring  me  to leave the cool confines of my air-conditioned dwelling. I did get some discount plants at the hardware store. Which are great, because most plants probably view my yard as the place where nice plants go to die. So getting ones that are already mostly dead saves us all time, water, and money. I didn't know there was a life support section to the garden shop, but a neighbor clued me in, and one day the bug got me to do something to green up my yard, so I stopped by and found some sprouts in need of some TLC. And a couple bags of potting soil. The babies were very excited to help plant and water. And since, they have been excited to uproot, de-blossom, or just rudely knock over the planters. Every day. Like it was an item on their  chore chart. The ONE they remembered to do.  I kept watering them, the plants not babies,  anyway and one day, I was pleased to finally see the hint of a pink fuchsia blossom. And then,  the next day it was gone. I found it plucked, abandoned, and  withered on the patio. I guess it serves it right, drawing so much attention to itself and all.

But a few weeks later, we went to Chicago, the kids went to Grandma and Grandpa's, and the poor struggling shoots had a chance to grow and blossom. It was only three days but it seemed to be just the respite they needed as I now have blossoms and color bursting forth from both planters!! The fuchsia might need some therapy, as it is still keeping to the shadows. But the other plants give me hope it will come around soon.

And then for the bad news, as if tortured plants were not enough.

Like I said before, we had planned on making our short trip as much like a vacation as possible to a) mitigate any bad news we might be bringing home and b) because it had been about four very full years since we had  taken a vacation sans kids. So we splurged on a room at the Four Season's, complete with massages and room service. And then, curtesy of the staff, cocktails in the lounge.

We only had a few appointments, over two days, so most of the time we just got to relax. Except the MRI. It was scheduled at 4:00. So at three thirty we walked the eight blocks to get there and I got in the line to register. It was at that precise moment we realized we had forgotten the paperwork the doctor wanted filled out by the technician doing the MRI. So Shane hoofed it back to the hotel and I kept encouraging new patients to go in front of me, keeping me at the end of the line for as long as possible. Until I couldn't because there weren't any more. So I had to finally fess up. I think Shane returned just as I started talking, but it didn't really matter. Apparently, the facility had called my cell phone the day before, which had been off for the flight. We arrived late to the hotel so I didn't even notice a call had some in until the next morning. I didn't recognize the number and got weird ringing when I reverse called it.

Well, it had been the MRI facility confirming my appointment. If the call is not answered and confirmed, the computer drops you from the schedule. So I was no where on the day's list and it was already 4:00.

The receptionist was super nice and said maybe they could squeeze us in anyway. So we sat down to wait. And wait. For over two hours. Which in the scheme of the applying for HSCT process,  was a drop in the bucket.

Finally, I got to put on hospital garb and wait in a different waiting room. And met another applicant there to see Dr. Burt. Then into the machine I went. It was the longest MRI I've ever had. I actually got  bored. They had heated blankets, just like at home, but the machine made new and stranger sounds than the one here. So it took longer for me to find my rhythm and just relax. Finally I did, and even started to dream. Then it was time to come out for the shot of gadolinium, and back in for the final scans. We finished at 8:00 and headed back for dinner.

The next morning we headed to the hospital for our appointments with the doctors. Our first one had been scheduled for 9:00, but got moved to 1:00. So we had another leisurely morning. The first morning I had woken to the sound of foot steps in the hall and thought,
'Kids are awake. Must be time to get up.'

Then I realized where we were. Rolled over and waited to wake up until our coffee was delivered. Because, what's the point?

Again it was a very short walk, which was nice when Shane had to sprint back to get MRI forms. I had been kind of worried about walking around the city, as it was supposed to be near 80 the days we were there. But I was very pleased  to find the city was very shaded by the tall buildings and there was usually a nice breeze so my legs didn't get turned to jelly. AND, no hills!!! So walking was not a problem at all. Though we did no do on any crazy long hikes. So to the hospital it was.

It felt pretty unreal to be waiting to meet Dr. Burt. I mean, I had heard about and had been following his research for over a year. It felt like meeting a celebrity. And WE had an appointment with him.
I even took a picture of Shane waiting in the waiting room, but it seems my gadgets are not speaking to each other ONCE AGAIN! so I'll have to wait til another time to post it. But I wanted to document such a momentous occasion.  Without coming across as a creepy stalker. So a waiting room pic seemed a nice compromise.

Finally we got called back. Once in the room we a still had window of emotional space to prepare for what may, or may not be the outcome. Almost like waiting for the judge to deliver his verdict, we sat and joked about how we might react to the news. I wondered if I'd suddenly realize how much I was wanting and counting on getting accepted. And I'd break down in  uncontrollable sobs. Which would work for good, or bad news. I'm not really a crier, except funerals or watching my little girls ballet recitals. But I really didn't know what I may have not been allowing myself to admit or what my response might be. And 25 years worth of pent up emotions could be a lot. If they were there.

The nurse took the usual vitals. Then we waited for the knock on the door. Which came, and Dr.  burt entered without any fanfare. It felt strangely like a casual acquaintance coming to visit.

Dr. Burt was very warm and down to business. Which I appreciate. We were told to bring the copies of the MRI from the previous day, but apparently it didn't matter because he had already looked at them.

"So. I looked at your MRI" he said, after introductions.

"And, frankly, you have a lot going on. Four enhancing areas just from the last few months."

(Only new, like up to 12 weeks, damage shows up as enhanced with the gadolinium.)

"There is quite a bit of atrophy, which we know cannot be reversed with any therapy. So there's also that."

At this point, Shane was expecting him to say, HSCT would be too much for my brain right now. But he didn't. Instead he said,

"You need HSCT."

I think it still might not have sunk in. I didn't cry. I agreed I needed it. He said he would do it. We were IN.

After reading so many people's rejection posts on the forum, I felt like we had just gotten admitted to a super exclusive club. Dr. Burt is very selective in who he thinks could benefit from the procedure. And I was one of them! He does treat patients off-study on a compassionate basis, but one hall mark they look for is inflammation ( enhanced lesions). Meaning, there is still bad activity in the brain, which is damage happening, and though usually not desirable on MRIs, the BAD NEWS, actually resulted in GOOD NEWS!

The rest of the visit with him was mostly informational. We met the nurse who will be our contact person and will investigate the insurance benefits for us. And if insurance balks, Dr. Burt will do  a peer to peer review with them. And hopefully that will end it.

Then we left for lunch. We didn't have a ton of time, but we found a cute place for tapas, which was also really tasty. So tasty, that we decided to go back for dinner so we could try more.

Then back for a meeting with the neurologist, Dr. Balabanov. Who we also both really liked. He had two trainees as well, so we got to enjoy all the probing questions he would ask them, in addition to his questions for me. I really liked his approach, and mild accent. And the informal back and forth that gave you the feeling that it was all in fun, but you knew he was watching carefully to find the evidence he was looking for. But it wasn't like he was looking to see if I were guilty of something, so I didn't feel unnerved.

The tests went fine. Even the walk up and down the hallway. Seven times test. But he found enough  things he was looking for -the MRI is only half the story- and concurred with Dr. Burt's conclusion.
Then he called me stubborn. For not being on any drugs.Which I didn't mind. And asked how I ' Came to dees weesdom'  of having babies and breastfeeding for natural therapy. And why, since I was stubborn and wouldn't take the stronger drugs was I now willing to take  20ml of cyclophosphamide, just as an appetizer.

I told him because it had the best ROI, and is my last, best hope. So "Carpe IVum!"

He was satisfied. (More good news.)

However (dun dun dun, bad news is coming..get ready for it...ok not really that bad)
He wants me to take steroids while we sort out a date for starting treatment to prevent further irreparable damage and avoid a crash. Or, if I wanted less side effects, I could take Acthar, the god of expensive drugs. I had read about it on Marc's blog so was prepared when my neurologist said we'd have to go through some hoops with the insurance company. Apparently $78,000 worth of hoops. Just another demonstration of HSCT being very cost effective for the insurance companies. My neurologist did agree the side effects are far preferable and she would recommend to patients if it were not so expensive.

Then I started reading up on dosing and  injecting and all that. It is given intramuscularly, though it looks like there might be a subcutaneous version, but not sure which formulation I get.  The latter would be no big deal, but the IM practice video made it look a little involved. 'Stab the area planned for injection. Draw back he plunger to check for blood. If blood enters the syringe DO NOT INJECT. Remove the needle and pick a new spot and repeat. Until you are sure you are not injecting into a vein. Repeat morning and evening for 2 weeks.'

   With the IV steroids I could just go and get it done, no insurance hoops. But I would have to go there every day. For three days, or whatever the Dr says. So, it does involve leaving my house. I told the Dr if we don't get insurance approval by Friday, tomorrow, I'll go the IV route. I have lots of house projects if I need outlets for the increased energies.

So we wait for insurance to issue it's decrees on both petitions. Hooray, more waiting. But hopefully for the last times. Once we are done with this, other than the follow up care here and the annual checkups in Chicago, my medical outings should be greatly decreased.

Sunday, May 22, 2016

But Wait, There's More

As if potty training and housekeeping, and potty training were not enough, we are at the busiest time of our school year. As in we had a piano recital. And the girls have a play. Which means my mother-in-law has been driving them to practice, through horrible traffic, every day this week. I french braided Audrey's hair and showed off my bad make-up applying skills. Eye-liner what? I can't wait to see all the hard work come together this week-end, and next. I'd tell you to come see it, but I think all the shows are sold out. It's going to be that good. The little kids are  enjoying all the practicing too. And many times a day we have interactions like this:

Me: Fiona, hold still so I can get your new panties on.

Malachi: I see Fifi's butt.

Me: Yes, now watch out for that puddle!

Malachi: (laughs) but I can see her butt!

Me: Its not a big deal. You guys take baths together.

Malachi: (walks off) starts singing, There is a castle on  a cloud.......

Fiona will climb to the top of the swing set and like a  town crier,  lets the  neighborhood know:

A     more   day!      A     more    day!

I'm sure they are all on pins and needles to know what happen will happen tomorrow. But every day, there is  still one day more. As announced by Fiona.

Events have been so stacked, Kateri had to choose between her piano recital, and play practice. She chose the play. Cyprian had no other competing engagements. Plus there was a cookie reward at the end. Which is the main reason the kids go to these things. So we kept his name on the performance list.

I gave the babies their baths early recital night, as curtain time was 7:00. And because they had popsicle in their hair. Otherwise I'd have skipped it.

Malachi was super stoked. 'Homeschooler piano recital! I've got just the outfit!'


As I had to wrestle Fi into her clothes, I was happy to have Malachi dress himself. I had gotten him new shoes as well as Fi, so he  now can get himself completely ready when we need to go anywhere. Which is great. Though some times he could use a little supervision. He insisted on wearing socks with his crocs. Fine by me. Hey, the orange actually matches his shirt! Good job. But then, apparently, for no reason I could guess, he decided to ditch the pair and move on to a new color for the other foot. Still fine by me. It actually ended up matching his red coat. I guess he was thinking ahead. 

He only stuck out a little amongst the other suit clad children. We sat in the back and he actually did really well, only falling off his chair five times. Fiona was a little more bored, so Shane took her out to walk our old schooling grounds. Where she  found a puddle and successfully rendered her shoes useless for the evening and came back barefoot. Also fine by me. I got to sit back and enjoy the recital, with Fi being entertained by left over rain and Malachi trying to see if he could cheat gravity one more time (he couldn't).But it didn't hurt so I let him continue his science experiment. I encourage my kids to find every opportunity for learning, and sometimes inspiration strikes at your brother's piano recital. Very fine by me.

Somewhere between Bach, Beethoven, and Burgmuller, Malachi released an important service announcement. He had to pee. Normally he just does his business and we carry on. I panicked when I checked and found he had decided big boy undies would really complete his look. I was so glad he had alerted me to this fact, and had given warning with enough time to slip out to the restroom. He acted like it was no big deal, humming 'there is  a lady all in white...'

Cyprian played well, and I was  able to video his performance unmolested, as Malachi was testing the gravitational pull in a new field, several chairs down from me and not anywhere near my elbows. So win-win. (one for gravity, one for me, Malachi 0). And then it was cookie time so Malachi felt like a winner too.

Fast forward one week. The play is out and going strong. I got to see it last week-end. Shane gets to go this week-end. I only cried three times. Cyril was dry-eyed the whole show. It's such a good story and all the kids did fantastic jobs. Plus, two of them were MY children. It was a very emotional evening. And that was before I got lost and took 50 wrong turns on the way home. Probably didn't help I hadn't eaten lately. But that wouldn't make a road that was there last time I remembered to disappear. After lots of u-turns and scandalizing/scaring the soon to be new drivers, and showing them how not to do it, I decided to cut my losses and take the long way home. Which worked.

Shane showed me an audio direction thing on my phone. But that will involve being able to HEAR the directions.  So that might not be a help to me. At least I didn't have screaming babies to complicate things. We picked up a snack on the way home. The babies were already sleeping so we were able to crawl right into bed. After my bed time snack.

        Put on weight with this one weird trick! A glass of half and half with a Snickers just before  bed.

Which I am happy to report, is working. Shane and I went to a wine dinner last week and I was kind of excited to pick out something to wear that was Not maternity, and didn't have to be nursing friendly. My first thought was, 'do I even have any of those?'  And are they totally out of style? I actually didn't care about that second part at all. It was more like, have they been eaten by moths?

It turns out, I do not own a single pair of jeans I can wear anymore. (Hurrah?!) Ok. So we still have a lot of stretchy cotton fibers. Check.  But not the yoga pants I wear  every day. Plus, I think the nicer pair had chocolate melted onto it. Ok. A  stretchy skirt. So what if I wore it when I was pregnant? It is  actually NOT maternity. But then I ran into the ever present problem of shoes. No slippers. Fine. Flipflops were casual-summer-fun, but not the safest for my  already numb feet+evening+wine+cold. It was a very warm day but if the event was air-conditioned, or the evening got too cold my feet would turn to blocks of ice and I'd beg Shane to carry me home and that would be a bummer.

Ah ha! Boots. And a long skirt. And a sweater to add if it got cold and I got chilly, which it did, and I did. So it turned out very well. And some day I might actually get a real outfit that fits my current state. I was super surprised and pleased when the boots actually fit my calves and didn't make them look like tooth picks playing in  my grandpa's boots. So as restricted as my wardrobe options had become, I was happy to know I've been on the right path. Eventually I'll add some muscle building too, but my personal trainer said not until I get more reserves added. (Needless to say, Shane is my personal trainer and keeps me supplied with all my nutritionally dense meals as well.)

I'm sure you are all wondering if we've heard from Italy. So far, Florence is still being coy and playing hard to get. But that's ok. We are comfortable being forward, though there is a fine balance between forward and Creepy American Stalker. But I think so far we are keeping it uncreepy but still alive and very interested. So hopefully that is all good.

And then today, I got a call from Chicago. Chicago? Who's Chicago? We applied there months ago, then they stopped talking to us. It felt like we were on the 'do not contact list'. I can take a hint, so we Then Shane looked some more and decided we could stay a nicer hotel, a little ways away. So we cancelled the first one and booked the new one. Now, even if they don't accept me, it will feel like a little vacation in the nicer hotel.

It was kind of a whirlwind of emotions. We didn't hear from them for a month and had almost written them off. Then all of a sudden they are flooding  my inbox and CALLING me!  We've been revisiting all our correspondences with them ad going over the protocols and I started hounding the Chicago HSCT forums for more intel about what it all means and how soon it might mean anything etc. Some people were accepted at their evaluation. Some people were put into the control group, meaning they are on a second tier drug and if they get worse they will then cross over to the treatment group and get the procedure. If  they did offer drugs, I'd have to decline, as all the  second tier drugs have some unpleasant long-lasting side effects. And because I'd hopefully be heading off to Florence soon.

I know/feel it's kind of crazy to be courting so many clinics. At the same time. But the way things move you have no idea who will be able to move the fastest at any given point, or at what point they may stop considering you at all,  so you apply and keep the doors open until you get on the plane. 

                                                            And then THIS happened!

I don't have Shane's pictures of their brunch at the Space Needle and the Star Trek event they happened upon earlier that day. But it seems it was a great day ending with a great meal, and cake, at Grandma and Grandpa's house. Then this week, we will finish up some last lessons and parties,  and summer vacation will officially start!

We are so excited!!!!

Tuesday, May 3, 2016


I figured whatever I came up with for a title would make about as much sense as that. (If you are from Reykjavik I meant no offense). But I would like to point out I spelled Reykjavik correctly the first time I typed it. I think that was due to all the Scotland Yard games we played when I was young. 

So many things going on, its hard to keep them all straight. Not that I needed an excuse. It has been very warm today. I mean, so hot the kids didn't want to be outside. Yet when they did, they felt completely comfortable to strip their clothes and pick up sticks as they pranced around the spent embers left over from a cook-out in the fire-pit. And when they tired of that, they took off  their diapers. I was alerted to the Lord of the Flies re-creation when Fiona came running to the back door wearing only one shoe. One new shoe. Which I had just bought that day. So even though I would like to have stayed in the cool house, I was inspired by the thought of keeping the shoes together for at least a whole day and followed her out. It was on the way she told me what was going down.

And I mean down. There was Malachi, completely naked. His diaper was lying  in the pile of dirt which is the kids inspiration for all kinds of fancy soups. And in an instant can also be used as war paint. And at that moment was the dumping ground for what used to be in Malachi's diaper. And was now on Fiona's shoe.

Her new shoe.

After cursing the poo gods, I cleaned up the yard, scrubbed her shoe (plus Malachi's for good measure) and went back to doing laundry. Fiona followed me up and I could hear her playing and talking about squirrels, her favorite, and then I hear the papery Velcro sound of a diaper being removed! I ran to catch her just in time. Sort of. If by just in time I mean before she painted the carpet and walls with her excrement, then it was in time. I swooped her up and plopped her onto the toilet to see what sewage we could salvage. And if by salvage I mean smear what was on her all over the toilet and seat, then we were definitely salvaged. Oh so much salvaging these days.

It was at that point I realized I had no diaper wipes to clean her so I carried her to the other room to find some. Finally got her cleaned up and went back to doing laundry. When I put away the towels I discovered I hadn't quite finished  salvaging, so I grabbed the Lysol wipes and went to town.   I finally finished putting the bed together along with whatever unfinished tasks I happened upon. Leaving plenty for the next day as well. Potty-training two kids is really quite an effort. And I don't actually do much. Just give reminders and clean up messes. I don't know what I am going to do once we've finished. Oh, I know! I'll finally finish the rest of the unfinished tasks I didn't get to. Haha!

We  still lave not gotten our Skype with Florence re-scheduled. Every day goes by and I can imagine all the other prospective patients chatting with the Dr. packing their bags, losing their hair, and going home. I know everyone is busy, but it really is ridiculous how slow the communication is. We applied to another clinic and sent all the required paper work plus more. By this time Shane has put together a comprehensive introduction packet  with CDs so there is no latency on our end. A couple weeks later, they asked for more. We sent them more. Two weeks later they said they might have us fly in for an evaluation. Shane said whatever, whenever. We are available. A week goes by. Shane reaches out. Three weeks go by. A month. Nothing.

So we are left with lots of time to think, re-think, search, and re-search for any bit of information I have not yet learned in all my researching. Of which there is much. Researching and what I have not learned. Sadly, in some exploring, I have come across something that makes my blood boil. Many people have benefitted from HSCT and their MS has been stopped. What has not been stopped is the fallout from all the steroids prescribed for them over the years. Many times I was offered steroids for various 'presents' courtesy MS. I asked if it would help long term. No. It will just help you walk sooner, see sooner, swallow better, or return to whatever is your nee normal sooner. But it has no long term benefit on actual disease course. I totally get why people do it. If you've got a job, and  a family to take care of, a few days can be the difference between being able to do that, and not . So, why not.

 I considered it when I had walking issues when Fi was a baby but I decided I'd rather not disrupt her nursing and lose sleep over her being sad. So in the end I went with more sleep and declined. What no one ever told me ever in all the 24 years of relapses, is that an irreversible consequence of long term  high dose steroids is AVN , avascular necrosis (not to be confused with bird ailments though birds do  have hollow bones, so maybe there is something there.) Avascular necrosis is a condition where the blood supply to the bones becomes clogged and the bones starve to death. And crumble. If you have read Marc's blog, you can see how painful and debilitating this is for him, because MS wasn't enough. So far the only treatment is a joint replacement, if you are not too bad off to handle it.
Just to note, three alcoholic drinks a day for several years can also contribute to developing AVN. Again, thanks to pregnancy and lactation, I've also been spared this opportunity. Though it is said to be a 'rare' side effect, it seems its not too uncommon in the MS population.

 I'm thankful I have never partaken of it, though it was not do to the warning labels I was never even given, or the due diligence of doctors informing me of the risks. From what I can tell, not many people were aware of the risks, and now that their bones are disintegrating and they can't walk again, this time not due to MS, say they would never had chosen it had they known.

Then Shane brought a recent trial to my attention involving the brightly colored unicorn poop MS treatment, Gilenya (Fingolimod). Apparently, when patients came off the pills, they soon after suffered huge relapses, which steroids could not even stop. It opens one up to opportunistic infections, including PML, a deadly brain infection. So if you start it and want to get off the zombie train, you are in for a really rough ride.

And yet when patients bring up HSCT to their doctors, they are warned. Chemo! That's risky and overkill. And oh wait. It works! Where all the pills and shots can do is cut down on relapses, none can completely stop progression. Which HSCT does for 80-90% of patients.

So my next project is to research all the drugs used in HSCT and their long term consequences. Most clinics do use steroids in certain  phases. Though Singapore does not do this. I don't know what the benefit of doing/not doing it is, or if there are alternatives. I believe it is given with  the  chemo to help minimizes reactions and not in large enough doses as to put one at risk.   So maybe its ok. But I want to understand it all, so that will be my project for the next while as I wait to hear from Florence.

That and the myriad of random tasks I'll be handed by regular family life. Fiona got hold of and ink pen and decorated a couch cushion. When I whisked the cover off to give it an acetone bath, Fiona crabbed the unprotected cushion and ripped the cover, sending feathers floating about the room. (Again with the birds!) So then I had to hunt down a needle to fix it. I haven't done much sewing of late, its  best for everyone that way. I finally found one needle that had rust spots all over it. Yeah!  Feathers AND Tetanus. Then the thread kept breaking, though it was advertised as silky and strong. Whatever. I gave up and threw the cushion on the big pile of other unfinished projects. I'll probably take another stab at it tomorrow. Get it? Stab?

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 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 cafĂ©?"  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.