Thursday, September 22, 2016

Help! I've fallen And I Can't Get Up!!

(Oh the commercials we used to make  fun of. Karma.)

The week-end flew by too quickly. As always. Today we started our 'school year.'  The kids are thrilled, mostly. I have one, so far, child who loves everything to be organized, is not at all opposed to doing the organizing, and who said this morning,

"I'm really excited to get on an early schedule so we can do more things every day."

I don't know where she gets it from. Or maybe I do. And it isn't me.

The other kids decided to start a debate team, with the first topic to be the harmful effects of getting up early. Which was not really a debate, as they all agreed with each other. It was a short class, but one I think they will re-hash. Every morning.

I do know where they get that from.

Also, early meant 9:00 this morning. We are easing into our new routine. And we had had some late nights this weekend with some cousin visits, so it just seemed cruel to get up earlier. Even at nine there was moaning and gnashing of teeth. But once I had my coffee, I got better. Things started to look up. I was even inspired to hang up the world map I've had for years. OK, before we moved into this house this house 10 years ago,but couldn't decide where it would be most useful and the least likely to get attacked. Too high, we can't read it. Too low, its subject to little ones dividing and plundering the lands with crayons. As much as I'd love to turn the house into a Montessori classroom, it's difficult when the puzzle maps are next to the legos and the pink tower looks dangerously similar to a baby's stacking cups. So the map had been hiding. Safe from the marauding barbarians.

Cyprian was reading about the Suez Canal and some fighting in South America between Chile and Bolivia and water rights or something. So I finally picked a spot and he helped me tack the world map up. Then he looked the map over and said,

"Oh, wow. That would save them a ton of time not having to go around the continent."  And,
"I can see why Bolivia wanted to get access. Chile has a ton of waterfront."

Which is exactly what I was hoping he would say. It didn't have to be that exactly, but I was hoping to see the "Oh, I get it now!" look on his face. I love maps. And history. Malachi, of course, noticed the new wall decoration and wanted to know where we live, where his cousins live, and then went on to show off his new found knowledge to the bigger kids, who, not being there when I showed Malachi, were very impressed. And so far no one has taken writing instrument to it. But its early in the year.

So I'm quite pleased with our first day, and look forward to more. I'm also, maybe a little inordinately, pleased when an email comes in from the co-op we are sitting out this year, asking for subs or textbooks. And appreciating the time and energy we will not be spending on those classes. The last couple years my mother-in-law helped with the driving and sitting in on lessons, and this past year she did all of it. But I still had to write a few checks, and make sure the kids were dressed for public consumption. All of them. So it is a load off to be sitting this year out.

It is also a load off  to not be rubbing elbows, shoulders, or anything, with herds of other kids as we enter the cold-flu season. I've been preparing the kids for some stricter hygiene routines post-HSCT.

'This is water. This is soap. This is a clean towel....'

I'm getting really serious this year.

Malachi and Fi kind of get it. They went out and hooked up the sprinkler directly to the outside hose bib. Cool. But not sure its good for anything but necessitating a new outfit. Which I guess can come in under: We don't bring dirt into the house. Change your clothes when you do come in etc. Or 'Look, Mom! We recreated the Bellagio!'

But now the sprinkler days are ending and we will enter our 'complete shut-ins for the rest of the season' phase. We had scheduled a last hurrah for tomorrow evening, but ended up canceling. I emailed my doctor and the Chicago Drs as my walking has become increasingly difficult. Which seemed weird to me as I just did the steroids three weeks ago and I thought the effects were supposed to be longer lasting. Apparently, there can also be a withdrawal effect as well, which is what may/or may not be happening. I was offered a shorter course of steroids. I said no thanks. As much as my laundry and bathrooms could benefit from a little energy burst, I can do without the wakefulness and paranoia. Though it is still yet to be proven as just that. Plus I might 'feel' like I could do things I can't/shouldn't.  

Shane ixned me from carrying children up or down the stairs. And I am working really hard on just doing what he asks because I know I'll need it in the coming months. So I promised. Fortunately we have lots of non-wonky legs to transport sleeping babies to their beds, so I think we'll make it. And sliding down the stairs can be fun too.

I was a little worried at first to ask the Chicago Drs for advice on what/if anything I should do. What if they thought, 'Nah! she's too far gone. Take her off the list.'  Then I'd have to crawl back to Moscow and ask them to take me on again. I'm pretty much over Florence. It seems everyone who goes the myeloblative ends up with lots of recovery issues. And that just really doesn't sound good to me. (Funny thing. When I sent my break up letter to Florence, the coordinator told me they are sending a nurse out to study under Dr. Burt at the same time I will be in Chicago. So I will have to look her up.)

But Chicago didn't cancel me. And we are still going. And not a minute too soon, it feels. Maybe a day later than I'd prefer. But I'll take what I can get.

Oh. I fell over. DOING LAUNDRY! Of all the risky household tasks there are. I couldn't believe it either. I was squatting down pulling clothes from the dryer, and my not so balanced balance really wanted me to keep leaning to the left and my body said, "that sounds like a reasonable idea. Lets do it!'
And suddenly I was trying to grab the sides of the very slippery dryer while, in slow-motion, my body kept its course and soon came to rest on the floor. Which was not really so bad. Except my left big toe didn't get the memo we were emergency re-positioning, and decided to try and 'help' by staking a claim and sliding  and wedging itself. UNDER THE DRYER. Which really hurt. But I couldn't just pull it straight out. It needed to be turned a little sideways, the toe, not the dryer, which I could not do while still on the floor, so I had to bear hug and crawl up the front of the drier til I got to the top and carefully backed out my big toe.

I just lay there on top of the dryer. In utter disbelief. And somewhat in amusement. But disappointment there was no one there to witness and be able to re-tell the story of 'Mom versus  the Dryer'.   And definitely some in pain. I thought if I just stayed away from any toys with wheels I'd be safe. But no. I'm going to have to rethink my cleaning routine. 

Shane and the big kids started a going to a Wing Chun class. Side note: Bruce Lee studied under Ip Man. Bruce Lee also went to the University of Washington and is buried in a cemetery in Lake City, not far from my house. Just some random trivia. They were showing me some of the moves tonight and the right stance and placement of feet for steadier balance etc. I thought, Maybe I should take some classes. Maybe it could help. Shane said no. Not now. Maybe later. I'm good with that.

Friday, September 9, 2016

Happy Holidays!

 A little early, you might be thinking, but I thought I'd get a jump on the holidays this year. Even years when I have started preparing early, it seems like it was never early enough and now I have a mound of baking, presents to wrap, and the kids will be banging on the door in two hours. And I have completely forgotten the option of just blaming  it all on Gilder. So mid-September seems a fine time to start. The leaves are changing. Most of as have unpacked our shoes. A few preppers have located their socks. Some of us have actually worn them. I even picked up a new jacket yesterday! Because winter is coming. And because it feels like a cozy bathrobe, but I can totally go out and get a coffee in it. Not that wearing an actual bathrobe on a coffee run is not acceptable. Plus, if you have a red one (bathrobe), you just look like you are getting into the holiday spirit. Or trying to look like the double tall latte you just ordered. (Oh my gosh! That's so cute. They are putting people dressed up as coffee in the stores. Now I want one.)  A person? A Latte? I won't tell you what to think. They can't deny coffee to a festive person like that. Please do make sure your bathrobe is an appropriate length before venturing forth. Let people have  the option of ordering  their  own sticky buns with their coffee.

I have a serious allergy to anything below 60 degrees. And I'm short. So I can wear my kids' bathrobe on a coffee run and still feel appropriately attired for a meeting with the pope. (Red totally works at the Vatican too!) On days closer to 40, I am ready to grab and go with my "sleeping bag with sleeves" as my brother-in-law calls it. I don't care what anyone calls it, or how it looks. It's long. It's red. And it's my security blanket 9 months of the year. The other three months are just too cold to open the front door. I seriously wore it just this last Fourth of July. Everyone just thought I was being really patriotic. How dedicated is that to wear a big red down blanket in the middle of summer. (She must really love our country!) Red really is a year-round color. I highly recommend it.

I also highly recommend Tom and Jerry cartoons. (What!? Where did that come from?) I discovered a way to parent, drink coffee, and write all at the same time. In the form of Tom and Jerry. I forgot how enjoyable they are. No snotty attitudes. No violence. No product placements. Just good music and good laughs. Seriously good music. So I have pleasant  background noise to boot. So if some of  these sentences come out in 3/4 timing (The waltz form Coppelia) you are not making it up. Hungarian Rhapsody. 1812 Overture.  From Beethoven to Berlioz, the kids can have an international music lesson, all the while entertained by the antics of a clever mouse pulling a fast one on poor Tom. As kids we always thought Jerry was kind of a sticky bun. But we also learned to appreciate and enjoy quality music. So I consider them educational. Add to that the impressiveness of the cartoons not being computer generated and you've got an entire art appreciation lesson done. Before noon. And you are still in your bathrobe. If you are feeling even more ambitious, you can also expose them to modern art. It's not my favorite, but a little Call of Duty now and then will keep them well rounded.

And it will give me time to order flowers, which takes an exorbitant amount of time to do. So many places. So many bouquets. So many add-ons and up-grades. And passwords? I'm ordering flowers. Not launching a nuclear  weapon. Please don't make this harder than it already is. And why are they calling the bouquets names like "Serenity" and "Peace" . Add to that a card that says "thinking of you" and what is the recipient to think you are thinking of them.

"I broke a leg. And now they are sending me "Fond Remembrances?!"

So you finally eenie meenie minie moe in on one. And then they suggest you make it a Deluxe. Or you thought even more fondly of them and go for an Extravagant. Which I think just means they don't use last years flowers.

Oh, you want fresh ones.?

Ok. That'll be another $14.

And you want them delivered to the door. $12.

In a real vase? Seriously? Fine. Add $10.

This week? Not next month? Express delivery, that's double.

You really don't seem like the kind of person who'd pay for same day, so we won't even mention that option.

And then .........The person you were remembering so fondly they might just get a restraining order put on you, posts a picture of your sweet memories on Facebook.

And you feel like an ass-hat.

But you refrain from calling the delivery company and accusing them of sending what looks like an arrangement  created when a drunk driver sideswiped a farmers market and pulled the greenery out of his grill plate and stuck it in an oil can. Which would actually  get you a larger arrangement and could probably become quite popular . Instead you take out your magnifying glass and confirm that that is indeed the happy little day bouquet you picked out. In the rustic cardboard vase. And hope everyone forgets about it by Christmas.

I got my HSCT dental clearance this week. Comes complete with a badge and sunglasses. Or it sounds like it should. Now all I have left is a battery of tests next month  for pulmonary and heart function etc.

In addition to fresh minty smile, I also got to promote Dr.Burt's work. The hygienist has a friend with MS. And knows someone else with Lupus. I was very happy to share the love and hope, and write down information for her to pass on. Tis the season. Don't be a Grinch. Pass it on.

Speaking of seasons, I think its time to move on from the cartoons. Grandpa is bringing a few cousins over to spend the day. Which makes us all feel like its Thanksgiving. And will most likely inspire some modern art classes.

Thursday, September 8, 2016

What is Your Name? Who Do You Work For?

It was great fun last week, going with Shane every morning to get the infusions, and then sometimes (most of the time) okay (every time, except one. No, we went that time too.) Out to lunch afterwards.

Luckily we had the Monday holiday to keep things fun, but he ended up working most of it. And when he wasn't working he was cooking. So I felt very spoiled. But now it's over. And back to real life. Sort of.

I was really curious to see how the steroids would treat me, as I had never done them in all the 25 years I had the option to. Shane said he just noticed I talked more. By day three I pretty much became immune to the effects, not as chatty, and he kept asking if I was ok? I was actually more than ok. I didn't feel an overabundance of energy, though the laundry pile was slightly smaller at the end of the week.  I did notice I just didn't get as tired doing normal things. Stairs didn't slow me down hugely. I could shop, make dinner, and do some chores.

I felt normal. Like 25 years ago normal. It. Was. Awesome!

Fortunately, we made all our travel plans while I was on the juice and I felt I could have useful input and offer insightful consideration. Don't remember what they were, but I'm sure they were there. Realistically, I just and watched him make all the arrangements.

Then day 4. And 5 came. Day 6 my feet started to feel funny, like I'd been standing barefoot in the snow funny. My step was less springy. My legs heavier and cumbersome. I just wanted to nap. Which I did. But things kept returning to"normal". Having taken a brief trip to feeling good land, the return to lame land felt really hard. I wondered if it was always this bad or I had it gotten even worse? I think its the former

I'm hoping it was a glimpse of what is to come after I've recovered from everything, so maybe a year or two down the road. Not that I'm thinking of taking  to rollerskating, ever again, but shoe shopping with real feet sounds interesting. I like how one patient described his new found feeling in his legs as "Positional Awareness".  He didn't have to check to see if his feet were on the floor before he stood up. It was real time feed back. No latency. I'm aware no one can predict the results, and currently results are really just focused on not getting worse. But lots of people have wiggled their previously frozen toes or gone on hikes. Or realized at the end of the day they had had gone up and down staircases moving boxes and hadn't thought twice about railings or the number of steps. They had just been living. Without micromanaging their every movement and energy stores. Typically, patients keep a diary of their procedures, the good, the bald, the pukey.  But over time updates  become less frequent until someone chases them down and asks what's up? And the response is, "Oh, I've just been busy doing things again."

Day 7 the paranoia made an a appearance. Or so Shane says. But he doesn't know what I know. Some insurance lady calls and says she wants to verify my information. Umm. How about you verify YOUR information. She says fair enough and gives me her name and encourages me to call the main number to verify employment. As if it's  her real name. So I ask for her social. No, I didn't really. But I didn't give her anything. So it's all good. And the transplant is approved for up to a year. If she's telling the truth.

So all in all, it's been an interesting week. I didn't gain much weight. Which is fine. Shane did most of the driving, just case I got a case of the Mario Andretti's.The one day I did drive was fine. So hopefully all the real effects were good ones, in my head, and we have our trips all booked. And I have one  billion and twenty philosophical thoughts on this whole process and my kids are reading Aristotle, so how does living/not living/ society/insurance/love of God/love of  neighbor/civic duty/Christmas/half and half/happiness fit together? Dizzy yet? Don't worry, it's just the prednisone wearing off.

Like I said. I have tons of thoughts. But maybe we should wait til everything is a little calmer. And I get some sleep. Fiona has been having her own restless times. Many of which consisted of but were not limited to NOT sleeping for half of last night. She kept whimpering,

"Mama?! Hold You." or "Mama?! Hold Me!"

Which, respectively translates to "Mama, I need to lie on your head!" and "Mama, I need to put my chin in your eye socket".
 And both of which only afford a minute of non-whimpering.

 I think she might be going through some  neurological growth, which I am seriously in favor of, and will gladly support despite the nocturnal near suffocating events. Even amidst the rough spots, I can't help but feel extremely joyful, tired but joyful, when I am  nestled between Shane and Fiona every night. And I am resolved to absorb and enjoy it all I can. It is so easy to take things for granted until they are not there. Right now I want to soak up and savor every minute I can.

In the mean time, Shane will keep me on the sane and narrow path. If this post disappears, it could be because  he read it and strongly suggested it is too whacky and the nice thing to do is to let it go. I trust him, so I'd do it. He asked if I felt any apprehension about the whole process. I said no. The  kids will  be happy and probably enjoying better living standards,  under his parents care.   If  I flip out, lose it, have doubts, get scared, all I have to do is ask Shane what I should do, and I'll cooperate.  Shane thinks, given my under-reactions to procedures in the past, I might not even notice all the needles and poisons and will sail through it all without incident. Or maybe he's just trying to psych me up for it. Which is a good strategy too. (He's so smart. Full package, I tell you.)

He has it arranged with work to work remotely for the non crazy times while he does my shots and I lie around complaining there is nothing new on Netflix, and then be available full time for the crazy times. While I complain I've already watched everything new on Netflix, and I'd really prefer some tapas to the hospital meal, and then do skype calls with the kids to keep their lessons going. So pray for him, especially. I just have to lie there and follow orders. While he takes care of everything else. Which he is extremely good at. And for which I am extremely grateful. Fortunately, we've had lots of practice. I don't think I would do well being on the other end of labor. Shane, on the other hand, excels at it. I'd be like,

"Soooo, its getting kind of late and I'm pretty tired. do you think we could just pick this up in the morning. After some sleep? And a latte?"

But Shane will rub my back for hours. Ask if there is anything he can get me. And afterwards make me freshly grilled steak and eggs every morning for weeks, despite working and walking a fussy baby til the wee hours.

So I think we are pretty well prepared for our respective rolls. But first I have to go and get my dental clearance for transplant. At least, the lady 'said' she is a dentist.

Wednesday, August 31, 2016


My sisters and I had a get together this week. It seemed time for a last hurrah! before the other girls get serious with school stuff and life stuff and the cousins are always begging for play dates. The kids were super excited and played for hours while we discussed gardening, prayer, life, kids and all the good stuff that is so fun to share with people you've known and loved since birth.

Then, not to end the party too soon I brought some home to stay the night and help me eat all the melting popsicles in my not so freezing freezer. They had already eaten all the not-quite-frozen pizzas so I pulled out the Costco box of popsicles, set them on the patio table, and told them to have at it. I heard one cousin exclaim,

"This is the best day ever!" 

It felt that way to me too. I'm kind of sorry to see the end of summer. The leaves have been quietly dropping here and there and the mornings and evenings have that distinctive bite, despite the 70 some degree  afternoons sandwiched between them.  In one of my inspired gardening fits, I bought two blueberry plants. Luckily not for the fruit, because once Fiona noticed there were fleshy orbs that resembled green blueberries and she went to town. But I had bought plants for their fall foliage, described as burning crimson and gold in the fall, so I was not too heartbroken over the stolen fruit.

Then, on another yard inspired day, I decided to treat the weeds in the weed field. It might have been easier to just pluck the few blades of grass and pretend I had always wanted a buttercup and clover farm. But those come with bees, so I got some week killer and while Shane and the kids were at a retirement party- I stayed home with Pippin who was not over his cold-and decided it would be good to get it done while they were away and off the grass.

It was one of those bottles you hook up to the hose and the water dilutes the poison  as it sprays out in a steady stream. No pumping required. It was going pretty well and as there was no wind I was able to carefully avoid the greenery I did want-blueberries, raspberries, and strawberries. And then it happened. The hose was not giving me enough slack to reach the whole yard so I gave it a good tug. Still not enough. So I pulled harder. The hose had snaked itself around my garden boots in all my twisting and turning to reach every last patch of unwelcome greenery. Suddenly, I found myself, flat on my back, the weed spray gushing straight up like a Bellagio show, but not before taking a nice sideswipe of the yard, whose path included the raspberries. strawberries, and one blueberry.

I emptied the bottle on the rest of the yard, then got to the business of removing all the newly poisoned plants. I had Pippin come down and weed-eat the raspberries while I hauled them to the garbage heap. Then pulled up the one blueberry and all the strawberries. I wanted to get the yard remodel done before Shane got back and then I could show him my new plans for the yard, maybe without bringing up the whole hose bit. We didn't get it quite finished. I was more sad than he cared. Then I somehow lost interest in that side of the yard and neglected to water the remaining blueberry, so we are getting an early glimpse of the 'fall glory colors', or 'no one care about me anymore colors'.  But it will be better next year, and the raspberry canes are spreading already, so all is not lost. The strawberries were due to retire this year anyway, so all in all, we only lost the one blueberry.

This week we started the IV steroids. So far nothing too crazy has resulted. But it is really awesome to feel energetic again. I never knew. Shane came with me the first couple days so we got to spend some time each morning while the drugs dripped for a an hour. They said it could increase my appetite, and sure enough, the first day I was starving. After only 10 minutes on it. Then I remembered I hadn't eaten much for breakfast. Shane took me out to lunch after wards, and the metallic taste the medicine had given me only made my water taste like grapefruit juice but everything else was fine.

I did feel a little sleepless that night, then finally took a Benadryl at 1 am. Then woke up at 6. Getting through the day was not a problem and I got more done, in the laundry department, than I had in a while. Which was good , because Malachi, enthusiastic to try no pull-ups at night, peed the bed. Twice. More accurately, he peed TWO beds. His, first. Then he rolled over into Kateri's bed and marked his territory there too. So that was fun. I thought of using the extra energy for a Costco run today, but then realized I have no reliable freezer space. We have a new one coming Saturday, which will be the last day of infusions, so maybe Sunday I'll restock.

I don't' know how long the side effects last, hopefully at least until then. The nurse did say the third day is when it really kicks in, which is today. Maybe I'll add some a weight work out or something. I cut out my Snickers and half-and-half routine. I don't know when the puffer fish effects kick in, but thought I wouldn't give them too much to work with. Another fun item on the side-effects list was 're-distribution of fat deposits.'  So maybe I'll end up with kankles or a pseudo goiter. But I have an extreme weight loss program already set up, in the way of HSCT!!

Monday morning, I woke to an email from Italy saying they are ready to move ahead and can schedule to begin treatment in Florence in January of 2017. Only a year since we first applied.

Then later that day, Rebecca, our nurse in Chicago called, to say insurance got back to her and I am approved for treatment in Chicago!


 No repeat appeals and denials for months. Just a flat out YES! (I'm wondering if the whole Acthar attempt made them re-think the cost benefits of HSCT.

I could hardly believe it. It felt too easy. I get HSCT. In Chicago. I don't have to be out of the country for  three months straight. Won't have to indenture the kids. The kids will get something in their stockings. She sent over some dates, starting Nov 1st. Two weeks, then I   get a break, so home for Thanksgiving. And then back for the last part and done just before Christmas!

(This is the abundance part. FYI).

I feel like I should send out cards with a RIP MS 1991-2016 for my 25th anniversary announcement. (look at that! my math is getting better already!)

A friend at work has been giving Shane some warnings about chemo and the effects on the brain and how some people come out on the other side with personality changes. I'm thinking cool. Maybe I'll come back nice, or something. Or smart. Or humble. But let's not get head of ourselves. I know I ll come back weak, really tired, once the steroid part wears off, most likely really cranky. Much like Fiona's response to everything on a bad day, I'll respond to any suffering with,

 "I hate that one!"

So, lots of opportunities for growth coming up.

 But at this moment, with real hope looming so close by, I feel her good day response of,

"That's my FAVORITE!"

Thank you to everyone for all the support and prayers this past year. Please, keep them coming. We are just getting to the hard work. But we are finally here!

Saturday, August 27, 2016

Planning My Kids' Schoolyear. You. Not Me.

But before we get to that, I would like to note, or everyone else to note, this is my second post. This week. So we can all feel really good about that. And time for a latte break. Just kidding. Given I usually only get a few minutes to throw something up here before mommy duty calls, I'll save the latte til I'm done here.

It seems the school year comes sooner and sooner with each passing year. Fortunately, I've worked on my peer pressure vulnerability til it's become about as numb and impervious to suggestion as my feet. The pictures of other kids posted on Facebook, all lined up in their plaid jumpers and hot sweaters does nothing even remotely to motivate me to grab my lesson planners( mostly because I don't even have those) and start filling out schedules. I admit, the photographs were a helpful reminder to get my paperwork sent in so the school district can't accuse my kids of truancy when they walk to the corner store to grab a sandwich. See? Lunch and P.E. at the same time! Just one of the benefits of homeschooling. The biggest one being not getting everyone dressed and out the door. With shoes on. Their own shoes.  Matching ones. And 50 other societal niceties designed to frustrate parents with multiple children and force them to just stay home. Not that much force would be needed.

Woohoo! Kateri took the  babies to get the mail (after a long and drawn out search for shoes) so I might get a couple extra minutes. Siblings are the best.

So I'll get down to business. As we are still up in the air about a date for starting treatment in Chicago, I'm aiming to keep this year very fluid and agile. Think Agile. For sloths. Changes might come about slower than they should and scrums might look more like idea gathering for who should deliver dinner. But I'm also working on the serenity prayer. Or my version. Start with nothing. Anything beyond that is gravy. Oh good. that helped me decide on a dinner plan. It's working already!

Since all the formal education able kids can read well, we've decided to play go fish with the babies and set out a reading lists for the big kids. As the oldest ones are more capable and are showing interests in more adulty things, we've had some really fun discussions over some of the election issues and candidates. Since all kids start practicing for a law degree at age three, they all enjoy watching debates. In watching debates, the participants who's arguments came across as the most logical, thoughtful, and clear all had one thing in common. They had had a Jesuit education. Seriously. Even as  joke we say someone must have had one. Then we'd look it up. And sure enough. As the Jesuit missionaries went everywhere, there was no country or town that had not been reached by Ignatius's armies. Look it up. It's impressive.

The kids were so impressed they expressed a desire to be as eloquent and knowledgeable as the people they listened to, so I pounced on it. And said, I'll ask around.

It seems no one has written a step by step instruction book on how to give your kids a Jesuit education without leaving your house. Fine. I'll leave my house occasionally. Still no book. Maybe there is and I just have not found it. In the mean time, I thought I'd ask everyone if they had come across such a list, or had made one themselves. Shane and I could come up with some of our own lists, but why not stand on the backs of giants when it's possible.

The internet has made so many things accessible and we are finding it is really helpful to all watch, then discuss lectures/debates/presentations. So suggestions for online resources, or DVD sets etc. would be greatly appreciated. Fr. Spitzer, a Jesuit near and dear to my heart, has most, if not all of his lectures available on-line. So that has been great.

Shane and I had a lot of fun when we spent  a couple weekends watching a Yale professor's history lectures. He was super engaging to watch and I think would be more compelling than just handing a kid the whole shelf of Will Durant's History of Civilization.  Personally, I think the books are great. Some kids felt they were a little dry.  I guess we will have to come up with writing assignments.

I'm positive about making lists of topics for the kids, along with the resources for them to use so they can keep things going on their own when family life gets a little crazy, or we are all in Chicago for Christmas. Not that I know we will be there. At that time. Hopefully we will hear something back in the coming week.

We did hear from the Acthar company, and shock of shocks, insurance denied coverage. All $78,000. We could appeal, but Dr. says its unlikely because I have not had a bad response to the cheaper and readily covered  IV steroids. So we are moving ahead this week with the steroids. Maybe I'll use the extra energy/wakeful hours , if I'm not busy eating everything, to get the resources sorted out. Or maybe build a shed. But I don't have any building materials, so most likely I'll just sit around and eat frozen Snickers. And sort through any recommended resources anyone throws my way.
Thanks in advance.

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!!!!