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.