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!

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