Alice: Radiation, Week 3

Three weeks of radiation down. Two and change to go.

Every day felt like Friday. It’s funny how every day has a certain “feel” to it. All the days felt like Friday. Not the good kind of Friday feeling – where your work is about done and you get to start having fun. This was more like what Bilbo Baggins was talking about: “I feel all thin, sort of stretched…like butter that has been scraped over too much bread.”

All week, it seemed that tomorrow must finally be Saturday or Sunday. Oy. It makes for a rough Tuesday!

But that’s only my problem, and more an observation than a gripe. Because Alice is back. It’s so grand. Active, happy, playful old Alice. Essentially all her symptoms are gone. Eyes are back in line, she doesn’t teeter to the left when she walks, she’s not afraid of the stairs, and her right hand is no longer trembling. Barring a miracle, it’s temporary, but we’re enjoying the you-know-what out of it. As Pastor Ivan told me this week, we’re working to jam an entire lifetime of love and family into a condensed window of time.

Alice just in from a ride in the snow

I took some of the generosity given to us and picked up a rather inexpensive, 25-yr old Yamaha four-wheeler this week. Yay craigslist. Alice loves it; I knew she would. We go tooling around the hayfield in front of and behind the house. This afternoon we piled 7 of us on there… yes, 7. Alice, two sisters, three cousins, and me. Good clean fun. Tonight we went for a little ride in the dark while the snow was falling like crazy. I put some sunglasses on her since she sits in front of me and it’s hard to see with all that snow flying in the face and eyes. It was awesome.

Four weeks ago, Alice started on 12mg of steroids per day. She’s down to 1/2mg a day now.  I can’t tell you how happy we are about that. No more endless obsession over food, and her cheeks which had grown so chubby she would come back from radiation with tracks in them from how tight her mask had become, are beginning to shrink down, if ever so slowly.

She had been going under sedation without adding an anti-nausea medication for the past couple of weeks. But today after leaving radiation, and just before walking into another appointment at another place, she vomited all over herself in the car. My wife, always on top of things and prepared for virtually any calamity, had a spare change of clothes, so crisis averted. It was only Cheerios anyway. And yay for leather seats in the Jetta.

About two hours later, rolling up the freeway, “I’m gonna frow up!” Shelly says, “Where’s that bucket I had in the backseat in case she got sick?” I say, “Oooooh, that’s why that was there. Ummm, sorry. I was cleaning out the car and…” By that time, she’d grabbed a cereal bowl, Alice vomited  into it, and that was pretty much that. So I guess on Monday we’ll have to start using the extra meds with sedation. Bummer.

So far she hasn’t needed a transfusion. We’re happy about that too. But she’s getting closer, and it looks to me like we won’t be able to avoid it forever. Hemoglobin and platelets need to be at a certain level, and they have been safely above so far, but nudging downward this week. Bummer.

She has some hair beginning to fall out. We were warned it might happen, and it is. So far it’s minor, but it’s happening. There may be a band between her ears around the back of her head that loses hair, and that’s no fun.

I need to mention how incredible the entire staff at the hospital has been. I’d use the word “professional,” but that seems sterile. “Friendly” might not convey how talented they all are. And we remarked this week that somehow they make us feel like we’re the only ones there. Dr. Katie, Alice’s radiation therapy doctor, wrote her cell phone number on her business card the first day we met her and said, “Call me anytime. 2AM, whatever, if you need me just call.” Brad and Rob are our friends down in the radiation room, and they are so great, day in and out. Brad is a homeschool dad, who, like me, devotes a percentage of his income to late library fees. It’s good to have friends to share some of life’s smaller sorrows with!

Alice and her favorite nurse Amy. The ever-present “Bear mask” has almost replaced name and birthdate as positive ID.

The nurses have been incredible too. Amy, Suzy, Grace, Laura, and La’anna are Alice’s friends now, and they greet her every morning with a smile and a laugh, and somehow, even after 15 trips down to be put to sleep and radiated, she doesn’t mind going “to the Doctor’s house” at all. It’s part of her day, and she seems to rather enjoy it. The whole nursing staff waves goodbye to her every day now, and dear Amy wasn’t our assigned nurse this morning, but she stopped in just to visit with Alice and say hi. She’s wonderful. The anesthesiologists too have been amazingly kind, personable, and very gentle. Dave, Connie, Staci, Dr. Wendy and Dr. B., and the ever-smiling Dr. Elena and Martha give the morning some joy.

It’s perhaps a funny scene, Alice and I in her bed being wheeled from our prep room down to the radiation room, as she sits in my lap watching SpongeBob, (and once again laughing at it, as of this week!) and catching the doctors and nurses traveling along with us getting into the show too. It’s kind of our thing now, and makes the morning go by with at least some levity.

Shelly and I are hanging in there. We have our moments. I attended a family birthday party last weekend, and spent the first hour just sitting on the floor by myself, unable to eat, surrounded by family that I love very much, but mostly wanting to be alone. Shelly has the same kind of moments. They come and go. Mercifully, if I’m down, she’s up, and if she’s down, I’m up.

We went on our first date in weeks on Thursday night. It wasn’t easy to get out of the house, nor to leave Alice and Violet behind, but we needed and greatly enjoyed our time alone. I like to drive the truck when we go out together – it’s the only vehicle we have with a bench seat, and Shelly so graciously sits in the middle, yay me! We tried the new Mexican restaurant behind Casey’s in Cambridge. It was really good!

We talked and laughed, unburdened ourselves of other matters on our hearts besides cancer (oh how I wish the rest of life would just stop and let us deal with one crisis at a time!), and enjoyed each other’s company immensely. When we went to leave, we unsuccessfully tried to pay our bill, because someone else, we don’t know who, beat us to it! That’s never happened to us before, and it was so cool! I don’t understand it – typically when there’s a somewhat over-weight middle-aged guy making googley eyes at a beautiful young-looking blonde, responsible people call the cops, not buy them dinner, but hey, we’ll take it! So thanks so very much, whoever you are, you made our evening.

Alice joyfully and triumphantly eating “sticks”

Someone very kindly gave us, among other things, some incredibly delicious New York Strip steaks. So this week Alice said, “I wanna have sticks for supper!” And “sticks” we had! She was tortured by having to spoil her perfect dinner with a few pieces of broccoli, and I think that only endeared her to me all the more!

We’ve been the recipient of so much kindness, and we are so thankful. To all our friends, our family, to complete strangers from all over the state and the nation who have taken time to write us, to send us gifts (and I think every teddy bear that’s come has had at least one turn going to the doctor’s house with Alice!), to reach out on the “go fund me” page, and the many many more who have lifted our little girl up to the throne of grace, we are so incredibly grateful. I often say these days, “We’ve never wanted to be prayed for so badly in our lives.” And it’s very true. We are still working through the emotional challenges of trusting in the love and mercy of a God who could fix this just the way we want it, when we want it, but hasn’t yet, and maybe won’t on this side of eternity. But trust Him we must, and as my dear Uncle Fred said, to my great comfort, “He will not abandon you now.” And He hasn’t. After all, to whom else can we turn? He has the words of eternal life.

As I sign off, I’ve mentioned before that we like to say Psalm 23 together as a family before bed. Alice memorized it months ago, but we think the tumor has made her unable to remember it, and she’s frustrated that she can’t remember it, then she gets rather irritated when we say it together, but she can’t join in. So we mostly just say it after she’s gone to sleep, or she pretends to sleep and just ignores us. That’s hard. But Shelly just told me that she said the whole thing this evening, complete with the little actions we have! How fun. These are joyous days, and we love them, and are squeezing all we can out of them.

top photo is Alice this week. She’s probably playing Minecraft on the X-Box, but the books in the background give the illusion that we are a serious-minded, studious family. Ha! All about the optics!

 

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