Alexander moves to Australia (or Iceland)

 

 

Having always been enthralled with Alexander and the Terrible, Horrible, No Good, Very Bad Day, I like to laugh at the absurdity of bad days. Or weeks. Or years. Because, if you know the book, there's always Australia (or Iceland). 😉
*Please, only read this with a sense of humor* No sad faces please.
Wednesday was our 10th anniversary. Yes! 10 years. 7 of which have been dealing with disease, doctors, hospitalizations, and finally, the dreaded Covid. We're waiting for our prize.
We've been squirreled away. Limited contact with the outside world. We're a little feral.
We got very excited about a restaurant getting rave reviews for its gluten free pizza. Dom had just lamented ever having a good pizza again given his restrictions. Then I heard about this place. It has an expansive patio, and we thought we'd risk it for lunch. And if it was too risky, we'd have a picnic nearby. (Dom is still high rick for Covid and Measles as well.)
I packed our cooler with drinks to be prepared.
I pulled out a summer dress I'd bought at Christmas and had tucked away for warm days. I was so excited to have an occasion to wear not just a dress but the dress I'd pined for, for some time before nabbing it in an outrageous sale.
I slipped it over my head and noticed as it shimmied over my shoulders, a giant hole in the back.
A brand new dress kept in a protective bag. Damaged.
I'm a sensitive sort, and it was difficult to not feel a lot of it's not fair. Life is hard. Why me. Over a dress. But wait.
We hopped in the car, sun shining, smiling, anticipating our first date in 7 years. No really.
And then, the car died at a full stop. Huh. I must have stalled it. (Proud driver of a manual here.) Only. It happened again at the next stop. And again. And so, we turned home,
The next day we'd have to be in Sacramento for Dom's treatment. We didn't have time to take the car to a repair shop. Dom did a little research. Went with best case scenario. Fiddled with the oil dipstick, heard a pop, drove up and down the drive with no problem. We decided he'd fixed the problem. Anyone who thinks we're negative nellies does not know the amount of positive thinking we exert on the regular. But our denial/positive thinking got us to Glen Ellen before I ruefully turned the car back toward home.
Mom raced from her house 40 minutes away at the ready and we made it to the appointment just an hour and a half late. Because here's why we didn't cancel our appointment: Dom is their favorite. There was a training happening and they always juggle Dom in on those days because he is so easy going and has the best veins. It's a thing.
And here's why I don't want any sad faces. I got to spend time with my mom and in Ikea. We had cinnamon rolls. (Nicky's are a billion times better, but when in Rome.)
We were an hour and a half late, but only half an hour later than usual headed back home. Neat how time works.

 

We got home to no internet. Someone accidentally cut it. I had a bit of work to catch up on, but had to postpone. I was so frazzled by Friday. I got up early and fed the chickens. A task Dom is usually happy to do. I wandered down to the fish pond/tank after feeding, as it always makes my heart happy. (This is an old photo being enamored with the fish.) On this morning, it did not make my heart happy. The barn is being painted and having minor repairs. Woodpeckers have been tucking acorns in the roof. Someone scraped the acorns out only to fall into the pond. The tannins would leach out and kill the goldfish. I immediately began fishing out acorns and detritus, bailing out water and giving it a spring clean. And we laughed, because what else am I supposed to do without the internet?!
I was feeling real sorry for myself Wednesday, as we were supposed to be celebrating our anniversary.
But by Friday, having run back and forth between house and barn cleaning the tank, fixing the internet, (we currently have 100 feet of cable running across the drive connecting me to you), I didn't have the energy to feel much of anything but grateful for the tub of ice cream in the freezer and the husband I would still say yes to, even knowing what we'd be in for.
The dress is being exchanged.
We have the $ to repair the car. (Rats are chewing through wires. Ugh. Country living!)
We made it to the doctor.
The internet is (mostly) running.
I'll get more goldfish.
We'll get to that restaurant.
*Dom is still with me.*
The traditional 10 year anniversary gift is tin or aluminum symbolizing resiliency. Maybe I'll start calling Dom my tin man. Only, he does have a heart. And that my friends is what it's all about.

This photo was captioned: Sometimes when you're on your knees pulling weeds near sunset and you look up.
 

Two Thirds

 It's that time of year again. 

I get more pensive. Maybe tear up a little more easily. I count blessings and I count sheep.

Dom and I were married on a May 15 and we went to the ER on a June 15, so each wedding anniversary anticipates a less celebratory anniversary. It was 9 years this past May and 6 years this past June. A full 2/3 of our married life has been spent navigating a path we didn't mean to take. I may have packed my life differently had I known this is the path we'd be on. But life, like a wildfire doesn't always give you time to pack. Sometimes you just run. I think I'm still running. And I am un-apologetically oh so tired.

When we were essentially living at the hospital, I watched a favorite show on repeat. I would fall asleep to Father Brown and sometimes a nurse would just ever so quietly close my laptop. I really appreciated the nurses who would get in my business that way. As I was anticipating this anniversary I was also anticipating a new season of this show that is now intrinsically tied to our journey. The show is loosely based on novels by GK Chesterton. He's a crime solving Father. I love crime shows because they have tidy endings. I particularly love Father B, as Dom calls him, because he shows so much compassion throughout his interactions. And of course, the setting in the Cotswolds is cozy and comforting. We started the new season last night and I am delighted. I'm even slightly nostalgic for the camaraderie of all the nurses and how well we cocooned in our room and were cared for.

I get particularly nostalgic at this time for all the goodness shown to us and think of all of you who decided to hop on the path with us as far as you could. There are stories of generosity that just resonate with me and give me hope beyond the immediate provision.

Here's the Christmas card part of the annual update. Nothing much has changed since our last update! 

Dom continues his photo-pheresis treatment every other week. It's about a 3 hour process intended to reset his immune system. His system is still in chaos. His kidneys have been attacked for nearly 3 years now and he's been on steroids all that time. That's not good for the body. And Dom and I will both tell you, high doses of steroids can be very challenging for an already stressed married couple. If we're honest. But we keep chipping away at our egos and resolve all steroid infused trials with lots of love. In addition to the 3 hour treatment, he occasionally needs another infusion of IGG since his body currently struggles to make it. Those days can stretch to 14 hours with a doctor visit in between and with driving.

When we're not being road warriors to and from the hospital, we putter. I mean, work. It's never ending on the property. It was a very wet winter. Water, water everywhere, but not a drop for me. We lost power over a dozen times over the past year, and as many of you know, that means no running water as well because well, we're on a well. And speaking of the well, the holding tank and pump also had to be replaced to really sharpen my bucket carrying skills. Half a dozen trees came down over the year. We were quite fortunate when the large oak came down across the driveway, our friend was here and between the three of us, we were able to make the drive passable for the other tenants. That's pretty much the way things are around here. We fumble along and things work out.

Christmas Lights Hope Lights

I think we're going to drive through and see the Christmas lights on the Fab 40's in Sacramento tonight. We have a very early appointment for a pulmonary function test and decided to drive in tonight and stay in a hotel. Not the place we stayed that terrible week straight out of the hospital. Not a glamorous hotel either. Just a nice place where I got a nice discount with a special code for transplant patients. We have lovely friends we can stay with, but we're setting out almost with a little holiday in mind, and a hotel for just one night on my terms sounds a little dreamy.
 
And this day, this is Dominic's birthday. Not his actual birthday, his second chance birthday. The feelings all pulsing through my heart are palpable. One year ago, we watched the bright coral colored stem cells flow into Dom's body, and we went to bed that night in the glow of my battery operated Christmas lights with the knowledge that he'd made it through that first big hurdle of accepting the cells. We fell asleep feeling like our whole lives were before us.

It really felt like an actual shift. All the chemo is behind us. All the anticipation.

Well. Not all the anticipation. We still anticipate what is next. But the donor had been found, and the job was done. So now, we hope. We persevere.

After almost exactly a month in the hospital, we were free to move into our temporary place. After a month of being in an enormous room with people peeking in the door out of curiosity, people walking through the door to work, and the lights and beeps, we were released, and though where we moved was not literally quiet, in my heart it felt like the quietness you feel in a snow fall when sound is muffled by snow flakes falling and collecting all around.

With Christmas just days away, and our newfound freedom, we bundled up and set out to see the Christmas lights.

Which is the same place we're heading later tonight. I'm also jumping out of my skin because after the appointment  in the morning, we're meeting with one of our most favorite nurses to catch up. It's been too long and we're delighted to finally try and meet up. Well....we tried before, but timing thus
far has been off. Fingers crossed, because we really miss her. And there's some synchronicity both in seeing the Christmas lights and seeing our nurse.

We'd see this nurse throughout the months of chemo, waiting in agonizing anticipation for a donor. In the middle of the night she'd come in to make the beeping stop, but she was never our nurse. We immediately liked her, and I'd wonder out loud when she'd actually be assigned to us. I later realized she only works with patients after transplant. So finally, after months of visits to the hospital, she would actually be the one to carry Dom through the night. And tomorrow again, after months of agony we will get to connect with her. Even though she was our nurse again during the very difficult time, I don't think about that. I associate her with being part of the other side, the other side of transplant, the other side of gvhd. We are being ushered beyond these milestones.

And the lights. Last year, we drove through feeling a deep kinship with Christmas and new life and the wonder of it all. Tonight, we'll have this whole year behind us. And though the whole year is behind us, it almost felt like a wrinkle in time, where the past 6 months of the horror of gvhd are in that fold, and we can meet again the feelings of hopefulness we had a year ago, the feelings of being in a cocoon in the hospital and in our apartment in Sacramento. While we always longed to be home, we also felt so safe being in the hospital or so near the hospital. And while I greeted that old feeling of security again, that I associate with that time in anticipation of driving through a twinkly wonderland, I also feel like we're truly being deposited on the other side. I finally have a sense of relief that this time, Dominic's new immune system is going to kick into gear and do what it is supposed to do. What better bookend to this year than sparkling lights and sparkling friends? Dominic is getting his sparkle back every day. Our ground zero now is a little more ground zero than last year, but we're more resilient, more tenacious, and more experienced. 2018 threw us a sharper curve ball than 2017. As I think about all these comforting things on Dominic's first birthday, I am convinced that 2019 will lob an easy home-run to us and we'll look back on his second birthday with even more joy and life to celebrate.