Rebuilding this house.

An overflow of flowers from a friend. 

It's difficult and easy to believe I have not blogged in three months.

I don't know if it was a lack of time or a lack of heart or both. The first month after being in the hospital, all I could do was look after Dom and sleep. I gave myself permission to do just  that after I'd done whatever work had to be attended to.
Looking back at our time in the hospital, it's almost surreal. Living in a hospital is weird enough. Constant noise, interruptions and lack of autonomy. Constant dread regarding Dominic's well being. That alone is exhausting.  I guess even the luxury of cathartic writing was too much.

The beauty of it is, when I look back on our time in the hospital,  I don't remember (mostly) the exhaustion. I think of the nurses we had relationships with. I think of the warmth of the staff. I think about how much people cared for Dom to get better. I think about how grateful I am that we are home now.

But 3 months! Where has the time gone? 4 months since we've been out of hospital.
I guess I have less material as I'm not in a hospital full of characters any longer.

And, to be honest...my spirits have definitely taken a hit.

It's difficult for me to be cagey, so it's easier to just not write at all. Because heaven forbid anyone actually see me!

As I sit and write, Dominic and I are watching The British Baking Show; they are making Samosas. The first Samosa I ever had was when I visited our good friends in Edinburgh attending University. I think that's funny. I traveled to the UK only to fall in love with an Asian dish. My friends were fortunate to live down the street from a little market that sold the best fresh homemade Samosas.
Dominic and I watch a lot of food shows as he forges a new relationship with food. Eating still causes a bit of pain for him. Too often, quite a bit. (If I could add a sound effect, you'd hear a record scratch here. Science corner time. The pain he is feeling is not something that can be cured by what he chooses to eat. This pain is his new immune system attacking his gi tract as an enemy.) We look forward to the day he can just eat and be merry. Will that day even come? I tease that when our trips to Sacramento come to a slow drip, I can get a job as a line cook in a breakfast restaurant, as each morning I fix eggs, sausage, toast, tea and sometimes a bit of leftovers in the mix.
Last night, Dominic made a simple apple bake he'd come across. We've made some apple dishes together where he sits at the table peeling and coring and I navigate the rest. We have to be so intentional right now. There's the chore of eating for him, and the pleasure of eating we're looking for. (I've unfortunately found too great a pleasure in eating this past year plus.) We both need to stop and recognize we're not just jumping through a hoop. Life can seem mundane; particularly when you're as severely limited as we have been. As Jane Austen says, life can seem a quick succession of busy nothings. Especially when it is punctuated by one doctor visit a week that has lately made him sick. Anticipating and recovering; round and round we go. If we're not careful, the days slip by into oblivion.
Even as I type, I'm mindful that we've not been mindful enough.
I'm juggling my part time job, care-taking the ranch and Dom. Instead of having a schedule I can follow, I feel like there is a rope around my neck and different tasks yank me in every direction. I'm sure I am not alone in that feeling. I'm sure lots of my friends feel this way, juggling children, parents, jobs, and all the curve-balls of life. I keep trying to put it into perspective, but perspective gets whacked everyday. I've been living in survival mode for so long, I can't catch up.
If this blog post were a dubstep song, this is the part where the bass really drops.

I'm struggling. That rope around my neck yanking me along would be tolerable if it wasn't accompanied by another rope that regularly chokes me with the whatifs. Whatif he is in constant pain the rest of his life? Or the dreaded and common whatif it comes back? Or the ever so slighter tug of how long before he is strong enough to walk up and down our hill again, or drive? (Or even bring me coffee.) I try and push it back. That alone is exhausting. Without diminishing the true exhaustion my fellow humans feel, what I would give to be exhausted by a career or a child or a social life. Sometimes I feel like people think what Dom and I are experiencing is over. Solved. Complete. How I wish it were. Since our immediate needs are met, I think people forget we have heart needs. We have long term needs. And every day I remember it's no human's job to meet our needs. But it brightens my day immensely to know that people care about us, about our hearts. Sometimes silence is brutal. But little messages checking in, short visits, phone calls. That's everything to us right now.
.
California is struggling. Again. Fires to the north and to the south. I was glued to the news the day the fire broke up north worried for a work associate and his family. (They are safe, they lost everything.) Then I worried for other friends a little west of the fires. They are safe. My heart has ached right along with so many aching hearts seeing so much loss and tragedy.

I listened to an interview with a woman who barely escaped. The way out of Paradise is narrow. (I can't help but see some irony here.) She sat in her car for many hours barely creeping down the road. She was interviewed because people want to know what it's like to barely escape from a fire. We're curious people. We gravitate toward the sensational. As she shared her harrowing tale, I'm sure listeners can see the flames coming up behind her. We can imagine six hours in a car wondering if we'll outrun the fire or if we'll be overtaken. While I think we can all empathize with that experience, we'll never know exactly what the people coming down the hill felt, as they people got out of their melting cars and ran for their lives.

But I feel like I've been driving down that hill for 18 months now. Trying to outrun the fire with Dom. It's so hot I wonder if we'll withstand the heat. The cancer diagnosis was like that rush of adrenaline you feel when you realize you have to flee. The transplant felt like losing a home. But this graft versus host, this feels like being stuck on a hill wondering if we'll make it down the hill or if the flames will overtake us. And Dominic is the one getting singed along the way as my knuckles are white gripping the steering wheel.
It's terrifying. And exhausting.
And as much as we put on a brave face, and try to be positive and grateful....this journey is more than we can always bear.
It's incredibly lonely.
Friends have shown up in the most unusual ways. Friends I would never expect anything from have offered a shoulder, a house, money, food. I'm in an awkward position of feeling like I don't have enough time, but feeling like I need to connect with people.
We're not out of the woods friends.
We're pleased with the progress Dom has made, but he has such a long way to go. We thought he'd be free to live a normal life by year one. And now it looks even more far away than we ever could have imagined.
As is always my way, I do not like to close on a sad note. A weakness in my personality is that I like to be understood. Once understood, I like to sigh a contented sigh and press on. This is probably the most difficult thing Dominic and I will ever endure. And yet, we are always held. Always loved. Always cared for. Cared for in miraculous ways. And the season of Thanksgiving is here! We have much to be thankful for. I don't have to live in that car careening down the fire hill. I can live in gratefulness for all that is going well, for all the ways we are lifted up and for all the love shown. Resting in that and enjoying some twinkle lights of the season sooth my soul.