Old tricks, new tricks

 This morning, my social media memory carried me back to the hopefulness of five years ago. The belief that after the stem cells of a generous donor were safely deposited in Dom's body, we'd soon be able to get back to our old tricks.

On the bright side, the cells are safely in his body.

This blog has become somewhat of a bi-annual observation these days. How do I write "we're still plugging along" over and over? But we are. We may not have the exciting twists and turns of will there be a donor match? Will the transplant take? Will the people upstairs in our temporary apartment ever stop partying with shoes made of clay?

Just like a daily dose of nature is as good for the soul as a once in a lifetime trip to a natural wonder; it's the daily gratefulness and observations that keep us going. It's good for my soul to take stock and look forward while looking backward. It occurs to me as I write this that I wouldn't make a good Buddhist. "Here now" is the culmination of all we've been through and what we hope for. I'm not interested in emptying my mind. I am interested in meeting the day with the knowledge that our hopes are very simple. To live while living.

So, how are we living? Much the same as the last few years.

We set our alarms to make the trek to Sacramento every other week. It's really quite a thing that now that we're "old" people, we wake early naturally in the morning, (sometimes really early since Dom is on steroids.) But Sacramento mornings, my alarm goes off and all of a sudden, I can fall into that elusive deep sleep I've been longing for. But I can't because we've got to go.

He's been on steroids for far too long. Most stem cell transplant patients are completely weaned off  immune suppressing drugs by now. Our Dom is special. You know how your immune system kicks into gear when you have a cold and it wipes out all the intruding bacteria/virus and you're back to normal before you know it? Well. Dom's immune system continues to see his vital organs as intruders and sets about wiping them out cell by cell and won't stop until his organs are wiped out like a cold or flu. He continues the UV therapy. The nurses continue to marvel at what beautiful veins he has. The doctor has concerns. Here we are.

Our journey has taken us from a bustling hospital unit with dozens of nurses we got to know; I was actually in some ways excited for his 5 day hospital stays so I would actually get to visit with people. From there we spent years visiting the Infusion Center where again, we would see dozens of familiar nurses and while many people were seriously ill and there was an air of somberness, there was also an air of celebration and camaraderie for each small step. The Infusion "Center" was actually 3 different locations. Two of them were bustling. As time wore on, and Dom's treatment transitioned, we were sent to the smallest center, and the specialized machines used for Dom were in the back corner away from the hustle and bustle. At times, the quiet is nice. But it's not the same as when we'd walk into the bustling center and it was like an episode of Cheers, only they'd be calling out "Dom" instead of Norm. I even miss the beeps and alarms that kept us awake all night in the hospital and followed us through each center.

And now, the hospital and doctors have been rearranging and consolidating and we are in a closet on the ground floor tucked in behind registration and see only our nurse and maybe one other. 

And it feels very much like our journey.

In the beginning, people were riveted by our story. We were surrounded by caregivers and concerned friends. As time has worn on, things continue to shift, and downgrade, and sometimes, it feels like our life has been distilled down to the people I can count on one hand attending to us in our closet.

Life imitates art, and apparently can also imitate medical organizations.

Five and a half years into the diagnosis and two and a half into a pandemic, I finally got a sourdough start. My first loaf was almost perfect. The following two were heavy. I'll leave that there.

Dom's full time job continues to be living. Being on steroids is no fun. Our marriage is a good one and we've made it through a lot of things others would crumple in. But steroids? Hoo boy. I'm going to want a gold star when he's finally weaned off of those. We've had a few moments where we just stop, blurt out "it's the steroids" and move on. He has good days and bad days. He has days where he can putter around outside and days he is one with the couch.

There is no prognosis at this juncture. The body will do what it will do and the doctor studies his numbers closely. There's talk of seeing a kidney specialist next because they are taking quite a beating. Dom is eager to be productive, and he does what he can. 

We're trying to imagine what life looks like given our situation. We both have to reinvent ourselves, but in between the reinvention is the reality. I need a better job to support us both, but the pandemic threw a secondary wrench into that. 

And in spite of all that, we are laughing and loving and being. 

Throughout his illness, we've been stunned by the precariousness of life as well as how capricious death seems. It felt so weird that Dom's life was hanging by a thread and we'd hear news of a police officer shot in the line of duty or a firefighter down in a fire and we'd talk about the lack of rhyme or reason. We experienced that in an even more intimate way this year, as his brother's precious wife was taken suddenly and unexpectedly. She was just two months older than me, very active and just like that, we lost her. I cannot make sense of all the times she supported us throughout Dom's illness only to be the one who is snatched away from us. She was a beautiful human being and dearly missed.

We continue to take so much joy in our animals. Out of seven baby chicks, we did not get one rooster! For months, I studied their markings and behavior and was convinced with my luck, we'd have seven roosters. If you haven't just stopped and watched a chicken run recently, I highly recommend doing this. Just like so many things on my mind today, it defies reason.

 

The bobcats still approach the cage as if it's a vending machine. With the help of friends, we've enclosed the whole structure. But we continue to be vigilant for hungry predators. Yesterday morning, a fox came by. 

We're in love with our stray cat. Houdini, unlike his predecessors, is not a lap cat, so when he does come around with purring and nudging, we're thrilled. I always did love the hard to get creatures. He melts our hearts every day. We're especially grateful for him as we lost one of the other boys. Our Errol Flynn is gone now. The cat I was so desperate to get home to all that time in Sacramento, the wily cat who made my neighbor cry when he escaped the carrier during the fire that nearly burned our house and she was trying to rescue him, the one who made peace with Houdini and ate side by side with the new kid in town. I do not deal with loss well at all. It is an inevitability. These years have been a Master Class in acceptance and growth. 

It was Dom's first try at gardening this year. I think he's hooked. It's a battle against the critters, but we try. The bare root apple trees produced four apples this year, and we call that a win. He developed an appreciation for Kale and the chickens feasted on tomatoes.

 

I've been sitting on this all day. It just reads like a Christmas card, but really, I have so many things I want to share. But not like an apple pie I can cut into pieces and just give you a piece, more like an apple cart someone can push while I pull. 

I have a lot of thoughts around the words blessed and grateful. Dominic and I have never asked "why me?" through this whole ordeal. But why not me? Is that an equally unfruitful question? 

We are so grateful. But life is also nuanced and blatant and complicated and simple. I'm not sure where I can write all the other things that are just as real and true as we are grateful. I think this sums up what I'm trying to communicate perfectly.