Milestones

 It's time for the biannual update!

We're on to year eight of this journey, and we have not arrived. We've changed, aged, laughed, cried, and seen some things. As I've anticipated this anniversary, I've been thinking about milestones and context. The first day of summer is in less than a week. I think this is the first year I've made the connection between when we went to the ER and the actual date of summer.  Seasons had been so nebulous to me. And, Sacramento summers are much different than Sonoma County summers. The feeling of summer is changing. I don't know how much I perceive summer differently because it is hotter or longer or later or, if it's because it bodes illness and fire. But it definitely lands different each year. 

Before Dom and I got married, I was very detached from the rhythm of seasons and of the land where I live. Over the 25 plus years I've lived here, it's had a few different phases. The first decade, I never noticed the tall grasses and weeds. I kept to the houses and the paths. My life happened elsewhere, in restaurants, churches, yoga studios, beaches, and with friends. I lived here completely alone a couple years, and never saw rattle snakes or coyotes. Once, I saw a cougar crossing the back field. That was a big day. (I saw one later with Dom and that was an even bigger day.) I could hear the coyotes, but never saw them.  Others who have lived here over the years would tell me about the rattle snake they saw slither under my house or they caught in the carport; but I don't recall seeing one until after Dom got sick.

But, before there was Dom, the horses moved in, for a short time. It was delightful to wake up to horses right outside my window. The fencing outside the picture window where I sat and worked was chewed heavily as the horses hung out begging for food and attention. They had a whole field to wander in yet spent much of their days reminding me they exist; lest I forget from moment to moment. I was tasked with cleaning their stalls and feeding them breakfast, and it was a cherished time. I'm not a morning person, I am not a type A, I do not get up and into the day straight away. But when the horses were here, I did step out of bed, into farm clothes and greeted the day with two horses and a pony.

Then they had to move, the family with the horses and the pony. And I was alone again on the ranch. Things were a bit topsy turvy in all areas of my life. And suddenly, I was Mrs. Egan. And suddenly, Dom was on a tractor, as has been a background photo of this blog all these years. And I began noticing things I hadn't before, in part because now we shared more responsibilities together than I ever had alone. And then Dom got sick, and the fires came through and the anticipation of summer had so many more implications than ever before. 

We work hard in the spring preparing for summer; to be as safe as possible. This spring has been particularly busy as the place we live is undergoing yet another transition and we have obligations related. We've also both had more medical appointments than usual. I won't go into mine, they're the stuff of life for a woman in her 50's who completely neglected her health in the onslaught of all Dom's needs. 

But Dom has had extra treatments, which have shaken things up a bit here. His immune system is still not behaving. It continues to attack his vital organs. The doctor decided to try a month of infusions in addition to his regular Apheresis. It was one of the infusions he'd received during chemo before his transplant. The good news is, I was able to advocate to have the second procedure to be done in town. It's been the doctor's m.o. that all procedures happen in house in Sacramento, but I pulled some Puss in Boots Eyes, and he agreed we could get his second procedure locally. Of course, the only dates available conflicted with his already scheduled appointments, and of course the doctor had a vacation overseas planned, and wanted to see Dom before he left, so we had to make extra visits. And of course, after 8 years, Dom's faithful doctor is retiring. We are so sad. We are not supposed to know this yet, but a little bird told us.

It feels like a milestone to be sick for so long that your doctor retires. The first day we went to the local Infusion Center for his treatment, I noticed the bell for cancer patients to ring at the end of their treatment. We never passed the bell in Sacramento, it wasn't in a place we frequented. But there it was, as we wove through the passages of this new to us center; there it was as we anticipated another four rounds of infusions. He finished a week ago last Friday, and we were back in Sacramento yesterday. But, still no bell ringing. Both literally and figuratively.

There's no end date in site. It's our way of life now. The only closer facilities are in the Bay Area, so we're not feeling the need to switch things up. But everything is switching up around us, and we're flowing as best we can. 

We're flowing with a little more ease as we've been gifted a new to us car. The mini got us there and back, and I marveled at how far we could get on a tank of gas. Our new car is a bit more thirsty, but she's quite comfortable, and I imagine if we had her when Dom dropped to 98 pounds, the drive would have been less distressing. But we have her now, and we can't not remark how happy we are to have her. She's Swedish. When I drove her off the lot, I pressed shuffle on my playlist and Abba came on singing The Winner Takes it All. And thereafter, we refer to her as Abba. She's our little dancing queen.

We still lead very quiet lives as the world has moved on, and Dom's health requires us to keep germs at bay. His fatigue also keeps us from straying too far from home. And of course, the cats and chickens. I am grateful we both have temperaments that are suited to this quiet. We know we're missing out on a lot of things. We're not actively choosing to be hobbits. We just are. 

We're both facing all of this in our own way and in our own time. 

We are so grateful for where we live. It is a lot of work, but it is an oasis most of the time. My social media friends know I rescued 2 snakes a couple weeks ago. Something about stumbling on two harmless snakes, mating even, gave me a sense of comfort. It's not all rattle snakes and fires. Nature is doing her thing, and it's glorious. Nature is also transitioning, as the snake rescue guy shared how his observations of snake cycles being different this year.

Everything is in flux right now, and I feel like without the insulation of a "normal" 2 kids and a dog, 9 to 5 life, we're feeling it a little more keenly. And not all flux is bad; there's ebb and flow. Last year was a disaster in our garden. Critters ate everything before we had a chance. I wasn't sure I wanted to put in any effort. In my mind, I catalogued all the things I had done through the years and just wasn't sure what effort I would put forth. In fact, since last November, everything has been low effort on my part. I know there's a connection. But, we rallied for the garden. I mapped out our beds and made a list. We have a couple blueberry bushes and they are ready for harvest just as I'm transitioning to garden mode. I did searches for how to protect our garden from pests and found big, gorgeous cages for sale. Then, instead of buying them, I repurposed some wire fencing we have, added some tulle so they look like two brides, and have since picked bowls of blueberries, as compared to a total of five berries last year. It feels like a win, and Dom and I need all the wins we can get. No win too small.

We're also passing the time trying to woo another stray cat. (That's him in the chair above, napping on the back deck.) Again, my social media friends have already been introduced to Seamus. He appeared out of no where, and considering where we live, is most likely a dumped cat. He left his calling card everywhere. Even if we didn't see him, we knew he'd been around by the spray stains every few feet. We've been wanting to catch him to have him neutered. At first, I was very stressed, as we already mete out time for our two boys outside. We're careful to let them out separately and when we'll be outside to keep watch. I was so concerned about territorial cat fights. But something really sweet happened. Houdini and Seamus have become friends. They greet each other with touching noses and follow each other, jumping from rock to rock hunting, or just flopping out in the sun. When you're hobbits, you have time to watch cats frolic, pick blueberries and shepherd chickens. I suppose you don't have to be hobbits to do these things, but we mark our days by whether or not Seamus has appeared for breakfast.

There's a cutout sign 20'x 20' just outside a little farming community called Dixon. After miles of small communities and farmland, you can see Sacramento in the distance, just as you also see this installation called "Stewards of the Land". It was erected in 2018. If you'll recall, 2018 is when Dom went back into the hospital after his transplant. We'd lived in Sacramento the first few months, and then back again through spring and summer. One day, after we'd made it back home, we noticed the sign and wondered if it had always been there and we hadn't noticed, or if it was new. It's so big, you can't miss it, and we were perplexed by our inability to remember. We now know it was new, and it serves as a milestone to the city for us. It brings me some comfort, some relief, as a signpost that we're heading into the place that makes Dom better. And, because we didn't know the context, we didn't know if there was more story to it, why it was erected, we were probably more fascinated by it than had we known all along it is meant to pay tribute to the farming community. It just seemed so random. (link to the artist and work) Stewards of the Soil

And isn't that how life really is? Signposts in unexpected places, milestones where you never thought you'd need one.

On our way home we remark almost every time on an old roadside diner sign. It's whimsical with a cow jumping over the moon. It signals that we're headed home to rest. The history of the sign adds to our appreciation. Before we knew any of the sign's history, it gave us, shall I say, warm fuzzies.  (As a side note, my surname was Hess, no immediate relation.) Wikipedia:

Karl A. Hess had the idea to build the Milk Farm restaurant in 1919.[1] He built his first restaurant in 1924 on Sievers Road.[2] It moved to the current Milk Farm Road location along Interstate 80 in 1939.[2] Originally called Hess Station,[1] it gained the moniker Milk Farm in 1940 when The Saturday Evening Post wrote an article about it, and also gave Dixon the nickname “Dairy Town” for its contribution to the California dairy industry.[2]

During World War II, Mr. Hess offered various deals, such as an all-you-can-drink milk contest for only 10 cents, pony rides for children, and reasonably priced chicken dinners.[2] The Milk Farm became a hangout for teenagers, and people competed to break the record of the most milk consumed in order to get their names on the restaurant's record board.

10 cent pony rides for children. Isn't that just nostalgia in a tidy little package? While we didn't know specifically about the pony rides, if we had to define what this sign evoked, that would be a good example.

And it's that whiff of nostalgia we feel throughout the year, as we look back on how things have changed, and how they have stayed the same. Some changes we embrace, (like Seamus and Abba) and others not so much. Some changes we don't even recognize until we look back or do some research. They're just giant road signs we notice that may, or may not have been there all along.

Massive love to those who still follow along our little journey. We may not be taking you on a Grand European tour, but wherever we go, there is heart and soul.

*If you leave a comment, leaver your name, if you'd like, so I know who you are!

Are we there yet?

 It's your bi-annual update. The minutes of Dom's recovery for investor's of a heart kind.

The 7th anniversary of Dominic's transplant, considered a re-birthday in transplant circles, came and went on Thanksgiving day this year. How apt.

I anticipated the day, and then it completely slipped my mind as I ate copious amounts of delicious food. On the day of thanks, one of the things I am most thankful for slipped my mind. I blame the pumpkin pie cheesecake. Not the tryptophan as I do not eat turkey.

One thing that weighed on me as the day approached is how grateful I am not just for Dom's extended life, but for all the love that was showered on us, and all the practical gifts of financial aid and the handful of people who made food for us. I found myself randomly composing thank you notes in my head these past few weeks. It's been over seven years now, but the impact lasts a lifetime.

This year hit a little different. We lost Dominic's mum in October, which is also the month we lost his sister in law Alison, just two years before. Dom did not have the energy to make a trip overseas for her service. That reality was something we'd talked through long before we lost her. We are grateful for the wonders of modern technology which allowed him to have conversations with his brother in the UK and sister in Qatar at the same time. It was so lovely hearing everyone, including Sam's husband Phil and Nick's daughter Hannah chatting and sharing stories about Ma and about moving forward.

So, it's not really that the anniversary slipped my mind; it's really that the days have been flying by. I always stop looking at numeric calendar days around Thanksgiving, just knowing, I have to be ready for a feast by the fourth Thursday of the month. And we were very ready this year.

My little reports in June are always full of so much anxiety for the fire season ahead, and come November, (now December), we've had rain, the brown fields have turned green, and the venomous snakes have mostly gone into hibernation. We celebrate giving thanks and fill the house with twinkly lights. It's my favorite time of year. It always goes by too fast. I try so hard to just sit in the season, and let it all soak in.

We're still in the June of Dom's recovery. Every 3 weeks, we go for his treatment and tests, and adjustments are made and there's talk of more frequent treatments and different therapies. I log onto his on line medical records and scan the test results. I live in anxiety that the protein count that indicates how his kidneys are functioning will have bolted again. There's been threats of putting him on a regime that would require weekly visits again, and I fret. I don't think I can do that again.

I'd find a way, if I had to.

But, we're ready for the post rainy season. We're ready for Dom's recovery to be that once a year visit Dr Carroll thought we'd transition to by now. We're well past that period. We're ready, but not there. 

So we continue to do what we can. Someone once said to me if her husband wouldn't do all the social things she loves to do, she didn't know if her marriage would last. What you do is, you adapt. You bend and flow. There's nothing I want to do without Dom at my side. We don't really feel like we're missing out, we're living to the fullest as we're able. And, I'm so grateful for the friends who have bent and adapted with us. It's such a tremendous thing to be so cared for.

And to be able to do it here, on the secluded property where we live, in beautiful Sonoma County, is a wonderful thing. 

We had a lovely visit with friends from Georgia in October. We have comfy outdoor furniture and amazing views and just enjoyed the time together. That visit was followed by my brother and his wife. We'd worked so hard to get the barn space ready for the first visit, it was a breeze by the next. (And our first visitors did a lot of the heavy lifting for me). Then Charlie, who owns our home, came for a visit and we had a gathering to celebrate his daughter's birthday and catch up. 

It's the most company we've had since Covid hit. With his compromised system, we're still very protective against viruses. We're generally open to visits on pleasant days, as we can sit outside and feel a bit safer.

Dominic is still extremely fatigued. He can do things throughout the day, but they're done slowly and with naps. I realized just today that I've had a weensy bit more energy. When we came home after the three month hospital visit, I was a mess. I needed daily naps as if I were the one getting treatment. But, the all night beeps and the worry and the driving were more than a full time job. It's nice to feel a little better. Dom feels a little better as well, but, the reality is, a little better is still not well.

We've made it through another "fire season". The last month of summer and first month of Autumn, we're on pins and needles. When the 2017 fire burned my Mom's house to the ground, it shocked me how little there was left. I've seen house fires here and there. Sometimes, you can't even tell there is damage, except some windows are boarded up, or there's a black singe on a wall. Sometimes, there's a big black hole, but the rest of the house looks pretty intact. I'd never seen the likes of what happened in 2017. What remained of her home was a pile of ash and a shower stall. On a bad day, that feels like what remains here as well. Maybe, if he'd only had Leukemia, he'd look like that house a little boarded up, but mostly intact. This gvhd has been a house fire that has been all consuming.

But Phoenix rise from ashes, not boarded up windows. 

So Dom is returning to himself little by little. He's been drawing every day. He made charcoal to sketch with. He questioned if it would be okay to have a fire after it rained a solid week with absolutely no let up. They call it a bomb cyclone these days. It results in an "atmospheric river" that means a lot of water is dropping in a short amount of time. I breathed a sigh of relief and proclaimed it certainly would be okay if he made a fire outside. I'm thinking a few more this season, just to mix it up. We can unplug from Netflix and bundle up with with the view. 

He's still shepherding the chickens from our ever present bobcats, coyotes, and sly foxes. We love our silly girls and love for them to find slugs and snails amongst the garden areas.

We got a hot tip from a friend that the Northern Lights would possibly make an appearance, so having missed them the first go round, we hopped in the car and made the journey about an hour north and we ticked something off the bucket list. It was such a treat to see them. Perhaps they weren't as dramatic as further north, but they were here and they were mine.

So, we're doing alright. We're on a journey we never thought we'd be on. We also never thought we'd see the Northern Lights all the way down here. But here we are. Taking things as they come and cherishing what is good.

PS: The wonky pool table is open for non-serious pool. 

And this kitty is open for scratches if he's not recovering from a big hunt.

 

 

It Was Seven Years On Saturday

 

It was seven years on Saturday. Seven years since we went to urgent care hoping for an easy answer and instead finding ourselves on the receiving end of a fire-hose of information. The past six years, I have anticipated this day. Marking time. I have thought about how I would mark it in a way to share with others who care to know how we're doing. This year, my thoughts just wouldn't rise to the surface. The day came. The day went. We pushed through. My brain could only emit a steady hum.

But then the thoughts started coalescing. An inspiring piece I read here. A nest of birds taking flight there. The things my heart wants to share are all there, just under the surface, swaying like sea grass and occasionally illuminated by sun piercing through water.

This morning kind of threaded the needle to bring a patchwork of ideas together.

Where to begin? Dom remains pretty much the same. I feel like a broken record here. He struggles to breathe. Walking is an issue as he struggles. He still suffers stomach issues on occasion and eating is not always desirable. He's lost a bit of weight again. It's sometimes difficult to center our thoughts. Is his pain normal or disease? Is his fatigue expected or disease? He wants to be productive and yet, his energy is finite. I push him with a paradoxical message. Do more. Don't do too much. Rest. 

We've been working hard and resting hard.

I've been reading different pieces that share a theme of wonder. Annie Dillard says (paraphrased) how we spend our days is how we spend our lives.

Alexandra Horowitz wrote a book On Looking: Eleven Walks With Expert Eyes. Reading a synopsis, the book is geared toward urban dwellers who are wrapped up in the grind and it's meant to encourage people to see things they may miss in the hurry and scurry. She takes the same walk with different experts and sees through their eyes. It's on my list to read. But it's just one of many pieces I've encountered on this theme of wonder and the humble question of the meaning of life.

What is the meaning of life when one's life has been so pitifully upended? What would you see if you were forced out of the paradigm of finding purpose through children and career, and achievement? People who claim to know the meaning of life still pursue family and career and achievement. Whether they be Buddhist or Christian, I don't know many people who just are. The Christians will tell you their sole purpose for being here is to worship God. The Buddhists will tell you it's enlightenment. And yet, I still see the hurry and scurry among them. I see the worship of family and achievements and the quest for more. There is no judgement. There is only a gratefulness on my part that at the end of the day, the way I spend my days, is how I spend my life. And it feels right and good to spend them in wonder.

We had a pair of House Finches build a nest in a bicycle helmet hanging from a barn rafter. She laid four eggs on Mothers Day and exactly two weeks later, four creatures emerged. They're not very cute those first few days. You'd hardly know they're alive if you couldn't observe feeding time. Another two weeks and one day later, the first baby vibrated right in front of my very eyes and took flight. The next day, the other three found their wings and the nest was empty. We altered our habits for one month. We left the barn doors open with a gate to deter skunks and such. We marked the calendar to keep kitties away when babies would be fledgling.

I photographed every other day and thrilled over each change. I ponder how four weeks is enough time to go from egg to flight, while I'm over half a century and have yet to find my own wings.

We've lived together in the same house for ten years now. I've been here nearly 30. We still get up for the bobcat. The rabbit. The buck or the doe. Whatever we see from our couch looking through the picture window, we go to the window and watch. We pause what we're doing. We pause the idiot box. We pause the conversation. We pause the cooking. We are always keen to see the passersby.

Dominic called me to the front window the other day. A giant buck was emerging from under the deck around the pool up the hill. I'd have to crawl on my hands and knees to get under. I couldn't believe a 4 or 6 point buck could tiny himself enough to crawl under. But he did. And I was fortunate enough to see him going under the next day. He runs across the field like he's got to clock in to work on time. I follow him with my eyes and as if by magic, he has disappeared under the deck. I don't think he's working. And I'm a little jealous as I tap away at the computer for my job. And I'm grateful I have both the environment and the eyes to see. 

I think we're a bit like a person who loses sight or vision. The other senses get stronger. I think, and I could be wrong, when you lose all the world holds up as success, your sense of wonder gets stronger.

I started this little essay with an entirely different thread in mind, and just like that, I stitched together something much different than I envisioned. You see, the events that inspired me to write are the things I most fear. Yesterday, I nearly weed whacked a rattle snake. It was coiled in a little cave of dry grass and looked very much like a cow pie to me. Except we have no cows. I went and got a broom to give a gentle little nudge so I could see its face and all I got was a tongue flick. It was so relaxed and camouflaged, I had no idea if it was a deadly venomous snake or a much desired (rodent eating but not venomous) King Snake. My neighbor came with her snake stick and lifted it out of the grass revealing a very fat snake, With rattles. How brave is she? 

I have a lot of anxiety about venomous snakes. I have a lot of anxiety about wildfires. And, just hours after my snake encounter, the skies darkened and my eyes and throat began to sting. A wildfire just 20 miles or so north harkened the very early arrival of "fire season". Two of my biggest fears came together on the same day. I thought about how summer is a very anxious time for me. It marks the beginning of Dom's health odyssey. The transition is tricky for me and I don't know why. The nights are cold and the days are hot. Summer is not my favorite time of year and I find myself counting down the days until the rain returns.

How funny that the next morning, social media would remind me that nine years ago, I also met a rattlesnake. Little did I know that almost summer day how very much I would and could endure.

And I realize as I meandered through the deep sea grass of my thoughts, that though summer makes me anxious and life is so much different than I thought it would be, I have a heightened sense of wonder that makes life so beautiful. And I cherish having a partner who delights in the small things with me. Perhaps you are gifted with worldly success and wonder. Perhaps you are very fortunate indeed. But, if my greatest achievement in life is counting the days between an egg and flight, who can fault me?

 

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.
 

Liminal spaces in Haunted Mansions

 Dom and I have been in a liminal space for quite some time now.
Liminal is defined as occupying a position at, or both sides of, a boundary or threshold, by the Oxford dictionary.

Warning: this will be a rather esoteric or existential musing. I can’t promise anything here but my rambling thoughts.

Liminal spaces are sometimes described as hallways. It’s the transition from one space to the next, but it’s not the destination. It’s just the space you occupy to reach the next room or space. It’s also the emotional space before transitioning. ***But what if your hallway feels never-ending?

We just watched The Haunted Mansion. I loved the ride at Disneyland as a child. I was terrified of scary movies and scary things, but the Haunted Mansion is set in a New Orleans style square and just outside the line for the mansion upbeat New Orleans jazz plays. I loved the cheerful music, and the well tended shade garden as we wound our way outside the grand mansion to get inside to the ride. The depictions of early 1800’s gracious living over ruled my juvenile fears of haunted houses.
But I digress. I’m thinking of a particular aspect of the tour punctuated in the movie. One of the main characters is running down the hall trying to get out and the hall just keeps expanding so he can't get out and then and there I am feeling it. The hallways in the mansion were ever expanding to keep the characters from getting to where they were going. They were stuck in a liminal space, if you will. 

In the Disney attraction, even before you see the endless hallway, you enter an anteroom that is really a sort of stretching elevator. The portraits hanging on the wall begin as innocuous paintings of innocent looking people and stretch into something ominous, revealing something sinister behind the innocent facade, all while a ghost voice ushers you through. When you exit this room and make your way down a never-ending hallway, the portraits here look like lovely people or pleasant scenes and transform into something garish and freaky when lightening strikes. Everything is not what it seems. And it’s all just a passage. Technically, at Disneyland, you’re still “in line” for the “ride”, but you’re actually also inside the attraction and experiencing the event. You're both in a liminal space and in the destination.

Beautiful lady

Is actually balancing on a tightrope. Hmmm...feels familiar.

 

Feels a lot like where we are now. We’re still in the liminal space of waiting for the next step, but we’re also in life. It’s here and now.

So I have to wonder if we’re really trapped in this haunted hallway of transition that should have been just a quick jaunt from one room to the next, or if we are actually on the ride already, and I’m mistaken that we’re stuck in a hallway that won’t end.

 

All I know is: this entertaining and enjoyable movie brought up a lot of feels for me.

Before cancer was one place. After transplant was the next. We thought we would transition through hospital stays to the great “back to life” of living at home and being recovered and moving forward with our careers and lives.
Only. The debilitating Gvhd. It stretched our threshold of transitioning.
And then Covid. Without a doubt, this new world of a highly transmissible airborne virus has ushered us firmly into what feels like a never ending hallway of waiting complete with spooky paintings and ghostly voices.
I feel like we both thought if we can just get past this, we’ll be free to move forward, but the threshold keeps moving. It feels like we’re endlessly running and the door is just out of reach.

If you look closely at the image below, you'll see the transformation. Sometimes, the impact of Dom's disease and Covid makes me feel like the final portrait, but being home, with our beloved things reminds me that it's just a ride and it's full of laughs.

 

So don’t get me wrong. Can you tell I love Disney? I do. One thing I’ve been really bummed about these past six years is not being able to introduce Dominic to Disneyland and to invite myself along when my special Cece went for the first time. When I got out of high school, I got a job at Disneyland. My cousin and I would go spend time in the land themed New Orleans Square, enjoying the ambiance. To be able to see myself in a Disney story should feel a little comforting. It's such a familiar place. It has brought me so many good memories. Only, I didn’t realize of all the Princess and Fantasy options, I’d relate to the Haunted Mansion. (To be honest though, I’ve also fallen down the Rabbit Hole and met Caterpillars and Mad Hatters.)

All that to say; it’s not bad to be in a liminal space. And I don’t feel horrible that life didn’t turn out as we planned. I do feel a bit under equipped. There’s “What to Expect When You’re Expecting.” You get a guidance counselor in college. I grew up in a church where potential life partners received marriage counseling before tying the knot. But, no one plans on cancer. Or disability. It just happens. We had just exited a liminal space before the cancer. We had just, finally, at advanced ages established ourselves into our career goals. We had exited the hallway and were in really grand rooms with people and prospects. I finally felt like a certified grown up. I've been regressing ever since.

The funny thing is, the Facebook algorithm lords noted my search of liminal and suggested for me an article in Architecture and Design. Seriously. All my chat about hallways and art and liminal spaces led me to a design magazine. So, I clicked on the article and came across words like nostalgia and kidcore and I’m shaking my head yah, yah, I get it. I am totally feeling this. I just bought an ornament that depicts a nursery rhyme reminding me of the children’s cutlery I used as a babe. Also, I bought a dollhouse to paint. I am totally feeling nostalgia and kidcore. I’ve embraced whimsey as my primary decor aesthetic. Embracing this has brought me a lot of joy. I am digging this article that seems to affirm my regression.

And then I got to the last paragraph. Mind you, this is after I’ve decided that Dom and I are currently stuck in a liminal space, and I'm actually embracing the life we're building in our hobbit hole.
But the critical thing is—though you are nostalgically drawn to these spaces, you cannot overstay your welcome. Spend a few minutes embracing this amniotic bliss—in the end you have to leave.

And now I feel like someone yanked me off my unicorn.

I have no idea how we’re going to outrun this hallway.
Dominic and I definitely move differently. We’re processing all that we’ve been through differently because we’ve experienced it differently. But we’re both experiencing the alienation of isolation. We’re grappling with what it means. And, we’re grappling with what the room will look like when we get out of the hallway.
We went out with friends recently for the first time since Covid happened. 3 years, and it was our first, and last outing. We met outside at a cafe for coffee. As we’re telling these lovely friends that it’s been so long since we’ve been in a social situation like this, we felt like babes in the woods, something funny happened. We’d ordered pastries and the cashier brought them out to us in little paper bags. We all reached in and started taking bites. Dom pulled his pastry out and put it in his mouth. A peculiar look crossed his face and he blurted out “babe” in that special way that holds so much meaning between couples. I looked at him fearful of what he’d discovered. Was it a hair? A bug? What caused this plaintive cry? His pastry was in plastic wrap. I still can’t even tell this story without laughing as I type because it is so nothing and everything at the same time. I fell into uncontrollable laughter. This man, who is still most definitely a man, who has endured so much and also relied on me for so much could only cry out to me when his pastry was in plastic wrap and it just stunned him into crying out to me for some explanation. We both laughed into hysterics at the absurdity of it all. And our friends looked at us a little bit like they may need to back away slowly.

And that is a lot how we feel in general. Nearly everyone has backed away slowly as we’ve devolved into hobbit like creatures who just want the comfort of home and a nice warm cup of tea.
And, we’re not entirely sad about it.
The world has gone mad. Well and truly bonkers. It feels a bit more “off with their heads” mad than Mad Hatter. (By the way, a friend just wrote a book of recipes inspired by Alice in Wonderland, and I will be having Alice inspired teas and parties outside. You should come.) 

But, as you can probably tell from my many allusions to the never-ending hallway, not much has changed here.
And in some ways, in a lot of ways, that’s okay.

Post script:

 The book is called Alice in Wonderland The Official Cookbook, published by Insight Editions

Just for funsies, my brother went to Disney's Haunted Mansion to capture some video for me. I'm not able to insert the videos, but here's a few more stills and his youtube channel. Hearing him laugh through the ride made me laugh out loud. It was good.

Livinlifeanimated

 

 

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.

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.