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!

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.

 It's been 4 years!

I opened the blog, and it's been so long since I've been able to write, the interface is different! I opened the blog to my last unpublished post exclaiming now I can write. Apparently, I could not.

I've thought of y'all these quiet months of recovery and a worldwide pandemic. I've wondered how you're doing with the changes and the ebbs and flows.

It's difficult to believe that just 4 years ago, we were advancing in careers we'd both trained tirelessly for, the fires hadn't hit our hometown with a vengeance and become all consuming, and we were wondering if we'd one day have children, even if through fostering.

I had to stop writing because our story just didn't seem fancy anymore, this thing we're experiencing. I felt like a broken record. The grief was beginning to well up in me and any flowery or funny thing I could say was being usurped by this is hard. This is unspeakably hard. But dangit, if Dom and I are not the Energizer Bunny, I don't know anything anymore.

We have now been a couple in sickness longer than in health as we celebrated our seven year anniversary. And I want to tell you the raw bits, but I'm afraid you'll run away, because it's no longer entertaining. The numbers have all merged together and we've stopped the trail of one to pick up another and I've lost many of you on the trail; many of you are still on White Count and we're on alkaloids and proteins. 

So do I share the nice first, or the raw bits? I could tell you that right after I typed this sentence a coyote started barking in the field. I thought it was the neighbor's dogs until I really looked out the window. The dogs wander alone, and we've inherited chickens, so I needed to make this canine most unwelcome. Is my grief a canine? Seems so funny I'm typing away about rawness and am visited by a barking coyote.

When we got the news that Dom had Leukemia, I charted a course. He'd have one month in the hospital and then we'd be on the road to recovery. Then the news came that he had the kind of cancer that would need many rounds of chemo. So I charted that course. I knew lots of people who did their rounds of chemo and then there's a light at the end of the tunnel. Then I found out that between rounds of chemo, there would be infusions and many 4 hours round trips between rounds of chemo. So I lost it a little bit, I mean charted a course. Then I found out he'd need a bone marrow transplant. And we'd have to move to Sacramento for a few months. So I charted a course. Everything was new and shiny and we were held up and supported by so many people. I was surrounded by medical staff. People brought me coffee and sandwiches. My rig was equipped.

Somewhere between the bone marrow transplant and today, I'm not sure where, I lost my mojo. I'm not sure if it was him wasting away in the hospital having one of the worst and deadliest cases of gvhd or the insurance snafu that required a minimum of thirty frustrating hours on the phone between Christmas and my birthday in March of 2020. Maybe it was the long recovery that is not going as planned. Or perhaps it was the pandemic right on the heels of pneumonia. Needless to say, I feel like the Christmas paper crumpled and shoved in a trash bag. My usefulness served, and now I'm creased and tape has ripped away the ink. The paper is in the bag for a reason, and sometimes I feel that's where my words belong too.

I was feeling incredibly lonely. People I reached out to and was so looking forward to seeing flaked on me with an apology which rang so hollow after all I'd been through. Dom was losing his mojo too. I think it's a miracle he got to attend his sister's wedding. He had just under a year to build strength to walk and put some weight back on his emaciated frame. While in some ways it was a triumph to get him back home to be with his family, in other ways it bled me dry. I was so afraid he'd get sick while overseas. Your pandemic fears were/are my every day fears.

Upon our return, it was clear he'd turned another bad corner. So here's the nitty gritty. He has one of the worst cases of gvhd. (Graft vs host disease.) The new immune system continues to see Dom's own body as enemy cells that need to be eradicated. He struggles to breath as his lungs are attacked. He struggles to keep his eyes open and moist. He can't feel it, but his kidneys are being attacked. You guys. We had one week. One week between his liver being the thing we were keeping an eye on to his kidneys being the thing. He's been on the immune suppressant that most BMT patients are weaned off of in the first year in addition to massive steroids. This is not sustainable. I am not sure how to chart this course. We go every week, the four hour round trip to receive a treatment that takes 3 hours. Sometimes more. We go to a local eye doctor twice a month where he has had plugs placed in his tear ducts and more. The treatment for his eyes may yet be out of reach. Sometimes he also needs an infusion to boost his immune system which takes another 3 hours. He is a human pin cushion. He gets a needle in both arms, sometimes his hand. One needle is so large, he must keep that arm still. Blood is taken out, the white cells are spun out, zapped with UV light, and sent back into his body. No one can explain how this works, but somehow, it does? Some mornings, as my alarm goes off at 5, I question its efficacy.

But we jump through the hoops.

Two of the group of five who had transplants the same week have lost their fight against the cancer. We've lost track of the others. The doctor has confidence that with his immune system being such a fighter, the cancer will not come back. The silver lining in this is Dominic is still here.

Dom is in much better spirits than I am. He's so grateful to be alive. We're both so grateful for the support we received. We'd never have made it without so much generosity. Some of you really were the difference between eating or not. That's to say, we haven't gone hungry and we have a roof over our heads. Life is good. And more than Dom, I sometimes struggle to see that. I realized sometime after his lungs started failing that we would never go back to normal. While people have been clamoring to open up during this pandemic and fighting because they were asked to wear a mask, I've been processing how to move forward as both caretaker and bread winner. (I am not a bread winner. I could not even make a single sourdough this whole pandemic. This is not me.)

Dom is having to find himself again. He wants to work, but it's not in the cards right now. Especially with the pandemic. The vaccines did not pose a risk for Dom, but in all likelihood, his medication prevented the efficacy of the vaccine. So, we continue to live with great caution. We're so fortunate to live where we do. It's beautiful. It's secluded. And, it's allowed Dom to putter in a way that allows him to rest when he needs to. He built some fairy houses, and if anyone local needs a fairy house, let him know. We've convinced our Cece that fairies came in the night and built houses here and there. We sent the fairies to her house as well. Only the fairies can open the doors and windows we tell her. We believe in Santa round these parts. Life is too harsh to not weave stories of whimsy from time to time.

 

He rebuilt a rock wall at the entrance to the property. It's all just slow and steady. Friends loaned him an electric bike which allows him to test his strength and get around when his lungs can't get him the breath he needs to get up the hills here. There's much to do here always. Trees to cut back, weeds to mow, walls to paint. He said it's like the Golden Gate Bridge. Once you get to the end, you have to go back to the beginning. It's never done. I sometimes get overwhelmed but he keeps plugging along. 

So that's where we are! While others perfected the art of baking sourdough, or scrambled for childcare in this last year, we've just hammered on. We've been stunned as people who have offered encouragement have themselves succumbed to the frailty of life. I hesitate to share too much. (Was this too much?), but am happy to share more details of my own spiritual journey privately. I dreamed of one day having a party with all those who have been so supportive of us in this journey. Now, I just dream that you all know how very special you are to us, and how grateful we are to know you and that you are well and content.

 

Feeling like Pavlov's Dog

As I've shared already, I did something I'm proud of this past week. I gave blood. I've wanted to for many years, but I always let fear hold me back. Not fear of the needle, though I don't like them, rather fear of finding out I'm anemic and my blood isn't good enough.Once I saw bag after bag of blood being gifted to Dominic in the hospital, I knew I'd have to become the boss of my fears and get poked.
I also knew caring for Dominic has been all consuming, and I told myself not to worry until I felt comfortable in his recovery and our progress.

There was no check off list. Nothing like when we watched his white count and knew when he could stop wearing a mask. I didn't have any concrete dates in mind. Like a lot of our more recent milestones for me, they've been more gut driven. An ironic turn of phrase given Dominic's plight.

But the day came where I felt like I had something to give. No bells or whistles. Just, it's time. Kind of like when I went back to yoga. It was just time. I definitely walk in the world more intuitively than with any sort of concrete calendar plan.

What I hadn't anticipated was how much our experience is imprinted on me, how much our experiences are like a bell going off in my head.
When I walked into the donor center, I had the usual experience of being in a new place, doing a new thing. I'm one of those people that takes in everything in a room. But there was a little dissonance in my taking in.
For the past nearly two years, when I entered a room with people in hospital reclining chairs with tubes going into their arms and machines making noise, I was in a room of illness. The woman I checked in with was describing the different donations: blood, platelets and so on. She waved her arm toward a row of people reclining with hospital blankets and whirring machines. I felt like an intruder. I felt like my wellness was an insult. Like I should walk softly and speak quietly.
The realization that I had projected our infusion center experience on to this experience was a little unsettling. It took me too long to realize. I think it also took me too long to decide to donate blood. The young bubbly woman next to me made me realize all was well in this room, and that I wished I'd began donating decades ago. But it's never too late, and I will continue to give of myself in this way.

And speaking of the infusion center, we were just there today and we're headed back in another week. Dom needs another infusion of immunoglobulin. (Part of the blood/immune system). All the other numbers look good.
This was our first doctor visit in a month. It's the longest break we've had since this whole saga began 20 months ago. If it weren't for the need of Igg, we'd get another month off. But needs must.

We went back to the 4th floor after our visit with the doctor.
The 4th floor is the Bone Marrow Transplant Unit in the hospital.

Dominic has not been eager to revisit the place of so much pain. He also has not been eager to return until he's back to 100%.
But our friend, who had a transplant the same week as Dominic, has been readmitted. Her cancer came back.
She sent us a text.
We had to go and see her, to tell her we love her and support her.
We had to face her.
Because our biggest fear has happened to her, our friend.

And when she told us how happy she was to see us, how just to know we'd trek to her and say hello when there is nothing else we can do for her, I knew what she meant. I knew just the feeling of being seen and being loved.

And I'm so proud of Dominic for conquering his own fear. For facing the hallways that housed him in his lowest time. I'm so proud of him for owning that cane and realizing though he's not making a triumphant entrance walking easily with his original shock of hair, he's leaps and bounds ahead of the guy who was wheeled out and barely able to sit up. The triumph is in his strength to face this place again, for love of a friend. And I'm so proud of him for facing the fear that our friend now embodies.

Life is strange. We want to remain positive. We want to trust better days are ahead.
We know that picking up the worry is like picking up leaches that would suck the life out of us. We know it's toxic. We are living in the tension of knowing our fears may be realized, but what a waste of life worrying.
We learn to put it down. Again and again.
We learn not to be Pavlovian in our experience. We learn not to associate things in ways that will cause us pain or worry or fretting. We learn that worry doesn't add anything, but it can often diminish.
We're learning to see through different lenses daily. We're learning, and relearning, and learning again how to live with peace and joy. We're learning that everything in life is both meaningless and meaningful. We're choosing to focus on the meaningful. We're learning that a bell doesn't always mean what we think it means. We are learning to tailor our reactions, that we can at the very least choose, and choose love.

The Winds of Change?

The wind was howling last night. I'd fallen asleep early, like any good stodgy 40 something year old should do on New Year's Eve. The air always feels different to me on this once a year day. Though I resist the notion that the day is any different than the other 364, resistance alone says this day is different.  I don't make resolutions. I don't come up with a word. I don't know why not. I just don't.
Well. I do know why not. Because life happens in ways we cannot predict. I know now better than ever that any resolution I made on the eve of 2017 or 2018 would be miniscule in the face of the resolve I would have to muster to just exist.
I was grumpy last night. Out of sorts. I'm struggling to transition from Red Alert to hopeful.
The wind howled.
I'd put some of Christmas away yesterday, and it sat in bins on the back porch just outside the bedroom. I wondered if I'd snapped the lids, or if three generations of ornaments and ephemera would be flying through the field behind our house.
I'd remarked earlier how we'd spent last New Year's Eve in the apartment beneath elephants wearing cement shoes. We thought we were safe as we nestled asleep by ten. Only to be awakened when the bars closed and the elephants came home and trumpeted through the night and almost up until our doctor's appointment at 8 am.
I thought this year would be different. On so many levels.
But the wind howled.
Someone suggested yesterday, as I closed the year with an afternoon yoga class, that we not spend our last hours of 2018 pressing early into 2019, but that we look back over the year and acknowledge our accomplishments.
I survived?

I listed my accomplishments over dinner, but they came out more as frantic arm waving.
How does one quantify the accomplishment of spending the greater part of two years in a hell not of one's own making? And surviving.

I'm so shortsighted as a person though.
There just didn't seem to be enough time in December. I had it planned one way, and then some things came up and I spent a great deal of time doing things I did not expect to be doing. You'd think after 18 months being on the crazy roller coaster schedule we have been on that I'd roll with it. But, I spent most of December feeling a frenzy. Feeling like I couldn't do it all. Feeling defeated. When will I learn that life is all the days before and all the days after that one moment? I would tease people when they'd ask how are you in the thick of our crisis. "Living the dream," I'd say, Dominic in a hospital bed and me heartbroken for him. It was a sarcastic stab at humor. But it was more than that. It was truth. He and I had had many happy moments before, and will have many to come. Things may be difficult, our struggle may be extra, but we're not limited to living in the worst of those difficult moments. Tomorrow is here.

A friend gave me daffodil bulbs.  The first flowers of spring, I heard. They are my birthday flower. When I see the daffodil, I know both that spring is coming, and that I am older. But the daffodil is magic. I don't feel older. It doesn't bring with it the baggage of aging that humans have built an industry around resisting. It simply affirms to me that I exist. It speaks to me that there is beauty. There is spring. There is hope.
Wikipedia says the narcissus has conspicuous flowers.
If I must be conspicuous in anything, I should hope I could be as affirming and magical as a flower.

I'm sitting with my back pressed against the wall heater. Dominic is still sleeping, still mending. We're both on bridges right now. He's coming back to life. What has he accomplished in 2018? Basically, a life time.  He reverted to a sort of infancy in the ravages of the disease and has fought his way back to standing on his own. It takes newborns several years to accomplish what he has in 5 months. He has walked down our little hill to the car and back to the house and uses only a cane in the house now. He's very hopeful for the year. He's eager to work and travel.

I'm not there yet.

Aside of the fact that I'm a home body, we were away from home nearly 6 months just this year, the idea of making plans, of being out and about scares me. I need stability to seep into my bones a little more. My accomplishment for 2019 will be steeping in goodness. There. I've blogged my way into an intention for the new year.

But how?

2019 came in like a lion. I lay awake wondering if the venerable oak trees book-ending our house would topple in on us. The wind howled and I could hear things crashing and banging outside. One thing that banged a lot is one of those curtain screens with magnets to hold it together. The magnets rhythmically hit the wall and I think one of the first things I will do in 2019 is get rid of it. I'd left it there through other storms thinking it would be of service in the summer. Perhaps I will get rid of it, and something better will appear at the right time. It will be the first of many things I will let go of to make room for what is to come.

I will continue to be grateful for all we've been given and all the love we've felt.


A friend suggested last night's winds are the winds of change.
I hope so.
I hope they have thoroughly cleared out anything that is keeping me from letting goodness seep into my bones. They have shown me I must make way for the new. Though the winds howled all night and stole my sleep, they left the gift of hope.

I am hopeful for us all this new year. Hopeful we will all find goodness to seep into our bones. Hopeful we will all make space for something better. Hopeful I can be part of the goodness in my own life and yours.

Happy new year to all far and wide.

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.

No news is good news.....

Dreaming of trifle, we'll get here again soon.

We've been home for almost two weeks now.

It's such an odd feeling as I process all the different times I've shared we're home. And what it means to be home. Overall, we're glad we made the decision to come home, and heal and get stronger. Even if the doctor asked us to stay in Sacramento a little longer yesterday. I think he's very out of touch with the emotional healing process. Science can only get you so far.....then there's healing emotionally and spiritually.


I have one less blog reader today. I just want to take a moment and share that. The mother of a very dear friend, who I know followed along with our journey has transitioned on her own. She was a wonderful woman who touched so many lives, including my own. She will be greatly missed, but never forgotten, and not gone from us.

********

Though Dominic's numbers are looking good, he is still quite underweight and weak, I think that's why the doctor wants him nearby. And I'm not 100% convinced the Cyclosporine is on track. Yesterday, the number was too high. Of course they had to call and ask if we were taking as directed. Thankfully, the doctor was in a much better mood than the last time he was out of town. The last time he was so cranky a big black cloud of smoke followed him out of the hospital room. This time, he was chatty and something Dom said reminded him of a movie, which he then quoted and we laughed at just how unprofessional he was in his choice of dialogue....And after he went over all the numbers and made ready to leave, I asked about the biopsy. You know, the one where he pokes knitting needle into Dom's back....and Dom is pain for weeks. And though I know in my heart the Leukemia is gone, I still want it confirmed... He was confused and asked if we needed to set up an appointment for one. No, I reminded him he'd done it before his vacation, and we'd been waiting for results. Oh. Well. He didn't have the results with him, but, no sign of Leukemia. I guess he also was so confident that would be the case, it just wasn't top priority to tell us. (He was confident the day he performed the biopsy and mentioned it was only routine.) So, we take each thing in stride. And press on.

This past week was difficult in other ways. And I am a little mad at myself for not just relaxing into the bumps. I should know by now that we always get through. We do. Even if through is excruciating, even if it means loss, we get through. And we are never alone. Ever.

Dominic looked at me this morning and asked in a knowing way if he's getting his sparkle back. He knows he's getting it back. He actually held conversation with me on the way to Sacramento yesterday. That's kind of a first in a long, very long time. It's taken all his energy to just be for a while now. Yes, he is definitely getting his sparkle back.

We were still scheduled every day this week, as the doctor had not said otherwise, and not been in town to say otherwise. We'd get a day off by the office nurse texting him Dom's numbers and getting approval. We couldn't get a day off Thursday as we were scheduled to meet the doctor that day, so, we only had Tuesday off this week, and now today. Monday, about a half an hour from our return home, I smelled something at first like paint thinner. My first thought was that Dominic was suddenly very ill. Only for a moment. But then, it smelled like fuel. Strongly of fuel. I'd been remarking that I felt like our little mini was a little hungrier than usual for gas/petrol when we got her back after our weeks of borrowing a larger car and after our amazing friend Craig gave her some new brakes. The next half hour, she indeed was so hungry, she ate about an hour's worth of gas in 5 minutes, and I white knuckled it all the way home. We rolled the windows down in 90+ degree weather and made it home.
Can I just make a public service announcement here? I am not a willy nilly person. At all. When I make an observation, it's usually one based on as much observation as possible. Dominic suggested when I first observed we were going through more fuel than usual that perhaps we were using more AC. I reminded him that I'd done the drive all last summer and though we used the other car for 2 weeks, I could still remember how far we could go on a tank of gas. Sometimes, I can get pedantic. But my superpower is observation.
But back to the more mundane. We had a gas leak. I lamented how difficult my life is. I moaned. Even though we have a back up car. Even though we're not stranded. Even though this day of the gas leak, we actually made a half hour detour to pick something up for a friend...and that detour may have saved us from discovering said gas leak a half hour driving IN to Sacramento, rather than arriving home.
Craig came the next night and looked under the hood/bonnet. The leak was easily spotted and much less dramatic than I anticipated.
The next day, Dom and I drove to Sacramento in the other car and made our plan. We called a couple mechanics from our little cubby in the Infusion Center. We lined up a tow truck. We arrived home, settled in. Tow truck driver was a peach. It's usually quite difficult getting people out here, there was a possibility he'd be so late I'd have to follow to the mechanic on the other side of town. But, he met me, glanced at my card, loaded up the car and was on his way. Easy peasy.
And I reflected on how all of the ease of this is possible because we are so cared for and taken care of by so many people.  And felt a fool for moaning.
After all that, I set Dominic up with everything he could possibly need, and nipped out to another dear friend Barbara's who had made Dominic a very special chicken dish that I could just pop in the oven. It was so gratifying to come home and see him devour chicken and rice. And then homemade plum jam on toast for desert. Not only did this friend nourish Dom, but she met my heart right where it needed to be met and I felt so much more normal after visiting with her.
There will always be setbacks in life. Even when we think we've had all the setbacks we can tolerate. I thought I reached the end of my tolerance even before I met Dominic. Was I in for a surprise! But, with all the setbacks, kindness abounds. 
We are ever so grateful, as this will be a much longer road than we bargained for. Dominic makes baby steps. And we celebrate every one: A walk down a long hall way, eating an entire meal, his body making his own Platelets and Hemoglobin and White Blood Cells. Every day, he feels a little stronger and better.
To go through such a thing as we are going through is no easy thing. He relies on me for his every need. Every need. And I rely on him to see past my weariness and grumpiness and lettingmyselfgoness. Just getting us both out of the house is a massive feat. But, when I see that sparkle coming back, the hope in my heart grows stronger. And. He and I are finally able to dream again.

Boot straps

I have a funny little observation.
It's about the two posts I shared at the same time. One was sweet, one was salty.
I can see how many times the posts have been clicked, and ya'll should know: you prefer salty.

The next post was difficult to write, I'm sure difficult to read and definitely difficult to live! I've been working on this post, for over a week now, as a sort of antidote.

So, I'm going to dream a little today. Dominic is getting hours worth of infusions, he's comfortably bundled in a bed, and peering over his shoulder, I see he's looking at football stats. (Soccer for all of us Yanks.) That's a wonderfully encouraging thing to see.

A friend of ours is in Finland right now. (Well, was...I began writing a week ago!) It reminds me that something on my bucket list is to see the Northern Lights. Dominic dreamed of taking me to Paris all through the last year, and I wouldn't say no. But my heart leans toward the celestial just now. Or toward nature. Mountains and stars. The universe is vast and beautiful and bigger than this thing we're fighting right now.

You know I have boot straps. And you know I'm not afraid to use them. Again and again. Some days are hard. Lately very hard. But I can't live there!

So I'm working on picking up where we left off. Dominic and I looked at photos the other day. We talked about who he is, and how who he is today is not who he is. This is just an aberration for now. The nurse this morning got a little teary eyed as she remarked he is still just the sweetest man, even as he endures more than most will ever in their life have to. That speaks volumes.

I remind myself that this too shall pass. Not quickly enough, but just as nothing gold can stay, nothing this grueling can stay either.

But just because I haven't lost my sense of humor, I have to laugh. When we arrived this morning, the nurse said, "I hope you don't have any plans today." She must be joking...surely she must be joking! Our plans for the next several, several days are to get Dominic strong again. This is not a vacation. (Though I'm still dreaming of room service!)

And for all you salty folk, I need people to stop being so helpful. Just stop already! Does that make me the worst person ever?
Our first trip into the infusion center without Mom's help, I was just getting the hang of wheelchair, walker, bags etc...he and I negotiate between the two, because walking is ideal.  He'd just transferred into the chair, and it I felt kind of chaotic. So this helpful guy wants to hold the elevator for us, and I'm trying to get in with bags and an open walker and the wheel chair and I know I should have just waved him on while I pulled it together. But he insisted and I stepped in and found I couldn't move or fold up the walker because he stood right on top of me verbally giving me helpful tips about backing into elevators etc...So helpful. Maybe next time, just move?

And the nurses. God bless the nurses. How do they think Dom gets to and from his appointments? Because every day, they're full of nervous energy about whether the brakes are on (the brakes they are immovably standing in front of), or if I'm lifting with my legs, or if Dom can actually stand up. (He can). What would I ever do without them? There is constantly someone so worried I can't manage that they are just.in.my.way.

And the kids in valet parking. I'm so exhausted, my gracious plate is running low! They stand at the driver door waiting for me to get in and buckle up, and meanwhile, I'm unloading bags and folding chairs and walkers and I just need a moment. I don't need someone who means well staring at me. And I really don't need someone standing right at Dom's door staring at us. I told a guy the other day who was just hovering uselessly and I had just had bad news and he was breathing down my neck, I told him I just need to be, and I don't know, I drew an aura around me or something. Lots of hand gestures were involved because I really needed a moment. He shuffled away. I felt like a crabby old lemon, but I'm so tired. I don't need someone handing me things that I'm perfectly capable of picking up when I am ready, but that I just need to set down 3 inches over because I'm not ready for that thing yet. I don't want that right now. Do you not see me actually doing what I need to do? Is it not obvious I left the trunk open because I am not done yet? Can you not see I got this? I got this. I feel like a server with a tray full of dishes and glasses and some well meaning person puts a glass on to "help out" but the server has to gracefully hold that heavy tray and not drop it even though the careful balance has been broken.

I got this. Barely. But I got it. I'm going to keep on keeping on until there's no more chairs or walkers or appointments or drugs. Just Dom and I hopping in the car to actually drive somewhere fun.
Meanwhile, don't stop helping us with your love and encouragement. We can always do with the cheer team.  And there's a lot of big things I don't have. I'm grateful for the big things. And really, I am grateful for the small things too.

And speaking of the big and small....We  are being sneaky! We went home last night! Kim is an amazing friend, and her home is so very peaceful. She and I would sit in her back yard and even in the extreme heat, it was just so comfortable. And the plants in her yard were so soothing to me. Such a great soft landing.

But, there's no place like home. I could unpack our bags, and stop hauling the beanie and leather gloves that somehow made it to the hospital in the middle of summer. I could sort through the piles of things I had for all the different living situations. I didn't need plastic storage containers or paper plates at Kim's, but I didn't want to leave piles of things in the car. Now it's all sorted and at home!

Home. Our neighbor/most amazing friend found someone who opened their garage full of items we would need, including a ramp for our entry. We hope this time on wheels is short, but it is our current reality. She wheeled around the house in our big wheel chair and did an incredible job making sure the re-entry would be smooth. It was. Dom fell almost right into bed. And I ran down to the garden and picked some ripe tomatoes!

The cats curled right up against Dom's legs and the weather was perfect. Dom said to me on the way in this morning that home feels really healing. It is. That was my plan all along.

There was a package containing many different chocolates shipped from a dear friend waiting there for me. The chocolates included words of encouragement and love, and offers of support that I know are truly meant.
My Grandma would always say I can do all things through Him who strengthens me. (She was a powerhouse, that woman. She did do amazing things.) Sometimes, I think I can do all things through chocolate.
But the reality is, I am held up by so many. So much encouragement, support, prayers, visioning, love, practical gifts and service. I can do all things. I cannot do them alone.

Sometimes, I may want someone to get out of my way, but really, we are ever so grateful for all of those who have stood with us on this way.

Just when I thought I couldn't go further down the rabbit hole....

I believe it's known by now that this blog is mostly my own cathartic place to share our experience. In the back of my mind I also hope this can someday be an encouragement to others going through a similar experience.
Today will not be that day.

Here is the view from my new recliner/bed:

Don't be jealous.

I was having a difficult time deciding if I should go home tonight or tomorrow morning. There's a high fire danger advisory and after having fire come practically to our front porch last year, I'm a little freaked out. I like to be home on these really hot days so I can be on red alert. It gives me the illusion of control.

But Dominic asked me to stay. And so I stayed.

I haven't showered in two days because I thought I'd be driving home this evening. Then, when he asked me to stay, I decided I'd go downstairs for some dinner, grab a shower and tuck into bed for an early night.

Then.

Thant was not to be.

Chaos.

The fire alarm went off. But for real. They have drills all the time, but this time it meant business. Even though there wasn't a fire, the alarm was screaming, all the doors were shut and the sprinklers went on in the room across the hall. I tried to mind my own business as I heard the nurses screaming "Oh my god!" "How did that happen?" "Here's the eyewash, quick, bring him over here." But as I saw more and more employees gathering outside our door, I had to peek.

They were grabbing blanket upon blanket to staunch the ankle deep flood of water from the room. They did a good job too, because it didn't reach our room. The turquoise and white blankets were piled literally to the knees.

Nevertheless, we had to be evacuated. They told us we could go in the family room around the corner. So, we went and sat. And sat. And sat. Dominic has barely been able to sit up for the past month, and he sat. People would check in on us. People would ask if we needed anything. A room with a bed maybe? I cannot imagine if I had gone home. Who would sit with Dominic?

Someone told me they made him a fresh dinner. since the first had just been served minutes before evacuation. But he couldn't eat yet. Too shocked I think.
After sitting for nearly 3 hours, I finally convinced him to eat a frozen meal I had in the family room. I'm so glad he did, because by the time we got to a room, that promised second meal was also taken away. They would have brought him food but.....things were pretty dicey by this time. (I'm sure the nurses would move the moon for us if they could, but there were just too many unknowns. Some of the dayshift nurses stayed until we settled in a room which brought their day to 15 or 16 hours.)

We were alone in the family room. A Russian couple were with us in the beginning, but they were taken to a waiting room somewhere else. The rest of the patients got to stay in their room with doors closed while all this was going on. Just my precious Dom plopped on a couch. He and I are very close, but I can't even tell you what was going through his mind sitting there wrapped in a blanket.

We were informed the whole unit would have to be emptied for cleaning and testing. They would be distributing us into the ICU. Also known as germ central. The rooms had to each be sanitized by the little robot I wrote about before. The little germ killer. That was time consuming. There was a lot of confusion. Shift change was happening, and nurses were trying to nurse and figure out what to do with 16 or so patients.

Here's the thing. I had to get all assertive again. I do not like rocking the boat. Dom hates rocking the boat. But what I don't like even more is watching my guy stare into space because he's usually catching his first chunk of sleep by 9:00 at night, and instead, he's got a blanket around his shoulders and he's sitting up till who knows when. So when they tell me they're taking the patients in waves and Dom's in the third wave I freaked out a little. "So you're telling me that the patients who have been in their rooms, in their beds this whole time are being transferred before Dom, whose been sitting for the longest he has sat in weeks?" This is what they were trying to tell me, but I was not having it. I don't want special treatment. But come on. You've got one patient not waiting in his bed. Take that patient first.

I also had to fight with the nurse from the new unit about getting our stuff. She asked if there was anything we needed urgently, and they'd pack up the rest for us and bring it over. Um. No. I've got it, I said. But it needs to be cleaned she said. Cleaned? No. I will get my stuff thankyouverymuch. My favorite nurse and I just couldn't figure out what the deal was. It was if she thought our room was the one with the sprinklers? So, I marched back to the room and grabbed all our stuff. It's that illusion of control thing again. This day/month/year has been such a mind bender that carrying my own stuff from one unit to the other was my security blanket of control. And that's that.

They finally decided it's Dom's wave and they wheeled him through winding hallways and into a huge room with giant sliding glass doors and I'm going to be super morbid here, a huge digital clock with red lit numerals directly over the head of the bed, and it's the clock every doctor looks at in every doctor television show to pronounce the time of death. Ew. I'm not happy here. A plane is getting ready to take off, also known as a HEPA filter on full blast. We have to yell at each other to be heard.

There's no lav. (I stand corrected. After writing this, the nurse took care of some business and rolled open a cupboard to reveal a dinky little toilet. It had every appearance of being an airplane toilet, including a giant push button flush. It's all tucked away behind a curtain. Not a green curtain. This is certainly not Oz.) No shower either. It's a huge room, but it's crowded with arms coming down from the ceiling with wires and monitors and such. As huge as the room is, we found ourselves shimmying around as we did whatever needed to be done for Dominic.
And.
There's no cot or couch. No bed for me.

After hours of waiting in the cold family room, exhausted, there's no bed. (I know, I know...I've been spoiled that they've had a bed for me at all....)

And.
Rule number 2: No sleeper chairs or cots in the rooms.
I already broke rule number 1: No eating in the rooms.
Once Dominic was settled in his new bed and slipping into sleep town, I went downstairs for dinner. At the fashionable hour of 10:30. I brought back my box of salad, plopped it on his bedside table and began eating...only to have him wake up and point to the sign. Oh well. If ever there was a time to be a rebel.

We have our favorite nurse, without whom, I swear I'd be having a major meltdown. We love her. She loves us. I can be snarky with her and it's all good. We just laugh. I think she appreciates the irony of me staying the night because as it turns out, Dom needed me more than we even realized tonight especially, and yet the circumstances are not so conducive to having a caretaker. There is no way I would be okay with him sitting in the family room for 3 hours alone. No way. I really needed to be here tonight. And, on a less important note, I needed to be here to pack up his clothes and drinks and accumulated belongings from his unexpected weeks upon weeks stay. In every way I was meant to stay here tonight of all nights.

And there is no bed for me.

But, our favorite nurse is a rebel too, I guess, because she at least managed to smuggle in a reclining chair and some linens.

So, here we are. It's morning now. I watched the sunrise from my recliner. I think I got two hours of sleep. For all the drama, Dom is actually chipper. He's got World Cup playing and he was able to sleep between blood pressure takings and what not. He's so fragile right now, this could have gone either way....but he's such the guy. The nurse is astonished he's still smiling and laughing.
Word is, he's being moved back to the unit today. It cannot be too soon, as ICU makes me so nervous. Seeing Mersa signs on doors....is there Mersa in that room? Or are they just testing? I don't know. I've felt so safe over in our BMT bubble.

I'm really just probably quietly hysterical right now. It is astonishing that I have had to "evacuate" twice throughout this process. Once I thought our home was going to burn down, and we had to find a place to live for a week. And now, though it's not nearly as dramatic, I'm definitely going to need some chocolate.

I'm definitely looking forward to quiet days at home with my guy feeling much better. Until then, maniacal laughter at how absurd these days have been.