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 is here again!

Merry Christmas to you all!

I'm sitting here this Christmas morning, full of thoughts of gratefulness.
I'm thinking about our wonderful friends and family who have carried us this far. I'm also thinking of friends who are celebrating the kind of first Christmas you don't want to celebrate. The ones without a loved one.

Dominic and I went to our other family for dinner last night. Our other family is the one we're lucky enough to have in addition to the ones we were born into!

I volunteered to bring cookies. I figured I could put Dom to work again. I couldn't bring just one kind though. I had to make a couple. And some chocolate nut treats also. And then I had to bake a cake. I really wanted to bake a buche de Noel, but I chickened out and just made a gingerbread sheet cake cut in the shape of a tree. Complete with meringue mushrooms though. And as it was baking, I remarked to Dom that houses should smell of gingerbread at Christmas time.

As tray after tray of cookies and sweets were laid out, (the hostess had also made delicious cookies), someone commented on all the different things I brought and couldn't believe how many different things I'd made.  Here's the thing: Aside of the fact that my Grandmother whom I adore made several different cookies every year, I was home and I could! And I didn't realize what a big deal that was to me until last night I was washing up the last minute hustle of dishes I couldn't wash before we left for the party. I had a flash back of that dark little kitchen in Sacramento with the metal sink that made such a racket no matter how gently you set an item in the sink. I then could not for the life of me remember what we had for Christmas dinner. I remember it getting really hot once we started cooking. And we sat around the coffee table eating, in a daze in an unfamiliar place surrounded by Christmas cards we were so grateful to receive and a tinsel tree I'd snagged for fifty cents the Christmas before.

All those thoughts came tumbling out as I wiped down the counters and breathed a sigh of relief to be home. Last night's dinner was Dominic's first social outing as well. He managed the steps with the help of our family and it's another milestone for him. Perhaps the highlight for him was when one of the toddlers at the gathering just sat down next to him and looked up at him with her sweet face and watched a little cartoon with him.

I got up early this morning to let our neighbor's goats out. I walked to the end of the drive and in a big circle just to enjoy the cold quiet of the morning. The sun is out and the air is crisp. And we're home. And Dominic is cancer free and getting better every day.

Christmas has many layers of meaning for us. Celebrating being home also has many layers. And as we peel through all the layers together today, we send all our love to you and wish you the merriest of days.

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.

All the best people are:

Dom's new birthday is in one day! I should be writing a celebratory post about the fact that he has lived a whole year as a miracle. And I will?

But for now, I feel like speaking to the care-taker of a blood cancer/ bone marrow transplant patient.

Let's climb into the Wayback machine to returning home after the initial diagnosis and two and a half weeks in the hospital, which felt like too long, but would in fact be only a drop in the bucket.

There is this thing called neutropenic which is a state that anyone undergoing a white blood cell killing chemo will be in. It means they have no immune system. It means you dear Caretaker may be out of your mind wishing you could get your hands on a giant bubble like the one John Travolta lived in in the movie Bubble Boy.

It means you will go through all your knives in one day because once the butter knife touches the bread, if you need more butter, you'll have to get a new knife because crumbs can't contaminate the butter because mold may grow? I was out of my mind friends. Now I just let the cats lick the butter knives clean before I go back for more.

I'm not going to say relax Caretaker. But relax. It could be a long road and you'll need to pace yourself and your butter knives.

I bought stacks of towels to pat things dry with and immediately put in the laundry before they become mold infested colonies.
Hey. That's not a bad idea. Have you seen studies on towels? Ew.

You yourself may undergo some bodily changes Caretaker. That's okay. You may be faced with a dilemma of not wanting to eat because you're so upset, but then you almost faint because you're actually quite hungry and once you start eating, you can't stop. That's okay. If your partner finds they can't eat because of chemo or the dramatic changes in their body post transplant, you'll wish you could actually eat for two like a pregnant woman because, well, you are eating for two. That's okay Caretaker.

And while we're on the subject of moms and babies, you're going to be tired. So tired. Like you've never known. Or maybe you have, who am I to say? But take naps if you can. Take naps if you can't. Sleep is a friend like no other.

Speaking of friends, sometimes, you'll feel isolated. It will be lonely. If you, Caretaker, are married to the person you are care-taking, at times, you may feel like you've lost them. What is important is that you do not lose you. They are still there, they just may have to do a caterpillar thing for a while, but they will emerge. You must take care of you. You are emerging into something new too.

You'll feel isolated because it's a tightrope you'll walk between letting people know you have to exercise extreme caution to not get the patient sick, but also that you are dying inside looking at the same four walls and you neeeeeeed a friend to reach out and risk everything just to make you smile. You need someone to sacrifice a little bit to meet you where you are. I'm hanging from that tightrope myself friend, so I'm not sure how to advise you on this. But just know precious Caretaker, that some friends will absolutely amaze you in the way they show up. Focus on that.

You will get a lot of advice Caretaker. A lot of advice. Advice is the currency of help oftentimes. It is almost always well meaning, and so here is how you take it: take it as love in your bank. I urge you Caretaker, to not actually follow all the advice given. Lots of people read lots of information and sometimes the sources are dubious and sometimes anecdotal and sometimes it may sound good to just drink fruit smoothies to fight the cancer instead of undergoing gut wrenching chemo. Don't do that. Chemo is like the tongue. The same tongue that can kill a person can build a person up. Chemo allows your partner to be rebuilt. That's a good thing.

You will feel like you've been placed on a conveyor belt and you can't get off. You can't. You must buck up and try to adapt to the speed of the conveyor. Sometimes, you will feel like Lucy. That's okay. There's nothing wrong with a little chocolate on your face.

So hang in there dear Caretaker. There will be time to sort things out. Feel all the feels and accept the help and do actually eat the chocolate.

Rebuilding this house.

An overflow of flowers from a friend. 

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

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

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

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

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

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

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

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

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

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

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.

The low low down

 

We like this journey to Tahoe much better than the journey we are currently on.

This morning, we decided together that we'll put it out there, a more clear picture of how Dominic is doing. You couldn't support us more than you already have, we've been so blessed. And I hate to weigh other people down, especially with family being so far away and feeling a bit helpless. We've struggled to know how much to share and how much to hold back. But, this is where we are. And NOT where we're staying. 😉 We== W

The combination of steroids and pain has ravaged Dom's body. He has lost over 40 pounds since May. He has also lost mobility due to such extreme weight loss and fatigue as well as muscle wasting that is a side effect of the steroids. We left the hospital in a wheel chair that one of our friend nurses found and gave to us. I think someone left it behind as it was missing the foot rests. The day we left, an aide jerry rigged a blanket to hold his feet up. This is in part why my mother's help was so tremendous. Me learning to open and fold a wheel chair and help him out of the car, with a jerry rigged foot rest. Wow! What an adventure I never would have signed up for, but since we're here...I'm all in.

We were given the impression we'd be given a wheel chair when it became apparent he'd need one, and didn't find out until the day we left that insurance wouldn't cover it. I bought one on line that was delivered to our hotel yesterday. So. Now we have 2! The foot rests on the new one fits both chairs, so we can choose whichever is more appropriate. (Different wheels on each). He's talking about taking the big wheeled one outside so he can get an upper body work out.

He also left with a walker, so picture me looking a bit like Dick Van Dyke in Mary Poppins with his one man band set up. I'm totally channeling that chaos energy as we make our visits to the infusion center. (How I wish I had Mary Poppins' bottomless carpet bag. That would solve a lot of problems.) As it is, I pack a bag with all our electronics and things we can't leave in a hotel in addition to files from work. I also pack a bag of necessities for him. I've got bags poking out on all sides and I'm carrying his walker while pushing him in his chair. We bring his walker so he can choose to walk or ride. He usually manages a bit of walking, but it's important to have a fall back. I made quite the entrance to the infusion center this morning with the new foot rest that I promptly rammed into the door jam. Thankfully, no damage done to Dom....but....extra length of chair, noted. I also laugh when I'm embarrassed/shocked/overwhelmed/worried/all of the above. Lots of necks jerked as I nervously giggled my way through the waiting room, literally hearing Bert's flat two note horn punctuate my shame

.

This is how crazy this whole thing is....before I left the week before to go home and pack, he was being discharged with a cane and a walker just as a precaution. In just one week, he slid back so far as to necessitate the wheel chair and hotel stay. I can't decide if I feel like a frog in slowly heating water, or if I'm shocked from jumping into an ice cold lake. I'm both?

He's very low, as anyone would be who has been through what he has been through. And, of course, the World Cup is over, so I just don't know how to entertain him right now. I'm so glad we're out of the hospital though. I think the anticipation of leaving was giving him anxiety, and bringing him even lower. As I mentioned before, I was also fighting against the nurses compassionately letting him not get up and walk. The prospect of leaving was definitely scary for both of us, as we'd only have ourselves to rely on. He did have a moment in the hospital where he had to be helped up. He couldn't clear a step in the shower and crumbled. We won't have that kind of help in a hotel. I still felt totally ready to get him out of there. I just know that the true healing won't begin until we're home, but being out of the hospital is the first giant step. 

There are so many logistics to this situation, sometimes I feel like a dog chasing its tail. For a while, it felt like an option to choose between renting a hotel room or going all the way back home. But, over the course of his last week at the hospital, it became clear that he can't handle the daily commute and a hotel was no longer an option but a necessity. I remembered all the endless searching on airbnb from before and just went straight to a hotel search. (I've since searched airbnb and nothing will work just now.) I am being budget conscious as well as mindful of our needs. We landed at an Extended Stay as it has a kitchenette and I was able to get a room right by a wheel chair ramp. Again...the dog chasing its tail. Things happened fast here and I was making decisions somewhat on the fly. When I made the decision to book at Extended Stay, there was still a possibility that Dominic could walk to and from the car with his walker, just not step over curbs. And I did not yet have an inkling of actually owning a wheel chair. (Let alone two!) Now that we have the chair, it frees me up a little as to where we'll stay. I would have possibly chosen something a little nicer if I was not concerned about long hallways and if he could eat from restaurants. I'd fantasized about room service and a hot tub while he recovered. Coffee in a styrofoam cup is about as luxurious as it gets. No room service, not even housekeeping.

And we are not staying here! I'm so glad I only reserved for 5 days because it is gross! So gross! It was good to land somewhere anonymous. But we've found our way to navigate this new life now. I'm a little bit panicking over germs and have my bleach wipes out all day long. I had some other hotels lined up, but my friend Kim is opening her door to us, and we're moving on Monday. I'm so grateful. I'd been concerned about several things bringing a nearly invalid person into someone's home, but she persuaded us. It will definitely be challenging to show up to someone's home with wheel chairs and walkers etc...but she's already cooking up some broth. So, we're in. And she might be an angel.

I was concerned also that the stomach pain is not going away. It's better, but still hurts. I worried that the treatment wasn't working, but was reassured yesterday that it will take some time before he's feeling better. I mean, that's not a reassurance, I hate that he's in pain, but I don't need to panic over everything right now. It seems by other signs that the ATGAM worked.

It's going to be a looooong road back. Gvhd is no joke. No joke. It's like we're experiencing a whole new disease and prognosis. And it's been the worst part of the whole experience. I guess we got a little too saucy after the transplant and he was walking miles every day. 

But we'll get back to that. Little did he know when he married me that I am a task master and there's no fetal position when our future is on the line. We are going to face this newest challenge head on. I have to dig real deep on this one. When I ran out for groceries while my mom stayed with him, I couldn't think straight at all. I was beyond exhausted from lack of sleep and the whole deal. I knew I wanted to make coffee in the room, and there wasn't a coffee maker. I have our aeropress with me, so all we'd need is hot water. I was so hitting a wall that I couldn't think about just boiling water in the microwave. I also didn't realize the hotel would provide a coffee maker. (Ew?) My friend offered to loan a tea kettle, and though she lives literally minutes from the grocery store, I could not even go pick it up. I spent $10 on a really ugly tea kettle because I was just that tired. That's what things are like right now. I'm trying to manage everything and meet our needs and anticipate our needs and it's like a moving goal post. Any extra decision I have to make or logistics can send me over the deep end. And yet, I must make them. I know people will have extra helpings of grace for me just now.

And yes, continue to pray for me!!! I know he's the one who needs all the healing energy. But. The couple across the hall from us was telling their nurse, (loudly enough that I could easily hear) that the wife had been bitten by a brown recluse spider. He was in the hospital receiving treatment, and she woke up in a hospital five days later after passing out from the bite. I guess there's still a huge open wound on her leg. Yikes! What an ordeal. Trying to stay healthy here!

I am getting abs of steel from helping Dom in and out of the car. Seeing as how I have gained approximately what he has lost, I'm happy to feel those muscles again. He doesn't recognize himself right now. I do. I still see him. I can't wait to have him back in all his fullness. I miss him not being in survival mode. Soon, this will be a distant memory. Until then, I am his lifeline. I will eat the chocolate and get things done. (Because I am also doing quarterly taxes for work in the midst of all this.) I will help him with his shoes, until he can do it again himself. I will lovingly prepare the smoothie, even if he just can't drink it all. I will carry the bags and the walker and measure out his prescriptions and do whatever it takes to get him back in the real world again; to get him back in his body and to get us back home, and celebrating with you. 

I can do all things.
But I could never claim to do them alone.

Drowning. Also. No one listend to Cassandra.

I am drowning.
People remark how strong I am, but I know the secret truth.
I am not. I am like a rear view mirror. Objects in mirror may appear closer.
Objects in stress may appear stronger.

I cried as I walked through a market picking up some microwavable rice for Dom's discharge and life with a hotel microwave. The store, World Market, sells both food and housewares. I had $10 to spend in rewards, so I decided to pop over and use it or lose it. Everywhere I looked were signs of summer. Grilling supplies, outdoor umbrellas, chairs and pillows. It hit me hard that this is the second summer we will spend in the hospital, or in the infusion center. Dreaming of summer and cookouts and balmy nights got me through last year. I'm not sure I have it in me to dream anymore.

I'm salty right now.

Really salty.

Worn out.

I'm an empathic introvert. People don't think I'm an introvert because I make eye contact and smile and say hello and am able to engage in conversation. I'm able (most of the time) to meet people where they are. It doesn't mean it's easy. It just means I highly value being met where I am. I value kindness. I value people.

It's a mixed bag here. On the one hand, I enjoy the community of nurses. Seeing familiar faces is comforting. The energy is always different, every day, depending on who is working. It's fascinating to me how much I reflect back that energy. It's interesting watching how people work together. There are nurses I really enjoy on a personal level.

On the other hand, a parade of faces peer into our room at all hours. I try and look straight ahead when walking the halls. Try. But those windows are just begging to be peered through. And I realize that, having the personality I have, I take it all in. All of it. There's no down time. None. If I need to use the restroom, it often entails meeting someone in the hall. Sometimes it includes a knock on the door. Want coffee before talking to anyone? Not a chance.

It's not just the nurses who color our day. It's the aides as well. While we love everyone; we have our preferences. There's one woman who just can't not be in here. She looks at us through her glasses and scrunches up her nose and asks me if I'm sure I don't want her help too much. Dom and I laugh that she just must really want to bathe him....and I playact how she'll approach him to do this. I know. I can't be nice 100% of the time. I'm sharing this because I'm mean and spiteful and she crept into our room in the middle of the night and moved my hospital supplies by the sink, throwing things and taking things away that I have left there with intention.

I want to share funny stories, but they would be too crass perhaps. Too off color. You'd have to be as far deep in the rabbit hole as I am to even find them humorous, because an outsider would probably just be freaked out. Or scold me for one reason or another. The last thing in the world I need right now is someone policing my feelings. But that's what we seem to be wired to do. We feel the need to make everything okay, it feels better to feel like we've contributed by offering up another way to look at things. But trust me now. A person knee deep in this kind of situation has had the time to look in all the different directions. Some days I look in the right direction. Some days, I don't.

I find humor in so many places. I need all the humor I can find. But, to retell would mean throwing a nurse under the bus, or even Dominic. I guess I'm okay throwing a night aide under the bus.
I sensor myself on the blog a lot, and think maybe I need to write some private posts just to myself. I would probably swear. A lot.

I wish I felt more free to share, but again, my personality is to protect everyone. So, I won't tell you what I took a picture of last night. I'll just leave it at that.

I waffle in this in between land of wanting people to know just how very desperate this situation is, and not wanting people to know. Every time I think someone close to me has grasped what is going on, I may say basically the same thing in a slightly different way and then they're shocked. It doesn't irritate me, it reminds me that I have a unique view of what's going on, and it's my curse and my gift.

And speaking of that unique view.....I have written about this before....the name I was given...Cassandra. In Greek mythology, Cassandra told the people what would happen, but they wouldn't listen. I don't feel like you, dear blog reader are the people. Sometimes, I feel like the doctor is the people. From the start of this gvhd journey, I feel like I've expressed concerns, and it's taken too long to have them addressed. All along, I've tried to be a strong advocate, but sometimes, hindsight is 20/20. I've begged for help time and again because sometimes old information becomes new information and I need to start over and get the nurses on board with pain management. The nurses tell me I have to get him to walk, and I nag him to walk and the nurses come in and see him and tell him it's okay if he doesn't feel like he can walk. And I gnash my teeth and gouge my eyes out because this is not sustainable....

And so I eat chocolate. And some times, I'm really salty.
You didn't think I was perfect did you?

As one of the housekeeper's just said when I shared my opinion of a hard truth; thank you for keeping it real.

 Cassandra in front of the burning city of Troy at the peak of her insanity.

By Evelyn De Morgan - Flickr, Public Domain, https://commons.wikimedia.org/w/index.php?curid=65892

4

Here and There or There and Back Again

It feels like I've been writing the same chapter, and I am really antsy to move on to the next chapter. We started to live it, and then got knocked into some other odd and unanticipated place.

I lie.

We knew going into all of this that there were very real possibilities of complications in this. But, we chose to not factor them in. Because who wants to plan on bad things happening? Who wants to plan their life around the possibility of bad things happening? We just spoke positively throughout, and hoped we could buck statistics. But, that nine out of ten match caught up and no matter how positive we were and are, there's realities that move on a different plain than the power of positive thinking.

I have no idea at this juncture how much longer his stay in the hospital will be. It could be weeks yet. It even could stretch to months. There's really no telling in this situation. The thing is, he's being cared for and, given our experience at home, he's happily here until it's time to go home. There's no looking at the time and pushing to go home. And in that regard, he's been so strong.

We've treated this stay a little differently. I've gone home periodically, because this is more a marathon rather than a sprint than any other time. I can't bring myself to share all the lows we've experienced. Suffice to say, we've scraped the bottom, and then gone a little lower. He and I are on the same page that I need to nestle in at home on occasion just to regroup and gird myself up for the next battle. Flexibility is key, as I've already shared the story of evacuation, and there's been times I've been home less than 24 hours because things have come up, and I just need to be by his side.

That said, home is such a beautiful respite for me. I miss him terribly and sleep on his side of the bed. I look forward to the day he can sleep there again. But I also see the gift of being home.

Home is a bit of a blur. I want to do everything at once and sometimes do nothing at all.

I've kind of fallen into a rhythm where I get all the dirty work done right away. I started mowing some more tall weeds that sprung up at 7 am on Saturday morning. I continue to cut branches up to at least 3 feet off the ground, if not higher for fire safety. Raking is a never-ending task, and I actually had an urge to rake which was stronger than my urge to chat with my mom. If you know anything about my mom, you should know she is a saint at being on the phone with me endlessly. For me to cut a conversation short because I've picked up a rake means I may be compulsive. I just want to get as much done outside as I possibly can, and then clean up and putter a little.

I've managed to keep my garden going this summer. You would laugh at my MacGyvered sprinkler system. I've scrounged up hoses that have seen better days, and I've lined up the holes to hit random plants. I hand watered everything before this situation. This year, I have a cherry tomato that survived through the winter and is bearing again now. I have an early girl bowed low with tomatoes that I can't wait to try. I have another cherry tomato plant in a large container that I kind of haphazardly placed somewhere meaning to move it to a better place. I never moved it because I think it was a happy accident. It's massive and loaded with green tomatoes that I hope will ripen up perfectly. The pumpkin patch is full of mystery squash and the lettuce has shot up. I ate a salad of lettuce and cherry tomatoes from the garden last week, and it was gratifying.

I have a patch in my back yard for my hoarding tendencies. If I think there may be a spark of life, I can't get rid of it. Dominic used to work for a company that would give away or raffle off plants that had been used as props. A great deal of my plants are from that exciting time. He brought home some tired Easter Lilies 2 years ago, and I just turned them out of the pots onto a patch of ground. *I did not even dig a hole and bury them.* Sometimes, I just want to see how badly a plant wants to live.  I enjoyed one bloom in the house over the weekend, and there are several more to follow. They really wanted to live.
If those Easter lilies dumped on the ground and largely ignored can bloom, I am sure Dominic, lavished with love and careful medical attention will bloom with even more beauty and tenacity.

In some ways, it's been an incredibly lonely time. In other ways, I've had people meet me right where I am so unexpectedly. I realized the the other day, I tend to cry on the phone, and then not in person. It was odd to me, that whenever a particular friend called to check on me, I'd break down, but when I get to visit with her, no tears. I think, and I'm not sure, because this whole experience is crazy, but I think that my time with people face to face is so precious to me that I fill it talking about things that matter deeply to me. It feeds me to talk about the great mysteries of life. It also feeds me to hear about what my friends are up to, how they're doing and what challenges they may face.

I so very much appreciate my friends that have reached out to me. Here's some more heart on sleeve raw honesty....I sometimes wonder what kind of a person I am that some people have so easily walked away from me. Over analytical people like me are prone to those kinds of thoughts. There are people I thought would be more present. There are people I thought would actively reach out to me and move heaven and earth to come sit with me. To physically sit with me and just be. There are people I thought would at least check in once in a while given similar circumstances. And if I'm really tired, these thoughts get me down.

But! Even as worn out as I am, I am looking on the bright side. The bright side is, a friendship has been restored that has carried me so far through this. I'm sure people are afraid to reach out to me, but when she called me after a particularly difficult update, she waited a day because she didn't want to bother me being sure my phone must have been ringing off the hook. It hadn't been. And I am so very grateful to this friend for being so sensitive to my needs both perceived and real. She's been able to meet me in my spiritual quest for answers, and some of the best advice was the same advice given to her 10 year old son also. Sometimes, there is beauty in suffering. I am seeking and finding the beauty.

I am so grateful for the friends who have rolled with my waves. The childhood friends who heard me say I need attention, and showed up. With chocolate. The ones I know will hold me up. I am so grateful for the cousin who calls me regularly and is more like a sister. The private messages checking in on me, giving me the space to bare my soul or just go to sleep. I'm so grateful for the nurse who has seen me as more than a caregiver, but as a person worthy of getting to know, and the wonderful conversations we've had along the way. She's been such a bright spot in a difficult time.

I mentioned above, it feeds me to talk about the mysteries of life. I've been thinking about a Nouwen quote I shared on social media. He talks about how it can be hard for people to be present for another if they can't do anything anyway. I realize what Dom and I are experiencing just seems like an abyss no one knows how to even approach. Coupled with our previous need for a bit of isolation for safety precautions, it has left people hard-pressed to know how to be present for us outside of facebook. If this brings any freedom, know this: There is nothing you can do. And, don't get me wrong, many people have done amazing things. We've been generously donated to since work has been impossible, we've been given the gift of house sitting by our neighbor, we've had fields mowed and treats given. We've been given a lot. But not one of those things take away the need for medical intervention. Not one of you has the power to physically heal him. And, I hope you can find freedom in the fact that the only thing you may have to give is yourself. You needn't change anything. You needn't have the magical answers. You needn't even worry about saying the wrong thing. Presence is everything. Real presence. The ones I know I can PM and I will shortly receive an engaging response from; that is an eternal gift to me. All of your encouragements, every heart and note of love gives me the strength I need to make it another day.

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.