Roaring into the twenties

 

Photo credit Tibidabo Photography

Can you believe 2019 is almost over, and 2020 is around the corner? A century ago, this decade was roaring. It didn't end so well though. I hope we get it in reverse. We've had our depression of sorts. I hope there will be things to celebrate for us this next decade and that it will be roaring in new, exciting and positive ways.

I have a lot to say today. I hope I can articulate. It has been quite a year. And I see I have not written in months, so perhaps some catch up.

There have been some highlights to this year for sure. Dom's sister married an amazing (and lucky) man. We were so honored to be there, and never could have made it without his family. I am happy that Dom was well enough to make it, and the next chapter of gvhd didn't hit him until just after the wedding. 
We had friends show up with headlamps to survive the first of many power outages with us.
I was gifted a trip to Southern California to celebrate a big anniversary with my Dad's Aunt and her husband. I'm so happy for them, and it was a great time to see relatives I haven't seen in years. 
Then, some more power outages and another fire scare.
I had bags packed by the door for weeks, possibly months. 
I used the power outages as an excuse to just totally check out. I couldn't work without power. I wouldn't work outside if I couldn't shower. (We lose water with power loss.) So. I just sat inside and fretted. And Dom took lots of nice naps.
At the tail end of all that I was able (again through someone's generosity) to visit a good friend on the other side of America. I flew to Boston and chatted my friend's ear right off. She is my sunshine. I'm sure I was like a nervous chihuahua to her, but she loves me anyway.
There have been definite highs to this year. And, we are so grateful for everyone who has cheered us on this journey. And, as we're going into our fourth year of medical bills, we're eternally grateful for the financial gifts given, and think of you regularly. Honestly. Whenever I feel down for whatever reason, I remember that people saw this need and met it, and being seen is a top thing for me.

But.

I think people are afraid to ask, or to hear how Dom is really doing. I'm not sure. I think we all want him to be well. It struck me though, as I read a card from a distant relative expressing that they heard Dom was doing better. There didn't seem to be room for the ways he is not doing better. He is doing better. He can walk and he isn't in the hospital. That is better.

But, the truth is, he is no where near better.

The gvhd has been a much larger battle than the cancer. Once one thing seems better, something else crops up. Since July, he's been battling a debilitating attack on the lungs. His lung function is just 30% of what it should be. This means, he is unable to exert himself beyond walking little bits at a time. As I've mentioned before, we really should play the lottery, as he has hit the jackpot of every possible gvhd manifestation. These manifestations of the disease are not things he can have much control over. We're at the mercy of drugs and the photopheresis treatment. (After this long battle, we're also at the mercy of the government and voters.) It's a very vulnerable place. The weight on my shoulders is feeling pretty heavy just now, and I think it would feel a little lighter just to be....as I mentioned earlier....seen. It feels better to me acknowledge that this is really hard. This seems never ending. I think people want an end date to it. I think people don't know what to do with us. And it's important to me that while we all practice seeing the positive and being grateful for the improvements that occur with the same speed as a turtle walking through molasses, that people also understand that we are no where near normal right now. I'm being more honest than I've felt I can be. People have told me how strong and gracious I've been through this, and honestly, I feel like a fraud.

I've mostly had to sit with my thoughts and process them alone. Thankfully, I am married to someone who I feel most me with, and have been able to share even the darkest parts of my heart with. But he's too nice, and maybe I need a good shake!
Sometimes, I feel adrift as our circle shrinks due to our highly unusual circumstances. We don't fit in many molds right now. And as I look around, I know that very few people have it all. I've said prayers all day for a friend getting surgery to hopefully take care of some chronic pain. Another friend's child is embarking on his own journey with Leukemia just this week. Friends have been in and out of employment, waited for their home to be rebuilt from the fires, watched their children suffer ill health or poor choices, lost pets, lost parents, or have even lost heart. I realize there really isn't a mold. We're all just spread out in different ways. Some of us, sometimes, thinner than others. But in order to not lose heart myself, I'm being honest.

So what I'm trying to say is....I need some TLC. I need that extra mile. I need to be surprised by joy.

And with this confession; I will tell you the good news. 
Dominic has celebrated his second birthday with his new bone marrow. And the results of the bone biopsy are clear! He is two years cancer free! So as we enter this new decade, I am hoping that Dominic can take his two years cancer free, and his 99.8% donor cell status and be miraculously healed of this residual gvhd. And as we push through, even with my dark thoughts, I hope regardless of how swiftly or slowly his healing comes, that we can use this whole experience and one day be a light to others. 

Merry Christmas and Happy 2020 with much love from us~

Strength from weird places

It has been a very long time since I've blogged. Even longer, since I realize, the last blog post draft never made it out.

The days are running together and it's difficult to tell the same story over and over. But the last 2 months have been slightly more eventful. Both good and not so good.

I had a very unsettling thing happen the day before, some of you have already read about it. But, it somehow has calmed me down! Let me back up.

Dom got busy working and then had crash and burn. Some good friends that Dom has had since he moved to the states were out here in May and we were so happy to see them. It was a great weekend of visiting.
Then. Dom crawled into bed. Something wasn't right.
He was very discouraged as was I.
I had family coming, so I was buzzing around preparing for that.
The day my Aunt and Uncle were coming to our house, he came down with a migraine. Migraines absolutely take him out. I was so sad that he couldn't visit with them. He stayed home and we were able to meet with my brother, his wife and daughter who had just arrived from Utah.
Dom did make it to the coast one day, and that was the first time in two years. He still wasn't feeling too great, but I think the ocean was also soothing.
We were able to have visits at our house, as well as some quality time with my niece Cassie on our doctor visit/Sacramento day.

And after all of that. He's feeling better. We think the doctor visit made him feel better. He'd been so worried about his appetite and his liver and that the doctor would tell him that he couldn't go home after all.

Home. We're flying to England soon to celebrate his sister's upcoming nuptials. This has been the light at the end of a long tunnel. I've been so worried about the trip with him not feeling very well, not being stronger than he is, and with the terrible measles outbreak. I've been a wreck. (I have to repeat this because it always surprises someone. Dom has lost all his vaccinations. He has the immune system of a newborn.) This trip means so much to both of us, and it's a marker. It was so far away when he was discharged from the hospital. We'd have loads of time to get stronger, (and gain and lose weight respectively.) And the months have flown by, and neither of us are really where we wanted to be.

One of the things I have shared before that is gobbling up my time is mowing the weeds here at the ranch. I try and get at them every day I can. Now, some of you saw this story on my social media. The other night, after mowing, I came in super sweaty and filthy. I was wiping my face and itching my ear and I thought I accidentally poked my finger too far in my ear. I felt a sharp pain. Then, a few moments later, it sounded like that ear was under water. If I tugged on it, even more whooshing noise. If I pressed on it, it hurt. I had no idea what had happened but I erroneously suspected I'd ruptured my ear drum. I did probably the worst thing possible and fiddled with my ear. I looked in the mirror and there was no sign of anything in my ear. So I irrationally thought pressing it and sleeping on it would heal it. What I think I did is make the matter worse. You see, I had a foxtail in my ear. Every tug and press likely pushed it further in my ear.

But I did all the doctor google searches for what to do with a ruptured ear drum. Don't go under water. Oh gosh. What about a plane? Panic set it. What if I ruptured my ear drum and I couldn't fly? Or the pain would be so excruciating if I did? It hurt to swallow already. What was I going to do? I spent a restless night so sad and somewhat detached from myself. I woke through the night hoping I'd slept off whatever was the problem. No luck.

I woke the next morning, yesterday, and went back out to cut the weeds. It's already fire season, so I can't waste a morning. This time, I wore ear covers and put a cotton ball in my ear. Probably also making matters worse. I finished up, came in for a shower, and wore a shower cap, as I was still under the delusion I shouldn't get my ear wet. My hair was filthy, but I wanted to see a doctor before I got it wet.

I drove off to urgent care complete with work bag to sit in a waiting room full of people as Dom and I do every month. It was empty. The woman at the desk told me she had to ask if they could see me at urgent care, given my self-diagnosis. A young man came and asked me a few questions, went to speak to the doctor and she agreed to see me. Mind you, yesterday was just ten days after the two year anniversary of going to that very same urgent care and discovering Dom had cancer. (Had cancer, he no longer has cancer.)

First the nurse came in for vitals. Happy to learn I have excellent blood pressure even with a foxtail lodged in my ear. Then the doctor came in and poked in my ear and I almost hit the roof it hurt so much. She exclaimed there's something in there. I panicked is it a bug? Is there a live bug burrowing in my ear? The drama. Oh the drama. She told me it was a little bit of weed and the nurse would come in and wash it out. Cool.
So the nurse came in and tried. And tried. And trying meant shooting water straight at my ear drum and every spray was most uncomfortable. And that thing would not budge. She finally gave up and brought the doctor back. At this point I was a bundle of panic and ohmygosh how did Dom endure so much? The doctor had to use forceps and every time she poked around there was stabbing pain and my hands frantically searched for something to grip. (I'm going to say this doctor was not the gentlest.) After the tears were flowing she decided to numb my ear. Numb, shove. The underwater sounds are still going in between the mind numbing pain. She got it! Finally. Wait. There's another bit. By this time I'm yoga breathing and also trying to have an out of body experience.  After a half hour of battle with water and forceps, my ear no longer felt like it was under water. Sweet relief.

I was left alone for a few minutes and then a completely new nurse came in to give me after care instructions and she was so kind. She looked at my unaffected ear and told me it looked just fine. Well, that's good. But she did give me great advice and permission to be in a little pain. I realized I was having a bit of PTSD. From everything we've been through, this kind of made me realize, I'm not healed yet. I've just been in frenzy get all my ducks in a row for work, for family, for ranch, for trip and I haven't allowed myself to feel too much. I felt all the feels after that.

And then I pulled it together to grab some groceries. And a prescription for antibiotics. (Just in case. Which I hate. But I'm taking.)

I came home, put the groceries away and got on the couch, from which I did not get up until bed time. My Dom leapt at the chance to care take. He made me dinner. He made me tea. I messaged Sam to tell her all about what had happened because I just wanted her to know. I realized that I was beginning to feel an utter calm that everything was going, is going to be okay.

Incidentally, this is neither here nor there, but a friend remarked upon hearing I had a foxtail in my ear that she's only ever heard of that happening to dogs. The funny thing is, both she and I have hip dysplasia, which also only happens to dogs. I guess I am a dog?

And, this afternoon, as I was finishing installing a (jenky) drip irrigation for my garden so no one has to water it while I'm gone, I realized I have to share all this.
Because it's part of the story.
Because today, I feel even stronger. It's like the less than 24 hours that my ears were whooshing was enough time to really come face to face with how scared I am about this trip. And I made it. I made it through to the other side. And this other side is absolutely nothing compared to the other side that we keep hoping Dom gets to. He's made it to so many other sides, we've lost count.
I feel lighter now. Like all the worst case scenarios have been wiped clean and whooshed out.

And I am so excited about our trip. After two long years, to be with his family. To celebrate a wedding and life itself. We are so grateful that Dom's brother and sister and their partners have made this possible. We could never do this on our own right now. They've been so generous, as have so many. He just asked this morning if I'd like to go to London, and honestly, I really don't care. I don't need to see anything on this trip but a beautiful wedding, a sweet bride and loads of family. And thankfully, I will both see and hear them.

To plant a garden

We're entering the run up to the one year anniversary of Dom's onset of acute gvhd and subsequent two month hospital stay, weeks in Sacramento, and consecutive days driving to Sacramento. Which, as you know, followed a year of chemo, transplant and months away from home.

It's an interesting time for me. Two years ago at this time, we hadn't yet had our world crumble beneath our feet. We were coming into our own. We were both working, he picking up speed in commercial photography, and me finally confident enough to teach a yoga class without four hours of preparation before hand. We were exploring the way we wanted to do things, and just beginning to feel stable in our finances after our own separate setbacks. Life was beginning to look really good. With the exception of being childless, I'd say it was perfect.
It's odd to look back. There's not just a before and after but multi layers of befores and afters.
Last year about this time, I was adjusting to home. I was just beginning to feel like we'd soon return to normalcy. I was beginning to feel like I could breathe. I was also beginning to wonder what to do with myself. The weeds were cut, I was caught up at work. I was sending SOS emails to friends that I was ready and desperate to connect.
I was wondering what our four year anniversary would look like. On the one hand, we don't have big expectations of each other. On the other hand, we felt like we'd beat some odds and should celebrate.
But, our anniversary came, and Dom was ill in bed. I'd received an anniversary card from a relative, and just had to shove it aside. I couldn't process where we were or what was happening. I was going numb.
Days later, Dom would be fighting for his life in the hospital.
And so, just weeks before the one year anniversary of diagnosis we were back on the hamster wheel of the hospital. And it felt normal to not be autonomous but to be at the mercy of a disease most people don't understand, and under strict instructions for life. It felt normal to work from a hospital room. It felt normal to have people shuffling in and out of the room I made my bed in. It felt normal to make quick trips home to check in with kitties. It then felt normal to be back home making near daily trips to the doctor when we returned home late last summer.
Obviously, as the old saying goes, normal is just a setting on the washing machine.
There will never be a normal normal for us.
There will be days that we float through, allowing ourselves the space to just be and enjoy. There will be other days we uselessly fret and wonder.
There are days I'm beyond miserable and I forget the things I ought to remember. And there are days I escape through television. There are days I'm so immersed in work I don't have time to worry or fret or conversely to connect with my soul. Then there are days I just set it all aside and do whatever my heart desires. My heart desires to get lost in reading or to be in the garden or nesting in the house. My choice in reading material seems to be a reflection of our situation. I haven't been able to get into novels; I've only been able to digest essays. That's what our life feels like. Not one great story, but little essays.
I'm most drawn to informative pieces about the world we live in (read politics) and spiritual essays that point me in the direction I want to go.
And this quote keeps popping up: "To plant a garden is to believe in tomorrow." Audrey Hepburn.
For two years my garden has faltered in my absence. My neighbor, who of course is far more to me than neighbor, helped more than I could begin to repay; but it didn't flourish as it could have as it is my garden to tend to. My neighbor could help, but the true work is mine. The Bermuda grass took over the pumpkin patch. The cucumbers withered. The strawberries became a feast for rodents. The peonies did bloom before we went back to the hospital and I did savor with my eyes every blossom.

I'm in the thick of it right now. It's finally stopped raining and I've waist high weeds to battle. I've been out nearly every morning cutting back the weeds, and I'm back out in the evenings lately. Someone suggested we get goats, and I welcome goats if someone also wants to build fences and enclosures to keep them safe at night. We did just have a mountain lion, likely with babies eat a deer just beyond our back field. And I'm not complaining about the task either. I'm so beyond grateful to live where I do, it's all part of the package.

My mom offered to get me soil this year for the garden. One year, I hope to have fenced in boxes to keep all the critters out. But for now, I work with what I have. We went out on one of the hottest days in April and got a truck load of soil. (It was in the 90's F). I wasn't even thinking sunscreen as it had just been pouring down rain recently. First burn of the season under my belt.
My mom and I talked about how fearful I was to invest time and energy into the garden. As I shoveled a very large pile of dirt into varying boxes and containers, I was both excited and sad. Would I be able to look after the garden this year? Would I be able to tend to it and make it thrive?
I don't even know.
But to plant a garden is to plant hope.

This is what's left after filling all my containers! Lots of hope.

So, with each shovel full, I poured out my hopes. Not just for fresh tomatoes and cucumbers, not just for whimsical pumpkins to adorn my house in the Autumn, not just for strawberry juice to drip down my chin, but hopes for tomorrow. Hopes for today even. Hopes Dom to be strong and pain free, hopes for adventures together celebrating life, hopes for work to come, hopes for purpose in our lives beyond just paying bills and getting by, hopes for so many sweet things I couldn't yet begin to imagine.
The garden means far more to me than a way to bring fresh healthy food to the table.
And

A glimpse of tomorrow

A gift of daffodils at attention

as I cultivate the garden outside, I am reminded to cultivate the garden inside. I am reminded it needs attention. I am reminded it needs to be poured into and tended to. There are weeds to be pulled and branches to be pruned. It will be thirsty and need feeding.
The seeds of hope are planted. The watering can is at the ready. The days are full of hope and promise.
And I am ready to see what springs forth.

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.