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.