Finding Grace

Not better, just different

2026-03-23T17:01:00.000-07:00

It’s not quite any anniversary or milestone; but I’ve felt the writing bug coming on. There’s lots to share, but lots we can’t yet share.

Earlier this month, someone well intentioned asked if Dom is better. It’s been playing in my mind ever since. Dominic is not getting better. I don’t think people want to hear it. We certainly don’t want to hear it. But it seems to be the plain truth right now.

I think it’s an easy assumption to make. He’s had all this treatment, of course he should be getting better, right?

He was getting better until May of 2018. That was just 5 months after the transplant; and almost a year after the cancer diagnosis. From the transplant in November 2017 until the following May, he was walking and getting stronger and stronger. But if you’ll remember, he had the acute graft vs host disease that nearly took his life. Yes. He’s better since then. He gained back half of the weight he’d lost. He can walk again. He is better since that terrible summer.

But, he’s not getting better. The chronic graft vs host is something we live with.

Our last visit to Dr. Kiwan was very sobering. He pulled up information on his computer screen and showed us how very little there is by way of treatment for Dom’s condition. (I say condition, gvhd, as if it’s singular, but it is actually multiple battles on multiple fronts.) The treatment he’d been receiving for many years, that I wondered if it was actually effective, is now no longer included in the roster of treatments. We’ve pretty much exhausted all modern science has to offer.

Nevertheless, we are collecting doctors and practitioners like beads on a string. When I log into his medical account, where he once had an oncologist and a family doctor, he now has a team of upwards of a dozen people who are all working together to improve the quality of Dom’s life. Isn’t that something? I tear up just thinking about how many caretakers he has, and they’ve all been very kind and compassionate.

The latest treatment he’s been receiving, the monoclonal antibodies, does seem to be working for his kidneys. That is good. However, the treatment causes a loss of appetite, so he takes more pills to help with that. I’m happy to see his lab work coming more normal.

The worst bit right now is how damaged his lungs have become. The treatment for that currently in the 4 options Dr. Kiwan showed us is a lung transplant. Gasp. We’re not even close to that.

I think in the shuffle with changing doctors and protocols, the severity of his lung issue got sort of overlooked because his kidneys were so concerning. But, a wet winter dialed up the volume. Let me digress a minute here. We’ve been blessed to live in a home on a beautiful piece of land that has been an oasis through all of this.

The problem is, this home was never meant to be a home. Just as I discovered some real acute mold problems in the siding, and had set my mind to having some major work done on the house; the owner decided he wasn’t sure if he was going to sell or not. It’s put me in a bit of a rock and hard place, because I’m not investing thousands of dollars into a property that is not mine, if I may have to leave at any moment. This is not me asking for advice about the mold. Resist!

All of that was to say, it’s been rough for Dom. Thankfully, the heat wave this past week has brought him some relief there.

But, we did add a pulmonologist to the string of beads, and had a very productive consultation yesterday. It was our fourth medical appointment in one week. We have two more next week. There’s a new treatment plan for his breathing that I have fingers crossed will give him some real relief. More tests may alter or add to the course, but we feel relieved there is movement there.

I’m going to overshare now. Okay? Are you ready? I had to deal with a lot of really gross bodily functions throughout Dom’s illness. I’ve had to catch things and dump things and clean things, and carry jugs of things, and hoo boy. It is not for the faint of heart. But I could do it. No problem.

But there is one function I cannot tolerate. I’ll give you a hint. I can’t really watch baseball. We have to bring a sample to the lab. Please pray for me that I am not in the house while he produces this sample, and that he puts it in a paper bag so I don’t have to see said sample? Thank you.

The doctor wants to rule out a fungal or viral infection in his lungs, so that’s that.

Now. Back to our home. Our beloved little cottage on the edge of a State Park. The property was put on the market officially. It’s been a lot for me to process. I’ve lived here for 30 years. I’ve lived here longer than any of the family members have lived here. I got married here. I’ve said good bye to over half a dozen pets here. I’ve had pumpkin patches in no less than 4 spots. I’ve had parties and celebrations with countless friends here. This place has my heart.

It also has 30 years worth of maybe I’ll need that one day.

Holy moly.

The problem is, there’s been so many times I reached into my Mary Poppins bag/house and did have some obscure thing I or someone else needed. It’s been positive reinforcement for hoarding.

I just took a full load in my wagon to Forgotten Felines and Habitat for Humanity. I have five sizes of clothes up in here, and it’s time for some reckoning. All my spare time is being spent sorting and cleaning and prepping. It’s good. I love this sort of thing. But, it’s also a lot of work. The combination of ADHD and not tossing anything in the land fill if I can help it makes for a never ending list of to dos.

We do have a plan. That’s the part I’m not at liberty just yet to share. But we do have a plan. It will be a big change. It will have its challenges and it will have some real silver linings. I cannot wait to share the silver linings.

Lots of change afoot for sure.

And, since I wrote this draft on Saturday; we’ve been to appointment #5. Dominic will be getting oxygen to help him out. The plan for this appointment was to have him walk the halls until he needed oxygen to gauge how soon he’d be short of breath just walking. Um. He was already well below healthy levels just getting to the appointment. The therapist was very sympathetic to his plight.

Having an oxygen pack will help him not just to breathe, but to think and have energy.

He’ll need that energy for what lies ahead!

And, since I’m being evasive about what our plan is, I will say, England is not currently in the plan. We’d love to be closer to his family, but his sister and her husband are not even currently in the UK.

I wrote before on this blog about liminal spaces. I feel even more there than before. The house could sell next week, or not at all. I’m doing all I can to pivot. I don’t want to live wading through moving boxes; but I certainly can afford to part with a few things.

Dom is parting with his 84 Toyota. It was a dream of his to fix it up and turn it into bio-diesel or some such. With the house on the market, we decided to let it go. Many people had asked to be notified if we were ever to sell it. The contractor who repaired the big house last year was one, and so we gave him a shout. He rolled up in a cherry red Toyota, so we know it’s in good hands. A dream deferred for us is an opportunity for him, and for the Toyota. It’s good. He’s a good man, and we’re happy.

Not to be outdone, (wink)

I’m sending a jewelry box I have had since I was 10, so for a really, really long time to a friend’s daughter. I remember going to the Cotton Candy Pink Sanrio/Hello Kitty store in the mall and agonizing over where I would spend my dimes. I wanted to eat my way through the Japanese confections and play with the stickers and toys in a sugar haze.

For my tenth birthday, I asked for a Little Twin Stars jewelry box.

I loved that little plastic jewelry box so much, I always imagined I’d pass it on to a daughter. (I have my Grandma’s Lane miniature cedar chest jewelry box). I saw my friend’s daughter in a little pink t-shirt with pink Sanrio characters and knew immediately she should have the box.

I’m sure sending off that little box will put a large dent in belongings. (eyeroll)

But seriously, it’s so nice to reflect on good memories, and anticipate new memories to be made.

We have a lot to look forward to, and I can’t wait to share what is around the corner. I'll miss this pony Pip next door, but who knows what new friends we'll make!?

Until then, we're enjoying every minute.

Hope you are all well and know you are loved.

The Bronze Age

2025-11-27T09:56:00.000-08:00

As families in the U.S. gather to celebrate Thanksgiving today, I'm reflecting on the 8 year anniversary (tomorrow), of Dom's transplant. Or, his re-birthday, as it were.

And we are so thankful.

Eight years ago, we spent our Thanksgiving with hospital staff, as Dom was being prepped for the life-saving and life-altering event of someone else's stem cells being dripped into his veins.

Bronze is the traditional gift of 8 years of marriage. It is stronger than both iron and copper, the gifts of the two previous years. (How I wish I'd asked for copper cookware on our 7th anniversary!). So, on this 8 year anniversary for Dom with his new stem cells, I wish him the strength of bronze; stronger than the 2 years prior put together.

It's been an eventful year medically.

In May, we heard rumor his doctor who had been with him through the entire 8 year journey was set to retire. Indeed, in June, we had our last visit. It was a sad farewell. He expressed to us that we felt like family. In truth, we did see more of him than our own families, (with the exception of my dear mom.) We always had a lovely visit and a good laugh when we saw him every 2-3 weeks.

His departure coincided with the approval of a new drug treatment for gvhd. So, the new doctor was eager for a whole new protocol. Our first visit was a flurry of questions and information. Dr. Kiwan is from Lebanon and retains a lovely accent. Which, combined with the tenor of his voice and the amount of information he presents kind of left us like

He asked how far away various hospitals were, and the answer was always, the traffic would kill us. He'd inherited most of Dr. Carrol's patients, and was probably doing a little house cleaning. He also understood it's been a very long haul for us. He discussed the new treatment option and we agreed to a new plan. The irony is, the new treatment was actually something tried for Covid patients; monoclonal antibodies. It did not work for Covid, but we're hopeful it will work for Dominic. (The irony being, Covid has changed our lives almost as much as the initial cancer.)

We've been in a flurry since June. Dr Kiwan connected us with a local Nephrologist to oversee Dom's kidney function. The gvhd has been pummeling the kidneys. Then he set us up with a local oncologist who oversees the new treatment. Did I mention it's local? Did I mention that?! IT'S LOCAL! After 8 plus years of driving to Sacramento at least once a month, if not twice or more; (that's almost 4 hours round trip), we are just down the road. We get a 3 month hiatus from Sacramento. Dr. Kiwan has deftly handled the situation.

Dom has 3 treatments under his belt. We met with a nurse beforehand who talked us through the whole process, which is yet another infusion. Dominic did have infusions through Dr. Carroll earlier in the year, so we sort of knew our way around. The whole process takes about 3 hours. He feels fine after, but by the third day, he feels like he has the flu. This is common. With that knowledge, we planned for an early Thanksgiving, as today marks flu day; and right on target, he did wake up under the weather.

And, not to be outdone by Dom, this year also marks the year that I got serious about my own health. I will spare you the details, but I have never had to juggle so many appointments in my life. I've had my own minor surgeries and dread. I'm okay today, but there were questions and what-ifs along the way. We had one more minor surgery in our household. We've had a second dumped cat appear. I think I've shared about him in my last post. Unlike Houdini, this cat is a bit more feral. I spent several months befriending him. And then I betrayed him. I've had him neutered, just in case someone dumps a female cat down the road. I may have damaged our relationship forever; but, I felt like it was the right thing to do.

There's also been a lot going on where we live. The property is in flux, and we're trying to go with the flow.

But, speaking of the property; we are so blessed to live here. People measure success in different ways. I am not successful by most people's standards. But, yesterday, I walked down the driveway and noticed the polo ponies being rounded up on the property semi adjacent. I stood there and watched all the beautiful horses line up and thought how lucky I am to be surrounded by such beauty.

We watched a beautifully spotted bobcat skulk across the back field yesterday. The fields are turning green again I rescue newts from the pool after a big rain.

The very large house next to us sits empty, in limbo as I stuff my wee home to the gills with nostalgia and comfort. Some would only see clutter and dust; but my people see the heart; the two people bumbling along tougher in unusual circumstances making it work the best way they know how. Thankful today and every day.

Milestones

2025-06-15T11:21:00.000-07:00

It's time for the biannual update!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Are we there yet?

2024-12-10T08:23:00.005-08:00

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

But Phoenix rise from ashes, not boarded up windows.

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

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

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

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

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

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

It Was Seven Years On Saturday

2024-06-18T08:49:00.000-07:00

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

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

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

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

We've been working hard and resting hard.

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

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

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

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

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

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

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

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

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

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

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

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

Alexander moves to Australia (or Iceland)

2024-05-20T10:01:00.000-07:00

Having always been enthralled with Alexander and the Terrible, Horrible, No Good, Very Bad Day, I like to laugh at the absurdity of bad days. Or weeks. Or years. Because, if you know the book, there's always Australia (or Iceland). 😉
*Please, only read this with a sense of humor* No sad faces please.
Wednesday was our 10th anniversary. Yes! 10 years. 7 of which have been dealing with disease, doctors, hospitalizations, and finally, the dreaded Covid. We're waiting for our prize.
We've been squirreled away. Limited contact with the outside world. We're a little feral.
We got very excited about a restaurant getting rave reviews for its gluten free pizza. Dom had just lamented ever having a good pizza again given his restrictions. Then I heard about this place. It has an expansive patio, and we thought we'd risk it for lunch. And if it was too risky, we'd have a picnic nearby. (Dom is still high rick for Covid and Measles as well.)
I packed our cooler with drinks to be prepared.
I pulled out a summer dress I'd bought at Christmas and had tucked away for warm days. I was so excited to have an occasion to wear not just a dress but the dress I'd pined for, for some time before nabbing it in an outrageous sale.
I slipped it over my head and noticed as it shimmied over my shoulders, a giant hole in the back.
A brand new dress kept in a protective bag. Damaged.
I'm a sensitive sort, and it was difficult to not feel a lot of it's not fair. Life is hard. Why me. Over a dress. But wait.
We hopped in the car, sun shining, smiling, anticipating our first date in 7 years. No really.
And then, the car died at a full stop. Huh. I must have stalled it. (Proud driver of a manual here.) Only. It happened again at the next stop. And again. And so, we turned home,
The next day we'd have to be in Sacramento for Dom's treatment. We didn't have time to take the car to a repair shop. Dom did a little research. Went with best case scenario. Fiddled with the oil dipstick, heard a pop, drove up and down the drive with no problem. We decided he'd fixed the problem. Anyone who thinks we're negative nellies does not know the amount of positive thinking we exert on the regular. But our denial/positive thinking got us to Glen Ellen before I ruefully turned the car back toward home.
Mom raced from her house 40 minutes away at the ready and we made it to the appointment just an hour and a half late. Because here's why we didn't cancel our appointment: Dom is their favorite. There was a training happening and they always juggle Dom in on those days because he is so easy going and has the best veins. It's a thing.
And here's why I don't want any sad faces. I got to spend time with my mom and in Ikea. We had cinnamon rolls. (Nicky's are a billion times better, but when in Rome.)
We were an hour and a half late, but only half an hour later than usual headed back home. Neat how time works.

We got home to no internet. Someone accidentally cut it. I had a bit of work to catch up on, but had to postpone. I was so frazzled by Friday. I got up early and fed the chickens. A task Dom is usually happy to do. I wandered down to the fish pond/tank after feeding, as it always makes my heart happy. (This is an old photo being enamored with the fish.) On this morning, it did not make my heart happy. The barn is being painted and having minor repairs. Woodpeckers have been tucking acorns in the roof. Someone scraped the acorns out only to fall into the pond. The tannins would leach out and kill the goldfish. I immediately began fishing out acorns and detritus, bailing out water and giving it a spring clean. And we laughed, because what else am I supposed to do without the internet?!
I was feeling real sorry for myself Wednesday, as we were supposed to be celebrating our anniversary.
But by Friday, having run back and forth between house and barn cleaning the tank, fixing the internet, (we currently have 100 feet of cable running across the drive connecting me to you), I didn't have the energy to feel much of anything but grateful for the tub of ice cream in the freezer and the husband I would still say yes to, even knowing what we'd be in for.
The dress is being exchanged.
We have the $ to repair the car. (Rats are chewing through wires. Ugh. Country living!)
We made it to the doctor.
The internet is (mostly) running.
I'll get more goldfish.
We'll get to that restaurant.
*Dom is still with me.*
The traditional 10 year anniversary gift is tin or aluminum symbolizing resiliency. Maybe I'll start calling Dom my tin man. Only, he does have a heart. And that my friends is what it's all about.

This photo was captioned: Sometimes when you're on your knees pulling weeds near sunset and you look up.

Liminal spaces in Haunted Mansions

2023-10-12T13:27:00.014-07:00

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

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

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

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

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


Beautiful lady


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

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

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

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

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

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

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

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

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

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

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

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

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

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

Post script:

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

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

Livinlifeanimated

Two Thirds

2023-06-14T19:15:00.000-07:00

It's that time of year again.

I get more pensive. Maybe tear up a little more easily. I count blessings and I count sheep.

Dom and I were married on a May 15 and we went to the ER on a June 15, so each wedding anniversary anticipates a less celebratory anniversary. It was 9 years this past May and 6 years this past June. A full 2/3 of our married life has been spent navigating a path we didn't mean to take. I may have packed my life differently had I known this is the path we'd be on. But life, like a wildfire doesn't always give you time to pack. Sometimes you just run. I think I'm still running. And I am un-apologetically oh so tired.

When we were essentially living at the hospital, I watched a favorite show on repeat. I would fall asleep to Father Brown and sometimes a nurse would just ever so quietly close my laptop. I really appreciated the nurses who would get in my business that way. As I was anticipating this anniversary I was also anticipating a new season of this show that is now intrinsically tied to our journey. The show is loosely based on novels by GK Chesterton. He's a crime solving Father. I love crime shows because they have tidy endings. I particularly love Father B, as Dom calls him, because he shows so much compassion throughout his interactions. And of course, the setting in the Cotswolds is cozy and comforting. We started the new season last night and I am delighted. I'm even slightly nostalgic for the camaraderie of all the nurses and how well we cocooned in our room and were cared for.

I get particularly nostalgic at this time for all the goodness shown to us and think of all of you who decided to hop on the path with us as far as you could. There are stories of generosity that just resonate with me and give me hope beyond the immediate provision.

Here's the Christmas card part of the annual update. Nothing much has changed since our last update!

Dom continues his photo-pheresis treatment every other week. It's about a 3 hour process intended to reset his immune system. His system is still in chaos. His kidneys have been attacked for nearly 3 years now and he's been on steroids all that time. That's not good for the body. And Dom and I will both tell you, high doses of steroids can be very challenging for an already stressed married couple. If we're honest. But we keep chipping away at our egos and resolve all steroid infused trials with lots of love. In addition to the 3 hour treatment, he occasionally needs another infusion of IGG since his body currently struggles to make it. Those days can stretch to 14 hours with a doctor visit in between and with driving.

When we're not being road warriors to and from the hospital, we putter. I mean, work. It's never ending on the property. It was a very wet winter. Water, water everywhere, but not a drop for me. We lost power over a dozen times over the past year, and as many of you know, that means no running water as well because well, we're on a well. And speaking of the well, the holding tank and pump also had to be replaced to really sharpen my bucket carrying skills. Half a dozen trees came down over the year. We were quite fortunate when the large oak came down across the driveway, our friend was here and between the three of us, we were able to make the drive passable for the other tenants. That's pretty much the way things are around here. We fumble along and things work out.

The reason I can't get my ducks in a row is because they are chickens.

We've become chicken shepherds. Our girls have a nice house and run, but we like them to have more space to have dust baths and roam. We'll give them some free time and watch over them because we have some very persistent bobcats in the neighborhood. It's also a great time in the afternoon to just enjoy being outside. (Who am I kidding, Dom is the better shepherd.) One bonus to having the chickens, outside of their beautiful Easter eggs, is the bakery around the corner from where we purchase their food. It has many gluten free offerings, so we will make an event of picking up chick food. And for people who are buried in limitation, digging out even just for a pastry is an awesome thing.

It's continued to be a pretty isolating time for us. While the world has moved on from Covid, we continue precautions, because we just don't need another battle here. As an over-thinker, I grapple with being understood. Covid and all the drama it has conjured both real and imagined is definitely another layer of the onion for a girl who grew up loathing onions. (To be fair, I grew up pretty poor eating liver and onions my mother made trying to get some healthy food in me and I'm sure I'm scarred for life. If you enjoy liver and onions, I will put my finger in my ears and sing la la la if you try to tell me.)

My memory on social media last week, from six years ago, was that I was subbing at a yoga studio where I was offered a job to teach regularly just that week. That was definitely a bittersweet memory. I've had a complicated relationship with yoga since then, and since the Covid outbreak. It was my long sought after career. I continue to wonder what I will be when I grow up.

Which brings me to another regular thought. What do we have to offer now that everything has been taken from us? We both had high hopes of volunteering to help others along the journey and have been so flattened, even that feels a long way off. But, as we were saying goodbye to the nurses the other afternoon, one of them reminded Dominic that she loves to take care of him. "Dominic," she says in her thick Russian accent, "the bad news is I have to poke you today. The good news is I'm your nurse." She asks to work on the days he is scheduled so she will be his nurse. Dominic is so easy and good-natured, he makes her work light and easy. And I had to be okay with maybe that is all we have to offer right now. Maybe when I grow up, I will just be kind.

If you'd asked me six years ago where we'd be, I would have thought back on track with a minor setback. I just couldn't imagine we'd still be talking about punk rock music with our doctor every other week or swallowing handfuls of pills. I didn't think for a moment I'd still be logging onto myhealthonline and watching his blood counts, his liver counts, his kidney counts. I didn't think I'd be explaining to a nurse that indeed, chickens can lay eggs without roosters, they just wouldn't be fertilized. I didn't think there was this limbo land between life and death. I didn't realize that a cure did not mean a clean slate. I didn't realize that celebration goes hand in hand with unvarnished truth: everyone has a hill to climb; this event turned our 45 degree angle climb through life into something approximating 88 degrees, nearly straight up. It's tough slogging.

As I type, Houdini the escape artist stray kitty is sleeping next to me. Like the cancer, this little fella came out of no where. But, he brings life. He's been here for two years this month and we are smitten. We didn't need another cat. But here he is, bringing us unexpected joy. If you're not a yapping dog, he wants to know you. We caught him getting acquainted with a doe the other day. They were nose to nose, he on his haunches reaching up with his paw. Dom and I stand like two goofballs at the window just watching Bambi scenes unfold. I didn't know how much joy he'd bring.

Lots of unexpected things in life can bring joy. When Houdini showed up, I was a little bummed. My next cat was for sure going to be a Siamese. I love Siamese. I love their coloring. I had one with crossed eyes and I wanted that again. And I complained to a friend that everything just happened to me and why couldn't a Siamese cat show up on my porch instead of a Tabby? But, Houdini is magic and he's been teaching me a bigger lesson on accepting what is and finding joy in the moments.

And we have lots of moments here.

We're so grateful for the handful of folks who have made a special visit. We can't go out to dinner or do fancy things, but we have amazing views and some outdoor seating and wineglasses and a really cool cat.

Old tricks, new tricks

2022-11-28T20:27:00.000-08:00

This morning, my social media memory carried me back to the hopefulness of five years ago. The belief that after the stem cells of a generous donor were safely deposited in Dom's body, we'd soon be able to get back to our old tricks.

On the bright side, the cells are safely in his body.

This blog has become somewhat of a bi-annual observation these days. How do I write "we're still plugging along" over and over? But we are. We may not have the exciting twists and turns of will there be a donor match? Will the transplant take? Will the people upstairs in our temporary apartment ever stop partying with shoes made of clay?

Just like a daily dose of nature is as good for the soul as a once in a lifetime trip to a natural wonder; it's the daily gratefulness and observations that keep us going. It's good for my soul to take stock and look forward while looking backward. It occurs to me as I write this that I wouldn't make a good Buddhist. "Here now" is the culmination of all we've been through and what we hope for. I'm not interested in emptying my mind. I am interested in meeting the day with the knowledge that our hopes are very simple. To live while living.

So, how are we living? Much the same as the last few years.

We set our alarms to make the trek to Sacramento every other week. It's really quite a thing that now that we're "old" people, we wake early naturally in the morning, (sometimes really early since Dom is on steroids.) But Sacramento mornings, my alarm goes off and all of a sudden, I can fall into that elusive deep sleep I've been longing for. But I can't because we've got to go.

He's been on steroids for far too long. Most stem cell transplant patients are completely weaned off immune suppressing drugs by now. Our Dom is special. You know how your immune system kicks into gear when you have a cold and it wipes out all the intruding bacteria/virus and you're back to normal before you know it? Well. Dom's immune system continues to see his vital organs as intruders and sets about wiping them out cell by cell and won't stop until his organs are wiped out like a cold or flu. He continues the UV therapy. The nurses continue to marvel at what beautiful veins he has. The doctor has concerns. Here we are.

Our journey has taken us from a bustling hospital unit with dozens of nurses we got to know; I was actually in some ways excited for his 5 day hospital stays so I would actually get to visit with people. From there we spent years visiting the Infusion Center where again, we would see dozens of familiar nurses and while many people were seriously ill and there was an air of somberness, there was also an air of celebration and camaraderie for each small step. The Infusion "Center" was actually 3 different locations. Two of them were bustling. As time wore on, and Dom's treatment transitioned, we were sent to the smallest center, and the specialized machines used for Dom were in the back corner away from the hustle and bustle. At times, the quiet is nice. But it's not the same as when we'd walk into the bustling center and it was like an episode of Cheers, only they'd be calling out "Dom" instead of Norm. I even miss the beeps and alarms that kept us awake all night in the hospital and followed us through each center.

And now, the hospital and doctors have been rearranging and consolidating and we are in a closet on the ground floor tucked in behind registration and see only our nurse and maybe one other.

And it feels very much like our journey.

In the beginning, people were riveted by our story. We were surrounded by caregivers and concerned friends. As time has worn on, things continue to shift, and downgrade, and sometimes, it feels like our life has been distilled down to the people I can count on one hand attending to us in our closet.

Life imitates art, and apparently can also imitate medical organizations.

Five and a half years into the diagnosis and two and a half into a pandemic, I finally got a sourdough start. My first loaf was almost perfect. The following two were heavy. I'll leave that there.

Dom's full time job continues to be living. Being on steroids is no fun. Our marriage is a good one and we've made it through a lot of things others would crumple in. But steroids? Hoo boy. I'm going to want a gold star when he's finally weaned off of those. We've had a few moments where we just stop, blurt out "it's the steroids" and move on. He has good days and bad days. He has days where he can putter around outside and days he is one with the couch.

There is no prognosis at this juncture. The body will do what it will do and the doctor studies his numbers closely. There's talk of seeing a kidney specialist next because they are taking quite a beating. Dom is eager to be productive, and he does what he can.

We're trying to imagine what life looks like given our situation. We both have to reinvent ourselves, but in between the reinvention is the reality. I need a better job to support us both, but the pandemic threw a secondary wrench into that.

And in spite of all that, we are laughing and loving and being.

Throughout his illness, we've been stunned by the precariousness of life as well as how capricious death seems. It felt so weird that Dom's life was hanging by a thread and we'd hear news of a police officer shot in the line of duty or a firefighter down in a fire and we'd talk about the lack of rhyme or reason. We experienced that in an even more intimate way this year, as his brother's precious wife was taken suddenly and unexpectedly. She was just two months older than me, very active and just like that, we lost her. I cannot make sense of all the times she supported us throughout Dom's illness only to be the one who is snatched away from us. She was a beautiful human being and dearly missed.

We continue to take so much joy in our animals. Out of seven baby chicks, we did not get one rooster! For months, I studied their markings and behavior and was convinced with my luck, we'd have seven roosters. If you haven't just stopped and watched a chicken run recently, I highly recommend doing this. Just like so many things on my mind today, it defies reason.

The bobcats still approach the cage as if it's a vending machine. With the help of friends, we've enclosed the whole structure. But we continue to be vigilant for hungry predators. Yesterday morning, a fox came by.

We're in love with our stray cat. Houdini, unlike his predecessors, is not a lap cat, so when he does come around with purring and nudging, we're thrilled. I always did love the hard to get creatures. He melts our hearts every day. We're especially grateful for him as we lost one of the other boys. Our Errol Flynn is gone now. The cat I was so desperate to get home to all that time in Sacramento, the wily cat who made my neighbor cry when he escaped the carrier during the fire that nearly burned our house and she was trying to rescue him, the one who made peace with Houdini and ate side by side with the new kid in town. I do not deal with loss well at all. It is an inevitability. These years have been a Master Class in acceptance and growth.

It was Dom's first try at gardening this year. I think he's hooked. It's a battle against the critters, but we try. The bare root apple trees produced four apples this year, and we call that a win. He developed an appreciation for Kale and the chickens feasted on tomatoes.

I've been sitting on this all day. It just reads like a Christmas card, but really, I have so many things I want to share. But not like an apple pie I can cut into pieces and just give you a piece, more like an apple cart someone can push while I pull.

I have a lot of thoughts around the words blessed and grateful. Dominic and I have never asked "why me?" through this whole ordeal. But why not me? Is that an equally unfruitful question?

We are so grateful. But life is also nuanced and blatant and complicated and simple. I'm not sure where I can write all the other things that are just as real and true as we are grateful. I think this sums up what I'm trying to communicate perfectly.

Another year, another animal

2022-06-15T10:09:00.000-07:00

It's been five years now. I'm so glad I have this on line journal to look back on. Even if I only write once or twice a year, it's perspective. Looking back on last year's sharing, it was very heavy.

Thanks to this little guy, this year feels a lot lighter.

We'll be celebrating the one year anniversary of his unexpected arrival in a couple weeks. He showed up one night hungry and scruffy. I looked for his owners. I looked for a new home for him. Lots of people said he was meant to be mine, but financially, even just a cat is a frivolity. But, potential owners didn't work out, (I made a new friend though!), and I just could not bring myself to give him up to a place where he'd be in a cage or a small room until adopted. He'd been living on his own outside and that just seemed cruel.

So, Houdini the little escape artist became a part of our family. I'd shared about him on social media. The first night we noticed him, he was so hungry, and I'd later discover injured. It was dusk and he scampered by me as I was walking up the trail and sat down a few feet away. He just sat there lifting his head to smell the breeze. He seemed completely unbothered by his hunger or his wound. He just enjoyed the night air. He made his way down to the barn and stayed the night there. He lived in the barn for a while and it took a bit of maneuvering to make the barn secure. He was so independent, he would push his way through the doors we'd barricaded to keep him safe at night and dig his way out. He wanted out. And he wanted in. I can really relate to that. We want what we want.

My working class Brit teased about him getting his boots planted firmly under the table. This is true. He charmed his way right into our hearts. Over time, his wound healed and his coat became soft and glossy. And he makes us laugh and smile all the time. He's bright, friendly, and curious; he wants to know everyone. I guess, in some ways, he reminds me of Dom. Life has been pretty precarious for Dom, but he'll still walk outside, lift his head into the breeze, and just take it all in. He too is healing from his wounds, and he's been taken in by all of you. You've fed him and cared for him. You've made it possible to get treatment he needs and continue to cheer him on as he faces the lifelong disease of gvhd.

Sometimes, we're hanging on by a thread.

But we are hanging on.

Last year, I was so exhausted. I had actually found myself crying uncontrollably the entire month of June. I felt alone and in some pretty deep despair.

July was a game changer. I shared here that Dominic was able to be fitted for contacts that protect his eyes. He was going blind and in constant pain. We had to get them, and if you remember, a group of artists had decided to give him the remainder of some funds they had which amounted to almost the exact amount necessary for the contacts. We still live on that divine grace.

The pandemic shifted things for us and for me. It made it easier to let go of some things. It is the strangest thing to be on the cusp of normalcy only to have the whole world shut down and then try to find a new normal and actually there is no such thing. I realized, what we all crave is not normalcy, but comfort and adventure.

Our adventures remain our trips to Sacramento. We go every 2-3 weeks for Dom's treatment. He's kind of at a stand still where we still hope for forward progress. He's still on large doses of anti rejection medication, which should have been over by now. He continues to suffer a laundry list of ailments that we treat like whack a mole. Oh that some wet cat food and a safe home could cure him. We balance hope for progress with cheerful resignation. He is alive. He is able to help where he can. We have Houdini. All is well.

Thanks to the contacts, Dom is also able to drive a little. It was not a possibility last year at this time. We make a stop on the way home from Sacramento to pick up paperwork for my job and he drives the final leg home. It's been so good for him to be behind the wheel and taking back more of his autonomy. He's also been on the tractor as we have acres of fields to mow. This year, he's been able to help me more. This is good for both of us! We spend lots of time outside. This is one of the gifts of Covid, I think. Since we knew we'd be spending a lot of time at home, we've done what we can to make it a happy place. We don't own our home or the property, so everything we do is mindful of that detail. We're also mindful of fire danger. But, in between all that, we've planted a garden again this year and to plant a garden is to hope! We did a re-haul of the chicken coop, hopefully protecting them from bobcats and foxes, and started a new flock. (Thanks to my anonymous helper and Charlie G and Bob for their help on the coop.) And just to add to the poultry farm, we have a resident Tom. We call him Turkey Lurkey, and since I started feeding him leftover grains, he's not going anywhere. He has a damaged leg and limps around grazing on the last bit of field we've left untouched for him. We eagerly look for him in the mornings.

These things all give us life. Just being and helping in small ways where we can and breathing in the air.

No one can ever convey the intricacies of their life to another. My own mother who I speak with every day is continuing to learn and understand how we are situated, so I realize our own odyssey can be difficult to wrap one's mind around. Life as we knew it has changed irrevocably. Our goals and dreams have changed. But the one thing that remains is love. I shared a book page of the The Boy, the mole, the fox and the Horse by Charlie Mackesy yesterday, I'll leave you with it:

"We don't know about tomorrow," said the horse, "all we need to know is that we love each other."

2021-07-26T09:18:00.000-07:00

One of my guilty pleasures is a Hallmark Channel tv show where things always seem to turn out just right. When the town needed a new something and the money wasn't in the budget, magically, a young intern decided to go through some old dusty accounting ledgers in the attic and an old bank account was discovered containing just the amount of money needed. It's like magic. I loved the idea of money turning up just when it was needed.

Last month, I was being really raw and honest. It was important to me that people understand our journey is not over.

But along the journey, there's always room for sweetness and light.

Some people say we must make room for good things. I don't think that's true. There's always room for goodness. You just need eyes to see.

The next step for Dominic's eyes was special contact lenses. The theory is they protect his own lenses from damage that his own system can no longer accomplish due to his new immune system attacking them. This prognosis was not made lightly. He climbed the ranks of specialists and tried numerous treatments before landing here. Insurance denied coverage for this. We decided to pay out of pocket because this is so important to Dom's quality of life. It is more than an artist keeping his vision, which alone is tremendous, it is also a pain management solution. He went in for a fitting and just having contacts in for a short while brought immediate relief. He was really looking forward to acquiring his new lenses and being able to see, and more importantly, see with less discomfort.

In the interim of the fitting and his contacts being made, a dear friend of ours asked if she could bring something to us. We thought she'd be bringing a homemade meal or pastries. We sat outside and she told us this story.

She's a part of a group of talented women artists, the 428 Collective. They've been together for years and support one another and their work. Somewhere along the line, they'd opened a bank account for their endeavors. Over time, especially Covid time, the account was forgotten, the world shut down and art shows were on hold for a while. The bank called one of the account holders and instructed that if the account remained inactive, the money would be turned over to the state. So they talked amongst themselves about this forgotten cache and decided to have a dinner with the proceeds. What a gorgeous dinner it looks like. After the year we have all had, how delightful it must have been to gather and connect. This alone makes me happy. Where lovely, strong women gather, beautiful things happen.

The expenditure for the dinner did not exhaust all the money in the account. As they sat around under the twinkling lights they discussed how to spend the rest of this unearthed treasure. Some of the ladies know Dominic, and he had come up in conversation for updates on his health. It was decided then, that the remainder of the money should go to Dominic. It was almost exactly enough to cover the lenses, with a little more leftover to buy the solutions to go with the lenses.

I will leave each of you to name this goodness what you will. For me, I am ever so grateful we are seen and cared for, and our needs are covered from the most unexpected places.

Thank you 428 Collective for your generosity. Thank Goodness for generosity and kindness and love and compassion.

Post Script: The contacts are in and they are providing relief and protection. Dom is beyond happy.

2021-06-15T09:39:00.001-07:00

It's been 4 years!

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

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

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

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

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

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

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

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

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

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

But we jump through the hoops.

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

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

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

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

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

New hospital? I feel a blog post coming on.

2020-01-11T18:21:00.000-08:00

New adventures in hospitals definitely call for blog posts. I can't help but compare and contrast and want to put into words all that has transpired.

As most of you know, we went to the ER on Wednesday morning with a fever. We started at urgent care, which felt a little safer, but oxygen levels indicated our needs were more emergent. One of the reasons we were reluctant to go to the ER was immediately visible to me when I went inside.
I left Dom in the car to shield him from more germs. And I could practically see them flying around that room. Poor miserable souls. The room was packed with various illnesses. I held my breath.
I arranged to receive a phone call when they were ready to see Dom, and I speed raced him in a wheel chair when we were called. (Of course I received half a dozen spam calls all of which I answered not knowing the number that would be calling me.)
They saw him in triage where they took his vitals and some blood and other tests. Then we were sent back to our car to wait for a room in the ER.
The hours ticked by. I didn't plan for this at all. Basically, we got out of bed and rolled out without much thought to food. I couldn't go get food because we didn't want to lose our place in line so to speak. Dominic's lack of appetite increased with his illness, so we're dealing with more weight loss and getting calories in him is imperative. (Kicking myself now for not packing him food.)
But I'm getting better and better at asking for what I need. I needed food for Dom. So I reached out to his good friend and asked if he could deliver food. To the parking lot. Isn't that where all sick people with no appetite want to eat? In no time at all Bob arrived with a delicious hot soup and some crackers and thankfully, there's grandkids around because Dom put in a request for a kid drink.
All in all, we sat in the car for around five hours. We'd left before 10 in the morning, and it wasn't until 4 pm that we landed in a room in the ER. We did have blankets for him in the car, but the fever was keeping him warm.
I was so grateful they put Dom on priority for a room. They wheeled him past a very disgruntled nurse and woman who thought they were getting the room. I felt badly, but not really. Dom's needs are special. The last thing he needed was to pick up additional different germs. It was a bit of chaos from there. My mind was a bit of chaos. When we left in the morning, I wasn't thinking pneumonia. (Though I think I knew). I wasn't thinking hospitalization. I was thinking Urgent Care, prescription, bed. Easy peasy.
Nope.
Nope.
Nope.
Now, getting information from doctors in these emergent situations is always interesting. Interesting in the same way someone shows you their new furniture and you say it's interesting, or they've prepared a "special" meal for you and you say it's interesting.
I don't know what to make of the information being thrown at us. It's interesting.
Is it viral pneumonia or bacterial pneumonia? It makes a difference, but it's too soon to say. Is there also a flu bug? Can it be treated at home? All these questions swirling about.
The room is small. There's no toilet, as it's not a hospital room.
The ER is slammed. It's one of the busiest days they've had. People in beds lining the halls.In moments of boredom and waiting, Dom and I would catch snippets of things outside. A young man sat across from our doorway being looked at for muscle strain. He'd hurt himself lifting. We heard a nurse give him an ice pack to take home and suggest to him to take some otc pain killers and to take it easy for a bit. He asked her if he could go back in and lift tomorrow. I know it's mean, but we laughed. The humanity. The folly of youth. The soberness of experience. My head full of cotton as I'd not worried about my own food needs. I'd found chocolate almonds in my bag and devoured them. But, at some point, I realized this wasn't the infusion center in Sacramento. No one was coming by with a sandwich cart. We weren't being escorted into the hospital where the nurses waited on us hand and foot making sure we had our needs met.
It was evening, and I asked the next person to come into the room if there was any way Dom could get food. He looked at the clock and told me if we wanted food, we should have asked before 6:30. And that was it. No offer of any assistance. I was later taken into a room by the charge nurse who allowed me to go in and make myself a coffee and the fridge was full of jellos, puddings and sandwiches. I kind of want to throttle the guy who flippantly told me too late, no soup for you. Thankfully, I'd found the cafeteria once Dom was settled and bought him a selection of things, but I'd hoped he'd get a hot meal.
As the evening wore on, and there were still no beds available anywhere and it looked like Dom would be spending another night in the ER, as he had two and a half years ago when he was diagnosed with Leukemia. I really wanted him home away from all the germs. I couldn't see the point of him staying the night. I was terrified by the thought of him being taken by ambulance in the middle of the night to some far off hospital. The memories of driving to Sacramento completely bleary with grief and lack of sleep are still very close. But, after weighing all the options, going home would mean starting all over at the bottom of the line in the ER. So, with much discussion, we decided to stay. In the process of discussion, I did complain to his finally present nurse that part of the reason I wanted him home is because he was being so neglected. I shared with her how I'd asked about food and been brushed off. She was so sorry and became immediately more attentive and returned with puddings and jellos and drinks. So, I finally settled into leaving him at the ER.
With heavy heart, I drove home, remembering the drive a life time ago, leaving my muscular but scared man on a warm summer day in a bright green t shirt looking so handsome but frightened on a paper covered bed to be taken by ambulance the next morning to Sacramento.
This time I left a much more frail version, already in a hospital gown who was now a professional at this business and happy for me to go get rest.
The next morning, there was talk of sending him home to be followed up with by his physician. He would be on oral antibiotics. The two doctors that came in to see us were happy to send us home, and impressed with our dedication to getting him better.
And then.
More test results showed we weren't going home. Different strains of bacteria. Different concerns. Red flags all over his chart. "Don't send him home!" I was, of course, happy I did not take him against medical advice the night before. I was glad that at the very least, he did have a bed in the ER where they would treat him until an actual hospital bed opened up.
And as I've mentioned elsewhere, he did charm the socks off them. It was another busy day in the ER, nurses from the day before came in and told us how they went home, showered and fell asleep in their dinner, too tired to put their sweet babies in bed. And Dom smiled and twinkled his eyes at them and they melted.
Logistics were making my head swim at this point. Would he be moved? When? How far away? I watched the clock and tried to also make a plan to be home around dark to put Wallace the goat away. A friend met me with homemade soup in hand to enjoy later that night when I'd crash through the door. She took me home to regroup. A distracting and welcome visit over tea, and it was back in the saddle. A call came from Dom that he'd be heading to Novato by ambulance. Another call for a rx he needed. I was assured he wouldn't be leaving for over an hour, but just as our friend was dropping me off, the ambulance was wrapping him up. I'd balked at him being so sick he'd need an ambulance the night before. But moment by moment my resistance to all things bureaucratic and emergent was melting. My hopes that this would not need hospitalization had melted away and I buckled up for another ride.

I followed behind, way behind since I didn't qualify for the carpool lane.

Unlike Sacramento, where the main entrance to the hospital faces an inhospitable one way valet parking street. and is situated by an overpass and in the middle of a myriad of one way streets, this hospital is down a street that parallels a strip mall and theater and ends in a cul de sac where the hospital lies. The entrance just says "hospital".
The gals at the front desk were deep in conversation and when asked where the room is, I was told to take the elevator or the stairs up to the second floor. That's it. Nothing else. No then turn right, look for this, go to that. Just. Here's the stairs.
The staircase is rather grand, after all our time in Sacramento where the stairs were in echoey corridors where barely two people could walk side by side. This staircase is out in the open and wide. I still didn't feel as if I am in a hospital. No security. No one cared I was there.
There aren't really signs here. I arrived at the top of the stairs with no idea. My first instinct was wrong. I found the doctor's sleeping room.
After trying every turn, I found a very large lobby with living room furniture, a barren Christmas tree and a front desk with yet another person who didn't care that I was here. (Sacramento scans your ID and wants to know who you're visiting.) The lobby is carpeted and that alone feels cozier than the sterile Bone Marrow Transplant Unit where we lived for so many months.
I found his room and it's a two person room with an empty bed! No beds, no beds they told us as we waited in the ER. And here we are. Perhaps he needs a room to himself and it is by design that the other bed is empty.

The evening rounds doctor was in the room chatting with Dom when I arrived. He was so chatty! I was surprised. We're accustomed to Dr Carroll breezing in and out. This doctor wanted to know everything. He explained a little bit more in depth what was happening with Dom's tests, and gave us a crash course in microbiology.
In profile, he looked so much like a family member, I found myself creepily staring at him and wanting to snap a photo without his knowledge.
When he left, it was just so quiet. I almost thought we were the only people here. The BMT unit was a cacophony of nurse call chimes, beeps and chirps. Someone's infusion was always calling for attention and nurses would poke their heads in to see if it was Dom's machine. Here, it almost feels like a home for the elderly where everyone is tucked up by 8. And after many months of living in Sacramento, they became our community and there was always a friendly face. Here, we feel like foreigners in a strange land.
Later, a nurse with a big beautiful smile came in but was all business. No chat. I asked how late I could stay because I'm a rules girl, you know. She uncomfortably laughed and said she didn't care. As long as there wasn't another patient, I could sleep in the chair. Okay.
But I was going home. Dom seemed stable. He wasn't in an ICU, he was in the lowest level of care, which means he is stable. After months of waking to his coughing (from the gvhd) I wasn't ashamed to want a good night's sleep.

I did sleep like a champ, once I did drift off.

The next morning, I was anxious to get back to the hospital and get all the updates on Dom's condition. He woke up ready to eat breakfast, and that is a very big deal. As I shared elsewhere, the day in the hospital flew by.

And now, the second day has flown by, with two more to go.
We think.
We hope.

Even though I look out the window and see beautiful green hills instead of city buildings and highway, it's not our familiar place.
And our hope is to keep it that way.

Roaring into the twenties

2019-12-19T22:41:00.000-08:00

 
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

2019-06-26T16:56:00.001-07:00

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

2019-05-01T08:26:00.000-07:00

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

2019-02-19T10:10:00.000-08:00

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?

2019-01-01T09:57:00.000-08:00

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!

2018-12-25T08:59:00.000-08:00

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

2018-11-30T07:21:00.000-08:00

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:

2018-11-27T07:35:00.000-08:00

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.

2018-11-16T11:57:00.000-08:00


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.....

2018-08-10T10:02:00.000-07:00


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

2018-07-30T12:48:00.000-07:00

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

2018-07-21T15:04:00.000-07:00

 
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.


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