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.

 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.

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

 

Photo credit Tibidabo Photography

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

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

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

But.

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

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

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

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

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

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

Merry Christmas and Happy 2020 with much love from us~

Strength from weird places

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

To plant a garden

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

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

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

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

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

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

A glimpse of tomorrow

A gift of daffodils at attention

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

Feeling like Pavlov's Dog

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

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

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

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

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

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

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

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

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

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

The Winds of Change?

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

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

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

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

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

I'm not there yet.

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

But how?

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

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


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

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

Happy new year to all far and wide.

Christmas is here again!

Merry Christmas to you all!

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

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

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

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

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

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

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

Christmas Lights Hope Lights

I think we're going to drive through and see the Christmas lights on the Fab 40's in Sacramento tonight. We have a very early appointment for a pulmonary function test and decided to drive in tonight and stay in a hotel. Not the place we stayed that terrible week straight out of the hospital. Not a glamorous hotel either. Just a nice place where I got a nice discount with a special code for transplant patients. We have lovely friends we can stay with, but we're setting out almost with a little holiday in mind, and a hotel for just one night on my terms sounds a little dreamy.
 
And this day, this is Dominic's birthday. Not his actual birthday, his second chance birthday. The feelings all pulsing through my heart are palpable. One year ago, we watched the bright coral colored stem cells flow into Dom's body, and we went to bed that night in the glow of my battery operated Christmas lights with the knowledge that he'd made it through that first big hurdle of accepting the cells. We fell asleep feeling like our whole lives were before us.

It really felt like an actual shift. All the chemo is behind us. All the anticipation.

Well. Not all the anticipation. We still anticipate what is next. But the donor had been found, and the job was done. So now, we hope. We persevere.

After almost exactly a month in the hospital, we were free to move into our temporary place. After a month of being in an enormous room with people peeking in the door out of curiosity, people walking through the door to work, and the lights and beeps, we were released, and though where we moved was not literally quiet, in my heart it felt like the quietness you feel in a snow fall when sound is muffled by snow flakes falling and collecting all around.

With Christmas just days away, and our newfound freedom, we bundled up and set out to see the Christmas lights.

Which is the same place we're heading later tonight. I'm also jumping out of my skin because after the appointment  in the morning, we're meeting with one of our most favorite nurses to catch up. It's been too long and we're delighted to finally try and meet up. Well....we tried before, but timing thus
far has been off. Fingers crossed, because we really miss her. And there's some synchronicity both in seeing the Christmas lights and seeing our nurse.

We'd see this nurse throughout the months of chemo, waiting in agonizing anticipation for a donor. In the middle of the night she'd come in to make the beeping stop, but she was never our nurse. We immediately liked her, and I'd wonder out loud when she'd actually be assigned to us. I later realized she only works with patients after transplant. So finally, after months of visits to the hospital, she would actually be the one to carry Dom through the night. And tomorrow again, after months of agony we will get to connect with her. Even though she was our nurse again during the very difficult time, I don't think about that. I associate her with being part of the other side, the other side of transplant, the other side of gvhd. We are being ushered beyond these milestones.

And the lights. Last year, we drove through feeling a deep kinship with Christmas and new life and the wonder of it all. Tonight, we'll have this whole year behind us. And though the whole year is behind us, it almost felt like a wrinkle in time, where the past 6 months of the horror of gvhd are in that fold, and we can meet again the feelings of hopefulness we had a year ago, the feelings of being in a cocoon in the hospital and in our apartment in Sacramento. While we always longed to be home, we also felt so safe being in the hospital or so near the hospital. And while I greeted that old feeling of security again, that I associate with that time in anticipation of driving through a twinkly wonderland, I also feel like we're truly being deposited on the other side. I finally have a sense of relief that this time, Dominic's new immune system is going to kick into gear and do what it is supposed to do. What better bookend to this year than sparkling lights and sparkling friends? Dominic is getting his sparkle back every day. Our ground zero now is a little more ground zero than last year, but we're more resilient, more tenacious, and more experienced. 2018 threw us a sharper curve ball than 2017. As I think about all these comforting things on Dominic's first birthday, I am convinced that 2019 will lob an easy home-run to us and we'll look back on his second birthday with even more joy and life to celebrate.

All the best people are:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Rebuilding this house.

An overflow of flowers from a friend. 

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

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

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

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

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

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

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

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

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

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

No news is good news.....

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

We've been home for almost two weeks now.

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


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

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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.