Home is

We are so thrilled to be home.
To sleep in our own bed. To be surrounded by our comforts. Our stuff of life.The scenery out our windows. Our furry creatures. Each a part of what makes home home.

Home is an interesting concept. I wrote before, home is where Dominic and I are together. (And where I have ziplock bags.) And yes, that is true. But home is also that place where you have everything just so. We each have a bedside lamp at home. We each have a place to rest our coffee in the morning and our water at night. We have a place for books and remotes and tech and the various bottles of prescriptions or sleep aids or painkillers.
Here is that place at our temporary home.

The wonder of the box. Cats sit in them. I lie next to them. I brought my own lamp. A sticker marked fragile is wrapped around the corner. Indeed. So true. Glamorous living.

We're working toward normalcy. It will take time. We know that. We talk about it. The fatigue is still a very real thing for Dom. The steroids did mask the fatigue, so now he rides the tide in and out, day by day. He's still neutropenic, which means we're still careful about the foods he eats. We have to think through things, being sure to eat safely while keeping in mind magnesium and potassium rich foods. Can I get an amen for dark chocolate? Rich in magnesium. Who knew?

I feel like I'm looking over my shoulder. I don't feel like something bad is going to happen. (It already did?) It's just after all this time of hospital stays and infusion center visits, it's a strange thing to be home and not anticipating a 5 day or 3 month stay. I can't shake it.
I know I will.

Over time.

There's so much to do at home also. There was much to do before that terrible day back in June. I've spent the last several days cutting back trees and pulling weeds. The neighbor goats are delighted with branch after branch of new oak cuttings. I have been resistant to cutting back the many saplings around our house, but last year's devastating fire changed my mind about that. There is a young oak tree just outside our bedroom window on the other side of the fence separating us from the former horse field. As I came up to the tree, I noticed a shrub below had burned and the flames reached up and burned a section of the tree. My gratefulness for all the people who saved our home bubbled up again. The acknowledgement of how precarious this past year has been washed over me as it does periodically, sometimes with rhyme and reason, sometimes with none. I have exponentially experienced the fragility of life this past year, and it causes me to simultaneously hold on tighter and relax my grip.

I do believe the transition has been complicated by this experience of the fires. The final months leading up to transplant day were colored by waiting and hoping for rain, and feeling so incredibly vulnerable.

I'll likely always feel vulnerable. I'll also always feel grateful and strong and capable and cared for. Life is complicated. This past year just added some incredible facets to the prism I see the world through.

And so now, we're settling into yet another temporary rhythm. A rhythm of first 3 days in one week to the infusion center, then 2 days, and hopefully soon just one and then none. The week of 3 visits tore me up. We've had our longest vacation this weekend. We've normally been  driving to Sacramento every Monday and Thursday, but this week, we don't return until Tuesday. I had four days in a row to settle. Four days that afforded me the time to work on the great outdoors and catch up on office work and watch some movies with Dom.

There's still bouts of discomfort for him. Constant little reminders of all he's been through, and all that lies ahead. We constantly hope and pray that he'll have little after effects, but it's all still a mystery how things will shake out.


We haven't been very sociable. We're still keeping pretty much to ourselves until his WBC goes up. My neighbor dropped something by while I was taking a walk last night, and I was kind of excessively sad I missed her. I almost called her back. I'm mostly an introvert, and a home body, but this has been a long haul. I could very possibly find myself enjoying small talk at this juncture.

I think it will all feel a little less transitory when summer comes. I love the winter. I love bundling up and snuggling under blankets. But I'm hoping by summer, Dominic will have his WBC back on track. I'm hoping he'll have more energy to be out and about. I'm hoping his windows of experience open wider. I think home is not just where we have our comforts but also where we feel safe to thrive. I think I'll feel more at home when Dominic can return to his camera and his rhythms of life.

We're astonished we're already here, we've already come this far. We can continue to make the slow transition and learn to thrive again.

Now, off to bed for his big day tomorrow! No more tri-fusion! No more ports in his body! A long shower without worry about getting the bandages wet is on the list of things to do tomorrow. For the first time in months, no Saran Wrap and tape. (Yep. He was like leftover veg, wrapped in kitchen plastic roll.) Tomorrow is yet another milestone of so many.

Forever grateful.

jiggity jig

The news is out. We are home! We are officially home. After one hundred plus days, the temporary home story is over and the transition to home sweet home begins.

I wish I had taken the time to sit and write so many thoughts...but it has been a whirlwind!

We began the transition back in February. We talked about what to do as our commitment to the house in Sacramento was coming to an end and the neighbor's ability to not tromp across the floors at 3 am was not coming to an end.

We made arrangements for friends to be with Dom while I spent a weekend getting our little cottage ready. I'd let the cats have free reign in our bedroom and after 3 months of their indoor/outdoor fur-bodies lounging on the bed, it was not pretty. Everything came off the bed and got a good wash. And, call me crazy, but I started spring cleaning from one corner of the room, all the way through the house. No, I'm not content to just vacuum, dust, and mop. I must go through every drawer and basket and cupboard and spring clean.

But I have to back up. You see, I was not the first person around here to spring clean. The tractor shed is attached to our home, and over the years, the shed became the final resting place for a lot of junk. (The homeowner's, not mine! I have plenty of junk myself, but perhaps not a garage door motor circa 1970.) Over the months we'd been gone, some special people had been weeding and cutting back bushes. And one day, a group of very special people spent love day cleaning out this space! No small feat. I parked, ready to tackle everything all at once, in the back of my mind knowing I would also tackle this space soon and.....it was already tackled! It was cleaned out! And, as I got closer to our porch, I saw pretty flowers fresh planted! My heart was swelling and racing. I felt so very loved.
It was like an Easter egg hunt, that's what I thought, as I walked around the house and found once empty flower pots and ceramics filled lovingly with flowers and succulents. And a young man had spent his day weed mowing until he ran out of string. I was so touched that the son of a friend would spend his day caring for us so tangibly. Our firewood was stacked neatly, and as I have stacked firewood myself, I know that was no small job. Everything looked so incredible. Our dear friends did what would take me weeks to do in one day. I still get a little verklempt thinking about it.

And they are dreaming of outdoor spaces with us. Dreaming of a summer spent outside in beauty, quite the opposite of this past summer. And I could not have better people in my life if I tried. I attribute it to Dom and his winning personality.

So, armed with all those good feelings, I set into the house. I covered the table in items that would be happier in other homes. I packed the last of Christmas away. I of course cuddled the kitties. And I vacillated between can this really be happening and we are coming home soon.

I spent the first day and a half doing the purge thing. There was an added layer of looking to replace things my Mom had lost in the fire and finding things I was so relieved were not lost. My heart still hurts when I think about the fire. It's crazy to me to think back to where we were that October. Dom was on round 6, the dreaded even round of chemo, and we still had not found a donor. There were possibilities, but no one clearly committed. I think we were as low as could be. And waking up to the terrible news that our city was on fire, our home was under threat, a beloved home lost already, and Dom not able to lift his head off the pillow, those were dark days. Those days, it was very difficult to imagine that someone would donate their stem cells and we'd find a place to live in Sacramento, and we'd make it through the 100 days.

And there I was. Preparing our nest that survived the fire, for my man who also survived his own fire. 100 days nearly complete and pretty little flowers to welcome us home.

And wouldn't you know, if I wasn't already emotional enough, my Aunt was doing some spring cleaning and purging of her own, and offered to send me some of my Grandma's things she'd been keeping. In figure, I am a carbon copy of her. My aunt sent me a couple pictures to see if I'd like the items or not. The black rain coat that was my Grandma's last coat I remember her wearing immediately brought tears to my eyes. There was just something about the cuffs that instead of buttons had little bows. The coat spoke to me also of the adventures my Grandma went on. She wore this coat to Switzerland and Chicago. She'd traveled Europe straight out of high school in 1938. Her steamer trunk with stickers from each country she visited sits in my house complete with much of her travel attire. She continued to travel as she could throughout her life. Somehow, that coat held so much Grandma, whom I love dearly. I'd already shared all this with my Mom, shared with her how I cried when the photo came, and cried again even as I shared this with her. I cried as I opened the box of treasures cleaning weekend, and shortly thereafter, Mom showed up. The coat fit her perfectly. It's raining even as I share this, and it makes me so happy that my Mom should have my Grandma's coat. (This Grandma is my Dad's mother.) But for my mom to have her coat just felt right in the midst of all that has happened.

And all of the above is to say, if you didn't already guess, this is an emotional time! But, I welcome the emotion. I welcome the connections and the history and the memories and the dreaming of better days and making new memories.

I scurried around for 2 nights and 3 days and with the help of Mom and friends, got it done. I feathered the nest and returned to Sacramento to scoop up Dominic. He'd had a great weekend with friends.

I packed up our little mini to the roof. (We'd arranged to pick up the rest, which also turned out to be to the roof, on our next doctor visit.) Dom stayed in the car as the first thing I packed up is his work computer. Once I could not shove a single other thing inside, we set off for home. I wondered how he'd feel heading home after 3 months of being away. We were mostly excited and relieved to be saying goodbye to the noisy house. No more elephants up stairs. No more metal kitchen with 20 pound flat ware clanging loudly every time we ate. And we were so longing for home. And, we were nervous as we weren't technically freed to go home. We just decided it was time. But, a part of us worried as we didn't want to jeopardize anything we'd worked so hard for.

Dom felt the same shock and awe I did as he walked up the path and saw all the work that had been done. He looked up at our green hills that were once brown from the fires. He scanned the tree line taking in the ones that burned down, and the ones that look like they'll make a comeback. He masked up and took a walk.

And now that we're "officially" home, the sweet relief can really settle in. Now that the doctor said it's "okay", we are sleeping like babies. He is extra fatigued right now, as the steroids he'd been on gave him energy. He's completely off steroids now, and the doctor cut out another medication yesterday. Each cut is a sign of moving forward. So, he's settling in slowly. I'd imagine it's bitter sweet to be home. Mostly sweet. But there's still limitations. We're still taking precautions as his White Blood Count is taking its sweet time rallying. It will be some time before he can integrate back in to work, and even more time before he can work in the garden or do things he'd normally do around here. But for now, he can wander around outside. He can set up his office and be inspired by tutorials and past images he's shot.

And I've already gotten my fingers in the soil. My neighbor took me on a surprise adventure and bought me a plant to put in the ground with all the fixings. She'd done some research and took me to just the spot for what was needed. We spent the next morning weeding out a spot that was once a jumble of pots, and carved out a plot for sweet peas and peonies.

Looking back, time did fly and move like molasses. I did not know what to expect, but I think things went better than expected. I bought Dominic a bell for Christmas, thinking he'd be an invalid barely able to move, and that was certainly not the case. He's been so strong, and has received so many compliments from the doctor and nurses for what a good patient he has been.

We still have many trips to Sacramento. There's still many tests and blood draws. But we're home! And the first tests returned very good results. Dom has just returned from a morning walk and our noisy black kitty is telling us what's what.

Numbers and Valentines

As I stood in the pantry that's really not my pantry last night, looking at the stores of food I've amassed, I felt a moment of embarrassment. I'm one of those socially awkward people that thinks about the weirdest things. Like, it looks like I've lived in this temporary house a long time....it doesn't look like I'm planning jail break in 2 weeks. I did bring all our food from home that would expire before March.  Some random flours and sugars Dom's experimenting with. My food is wedged in between the home's appliances and pots and pans in the pantry.  I feel awkward about these things because for instance, my neighbor saw me carrying in our dear friend's sleeping bag for when she stayed the night and teased me about where are we fitting all the stuff we're moving in to just a temporary house. Call me self conscious.

I love Dominic more than ice cream.

Anyway, when I looked at the pantry full of food, and let the embarrassment pass, I started counting (again). I count every day. How many days until we go home is number one. But then I count how many days we've actually been in Sacramento. 83 days. That's how many days since Dominic has been in his home. 77 days since transplant. They told us in the beginning we'd become fixated on the numbers of his CBC (complete blood count), but now I'm fixated on days too.

Staring at the food, I counted some other numbers. We've been in this apartment for 57 days. That means we've had 171 meals here. Well, actually, 169 1/2. It's not dinner time yet and my friend took me out for dinner one night. (Thanks friend!) Then I started trying to figure out how many meals I've eaten out since the diagnosis. Dominic's number is easy. Zero. He has eaten at a restaurant 0 times since June 15. It was just easier once he began chemo to isolate and eat neutropenic all the time. (Neutropenic describes both a patient's immunity and a very restrictive diet.) He also has not had a cappuccino since June. I believe the first thing we will do on March 8 is go out for a cappuccino.

I have eaten at a restaurant twice since June. Both times with the same friend. It's only fitting I should eat out with one of my foodiest friends. I've also had another friend bring me a giant delicious burrito, and that was nice. My Mom has brought me Chinese and pizza on my quick trips home. Our over night guest with the sleeping bag left some pizza here for me, and it may as well have been from a restaurant. ohmygoshitwassogood.
I have had the odd cup of coffee from Starbucks. I collect points from our ground coffee and redeem them for free cups of coffee. Don't hate my penny pinching ways!
So mostly all our meals that were not in a hospital have been at home. Two of Dom's meals were made by another friend with items fresh from his garden. See, I can't stop counting.

And it doesn't seem like a big deal at all until I scroll through social media and see how reliant people are on fast food to get through the day, or eating out to mark an event, or eating out because it's nice to, or eating out because they can, and I realize it really is kind of a big deal, this thing we're doing.

And honestly, I'm not chomping at the bit to eat out. I do look forward to it. I look forward to the day Dom and I can just decide we've had a long day and maybe someone else can cook and clean up. Not that I mind cooking or the clean up. Not that we went out much before. We really didn't. But to know that we can. That will be fun.

But for now, he continues to experiment with soups. (That's his thing right now. Next week, it could be something else.) We're grateful he even has an appetite. And we're grateful for every morsel of food.  And we're grateful to be on this journey together. I can't think of anything more romantic than standing by my man through thick and thin. I can't think of anything more romantic than this fight he has fought so hard, in part for me. This just might be the best Valentine's Day ever.
All these numbers, and there is no way to count the ways I love and am loved.

Walk with me

I've definitely lost blog steam. It's kind of a good thing. It means our journey is slowing down. It means the newness is old news and we press on hoping for continued good news.

As Dom and I take our walks through the neighborhood, I like to weave up and down the streets so we don't have to see the same things twice. We talk about whatever strikes our fancy in that moment. Sometimes politics, sometimes our plans for the future, sometimes whether or not we like a style of architecture or how we would improve a home. But every walk, every day, we count the number of days. We're on day 69, which means we've been in Sacramento 75 days, and will be here 31 more.

I saw this bloom on one of our walks, and it inspired me. It was the first sign of spring to come. It made me so hopeful of our new beginning.


As I share our journey, the cement footed creature is again making some journey back and forth across the floor above my head.

I feel like we're mostly in a wait and see game. I mostly just choose to see that he is healed and we'll be able to avoid the many potential struggles that lie ahead. He is doing really well. Surprisingly well. I was just chatting with him that recovery has gone better than I'd expected. I did buy him a decorative brass bell for Christmas, imagining he'd use it on his weak days. There weren't any.

His hair is coming in and I smile over and over at the daily changes. The eyebrows are very nearly back to their old selves. They did make the nurses laugh as they grew straight out for a week or two.

The white count dropped dangerously low a couple weeks or so ago. It's not out of the ordinary for that to happen. But Dr Carroll is always our calm in any storm. Occasionally, the nurses may express a bit of hand wringing in the numbers, and cause us a little alarm. One nurse loves to tell worst case scenario stories. Unless of course I jump to a worse case scenario, and then she tells me I'm over reacting. Her last story in response to our chagrin over the count dropping was of a transplant patient who had to go the infusion center twice a week for a year because he needed an infusion of blood and platelets. I'm sure we don't need to know that. But soon enough, the doctor makes his twice weekly visit, and all is calm.
It's called the 60 day slump. The count generally falls around 60 days naturally, and the steroids also make the white count drop. I guess we were getting a little prideful that his numbers were staying so strong, we were a little unprepared for the drop. But here we are, hopefully on the upward climb.

Time seems to be moving at a snail's pace, but the days go by fast. We look at the clock and wonder where the day went. They do go by especially fast when we spend our morning at the infusion center. Sometimes, I try to get a little crafty or roll out the yoga mat. But, generally, we both sit at our computers and work, or binge watch the latest offerings. I don't feel one bit of guilt about taking this time to watch whatever strikes my fancy.

The kids next door play in the little breezeway outside our front door throughout the day and we love to hear their little boy voices and imaginings. Mom's voice is always calm and Dad's voice is always animated. As much as I loathe the babies upstairs, I adore the ones next door. I honestly feel really grateful to get to have fresh little human beings so close.

We saw one of the kids who lives upstairs in passing the other day. He looks like he weighs all of 90 pounds and we scratch our heads at how he has such heavy feet.

We bought ear plugs, I moan a lot, and one day, this will all be a distant memory.

I splurged on a little African Violet at Trader Joe's a couple weeks ago. No plants inside, but I couldn't resist a little life right outside our front door.

Speaking of plants, we took a walk through our State Capital gardens. There's quite an array of trees and plants from all over. It's amazing to me that a tree from England grows very near a tropical tree from Florida. We admired the Capital building's architecture and read all the memorials we could find.
It feels like spring here now. I packed mostly cold weather clothing, because I thought surely we'd be here during winter, and it does get cold here. But it's been warm and looks to stay that way for a couple weeks at least. I hear the daffodils are blooming at home. They're my birthday flower, and I get a little possessive that they should bloom in March and not before. It will be so odd to return home soon and transition back to summer again. We can't wait.

With the white count so low, we've kept mostly to ourselves. Slowly, slowly we will be able to get out and explore.
Maybe, in our final days here, I'll have some more adventures to relate. Until then, Dom's blending up yet another soup concoction he's made, and I've got some binge watching to get back to.

Thinking with fondness of all our dear friends who walk with us.

Meanderings

Settling in to this new chapter, Dominic and I are never sure what to expect. We are on day 55 post transplant. It feels really good to be heading down hill.

We have daily discussions about how he's getting his strength back, how surprising all of this has been and how for the rest of our lives, we will be on high alert.

He is doing really well. We do get our hopes up that we'll be released to home before 100 days, and then try and just be in the moment.
We try and walk outside every day. We walk through the neighborhood and zig zag up and down different streets so I can look at different houses. Occasionally, we see a kitty, and I stop and will them to come to me. They look at me with barely curiosity and start grooming or run away. Dogs are all on leashes, and I tell them how handsome they are, but their owners never stop, I think because they see Dom masked up and it's awkward.
 Yesterday, we drove to another nearby neighborhood where every house could be in a movie. (Or a Thomas Kinkade painting. I like even those houses, much to Dom's dismay.) There were no for sale signs, and I suspect that once you arrive in this neighborhood, you don't leave.

I marvel at the amount of trash we produce (as well as dirty dishes). With our strict dietary guidelines, we're using a lot of single use packaging. It kills my tree hugging heart, but it's only for now.
Urban living is quite new to me. I've been so sheltered on my hillside for so many years. We park in an alley and there is very nearly every time someone out there digging through the trash. Dom is drinking a lot of bottled water, so I thought I'd do our outdoor neighbors a favor and put all monetary recyclables in a trash bag separately. I put it right on top feeling almost like I'd left this nice gift. (How twisted is that?) The next day, I noticed not only did they take the bag with all the bottles. They also took the bag that held all the non-monetary recyclables, and left those things in the yard waste bin. Then, I noticed a box label that one of Dom's prescriptions had come in, lying on the ground, and rational or not, I felt violated. I usually tear his name off prescription bottles and boxes and crumble the labels up into the stinky trash. I don't know. Something about his name and condition lying in the dirt got to me.

Dominic is feeling so much better, that some days, he makes his breakfast, or dinner for both of us. The prednisone to combat graft vs host disease has him eating like a bottomless pit. We were warned that many people have difficulty with appetite during this phase of treatment, and struggle to get calories, so I'm encouraging the current eating status.
We watch everyone at the infusion center. We note everything. Who is eating, who is coming in in a wheelchair, who gets in a chair, immediately reclines, gets a blanket and sleeps. We note that some people look really well. We talk with one of the patients who lived next door to us in the hospital and encourage one another. We know she was cut down to 3 visits a week and then bumped back to 7 due to a complication. We know that could happen to us too. We hope not, but the knowledge keeps us from complete relaxation.

But, we are trying to relax into this. Dom has the football on his phone right now, and is editing some images on the desktop. He's so eager to get back behind the camera. I'm eager to get home and tackle some of the clean up around the ranch to make it a little safer should there be another crazy fire next summer. But, while we're here, we watch a lot of Netflix. I'm able to work remotely, and while I'm in no way earning the big bucks, I'm happy I can stay on top of things. I had a conference call last week with someone from Canada and Dominic and I were both impressed with his way of navigating some at times challenging communication. Oh Canada. Wishing I still had relatives living there.

We're thinking that Dom is feeling well enough that we may start exploring a little more, as we did yesterday walking in a different neighborhood. This flu thing hitting everyone has us very wary. I was feeling really good about our hygiene. We wash and sanitize all the time. Now it seems, that is not even enough. I just read this flu may be spread just by breathing in someone's germy breath. Ugh. I'm contemplating wearing a mask when I go shopping. I've shot a lot of scornful looks lately. I finally broke down and got a flu shot. It was a huge and complicated decision for me. As I filled out the paperwork, I asked a couple questions. The pharmacists mistook my hesitancy for fear of the needle. While having a needle shoved in my arm is not my favorite thing, that really was the least of my worries. I shared with them that if my husband could endure 7 months of chemo and lumbar punctures and bone marrow biopsies, I could handle a little needle. It's what's in the needle....which, incidentally, I broke a needle getting booster shots when I was about 5 years old. I was so tensed up, I flexed an arm muscle and that was that.

Mean while, Dom's beard is growing in fast and furious! He has had to shave several times. His eyebrows are nearly in. He is at a stage where they're a little wild. (Shhh....don't tell him they were a little wild before all this happened.)

Part of the journey

I'm hesitant to write this post, and yet, I am using this blog to document all of this journey Dominic and I are on.

I share this not in any attempt for sympathy, but to serve a larger story. The story of how we treat our health care, and how very big the journey really is.

I was over the moon with our airbnb I snagged for the 100 days we're required to live within 20 minutes of the hospital. I spent hours trying to locate a place within walking distance, as I did not want to be stuck in traffic on a freeway should Dominic be sick along the way. We gloated as we were door to door in less than 10 minutes. We crowed to the nurses how happy we were with our place. I made sad faces to the other families in our shoes who had not found such great places.

Then. The reality set in. I waxed poetic on a yoga group page how when we drove by to see the place before moving in, there was a yoga mat hanging over the porch upstairs so they must be good people. Never mind the champagne bottle right next to it. Never mind my experience with yoga people includes like any other group, the good, the bad and the ugly. And. As it turns out, that bottle was a harbinger of ugly.

The first week we were here was Christmas. I assume it was perhaps not as noisy because the kids went home for the holidays. We'd hear blaring music throughout the day, but just suck it up. Then, New Year's Eve, the party lasted until 6 am. I kid you not. They did go to a bar somewhere in the night, and I caught a couple hours sleep. I thought when I was awakened by shouting and thumping and blaring that it must be midnight and they had been home and quiet since ten, and were just celebrating and didn't mind so much being awakened to ring in the new year. Alas, it was nearer to 2:30 and clearly, the clown posse had just rolled in from the bars. I frantically tried to sleep through the wump wump, and finally, at 6 am I gave up and got in the shower. It was all quiet when I got out. I've said this already, but if I had known taking a shower would shut them up.....

So. We didn't say anything. It was New Year. A one-off, right?

I tried to imagine, in the afternoons when elephants would pace for hours at a time in clogs on wooden floors that perhaps a fantastic chef lives upstairs and is just working magic in the kitchen. It didn't really ease my irritation. But I tried.

The dryer is broken. It doesn't shut off. I set a timer when I put the clothes in. I remember when I met the host of the airbnb how shocked I was when she showed me the shared laundry facility and there was rat feces on the wooden counter and the floor. She knew we would be immunocompromised, and need a clean space to live. I think she hoped I wouldn't notice. But I did. And was so worried about having a place to live, I didn't say anything. It's heartbreaking to think this is how so many people live all their lives. So worried all the time and not being able to speak up for oneself. Anyway.....the dryer doesn't shut off. One night, the noise of the dryer woke me at 2 am. Had it been running since the evening? Was the person doing laundry in the middle of the night? I lay there thinking about the full lint trap every time I'd done laundry. I lay there thinking about the dilapidated space the decades old washer and dryer was inhabiting. I lay there thinking about the fire that had decimated our city, and nearly burned our own house down. Finally, at 4:30 in the morning, I slipped on a jacket and scuffed out to the laundry room and shut the thing off.

I did this again, albeit earlier the next night. And again the following night.
The next morning, I ran into an upstairs neighbor scurrying up the back stairs with her pile of laundry (she honestly looked like a cockroach to me). I introduced myself, and in a considered way, told her that I'd been shutting the dryer off for her at night and did she know it doesn't shut off, and I hope she's okay with me touching her laundry to make sure it's dry. She looked at me wide eyed and said she thought it had suddenly started turning off again. She'd be sure and tell her room mates...She asked if we'd moved in down stairs and I explained to her that my husband has just undergone transplant surgery and we are living here to be near the hospital. I didn't tell her what kind. For all she knew, he could be laying in a bed right below her with a brand new heart or liver. Whatever the case, I told her we are here to recover and be medically safe.

And with that information, she proceeded to host a party, less than a week after what I thought was a one-off, one that lasted until 4:30 a.m. complete with thumping music, people smoking and yelling outside our window, and what sounded like wrestling and kettle bell dropping. They hit the bars from around midnight to after 2 and we hoped they'd actually been reasonable and shut it down at midnight. Nope. They're gone just long enough that we could fall asleep and be jarred awake upon their return. I later found out it only ended at 4:30 because that is when the landlord called them to shut it down. Who knows how much longer they would have gone. Till I got in the shower at 6, I assume.

I'd met our other downstairs neighbor last week. I really like her. She's friendly but not nosy. She and her husband have two small boys who sound like they are well loved and cherished. They had Christmas lights set out front and lots of Christmas cheer all around their small entrance when we moved in feeling beat up and ready to relax and recover. I told her we love to hear the boys playing outside throughout the day. I was warned by our airbnb host that the children next door might be noisy. The babies noisy??? The neighbor and I commiserated about the noisy upstairs and how we don't like to complain but....something's gotta give.
Here's what's funny to me. The woman next door is kind of rough looking. She has short punkish hair, tattoos in obvious places like right across her neck, while the baby girl upstairs when not looking like a cockroach looks like the girl next door, all blond and blue eyed and generic looking.  Just goes to show about books and covers....

I've contacted my host. We may be looking to move. I'm not sure yet. I met with the neighbor earlier today, and heard she and a third neighbor contacted the land lord who "texted" the group to shut it down after 4 am. We'll see how things get resolved.

Meanwhile, Dom and I are kind of miserable today. We dragged our tired bodies to the infusion center, and I could cry for my husband undergoing so much pain and misery even without selfish animals upstairs. (I mean, come on, you can't be ignorant enough to not know blaring music and yelling and thumping on hardwood floors is not going to be heard. Especially since they've been complained about before.)
We told everyone who would listen how miserable we were. Except the other transplant patient we lived next door to in the hospital. I didn't complain to her. Until she told me her situation. She opted for an Extended Stay nearby. I believe it was setup by the American Cancer Society. She found a cockroach in her place. (An actual one and not a scurrying human). She thought I'd found a great place and I clarified that for her. The ACS is frantically searching for a new place for her and she is prepared to have to move weekly or even nightly as different hotels can accommodate. And none of it is free.

The Social Worker and our Transplant coordinators are furious about the cockroach. For an immunocompromised person, a cockroach can mean death. Flash to the rat feces in our shared laundry facility.  Flash to me mentally taking inventory in our pantry and hoping we're at least cockroach free.

So. What to do with all this information....I don't know. I'm processing. Most of the time, I try and see the good in things. And of course I have a never ending well of gratefulness that so many people have made it possible for us to even be able to live here at all. I don't know what we would be doing otherwise. People are turned down for transplant if they cannot find a place to live nearby. But I think about the stress of cancer, and transplant, and unemployment and dealing with medical insurance drama....and then this. I think things need to change round these parts. I'm wondering if I know anyone who is a grant writer. I'm thinking there needs to be a place for people to stay in these situations. There used to be, but management in the hospital decided they didn't want to be liable. There are facilities available to patients at Davis, but not to Sutter. The most help available is through the ACS, and they are extremely limited in resources. As revealed by the cockroach story. I'm thinking that after such a furious fire in Sonoma County, and so much poison in the air, there's going to be a heavy influx of people needing treatment for cancer. I'm thinking a smoothie and cutting out sugar and eating garlic and whatever other wonder cure there is out there is not going to stand up against the ailments that are going to come out of our toxic environment.

I'm not trying to be doomsday. I'm just reading the signs.

I'm thinking that I'd like to be able to create an airbnb system for people who are in our shoes. I'm thinking the need is only going to get greater. I'm thinking this journey is not mine alone.
I'm thinking a lot right now. I'm thinking an aspect of this journey is still only in its infancy. I'm thinking there's so much to be grateful for.

*Addendum: We barely heard a peep yesterday. Whether it was because they were too tired to move or gone or because the landlord read them the riot act, it was blissfully quiet. We slept like babies. Now, if they can just keep up this quiet for a little while,  I can handle another party in the future (just not less than two weeks in the future.) We shall see.
*Addendum 2: The woman I'd met from upstairs came and apologized. It took a lot for her to apologize.
*Addendum 3: I think the woman upstairs apologized and got my number primarily so she could text me less than 2 weeks later to tell me it's her birthday weekend, and she'd be having a few friends over, but she promised she would not let them turn the stereo on. I, in what I thought was generosity said be as loud as you like until midnight. Which they did. We were awake until it got quiet around midnight. But, as I'm sure you've guessed, around 2:30 and here we go again. This time, I bundled up and met with the usual suspects smoking on the porch and asked to speak with anyone responsible. Cassie came out. Did I tell you her name is Cassie? I didn't, did I. We share a name. When she introduced herself as Cassie, I said I'm a Cassandra that has been called Cassie. She said she is a Cassandra, but she only pronounces it Cassondra. For those of you that know me, we've long had fun with my name, and when people ask me which way I prefer, I say I don't care, just don't call me Cathy. (Which a family member of a relative did for many years.) But she is a Cassondra. Got it.
I digress.
There I was, on the porch of strangers at somewhere around 3 in the morning, feeling a little faint because somewhere these past eight months I aged eighty years and turned into a little old lady. I explained to Cassie that had she been honest about her intentions, we may have rented a hotel. (Not true, really, but...) I did buy ear plugs, that turns out were worthless. (I didn't buy the blue ones as a wise friend recommended.) I felt like the crotchety neighbor that everyone in the party probably hates now. I felt like the get off my lawn guy. I felt like a horrible party pooper, and at the same time, the people on the porch had been told about Dominic, and yet there we were. Discussing the music blaring through our apartment in the wee hours. They can't know that the fabulous amazing music that sounds so great to them is only an insidious thumping by the time it gets downstairs.
The music was turned down this much, (for a visual, please see me pinching my thumb and forefinger completely together. That space between my fingers is how much they turned the music down.) I texted her at 3:30 and basically let her know her word means nothing to me now. And then the music stopped. Just before 4.
And I'm reminded again that so many people have no other choice but to live this way constantly.
Like the family of 4 living next to us downstairs, trying to get by.
Urban living. We've been spoiled in the country.

2017~The longest decade of my life. (John Pavlotvitz)

I cannot begrudge 2017 for what it took.  For in the taking, it gave so much.

There will also likely never be a more memorable new year's eve in our future as the one in which we made our way through our temporary new routine in our temporary apartment in our temporary city.
If you don't understand that nearly everything, in every year is temporary, perhaps now is a good time to begin embracing the concept. And while recognizing that so much in life is temporary; we see things of value are eternal. Love is eternal.

We celebrate the good things in life, but can we celebrate when things are not so good too?

I would never wish our experience on anyone. But, since we're here....

This is the year friendships were cemented. The year that friendships were renewed. The year that introduced us to so much kindness. The year that softened some of the edges of life.
The year that people astonished us in so many ways.
This is the year that while chaos surrounded us in a life-changing diagnosis, in our government, in our world, on our planet, we could rest comfortably in the now. It's always now. And in the now, we knew there were countless people praying and chanting and hoping and loving. In the now, we knew we were powerless to change anything by ourselves. In the now, we knew we were held.

This is the year that people sacrificed their own comforts and leisure activities to give to us.
This is the year that people sent us cyber flowers because we could not enjoy them in our home.
This is the year that Facebook introduced heart emojis as a reaction, and there just weren't enough hearts to express my gratitude for all the loving thoughts and care we've received.
Or enough hearts for all the good I've seen in the world.
This is the year that in our little city, people experienced tragedy, and in the face of tragedy, stood strong. This is the year that people stopped and looked each other in the eye a little longer. Strangers shared their stories and realized they had things in common. This is the year that saw greater political divide. Except in tragedy. No one cared who you voted for in flood or fire.
This is the year Santa really did come to so many children who'd lost so much. He left gifts using the hands of people who couldn't let Christmas go by without doing for others.

This is the year I have so much to be grateful for. I'm in no hurry for 2018. I don't want it to be 2017 forever either. This is the year that nothing matters and everything matters. I used to think each year was like a chapter in a book; a way of referencing what is happening in life. I'm not sure that works for me anymore, as this year had several chapters. The cancer chapter. The chemo chapter. The fire chapter. The transplant chapter. The recovery chapter. And those weren't even the first chapters in this volume. There was a chapter for visiting family overseas. And a chapter for teaching yoga, and branching out in photography. There were chapters of gardening and exploring and enjoying. There was a chapter of his family meets my family and it's beautiful. Perhaps each year is more like a volume, and some volumes have more chapters than others. 2017 is definitely a heavy volume. And we enter 2018 hoping for the best a year can offer, but somewhere deeper down, I am hoping 2018 will elaborate on the chapters of kindness. I am hoping that 2018 will elaborate on the new chapters of friendships that have blossomed, and that whatever chapters are contained in 2018, I can find appreciation for them.

Sometimes the years can seem "like a quick succession of busy nothings." Sometimes they can seem like a "decade". Sometimes, a year is like a large rock in a river, totally changing the course of the river. But the river still flows. The one thing that is consistent in every year is life happens. In big ways. In small ways. The flow of life continues. I want to appreciate all that life is. It gives and it takes.

And as I reflect on all that life has brought in 2017, cheers to all of you who have left an imprint on these chapters of our lives. Cheers to all of you who have been our life line. Cheers to the years that ask the questions, and cheers to the years that provide the answers. Cheers to this year bringing some of both. Cheers to 2017 and all the beautiful people it contained. Cheers to 2018 and all the hope I approach it with. Cheers to you, and to some day in the future I can look you in the eye and say thank you for being part of 2017.  With much love.

Happy New Year!

A Rash for Christmas

Who would ask for a rash for Christmas? Who would even celebrate a rash for Christmas?

We would.

We'd already enjoyed our Christmas Eve dinner with my mother. We woke early and discovered that Santa still brings stockings to grown ups even when they are away from home. Stockings are one of my favorite parts of Christmas, even if their contents include items that are in the pantry most of the time anyway. And one can never go wrong with chocolate. Fortified with the joy of giving and chocolate, we made it to our 8 am infusion appointment. While Dom got his magnesium, I took my mom on a tour of our last seven months. I wasn't prepared for the tears that welled up as I walked with my mom down the hallways I'd so frequently walked with her on the other end of the phone. It amplified for me that we are never really alone. She met some favorite familiar faces, people giving up their Christmas to care for others, (and let's be honest, over-time is nice).....but they all worked graciously and I'm so grateful for them. I collected my hugs and we returned to Dom.

Who'd been slowly developing a rash. A rash on Christmas Day that to us served as a sign of the gift of life that Dominic has received.

A rash is a sign of Graft Verses Host Disease.
Some doctors see mild GVHD as a sign that the new cells are fighting any residual cancer cells. Risks of cancer returning after transplant are lowered with signs of early GVHD. We'd hoped for a sign. We asked for a sign.

It's funny; I had a vision yesterday. It came completely out of the blue. Not thinking of the technicalities of this process, or really any specifics at all, I was just walking; I saw some of the cells in Dom's body exploding, almost like in a Star Wars movie, they just disintegrated. I had a flashback of the robot in the hospital that uses UV light to destroy germs. The woman who uses the robot described to us seeing the process under a microscope. The germs would literally explode under the UV rays like someone had taken a hammer to them and made them "splat."

I didn't think overmuch of this, but made it part of my constant prayer. My constant prayer being that his new army will win, and good health will be his.

We want so much for Dominic to get through this year with minimal discomfort and maximum healing. I want to see him able to live life to the fullest; even fuller for all we've experienced.

I called it our Christmas miracle; this rash that the nurses had a little meeting about and told us to keep an eye on. It could get worse. It could. But, I looked at Kathleen, and saw a twinkle in her eye, and somehow believe that as she said, it could be a very good sign.

And as with so many things in life, we must experience a little discomfort before the good comes along.

On this Christmas Day, now that the stockings have been emptied again, the cheese and chocolate have been consumed, we've bid farewell to my mom and the day is winding down, I think of how we've never been alone. Miracles can and do happen. And, we will be hard pressed to top this Christmas.

Merry Christmas to all. With much love from Dom and Cass.

Temporary Home

 

The last few days have been a blur! Monday started with a bag of delicious Christmas goodies from friends hand delivered with a great visit. After the visit, I packed up the car to unload in our temporary apartment. I went to a couple places to get groceries and bits and bobs for this next chapter. What is it? Chapter 3? 4? 5? Not sure. It's the next chapter though!

Tuesday, out came the arm pic line. I ran some more bags to the house

Dom's a little overwhelmed. He didn't see proper daylight for about a month, so yesterday was a big day on many levels.

We left the hospital with hugs and a touch of sadness knowing it's our last hospital stay. (That's a declarative statement. I don't want to hope it's our last stay. It just *is*).

He's content with our little apartment. It's very comfy. First thing was a cup of coffee. Also a first in a month. (Hospital coffee was a big no for him). He made himself right at home, no problem. 

I ran out again for all the things I'd forgotten the day before. I had to pick up his new prescriptions. I left the pharmacy with what looked like groceries. Seriously. I think one of Dom's biggest challenges at this juncture is the quantity of pills necessary to keep him going. The pills will taper off over the year; but for now, it's all pills, all the time.

This morning, we're back in the saddle at the infusion center. We will come here every morning around 8 to have all his labs drawn so the doctor can do a bunch of math equations and then we adjust medication accordingly. He'll receive any blood product he may need as well. It's a minimum two hour visit and can stretch to eight if he needs anything.

A dear friend told us to enjoy the next couple months and just relax. Ha ha! After our 8 am appointments, we will.

Our neighborhood is full of tony little restaurants. When we'd tell the same nurses who love to talk about the 100 days where we'd be living, they'd all tell us about the great restaurants. The 100 days is the minimum amount of days Dom cannot go to a restaurant. So. Um. Thanks for the heads up that we cannot go to a bunch of great places....But seriously, if you come to visit, you'll find great places to eat. There's also a natural foods market within walking distance. 

About a mile away is East Sacramento. You guys. I bundled Dom into the car last night for a Christmas lights tour. These streets are long and wide and have beautiful large homes set back off the street. If you love twinkly lights, this is the place to go. They wrap the city trees, and hang lengths of lights with a wreath in the middle across the street. Horse drawn carriages carry tourists through the neighborhood and booze crews cycle a big trolly through. It was quite the scene. I thought it would be a nice thing to do where he'd be safe in the car away from people.

 Looking ahead; there are still many milestones to cross and a long road to walk. It is recommended that he wear a mask even through the next twelve months. No yard work, or wood work. For those of you that don't know, part of our livelihood is mowing the tall grass where we live and pulling weeds. Dominic was feeling eager to gain his strength back and get back on the tractor and get on some piles of wood from some tree-work we had done. All of that will have to wait. It's essentially not just one year of work he is losing, but closer to two. We will do what we can, but this process seems to really be stretching out before us. 

As far as the transplant is concerned, he's doing really well. Unfortunately, some of the issues related to transplant do not even pop up until six months post transplant. Of course we're just seeing him healthy and well moving forward. But, it is also important to be vigilant in looking for any signs of change. We're so grateful for having been carried this far. And we know we will be carried all the way. 

On a final funny note, because I can't end this post thinking about the long road ahead, I leave you with this. I think Dominic is a model patient. I think I am a model caretaker. When his discharge nurse wanted to sit us down and explain the Neutropenic diet to us, I kind of wondered what he thought we'd been doing the past 7 months? I asked him about International travel next Christmas. He got a very worried expression, and explained to me that we'd have daily appointments for now and that we need to live nearby for the next 100 days. Yes. That is why we rented a place nearby. But what about next Christmas? That's well after 100 days away. Ohhhhhh....he said. I thought you meant this Christmas. This Christmas that is one week away. He thought I was asking if we could hop on a plane and fly over the ocean. You know. In between our daily visits to the Infusion center. It makes me wonder what kind of patients they take care of that this thought even occurred to him. 

I teased him about it the rest of the morning. Because that is how I handle stress. And nonsense.

We're about to be released from the infusion center. Netflix binge-watching, here we come! xoxo

Healing in progress. Or: How far we've come. Or just Shsss.

On a lighter note, and perhaps in keeping with my feelings of nostalgia, I will be bringing a party favor from the hospital.

Do you remember way back in the beginning, I noted my surroundings? I noted the signage outside our doors to communicate the patient's needs or status. Signage that clearly has become invisible to people, as often things we see frequently do. For instance, the red message "STOP see nurse before entering" is clearly not intended for guitar players or awkward teenage volunteers.

But I digress. I mentioned I have a souvenir I'll be bringing home with me. When we first arrived, outside some of the doors, there was a letter size paper hanging that said...well, here. See for yourself.

I still snort laughing when I see it. I don't know why, it just gets me.
It's just so earnest.

When we first arrived, I was in so much awe of everything, that I didn't want to be caught looking at a sign outside someone else's room, let alone snapping a photo. The hospital is constantly tweaking protocols, and  on a visit soon after, these magical signs were gone.

I told a nurse about them recently. I told her how funny I thought they were, and wondered where they went.

She couldn't even remember them, but I described it to her. I told her there was a person and a guitar. Later on I went to the restroom, and nearly didn't make it, because right outside the door, our very own Shsss...(sic) sign. We both snorted laughing at the thing. She said she couldn't find the one with the guitar. I said there isn't a guitar, I guess it's just implied in the photo. I think a campfire is implied too. Maybe even some Wranglers.

I think I'm comfortable here now. Must be time to leave.

Relief train and reflecting

I'm still riding the relief train, and occasionally crossing the track and jumping on the worry train. We know worrying doesn't solve anything, so quick as I can, I hop back to relief.

On the whiteboard where all Dom's numbers are written, and we eagerly watch numbers rise and fall, there's a number on the bottom now. Today's reads +12. That's how many days post transplant we are. All the numbers are doing their thing. Dom is doing his thing: Sleeping.

To look over and see the love of my life cocooned in his bed eyes closed, allowing regenerative sleep to take over, I sigh. Even as I write he stretches awake. The machine that holds all the formulas of all the liquids being carefully pumped into him seems to go crazy at night. The smallest air bubble, and the beeping begins. We've traded off, him waking and calling the nurse or me jumping out of bed heart racing and silencing the thing myself. We've both become pros at tap tap tapping the bubbles away and restarting. He's even more pro than I, going as far as opening the boxes and yanking that tube into submission.

On Wednesday, we will have been here for three weeks. In five days, it will have been seven months of this journey.

For seven months, I still find myself giving a panicked glance toward the lock on the door in the restroom that opens into the family room that has lately been more occupied than normal.

We don't know if the fatigue Dom is experiencing is from the transplant or lack of sleep, but I let him sleep as much as possible. I pad around in my slippers and pajamas even at noon in the corridors because I just don't care. There was a marathon here last week. One of our nurses ran the marathon. She has the prettiest voice, and I could talk to her all day. I think she could run all day. The route was just next to the hospital, on the side with the view. From 7 am till 1 pm, nearly all the streets around the hospital were blocked for the marathon. So. Our doctor arrived at 6 am for his rounds. You bet I was still sleeping. And so was Dom. And there we were all groggy eyed and hopefully covered and snapping to attention while Dom has his heart checked and his ankles squeezed. And when you've been awakened enough times by people coming in and out of your room, you really don't care anymore about wearing your pajamas in the hall. (Mind you, I'm not one of those people who wears their pajamas out in public. Those people do exist. I am not one of them. To tell you I don't care says something. I don't even wear yoga pants out in public. Unless I'm running into the market for a beverage. I put the yoga pants on, do the yoga and take them off. ) So, I'm sitting here in my jammies even as Dom has gone back to sleep, "for 20 minutes more".

I'm going to miss people here when we're discharged. Our friend from Santa Rosa is hoping to leave on Monday! He had his own stem cells transplanted the day after Dom, so it's an easier recovery for him. I'm going to miss his partner with the long white blond hair and perfectly cut fringe who looked like an angel walking through the halls.

I've met another woman from Santa Rosa. Her husband is the new full head of hair in the hallway. Her family is the very large family that would come and move into the family room. She is as sweet as can be, and has had to leave a two year old with her parents. When I see them pass our window, 7 months seems like so long ago, when Dom would walk the halls with his full head of hair. It's coming back. I'm sure.

I wonder what I do all day. My day is a blur of navigating Dom's needs or my own needs, punctuated by moving the car. He naps, and if the machine sounds off I race over to quiet it down. I go to the kitchen and run into the daughter of a patient and we commiserate about this situation. The hand of cards we've been dealt. I talk to housekeeping, nurses aids, dietary....there's a steady stream of people in here and I'm a captive audience. Or they are. Either way. The days flow into each other.

We're at the sore throat stage. It was almost a guarantee. The pre-transplant chemo packs a punch and is most felt in mouth and throat with soreness. Dom was feeling good for a couple days, but this has gotten him a bit low. He's sleeping a lot.
I think of his sister Sam a lot. She's the yin to my yang. I waffle between bad cop/good cop. I know Dom is exhausted and in pain, and I want to just baby him. I also know he absolutely needs to walk and shower and do all the things. If he doesn't walk and sit up, his lungs will begin to cave in on themselves and that's a set up for worse things to come. (Cave in on themselves is a medical term. Honestly.) Sam cheers him on from afar, and when I need to be soft with him, she can be the one to tell him to get up and walk. Or, when I need to be firm, she sends him all the nurturing love he needs. It generally works out that way, whether Sam and I plan it or not. 

I think of her at very particular and nondescript places, since she spent some time here. I think of her at a strip of grass just outside the parking lot. Every time. I think of her in the kitchen, knowing she carefully picked things out at the market to entice Dom to eat. I think of her every time I move the car and have to check in and get a name tag. We didn't need to check in with security and have name tags until she came. I remember walking into the room after she spent round 3 with Dom. There was a name tag on her cardigan, and somehow, I just associate that little act with her. We both miss her very much.

The nurses are about to change shifts. I really don't have one complaint. Our day nurses have been so understanding of Dom's need to sleep even during the day. They float in quietly to take vitals. Sometimes we get to chat and be human. I think Dom loves when people talk around him, and he can quietly listen and chime in as he feels the energy.
Tonight, we think we have Dee again. Dee is the nurse who made a joke about Dom's blood type and the need to just b positive as she swooped in our room one night to shush the machine. We've loved her ever since. And yet, she had never been our nurse until just this weekend. It was kind of a joke after a while. We'd see her in the hall and shrug our shoulders like, when is Dee going to be our nurse? And then of course, the night Dom spikes his fever, we get Dee. We were so happy to have her, and then I felt a twinge of guilt like hey Dee, we're the cool low maintenance patient....come be our nurse and run all night keeping the machine quiet and taking 15 vials of blood.

I wish so many times throughout the day that I was independently wealthy. I want to shower everyone here with gifts. For now I try to be as easy as possible, and always say thanks.

So here we are....so far away from seven months ago and creeping ever closer to the finish line.
And for some reason, I'm feeling nostalgic. It's difficult to think that a couple months from now, as we're tucked back into our little cottage, cuddling with our kitties and tackling the overgrown outdoors, I will be nostalgic for pieces of the most difficult year of my life. But it would be true.

Sweet relief, part one

The crash cart sits just outside our door.
The one no one spoke of.
The one I did not notice until after Dominic was surrounded by nurses and pharmacists and the doctor and the life giving stem cells had already flowed into his body.

They were coral colored. Such a beautiful shade.

I love our nurse Karen who walked us through this day. I'd asked for her. She's an absolute favorite, and I was so grateful she was the one with us today. Karen knows the way I roll. She knows that somewhere, long ago, we knew the dangers we signed up for having a bone marrow transplant. But, as Dominic lay in the bed, vulnerable, probably a little worried, we did not need to know that in some cases, a crash cart is needed.

I asked her if that cart outside the door was for Dom, hours later, after the ginger beer had been toasted to Dom, and he'd had a refreshing nap. She'd returned to take his vitals, as she had done every 15 minutes. She smiled and told us that indeed, the cart was for Dominic, as a just in case measure. "Do people really need it?" Dominic I guess hadn't really thought that far ahead. He was nervous, naturally. But the impact of the possibilities settled in.

I was worried the day we arrived. (Who wouldn't be?) But, we weren't in a room big enough for a cot  Not only was I overwhelmingly worried about this incredible event coming up, I was worried about the small stuff. My heart sank a little as I wondered if this day I'd been waiting and waiting for would be full of stress and anxiety for me due to the many personalities in the room. I wanted so much for it to be full of all the love and calm possible.

I spoke to the charge nurse on Sunday and mentioned I'd hoped for a bigger room. It's an interesting thing that Dom and I have been here so much that before I asked for a bigger room, I spent about ten minutes just shooting the breeze with her and two others, and we very easily could have been girlfriends out having a laugh rather than in this situation. She looked through the patient log, and apologized that no rooms would be opening. I then asked if she knew who would be working on transplant day. She read the names off to me. I'd honestly hoped she'd be one, I'd hoped for Nico or Aimee who are such familiar and wonderful faces. She read some names that weren't my favorites. Names I knew would make me a little crazy. Did I mention the nurse had to take Dom's vitals every 15 minutes today? So. It was important to me to have a voice here. When she read Karen's name, I brightened up. Karen. Yes Karen! All along, I'd hoped for Karen. (I have a cousin named Karyn, so I'm immediately in favor of Kare/yns.)

Karen was our nurse the day we were prematurely and incorrectly informed Dom's brother was a match. Karen didn't smash our hopes, but she was very level, and encouraged us to hold tight. She never blew any sunshine or shared anything too scary. She's just all the right notes of information. All the time. Whenever she wasn't our nurse, and I'd pass her in the hall, I'd be kind of jealous of her patients. Can you tell I like Karen?

When I heard Karen's name, I threw crossed fingers in the air and said please.

And a half an hour later, the charge nurse found me to let me know a bigger room was suddenly available. 

So here we are. Post transplant. It all happened so fast. Our dear friend came to be with us. She and I sat together as the nurses unpacked a giant box of life. They answered our questions as they spread papers out, put the heart electrodes on Dom's chest, and went through all the steps of preparing to change the course of someone's life! If I understand correctly, the cells are shipped in such a way that they maintain close to body temperature. Too cold, or too hot and they would die! Just a few degrees of leeway there. Our coordinator had told us, when I expressed fears that the cells would not make it to us that no matter what, even if all flights are down, they'll charter a private jet to get those cells to the recipient. It's really awe inspiring, this whole process.

The doctor was called, the white coats assembled, my heart swelled, Barbara and I were invited to be right next to Dominic, I looked for our theme song, I got distracted pressing play and low and behold, the tiniest little bag was hanging there half way drained before I realized what was happening! I'd made a whole playlist, and before the first song was even finished, this long awaited thing. was done.

I squeezed and squeezed and squeezed Dom. Barbara and I hugged teary eyed. The white coats had a cup of ginger beer and everyone shuffled out of the room. Except Karen, who so attentively cared for Dominic.

Here's some technical bits: They only intend to give him stem cells. Centrifugal force separates the stem cells from the blood cells. A trace amount of blood cells can be left behind. Since the donor and Dominic do not share the same blood type, there was a little more cause for concern. There was a possibility of him having a bad reaction that could range from a mild allergic reaction, shortness of breath, or severe enough to bring in the crash cart. (Worst case scenario, actual resuscitation.)

None of that happened.

And soon enough, my love was in a Benadryl induced sleep.

And I was giddy.

Barbara kissed Dominic goodbye and I have gathered my thoughts.

And this is what comes to mind:

All this time, all these months, there's been this thing nagging at me. Dominic's life in some ways was dependent on another person. Without being super literal, it's been like the quest for the Holy Grail. It's this thing we had zero control over. We could make all the chemo appointments,  take the pills, all the pills, pay all the bills, walk, eat right; but until that one special person stood up and said yes to the call, there was this one thing we could not make happen on our own. We were at the mercy of another. And so, we've been refined by that. The waiting. The wondering.

I know we have a long road ahead of us yet. There's still a lot of possible complications. There's still a lot of heavy lifting to be done, and mostly by Dominic.

But I no longer have to lay in bed at night wondering if someone would match, if someone would commit to the time involved, if someone would endure the visits for injections to stimulate marrow production, would agree to a catheter being inserted in their body to collect the marrow, and then sit for hours while it was collected. I no longer have to wonder if they'll stay healthy until they've donated. (And beyond. Boy do we wish this man all the very best.)

I also don't have to wonder if they'd collect enough. They collected more than enough. The remainder of cells are in cold storage, available should Dominic need a little boost along the way. This donor was above and beyond.

I don't have to wonder if something would go terribly, terribly wrong, and they'd rush him to intensive care.

I can check all of this off my list.

The last bag of chemo is done.

The wait is over.

The miracle has happened. 

We've leapt over an invisible fence and made it safely to the other side; the side of regeneration and new life.

We've been given the cup.

Now, we ride.

Thanksgiving~

I'm back in what has come to be our second home.
I'm sitting on the oh so familiar beige vinyl couch with a fluffy scarf around my neck and laptop, well, on my lap. Dr Kiwan says why are you always on your computer? Every time I come, you're on computer. He missed my handstands earlier, I guess.

We spent our Thanksgiving in the hospital. Most of you know this is where we'd be. Before we left, I baked some (gluten free) pumpkin pie cheesecake to bring for Dom to enjoy. I also baked some cakes and bread for our nurses and the people that make our stay comfortable: the nurse's aid, the gal that makes sure Dom gets his food orders, important people like that.

The refrigerator has become somewhat of a beast over the past six months. Somehow, in June, I owned that thing. Do you remember the front desk lady and I having a discussion about why can't I have my unopened bottles of bubbly water in the fridge for more than three days? I think I broke her.

This trip was the third (?) time there was a red target bag in exactly the same place on the door. As another family member and I unloaded on Wednesday morning, we had a discussion about the 3 day rule and the quantity of items clearly passed 3 days. She complained to the charge nurse who assured her someone would take care of it. I walked by and highlighted her complaint by pointing out that when we peeked in the bag, the contents were green. And furry.

Nothing happened.

Thanksgiving morning and the red bag lives.

How did you spend your Thanksgiving you ask? In no way is this meant for sympathy, but I spent my morning cleaning out a fridge in a hospital. Why not? I had thoughts of just throwing away the contents and leaving the bag for the owner, but when I grabbed the red bag to throw it away, it was stuck. Stuck I tell you. Some genius had thrown a bag full of poorly contained leftovers on its side and brown goo had spent, well, since JUNE creating a glue. The date on the contents was June.

See. I broke her. If I want my bottled water for a week, I guess brown goo gets months.

Thankfully, I had grabbed some latex gloves from our room. I pulled the disgusting shelf out and put it directly in the sink. Then, I found the bleach wipes. The bleach wipes in a container with a warning that it's not for babies. To illustrate the point, there was a crawling baby with flames coming out of its diaper.
It took the volume of water to fill a pool to get that shelf clean.

But that's what I did on Thanksgiving.
And I'm not sorry.

Even if a family of about 30 almost literally moved in that day. Even if they filled that fridge and left a cooler on the counter and a baby napping on the couch and food on every surface and kids sitting on the floor lining the walls. Even if I had a little girl of about seven staring at me as I made Dom's smoothie with my unapprovedbyelectricaldepartment hand blender. I smiled at her and she smiled back.

According to Dr Kiwan, who is here for Dr Carroll over the holiday, Dom is in the honeymoon period. He feels great. He should stay feeling great until about a week after the transplant. We're hoping he feels mostly great throughout the whole process.

Science corner: They used to be able to completely eradicate symptoms of host v graft. They've found that allowing a little bit of host v graft symptoms allows for less of a chance of recurrence of the cancer. Okay then. Whatever it takes.

It's a great relief to be here. Finally. We've jumped through a lot of hoops to get here. I've bitten a lot of nails. Each test of his organ function was a bit of a stress for us. The doctor is usually very serious. He's yammered off medications and expectations so many times he slips into a somewhat robotic and dry persona. He comes in head hanging low and Dom begins to panic. The fear creeps in that something's not right. Of course it's all good. His organ function is great. His CBC's are great. We know it's just one foot in front of the other, but honestly, I'll really breathe again when those baby stem cells are in and making their way to his bone marrow. Three more days. Just three more days! And once they're in, those little swimmers will take about three hours to make their way to his marrow and two weeks to en-graft.

I really wish you could have seen the Doctor play air guitar for Dom on Wednesday morning. I wish you could have seen the faces of confusion and what just happened amongst his entourage. I don't know what Dominic has tapped into with this man, but a side of him comes out that no one has seen before here. (At least that's the word on the street....)

So, maybe we'll play some punk rock on Tuesday as we surround Dominic on his new second birthday.

And, regardless of the origins of Thanksgiving, regardless of how many warm and wonderful Thanksgivings I have spent round the family table or hiking in the woods, this Thanksgiving is the best so far, because this marks a new beginning and there is so much to be grateful for.
I am planning on next year's being even better though.

Fire and Water

What a time this has been! Who ever could imagine all the twists and turns this year would take. You'd think a year ending in 7, a number with an almost right angle would not have so many twists and turns. One sharp left, maybe...but this has been more like a crazy 8.

This year began with nearly losing a kitty to an infection and a lost filling just before boarding a plane to visit Ma in England. I thought that was all the excitement 2017 had to offer. I thought I was done with major life events for the year.

Little did I know.

Then the diagnosis of Leukemia. Cue the screeching breaks.
I did a little reading and decided, somehow, we'd be done by summer and back to real life by fall.
Nope.
He needs a transplant.
I just kept doing math. Every setback was a new calculation. We'll be done by.....Christmas at least?
The final setback is really a set forward. We were scheduled for transplant in October, with a woman who is A positive blood group. We were so disappointed to find out our transplant nurse was over-zealous, and the Doctor hadn't settled yet; the woman hadn't even yet agreed!  He found a young man who he felt was a better match, and worthy of pursuing, worthy of another round of chemo to get all the ducks in a row. It was agonizing to watch the days slip away, to know Dom would be going through more chemo, to know our ideas of being done by 2018 were up in flames like tissue floating in the wind.

Up in flames.

Another twist in our journey. How does one manage cancer and evacuation? How does one come to grips with a parent losing everything in a fire whilst tending to an even more insidious fire, one called cancer that would seek to devour the whole body if left unchecked.

I spent last week bouncing all over the place, sifting through ashes for any sign of the things I'd lost. I've lost a year of my life, why not lose some odd antiques, my childhood stuffed animals, a pair of my grandfather's pajamas and my dad's favorite Miami Vice shirt? I'm sentimental that way. Those things represented something about the men that you would never even guess. Pajamas? Why pajamas? Because my Grandfather hung them on a red velvet rocking chair every morning, methodically, and they waited for him all day to change into them again at night. I don't know why, but it's one of my most vivid memories. And they're memories the fire cannot take away. I also lost all my journals through college. I'm thinking perhaps, as I pulled up just a spiral hinting at what once was, that those babies are probably better laid to rest. I cried when I pulled up bits of a vase I always admired that belonged to my mother. Most everything had disintegrated, but I could still see the painting on this vase. It was what I had hoped to find, and though it was broken, I could still identify it, and that was all I needed.

The fires were still making us nervous, even as most of them had been put out. There were trees still smoldering in the treeline behind our home. We had to call the fire station twice the week before we came back to the hospital, as we could see flames in the evening. Even as the fire was considered 99%-100% contained, those trees gave us pause.

And so we returned to the hospital for round seven a little beat up. A little worn out. A little emotional. (What is the reverse of hyperbole?)

On day one of this visit, we were given 3 possible dates put forward to the donor. And even those three dates were not a guarantee. There was a possibility none of the dates would work, and in that case, we'd need to continue rounds of chemo until a donation was possible. As many of you readers and followers know, the young man donor has come forward and agreed to the soonest possible date put forward for Dom's bone marrow transplant. We're beyond thrilled.

I had run out to move the car and explore for an hour or two. I was just grabbing bananas for Dom when he called and told me our transplant nurse wanted to meet. I hopped in the car actually peevish because we've been yanked around so much. What could she possibly have to say? She arrived to our room shortly after I did, and shared with us the wonderful news that we are scheduled for transplant. And she laughed because the donor let her know at the very end of a Friday, and there's so much work to do to prepare and it's Friday, so everyone was closing up shop, and there is so. much. to. do.

Dom's already had heart scans and EKG's just since 3:00 yesterday afternoon! They've told us all along that once we get scheduled, things will move fast, and they were not kidding!

When Katie left, Dom and I laughed and cried and hugged and I let everyone on social media know the good news. I had made a commitment to have dinner with our dear friend Edie who'd housed us during the evacuation, so I gave her a ring telling her I'd be just a few minutes late. (equals an hour)
I made sure Dominic was okay being left alone after such momentous news.

I got in my car and headed toward Edie's filled with joy, excitement and to be honest, apprehension. And then. And then. It rained.
The thing we'd been waiting for since the beginning of the fires. The thing we'd been waiting for since the beginning of our cancer journey, our personal ravaging fire. The thing that would bring relief. It rained on us yesterday people. It rained in every way possible.

And I? I'm latching on to that symbolism like a kid with a lolly pop.

There are things the fires cannot take from us. There are gifts the rains bring.
Holding it all in my heart, which is the only place to hold things tight.

Hugs for days

It has been one full week now. A week since Dominic could barely lift his head off the pillow. A week since I waited breathlessly to hear my Mom and her husband escaped the fire. A week of scouring maps and news and facebook to follow the fire's every move.

And Dominic and I are being so held. I want to share more about where we are, because friends, it's time for some light shining bright. Brighter than a wildfire.

After Leslie and her family performed triage, we made our way to another home. I wrote my childhood mentor and friend, telling her we were evacuees and snap, she'd arranged for us to stay with her 94 year old mother. Her mother still lives alone in her childhood home. As it turns out, the home was built the year Dominic was born.

I have been to this home before. I remember my friend Lisa telling me stories of her childhood, and her parents and siblings, and one year, she took my other dear friend and I to her home, over 2 hours away from ours for a family weekend gathering. It sounded so idyllic. I remember arriving and the excitement of being here, and seeing the home that had helped to shape my friend.

I teared up last week as I went up the familiar hall stair case and remembered the first time I'd studied all the family photos lining the steps. When I visited over 20 years ago, the bedrooms were as the kids had left them. One of the rooms was covered in posters; Hendrix and Beatlemania. All that's left is a thumb-sized newspaper clipping of Paul McCartney's head taped haphazardly in the closet. We've comfortably spread our bags out here, and as we move throughout the week and change our clothes and the tightly zippered bag lies open and untidy I breathe more and more easily as if a belt is being loosened around my waist.

We're so comfortable, tucked in upstairs. Dominic can rest when he needs to or just be.

But, the best part, better than being comfortable, is hugging Edie. This woman. Wow. She needs four hugs a day.  Sign me up.

I've never seen Dominic bounce back so fast after chemo. I guess when you don't know if you'll still have a home, and you are being dragged around at your wife's whim, you rally.
Edie is quite independent, but she has given up her car. So, she makes do with what she has, including visits from Meals on Wheels. She does have children nearby who are very attentive, but her independence is astounding. I took her shopping the first day so we could both have groceries.

Dominic has cooked two meals since we've been here. I'm so glad he has someone to eat fish with. We sit around the table and visit and I'm sure it's been so healing.We both love hearing stories of her life.

She has been a nurse at a camp in the mountains for ever. She continues to go as the camp nurse, every summer. Think about this, the little ones that she tended to are now in their 60's at least! They return and look for Edie and all is right with the world.  Everyone is greeted with hugs.

When I hug Edie good night, I feel an extra smattering of special. The hugs she has given throughout her life do not cheapen their value, as things are so often cheapened by quantity. To the contrary, being just one of so many increases the value. This woman who has touched so many lives, who has raised four amazing children, and then there's her grandchildren! This woman carved a space for Dominic and I. To get to be in her home, in her life is one of the most amazing chapters on this journey full of hope and amazing.