Tuesday, February 13, 2018

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.

Monday, February 05, 2018

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.





Sunday, January 21, 2018

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.


Sunday, December 31, 2017

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!


Monday, December 25, 2017

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.

Wednesday, December 20, 2017

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

Tuesday, December 12, 2017

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.