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.