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.

Sunday, December 10, 2017

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 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.

Tuesday, November 28, 2017

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.

Saturday, November 25, 2017


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.

Saturday, November 04, 2017

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.
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.

Tuesday, October 17, 2017

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.

Sunday, October 15, 2017

Fires rage on

Remember a while back when I requested that you buckle up because this was going to be a wild ride as I process the wave of emotions walking with Dominic through cancer, and a bone marrow transplant? I had no idea then just how bumpy this ride could even get!

Most of you know by now that our house is under threat in one of the worst fires in California’s history.

As Dominic and I were in Sacramento when the fires happened, we stayed in Sacramento to ride it out. So grateful to our several friends who have offered to take us in. We’re currently residing with an old friend from high school who I have not even seen since. But we’re friends on facebook, and I’ve so enjoyed her and getting to know her and have been wanting very much to visit with her. Well. Not this way. But what a treat to meet her girls and her husband and her pets even. Don’t tell her, I am stealing all of the doggies and kitties. (I am editing to say we are now with another friend in Woodland. I will definitely write about this lovely experience.)

I’m still sleep deprived, still delirious, still not eating much. All things I ought to be taking care of so I can take care of Dominic.

I thought I’d try to return home to retrieve what I could. I’d heard my neighbors were going to try.  But just as I was getting out of this completely foreign to me town, I got a call that it’s just not worth the drive. I likely wouldn’t get to the property and my friends, my angels would fetch what I really wanted. Which turned out to be cat number two.

It hit me as I was walking through a Winco grocery store. Ya’ll. We don’t have Wincos in Santa Rosa. I go to tiny little markets so I can move around quickly, get what I need, and get out. I don’t need a thousand options. And I certainly don’t need camping gear. I just need one quality thing.
Anyway, I was walking up and down the aisles and I can’t read any of the signs above each aisle telling me what’s what. Not even squinting. I just can’t see. I realize that I’ve been scrolling or crying non stop for four days. My eyes are shot. This store is huge and I can’t figure out anything. I went in for pineapple juice and before I knew it I needed a cart. It’s not that they had great stuff. It blew my mind how not great it was. It’s just that I couldn’t even think straight. And I realized I’ve had this feeling before. This deep heartsick feeling of helplessness. Sometimes, when you do the most common activities after your circumstances have changed dramatically, the activity becomes over whelming and all the existential thoughts about life start churning. How could Dom and I be facing such great loss again?

I felt a heaviness akin to that which I felt while walking toward my car in the parking lot of the hospital and still not comprehending what was happening after the Leukemia diagnosis. I thought I would lose it in the great big cavernous weird store that was culturally so different from my beloved town, and I just could not. My mother has lost everything, and mingled in her everything are some of my things, things from childhood she kept for me and things she liked so much that I’d inherited from Grandparents and Dad that I let her keep them. I grieve for her. I grieve for me. I grieve for so many.

I see my friend after friend referring to their packed bags by the door, waiting for updates on the fire. This is how Dom and I have lived the past 5 months, bags packed by the door for a fire in his body. Any fever, as you know, could mean a race to the hospital to beat sepsis and even death. I am well acquainted with bags packed by the door.

I plowed in circles returning to places I’d already been, realizing something else was needed for this unplanned holiday. Yet another unplanned holiday in this already overbooked season. I kind of feel responsible for this fire, because as I’ve mentioned before, I lay in bed at the hospital with great concern of what if there is a disaster and Dom and I are separated from family? And that is what has essentially happened. No way to call my Mother for days. Not knowing if her house still stood. Mapping out routes to get to places and having to drive great distances in circuitous routes due to road closures. I wanted her to drive to my house the morning after she evacuated with nothing. No bedding. No treasures. Just her life. She could could not get to my house even if she wanted to. And that is just as well as my house was soon to be evacuated as well. That was a story I read over and over. Folks evacuating to a friend’s only to be evacuated from there. That is how intense and crazy this whole thing is.

Today, Dom and I don’t say it can’t get any worse. We wondered if it could get any worse once we knew he’d need a bone marrow transplant. It could. It did. And yet, we’re okay.

When I pulled up to the Winco, there was an older man in a mobility scooter with a Marines baseball/trucker hat. He looked desperate as the alarm of his truck was blasting, had been blasting the whole time I sat in my car texting updates. I asked if he needed help, and he asked if I could help him. He’d locked his keys in his truck. I called Triple A and sent for help. I asked if he’d already done his shopping and he hadn’t so I sent him in to do that. I waited next to his truck and someone approached me with the hustle. The woman who had just so tenderly offered to help one man realized she was done. Toast. “You need to get away from me now” I told the hustler. I don’t even know who I was just then. My adrenaline was racing and I knew I just couldn’t.

Then the man in the scooter arrived back and we chatted for about 5 minutes before the help truck arrived. He said he he was so happy I was helping him because he didn’t feel well and needed to get home. Oh geez. I stepped back and said no offense, my husband is receiving cancer treatment that makes him very vulnerable. He cannot get sick right now. Then the man told me he has COPD. Oh….okay. He told me his throat hurt, and I said it’s because of the fires. What fires? He didn’t even know my town, my world is on fire. I told him how bad it was and that my mother lost her home and that he should be indoors because the air is toxic, even out here in Sacramento. He said he didn’t know what he would do if I hadn’t helped him.

I don’t even know if I should have helped him get in his truck and drive, as he pointed out the red paint on the side of his truck where he swiped a pole. He was sad about the scratch. Then, I watched him park his scooter on the lift and painfully moved about securing it. Every movement was through molasses. And I took his groceries for him and watched him walk to the driver side door using the body of the truck to assist him. I’m not sure if I did a good thing or not today……

My two cats have been rescued and are being cared for at Caroline and Brad’s. I’m so relieved they’ve been scooped up. One was rescued the night I barely slept. The night Brad and Caroline went back to the ranch to grab a few things because it did not look good at all. The night we were awakened to news our house stood.
The other was rescued yesterday and very chatty about his adventures. I’m so grateful to have my boys at least.

We’re not out of the woods. Winds are still a huge threat….and well…when is anyone ever out of the woods? I mean really? This life of ours…it’s precious. None of us knows anything about what tomorrow may hold.

Monday, October 09, 2017

The wind that made the snow flamed the fires

This morning, I was awakened to text and voice messages asking if I was okay. Rubbing my eyes as panic began to set in.
Currently, one of the most destructive fires is raging in California and my town is being decimated.

I immediately tried to call my mother, to no avail. She's in an evacuation zone. She is a ludite. No way to call or text.

I responded to the safety inquiries as efficiently as possible.

And cried.

I got my neighbors to gather Dom's equipment in case of evacuation. And my kitties.

I frantically tried to call my mom again.

Finally, a call came through and she is safe. My mother is safe. And that is all I know. That is all she could tell me on the borrowed phone...I burst into more tears. She is safe.

I've been glued to social network sites for news, inklings if my Mom's house is still standing. Inklings if my house will make it.

I've been in love with everyone. Every check in of safety. Every post of fear, agony, relief all of it. Everyone in my circle after circle after circle is my people. A nurse's aid came in and suggested I step away from the computer, but I couldn't. I needed to see my people. I needed to see people were okay. I needed to share in people's grief and fear. 

I've been thinking of how we live from one tragedy to the next. Even before today, even before my town is the one in the news being declared a State of Emergency, I'd been thinking of this. And now the tragedy is mine. It's right here. Literally in my back yard. And hopefully, no closer.

When your husband's life is on the line, the husband you've waited way too many years to meet, when he's giving all he's got to ride each wave of nausea and fight this beast, and we wait and wait and wait for a donor who will mean the difference between life and death, other people's tragedies are different. They're not less than ours. They're fuller. More robust.

Even before this diagnosis, our hearts would ache for others. I was just the other day thinking of the devastating fires a year or two ago, and how I gathered some of my nicer things for a family and was wondering how they've managed since their great loss.  I had no idea what I could be facing.

Since the day our world turned upside down, we've watched many tragedies. We've struggled to comprehend how one day Dom could just be humming along in life, and the next day flat out. But still alive. While others experience the same humming along....and their life is over in an instant. There's no rhyme. or reason. One house is burned to the ground, the house right next to it is standing. It makes no sense. The fire doesn't judge. It just consumes.

We've looked at each other with a sort of incredulity as police officers are gunned down. Fires rage. Legends die. Hurricanes and floods and earthquakes take and take and take without giving back. Motorcyclists and bicyclists are taken out like flies under a swatter. A man stands in a window and shoots at people for no apparent reason, yet his bullets rain down and arbitrarily snuff out precious lives.  Wars and rumors of war. Angry mother nature.

And heroes are everywhere. They're in great big trucks plowing through floods. They're in fishing boats and canoes. They're laying over their wife protecting her from the spray of bullets. They're standing up to hate and choosing love. They're inviting people over to dinner. They're fighting fires. They're calling. They're bringing diapers to an evacuation center. For floods or fire. We all have the same needs. To have shelter. To have food. To have water. To have sanitation. Or, if you're my husband...and so many other people,  you have extra needs. Right now, he's receiving blood, finally sleeping after an agonizing morning of nausea. Somewhere, there's a hero who sat in a chair for an hour watching their own blood drained for another to have life.

And I couldn't hate a single person just now.

A friend of mine shared a photo of snow in Colorado this morning. A first snow of the season.  A lovely little sprinkling of snow that would be so refreshing in the North Bay. And just after seeing that photo, I read that the same winds that caused the snow in Colorado are the winds that whipped the fires to a frenzy in California.

I don't know what that means if it means anything at all. But I think it does.

The same winds that are responsible for frenzied fires in California brought a sweet little dusting of snow in Colorado.

My Husband's sister, my sister reached out to me as I was waking to this terrible news. From the other side of the world, before she went to sleep, she lifted prayers and love for us. She's praying for my Mother too. Because my mom is her mom. And she was like a sweet, refreshing snow from across the miles, across the ocean, across the globe. She is right next to us.

I don't want to mark my days by tragedy. I don't want to think about how we barely got over Texas before Florida before Mexico before Puerto Rico. I don't want to live in worry about my home burning down.  (Which is a worry I've lived with long before today.)

Another transplant patient calls this the year that wasn't. I'd fallen into that myself. But Dom stopped me. He doesn't want this to be the year that wasn't. He wants this to be the year that was. The year that he is reborn. The year that is. The year that the grass became greener and the sky bluer, and everything came into sharper focus.

And I get what he means.

And I agree.

With all that is going on in the world, I want to mark my days in love. I want to mark my days by heroes. I want to mark my days by sweet gestures of kindness sprinkling around like a refreshing snow fall.
I can choose to let myself be whipped up in a frenzy, or I can be a sweet snow fall.

Post Script~
One of my favorite hymns growing up has been on my mind and between my ears. Just the first refrain. Over and over. It is  the only way I can find peace. To know. In any case. That it is well with my soul.

When peace like a river attendeth my way.
When sorrows like sea billows roll.
Whatever my lot, thou hast taught me to say,
It is well, it is well, with my soul.

Thursday, October 05, 2017

What to expect when you're expecting or Gestation

I've teased throughout the course of this particular journey that Dominic is like a pregnant woman. It started with the watermelon. He had cravings.

Then, he had nausea. I'd lament to the nurses, all this nausea and no baby at the end?

Of course, I'm the one with the sympathy pregnancy. I'm stress eating and dutifully finishing up all the things he no longer craves. Oh, you're done with potatoes? I'll just go ahead and eat that five pounds of spuds. You're off cheese now? That's okay. I love cheese. Cheese is life. Bring me all the cheese.

I get so happy when he finds something that he really likes. I was well pleased the mornings in the hospital he started off his day with eggs, guacamole and the spiciest salsa. The white coat and company would enter what smelled like a taqueria and were impressed with his supplemented breakfast.

Dominic has been researching different diets and food sources, and on his good days, gets in the kitchen and tries new recipes. What a whole new world it will be when we're on the other side and he can eat raw food again. I think it will be a little like Christmas when he is free to dig into a bowl of blueberries. Or eat the honey harvested from the hives where we live. We look forward to these things like first steps.

I remind him there is a light at the end of the tunnel when the nausea gets intense. Some women are hospitalized due to severe nausea during pregnancy. And many choose to do it again!

We didn't choose to do this. And if we have a choice, we won't be doing this again. 

But, Dominic and I are intrigued by this process. When all is said and done, this process will be about the same length of time as carrying a baby full term. And there will be a new life at the end. Dominic will have a new life. And we will have a new life together seeing things with a perspective only borne out of a situation like this.

He has made a new friend; one of many. This friend has walked where we are walking. He has had the Leukemia, the chemo and the transplant. He is a survivor. There is a photo on our fridge with this man, as well as a transplant doctor and about six dozen survivors. We are not alone. Many have walked this path before us. And many walk with us now.

This man likes to remind Dominic that he is being remade on a cellular level. He will perhaps even have a new blood type. He will have a vaccination schedule like a newborn when we are released from the hospital. I've often dreamed of being a mother. I probably should have been more specific when I spoke with Santa when I said I wanted to experience all the new mom things.

Our bags are packed by the door. We're ready to go at a moment's notice.

For now, we've woven a cocoon around ourselves. In this sense he is both the baby in the womb and the newborn. We take all the precautions and seclude ourselves away for safety. But when the time is right, we'll fly the nest and adventures await.

The beauty of this experience, is that while Dominic receives new life, we are being better equipped to enjoy whatever life is to come. We are savoring moments. We're not even half way through this journey, but we've already come so far. We are looking forward to the new life to come, and celebrating a first birthday with all of you.

Friday, September 22, 2017

Sussing out emotions

I find myself sharing less and less. The newness of the hospital has worn off. The ups and downs of news has made me shy to share an update. It seems as if we've fallen into a foxhole. We eat our rations, and are on alert for news this battle is over, and weary of taking hits. So we sit. Quietly.

I woke with a big 'ol lump in my throat. Yesterday was hard, on so many levels.

Dominic is full of questions regarding the transplant. Sometimes the answers are useful, sometimes they are less than useful. He asked our irregular doctor about 9 out of 10 match bone marrow transplants. (Which is the best Dom is looking at currently.) The doctor said he has only ever performed 2 transplants which were 9/10 match. One lived. One died. Squeezed Dom's ankles for Edema and was out the door.

What we later found out is that the patient who died had died of congestive heart failure pretty unrelated to treatment....but we got to stew on the 50/50 chances for a while. We were both amused and horrified by this doctor's candor.

Last night, an older patient, across the hall from us, who'd been screaming in anger all day was being taken on a walk. Whatever he's going through has hit him so badly, he needs a walker and he is not in his right mind. I was wondering if they had him out walking past 10:30 pm to avoid running into people. Also, I think his nurse must be a saint. He saw me turn the corner in the hall, and all of a sudden  starts aiming straight for me. Which is on some level humorous, because the wheels of the racks holding fluids sound like baby walkers. All day, people up and down the hall way, and I keep expecting a baby to come wheeling through our door. I didn't know how to respond to this man heading straight for me somewhat like a wobbly toddler. He'd been screaming accusations and obscenities all day. His face was also an odd mixture of triumphant toddler and lost old man and innocence. He walked right up to me, full of wonder, and asked if he knew me.  A tear streaming down his face. I will probably never forget him. I wanted to walk with him and make him feel better, but protocol, and my lack of miraculous powers dictated I say sorry we did not know each other.
I returned to our dark room and let it all out.

But I realized something as I lay here early this morning, feeling the coils of this thin mattress poking me from below, and still grateful I'm on a mattress and not sliding off the couch.

I realized my grief is not the end, it's just the now.

Early on, we cried over the unknown. Then we cried over the losses we were facing. Loss of jobs, loss of freedoms, loss of false security in our health. Then I began to get this ominous feeling when I'd cry. I'd associate my crying with  something very bad about to happen. I'd twist my crying over what is a very difficult situation into the worst possible scenario.

Because something very bad is already happening. I don't need to borrow any trouble. I can cry because this is the bad thing. I don't need to imagine anything worse, because this all by itself is difficult. There's a sort of relief in identifying this.

I know this seems so elementary. Like duh, of course you can cry over this. But it's funny how we can allow our minds to start making associations. It's funny how the unknown can produce all manner of drama. It's funny how I can't just have a good cry because someone was rude to me without worrying that my crying is an indication the worst is about to happen.

I've always been someone who cries. Ugly cries. Why wouldn't I cry in this situation? Why wouldn't I be thin-skinned and emotional?

No one ever promised life would be easy. In fact we're pretty much promised it won't be.

As I just discussed with Dom, we're re-framing. This is what's required of us. We're not trading anything. We're not bargaining. We're not singled out to be victims. This is what's required of us. And there can be tears along the way. It's okay to grieve the journey, and always understand the journey is not the destination. We will get there when we get there.

Sunday, September 10, 2017

The world will be saved by beauty

Tahoe bound 2016

One of the things that gets us through this difficult time is looking forward to the future. Paradoxically, while we live in the moment we know this moment will pass.
We both live in the moment and we look forward to a day in the future when this whole business of chemo and transplant is a memory.

I have noticed that while I very much would love to visit Europe, what stills my heart just now is nature right next door. I realized it even more as the fires up north threatened Multnomah Falls, and my heart was breaking.
A shirt tail relative of mine took her girls on a National Parks tour and as I sat bedside in the hospital, my heart wandered with them. The photos that would show up in my social media made me swoon. They brought me comfort in an uncomfortable time.

Tahoe is just about two more hours from our hospital. I often want to just keep driving until we get there. I have also been to Tahoe enough times that the drive to the hospital is often mingled with faint memories of happy anticipation. Once upon a time, being in car on that highway meant traveling to beautiful Tahoe.
Being in a car will mean that again one day soon.

What's really prominent in my thoughts is the of beauty of Yosemite. In my mind's eye, I can see fields of wildflowers below the seemingly unshakable face of El Capitan. It feels like a strong anchor in this rough sea of unknowing.

The world will be saved by beauty~ Dostoevsky. When he wrote these words, I think he meant an even less obvious beauty than that of nature. The beauty of strength. The beauty of love. The beauty of selfless love. These are attributes of beauty. While I cannot claim selfless love, by any means; I can say that by Dom and I both allowing ourselves to be refined by this challenge opens our eyes to beauty around us.

There is beauty in kindness. There is beauty in gestures of thoughtfulness. There is beauty in people coming together.  The disasters in America are showing the beauty of neighbor helping neighbor. Our own
personal disaster is showing us the same. It's showing me over and over that the world will be saved by beauty.

Who is up for camping in Yosemite fall of 2018?

Tuesday, September 05, 2017

This highway

Dear readers: Just a reminder, I've primarily been using this blog to share my journey walking with Dominic through his cancer treatment. I do share more details about his journey in our group on Facebook. This is my place to process and share. (It's also my place to break all the grammar rules. Because I can.)

I love driving metaphors. I don't know why I do, because I'm not a huge fan of driving. At all. And this period in my life has me driving like never before. Well, except that time I lived in Orange County and drove to LA for early morning casting calls. I disliked driving then too.
I have generally always been the one to drive long distances to visit family. With exceptions, but it burned me out. All that driving alone.

It's so much nicer driving with a partner. This journey that Dominic and I are on is serious business. We have found it is better to stay positive, hopeful and kind. I share mostly nice things here, because that is how we want to see things. On that note, I've even made friends with the refrigerator police. Yes her. She has a huge smile for me now when I approach her for something. Because kindness with people is everything.

But I joked with someone a while back when she remarked how kind I am, or some such. I mentioned my real character comes out in the car. The real me that's not all dolled up for the blog, or for the nursing staff, or for our support group; that me can be vicious.  Do not cut in front of me as if I'm not also trying to get some where. Do not crawl up my tail or you will get the most vicious stare down. I will comment out loud and subject poor Dom to my every little thought about how horrible people are. I am not all love and light behind the wheel.

I do try to be a courteous driver. I let people in front of me with a smile. I stick to the slower lanes if I'm not racing at one hundred miles per hour. I keep a good distance between myself and the car in front of me. If traffic allows such.

If the gods are smiling on you, you will never have to be a passenger in my car though. You will probably be safe. But you will be subject to a litany of commentary.

I'm going to make a gigantic leap here. I read something this morning that resonated with all these thoughts I'd been having.
I think you'd have to have your head under a rock to not know that the world as we know it is pretty chaotic. It seems like a lot of people are in the midst of something huge. One of my favorite writers has a response for people who are tired of fighting. He, Jim Wright says he's tired of fighting gravity, but there really isn't an alternative if you want to stay upright. If you want a better nation, he says, you have to be better citizens.

I think that rings so true.

It's the little things that all add up. If we can't do the right thing in the smalls.....who is to do the right thing in the majors?

While one person has admired my kindness, another has categorized me as a goody goody, because I like to do the right thing. It's all perspective isn't it? Someone's a goody goody until that right thing directly benefits someone, and then they're all right. There's big challenges raging right now. Really big. Natural disasters, politics, and cancer to name a few. And while it's important to do the big things: to show up, to voice concern, to donate, to fight the fight and take the pills, it's also important to do the little things. The goody goody things. The Golden Rule things.

I like to remember I am not *in* traffic, I am *part of* the traffic. I am the good and the bad. I am the too fast and too slow. It reminds me of something I shared a while back. I was behind someone with all the bumper stickers. At a stop light, I was able to read a few. One said essentially, that if you can read this to back off, while another said something like if they're climbing up your a$$ to step on the gas....Essentially, this person wanted all the control. Don't drive too slow in front of this car, and don't drive too fast and tailgate behind this car. Now, aside of the ridiculousness of someone in front of the car not being able to read instructions on a bumper sticker in the rear of this car....this was a sad commentary. It kind of sums up one way of traveling. Go at exactly my speed, and everything will be okay.

The thing is, by design, we all go at different speeds.

I'm afraid to hit the publish button.... this feels so preachy. But, it's what's on my heart as I navigate through this journey. Dominic and I are trying to stay positive; but sometimes I feel like I'm faking it. They say your true character shows up under stress, and I worry that the real me is the one grumbling behind the wheel. As positive as I like to be, I also want to be transparent.

 It's also on my heart that people are full of beauty. The same person that is taking up space on the freeway could also be the person who brings a meal, or says just the right thing at the right time. I don't think there is any act of kindness too small. Maybe we can't cure cancer today. Maybe we can't all come to the same decisions politically. Maybe there are so many things falling apart. But, in times of stress, we are coming together. I know we can spread kindness. I know we can spread love. I see it  through this process. I have been so impressed by the many different people who hold us up and love us. Every small action really does add up. So, as much as I dislike driving, I'm so grateful it's just part of the journey. I'm so grateful for my driving partners. I'm so grateful for the traffic, that is really people doing life with us.

Friday, August 25, 2017

Holding our breath!

I have to write this here now, because we can't share yet!!!!

Nick is a possible match!

Happy dance.
Tears of joy.

Transplant Train, here we come. Woot woot!

They need about two more weeks of high resolution testing, and our fingers and toes are still crossed. If all systems are go, then we are going to sail into this!
Things will happen fast. And then the waiting game.

If he is a match, this was our last round of chemo!!! Our next visit will be for the transplant.

This is big, great news.

Now for the massive prayers and intentions that Nick is 100% and we can get on.
Maybe this time next month Dominic will be part Nick!

We're delighted.

Wednesday, August 23, 2017

My constant companion

Outside of Dominic, I have another constant companion. (As an aside, Dominic had other suggestions for my constant companion, but we'll go with what I've set out to share. Our humor may not translate so well.) My constant companion: a lump, in my throat, that I sometimes forget about until the simplest of things tugs at my heart. It's not always a bad tug. Quite often, it's a lovely tug. But, as you can imagine, emotions run high on this journey, and I feel all of them.

We were just visited by one of the nurses in training. We were his very first patient in the Oncology unit about a month ago. He got to meet Sam on her trip out here, and she made a friend for life. Tonight, he just stopped by to say good night and that he hoped he'd see us next time. He didn't have to. We weren't his patient today. He just wanted to. We love that.
He's a very tall young man. He's so earnest in what he does. He's like an amazing creature even larger than the one that stands before us. I mean, I just think there's so much more to him tucked away in that shy form. It tries to leak out through his fingertips, I can see, as his fingers seem to be moving to an invisible song, as if they are outside of him.

He always makes me smile. The people we would never have met had we not found ourselves in this predicament.

We celebrated with another nurse as I spotted an engagement ring. We heard the story and ooohed and ahhhhhed over proposal photos. How honored we are to share in this excitement!

I cried today with a young woman in the caregiver support group. She is a daughter, and I believe that's all I should say regarding her circumstances. I can't not cry as someone shares their fears and sadness. But I don't feel diminished for crying. I feel like this perfect stranger and I met and shared our hearts and are the richer for sharing.

One of the nurse's aids just makes me happy because she is almost not for real. She has a thick accent with a little girl voice that is almost a constant lyrical giggle. She hugs hello and leans up against the nurses when she's making a joke, like a school girl sidling up to her buddies. She is always happy, always infectious and always makes me smile. But I don't let that little girl voice fool me, as she stated tonight, she managed this whole floor. She works. Tirelessly. And we bid her adieu tonight for two well deserved days off.

I mentioned elsewhere, we participated in an awareness walk yesterday for Be the Match, a bone marrow donation registry. It was televised last night, but I can't tell you if I made an appearance with my cry face. It was the strangest thing. The walk was organized on the ward so that people in the ward could participate. We were whisked over from the Infusion Center, and the quiet into a bustling ward of nurses, doctors, patients and survivors. At the end of this, Dominic will be considered a survivor. As that sunk in some more, in those moments, I could not hold it together. Right now, he's my fighter. And he's already my survivor.

We had to walk slowly round the corridor to accommodate a recent transplant patient in a wheel chair, and another pushing his wing man. The local news station interviewed our doctor, and it seemed like his voice broke as he talked about how the simple act of donating marrow is the difference between life and death for some people. Both the gravity of his words and the feeling he had sharing them moved me to tears. And it wasn't until we reached the corner with the makeshift bowling set up, and the kid's weight bowling ball that I was able to shake the somberness. I guess there were words like knocking cancer out on the pins, and it really did have a connection to the event. But our "not a joiner" instincts kicked in. We looked kind of horrified at the whole set up. But, in the end, Dom bowled a strike, and so we are knocking cancer out.

Incidentally, I have a new night shirt. It's nicer looking than the neon green shirt I wore for a very awkward episode a few months back. It seems like a life time ago that we were the outsiders pulled in by the thinnest of threads, as I volunteered to lead a warm up before a different awareness walk. I didn't know a single person, I never did meet the person who emailed me, I never did find out what they wanted or expected. I was thrown on a stage to lead a warm up for a walk that was far from underway to a group of people who were still super busy taking selfies and about five people looked at me wondering why on earth I was there.

We try not to wonder why on earth we are here. To do that is just a road we cannot go down. So we resolve to be here. To be us, here, and love each other and everyone who walks with us, friend, nurse, whomever.

The finish line sign still hangs at the end of the corridor, and naturally our room is at that end as well. We're one room away from the finish line literally. I step outside our room, glance up at the sign, and hope that we're one room away from the finish line figuratively as well.

Saturday, August 19, 2017

Ducks in a row or Racing ducks

More often than thoughts of dread these days, I have thoughts of love.
I don't know if I'm in denial or very zen.

We have a long road ahead of us. My thoughts are not if Dom gets better, but when Dom gets better.
In order to get to when he is better, we're going to have to long distance run.

I feel like the first month was a sprint. The amount of information being thrown at us was intense. One of the people on our transplant team shared with us she likes to share the worst possible case scenario as standard, so when it's actually not as bad as all that, people are pleasantly surprised.
I get what she's aiming for.
But the amount of mental angst we go through to get to pleasantly surprised is maybe not really worth it. Because the only pleasant thing about this ordeal is how loved we feel. And meanwhile, I'm taking in all the information, and acting on it.

I sprinted to get the house clean, and set up for an immunocompromised person.
I sprinted to deal with insurance eventualities and line up appropriate help.
I sprinted to anticipate moving to Sacramento and all that entails.
I sprinted to tie up as many loose ends here at home as I could. We had many projects we were about to tackle this summer, and they all needed some attention, some clean up, some action.

And Dom did the biggest sprint of all. He has undergone three rounds of chemo so far. Three rounds already!!!! And a fourth round scheduled for this Tuesday.

I remember when we first got the diagnosis and I was mad doctor googling and looking for any hint of what was to come. I remember thinking, before the discovery of the Philadelphia Gene that I was so happy we would just be in and out, and not have to stay in the hospital for longer like those with other leukemias. Little did I know that we would have to actually move our whole lives for three plus months on top of the time we've already spent and continue to spend at the hospital, as well as day trips to the infusion center.

Those were innocent days.

And yet, I am so much better equipped than I was those first days. Our army of support has shown us both in love and action that we do not walk this alone. It's easy to fret about cancer. Haven't you ever wondered if some ache or pain was cancer? What was not easy to dream up was the amount of support we have received and that is the best reality of all.

Today is the first day in two months that I do not have something I have to address. (Except the transplant. That is a given.)
And not everything that I must address is a bad's just a thing. That I must attend to. A person I must be attentive to. A chore I must complete. There's been some lovely things. Our families for one. But, I'm finally feeling like there can be a return to normalcy. (Except, my heart started racing just writing all of this.)

I'm so grateful for Samantha's visit here. She arrived in the middle of one of Dom's worst episodes, and also on one of the hottest days of the year. Heat can be so oppressive. It completely embodied everything I felt at the time. Like there's no escape.
Poor Sam. She was dropped off after International travel into a little shoebox of a house with no air conditioning. Usually, the marine layer and oak trees keep our house from getting too hot, but she arrived during one of those magical heat waves our house can't recover from. I have no doubt the house was in the 80's-90's. The other thing is, our house rests at the edge of forests of oak trees and wilderness. Keeping the windows open did not seem like a viable option to her. Maybe a wise choice, considering the cougar I mentioned in the last post. And the coyotes. And so she tried to rest, in the heat and with the knowledge she'd see her brother the very next day. I think that pretty much sums up how the first six weeks felt. Oppressive worry and anticipation.

I was wound so tight when she arrived. And through her time here, through her love, and your love, and encouraging news, I feel like I've been able to unravel a little. Breathe a little easier. I was able to to enjoy my family more.

As the dust settles, as I check some things off the list, and I get to be a little more flexible with my time, I've been able to entertain how to communicate with each of you personally. I think of different people throughout the day. I think of different words of encouragement or advice we've received. I think of people I have not seen in 20 years or those I've never met who send us love and support. I think how lucky we are to run the race with you, and the joy set before us. And my heart is brimming.

Friday, August 11, 2017

Peanut butter on jelly

To separate plasma out of blood, a centrifugal force is used. It's called blood fractionation if you'd like to sound sciencey.

This past week I have identified a lot with the blood....spinning, and spinning, and spinning.

I received a message asking for an update, and realized I've not shared anything in a while. It's easy to sit and write in the solitude of a hospital. Though we were never alone, I could disappear into the woodwork, because no one was actually in the room to see me.
The miles I've journeyed are adding up figuratively and literally. No one drives and types. At least they shouldn't.

This ride is wild enough all on its own.

Sam's visit is coming to a rapid end, and I guess we're going to end our time together in a crescendo. I'd been feeling maudlin that she's going to have to leave us...and then my brother and his wife and daughter arrived and it's been non-stop.

Dom and I, as I've mentioned before, live in a teeny little house. We love being snug. We have a hide-a-bed loveseat that sleeps one, and a single bath room located in the bedroom. We've all been able to rub elbows in this small space with nary a problem.
We have our quiet rhythms and ways.


The Hess family arrived.

My brother is 6'6".  Somehow, we're all squeezing in together.

They have a large trailer and they're camping nearby, but they come to the house because Dominic really shouldn't be hanging around a campground just now.....

Before they arrived, our friend Elena came by with all the smiles and the treats to give us a good dose of happiness and positivity. So the party atmosphere had begun. (Now you won't believe me when I say we're really limiting our people exposure, but Elena really is our guru in this process.)

The night before our day of visiting was really rough. Dom couldn't even take his pills that night. I'll spare you the details. I was particularly bummed for him, because not only was he sick, but I'd made tacos just for him. He mentioned on the way home that day that he'd really love tacos. So I dropped him home and went out for taco ingredients.  He was napping when I returned and I immediately went into taco preparation. Sam and I imagined he'd wake with an appetite. No such luck. Sick, sick, sick.
So imagine my surprise the next morning, after he carefully tested the waters with some rice pudding, he said he would really like tacos. For breakfast. A big plate of tortillas, rice, beans, scrambled eggs, salsa, chicken and guacamole was presented and devoured. We just go with these things.

More yumminess was had with Elena, because the food magician cannot come empty handed.

My family got to meet Elena, and we basically spent a day in the living room snacking and visiting. I've been so long in hustle and hurry mode that I've probably forgotten the art of conversation.

I think my niece has a new favorite Auntie. Sam is really not her aunt, but those two took to each other like peanut butter on jelly. It may help that Cassie is adorable and clever.

The Hess family trip had long been on the books, and when this new wrinkle appeared, I had long conversations with my brother about our limitations and he decided to make the trip come what may. He was prepared to visit in Sacramento, should that be the case.

But, as it shakes out, we're mostly home.

He dropped my niece off yesterday morning, so she could be with us. Since we usually go on adventures together, I was at a momentary loss as to what to do. So, I lugged out the sewing machine that I could not figure out how to get the bobbin on correctly. I thought just maybe Cassie could figure it out, as she has sent us sewing projects in the past. Sure enough, she got that bobbin on, and before we knew it, she'd done a little sewing on something Sam wanted tailored. Now, I'm not saying if you inspected the article, it was expertly tailored, but I am saying we're pretty impressed. Project accomplished. Mom showed up about half way through with a bag of thread from my Gramma's stash that I somehow wound up with, and then Mom somehow wound up with... (Oh yes, I had high hopes of being able to actually thread a bobbin.) Some of the thread was on original old wooden spools, and it was fun picking through the time capsule.

I was so happy our two families just came together. I have a history of that happening though. I grew up with cousins that weren't technically cousins. It's really lovely to just embrace people.

We decided we'd all trek up to Healdsburg for the best bread ever. It was Dom's idea, as Sam hasn't really seen any sights since her arrival. We've been all business. And we've had some stressful business to be sure. Dom stayed home for some rest, and off we went. It was the first time he's been at the house alone in over a month. It was the first time he'd been alone....I can't even imagine. No one taking blood, no one poking, no wife looking at him with concerned face, just home in the quiet.

En mass, we arrived to Shed in Healdsburg, with the ginormous loaves of Country Sourdough French bread.We spent $14 on bread. We walked down the street to another bakery where my Mom bought yet another loaf of bread, because her loaf had to come from that bakery. Then we walked around the square and laughed at the prices of things and ate chunks of bread and walked into yet another bakery where Mom bought my favorite sticky buns.

I enlisted my brother to BBQ dinner, so we divided an conquered for that. Sam and Cass went for a swim at the neighbor's, Mom chopped veg, Jason BBq'd, Susan and I made sure the chips tasted okay and a we prepared for a feast.

The big news Sam brought to the dinner table was quite interesting. We'd been noticing coyotes around the house recently. My bushy tailed cats alerted me one morning when Sam and Dom were at the hospital. I peeked out the window to make eye contact with a coyote quite close and another one on its heels. Sam was quite proud of herself on Tuesday while Dom and I were in Sacramento. She'd noticed a coyote studying the neighbor's goats quite intently, and went out on the porch banging wellies overhead and being as inhospitable as possible.

We shared this with Bronwyn who promptly began researching local experts to figure out how best to deal with coyotes and keep the goats safe.

She wound up on the phone with a scientist who tracks cougars in our area. She gave him our address, and while they were talking, he entered our address, and low and behold, a cougar was visiting the ranch at 2 am that morning, wandering around the trash cans and the garage.

We tempted fate after dinner by letting the goats out of their enclosure and watching them frolic. Frolicking is always good.

So. What does this have to do with cancer? Nothing. Life goes on. It goes on with excitement and twists and turns. We battle the cancer in Sacramento, and nature does her thing in Santa Rosa.  We'd repeatedly told Sam not to worry about the coyotes when she walked between our house and the barn in the early mornings. Worry about the cougars though. Do worry about those!

We're trying not to worry about anything else. One foot in front of the other. It does feel like things are speeding up. We're beginning to look for a place to stay in Sacramento. We're hoping to be matched with a donor asap. Nick will be tested on Monday, and the search is on in the database. It's good that we're having all this family love time. Things are going to change even more dramatically soon, as we leave our beloved teeny home and settle in Sacramento for the last battle to get his body to embrace the new marrow. I'm hoping his body and the new marrow act like our two families, and just come together. Like peanut butter on jelly.