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.

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.

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.

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.

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?

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.