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

Up in flames.

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

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

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

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

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

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

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

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

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

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

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




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.
Um.
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 thing....it'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.

Then.

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.







Wednesday, August 02, 2017

The hero and the hurricane

This journey is certainly not for the faint of heart.

I once had to describe myself for an on line dating site. (Shudders.) That was a very brief moment in time. I have friends who have lovely marriages as a result of on line dating, but for me, I just couldn't. It did, however,  make me evaluate who I was and am as a person.

I felt like the best descriptor of me is that I am not for the faint of heart. The kind of music I like, my life goals, my tastes; none of that seemed as important as owning my truth. I just wanted to be clear from the get go whoever wins my heart is going to need to be able to hold the hurricane that I can sometimes be.

Dominic said yes to the hurricane. He sees me, and I am more me than I have ever been when we are together.

And so it is that yet another hurricane has entered both our lives. While Dominic had a choice to say yes to me, (well, technically, I said yes to him), neither of us said yes to cancer. And yet, it came, uninvited.
It came in a hurry, and didn't give us any time to decide whether or not we'd like to do this dance. It flung open the door, barged its way in, tried to make itself wildly at home, and here we are packing its bags and sending it on its way.

Because the same man who can hold this wild heart of mine can fight cancer. He is not faint of heart, he knows that sometimes the path is not the one of least resistance.....there are things in our path we must resist. The same hands that can hold a butterfly without crushing it can swing an ax to wood and break it to bits. He has the duality of strength and tenderness that is everything to me.

I think of all this as I sit here in our bed, while he lies in a bed 2 hours away. I miss him terribly. I've left him in the care of his sister, and the 12 hour shifts. I don't know what I'll do while he is fighting over there and I am here. I'm sure my days will be full as I continue to work my regular job as well as get organized in preparation for the next chapter.

Our hearts have been tossed about and we vacillate  between a sense of foreboding and a sense of sureness. Our understanding of this process is refined on a regular basis. The information is coming at us fast, and we sometimes filter things differently. I was convinced he'd be required to have 8 rounds of chemo, and today found out he can be done and move to the donor phase once a match is found. Maybe we'll be living in Sacramento even sooner than I anticipated. Maybe not. It is absolutely impossible to do anything but put one foot in front of the other.

We were a bit down last night that our hopes of Sam being a match did not come to pass. We don't fight just the cancer in the body, we fight the caner in the mind that wants to momentarily lose hope. I remembered a scene from a popular movie in the 80's. I don't even know if I remember this scene correctly, because I was far too young to properly pay attention to "The Golden Child" when I watched it as a flighty teenager. I vaguely remember Eddie Murphy's character needing to save the Golden Child, who had mystical powers. There were bad guys and chases and the supernatural. At the end of the movie, he had to cross a chasm over hell fire, without benefit of a bridge or any other  immediately seen support. After much trepidation, he stuck a foot out and when he stepped down, a column of stone appeared under his foot to support him. This is the way he made it across the chasm. One foot in front of the other.

If I have remembered this scene incorrectly, I don't need to be corrected. Maybe I'm actually remembering something from the Indiana Jones series. No matter. I'm just going to run with this imagery, and imagine that each supporting stone has and will appear as we take the next step, and we will be supported all the way to our destination. My hero and this wild heart are on a journey. And we are so grateful for everyone accompanying us on this journey and being our heroes as well.


Friday, July 28, 2017

Potatoes


We are luxuriating in this long weekend. Dom is ponied up to his computer keeping himself busy with tutorials or the ever fiery news. Sam has enjoyed a day by the pool, and been our wonderful companion on this chapter of the adventure.

I planted potatoes.

Ordinary and unromantic as it may seem.

I have both simultaneously been letting go of things, and investing toward the future.
I'm looking toward the three months we will live away from home, and trying to figure out how to best manage the things that need attention more frequently than months at a time. While I love our little gardens, I realize some won't make it through the long haul. Letting things go is a small price to pay for the wellness of Dom.

A couple years ago, we had some potatoes sprout in the kitchen. We cut them up and buried them in a planter, down by the barn completely forgetting about them. Autumn and winter came and went, and by spring, we couldn't figure out what the green plants were growing in the planter. I pulled one up and there were healthy new potatoes. We had garden fresh potatoes for some time. We'd forgotten the brief labor of putting them in the ground, so they were an exceptional surprise.

Of course I had just done our monthly shop just before Dom's diagnosis. I was looking forward to a summer full of BBQ and hoping to entertain friends. My Mom reaped some reward as I sent her home with things I'd bought on sale in multiples that Dom can't eat now, and I cannot eat by myself. The bag of potatoes had sprouted while we were away for 3 weeks. I put them outside to wait for time.

Today I found the time. I buried the potatoes in the ground with the hope that when we are through the bulk of this journey next spring, I'll walk down to the garden, thinking everything would have died away, and there will be the surprise of potatoes again. Maybe there won't be. I don't know. But I planted them with hope.


Saturday, July 22, 2017

There and back again

The only way I can describe this past week is it felt like a tunnel. A very short, narrow tunnel that must be traversed on one's knees.

I knew if we just kept plodding along, we'd get out, and be able to stretch and breathe.

Just a recap of details, since I feel a bit scattered on what information has made it past the fringes of my own mind. Dom was admitted on the 11th for the second round of chemo. Prior to admission, he'd been struggling with fevers and a rash. The chemo he receives is different from week to week. If you remember, he sailed through the first course.

This time was so very different. It knocked him flat out.  He had a fever for over a week. I cannot imagine having chemo on top of feeling poorly. He didn't just have a reaction to Bactrim. He had a very bad and possibly dangerous reaction. And then they threw the chemo at him, that as his covering doctor said, "oh yeah, that stuff, it will tear your guts out." That was his response to Dom after asking Dom how he was feeling and Dom sharing that he couldn't hold anything down for several days.

I felt helpless.

I'd cry. I'd get mad. Never at Dom. He did not ask for any of this.

But, he just endured. I searched my mind for the last time I'd felt really sick. I have the constitution the doctor expected Dom to have. I do not get sick. But, I did get sick, once, on a Saint Patrick's Day over a decade ago. I was out with friends having drinks and dinner. I had not had more than a sip of anything. I realized I was quite ill and got up. There was a very long line for the wash room, and I nearly fainted waiting. I stumbled outside, and laid in the parking lot in dirt and grease and was very sick. I picked myself up, weak as a kitten, and after a few steps, had to regroup by laying over a trash can. I kid you not when I tell you that a man who had watched this entire episode came up to me and asked me if I was there with anyone in particular or could we "hang out."
But I digress. That is probably the sickest I have ever been. I felt like someone had kicked me repeatedly the next day. And I remember just laying as still as possible so as not to feel any more sensation than I had to.

And I looked at Dom. And knew he felt a hundred times worse even than that.

He was supposed to be discharged last Saturday, but that day came and went. As well as Sunday and Monday, and Tuesday.

I went home last Monday and picked up his sister and brought her to the hospital. It tore my heart out to leave him there feeling so down; but only one of us can stay over night. And I knew sister brings healing love.

I took advantage of a day to clean the house, and by Wednesday, he was being discharged. But not before a round of chemo on Tuesday! When he told me he was coming home, I was shocked.

His white blood count is about zero. They don't usually release someone with a blood count so low. Last I'd seen him, he was so quiet and sick.

When I returned, he was up and eating and walking and putting on normal people clothes.

We've been home a few days now. Today, Saturday is the first day I do not have to drive to Sacramento and Dom does not have to be poked or prodded. So we hope. He's getting his energy and strength back. He just ate eggs, bacon and toast, so I'd say he's doing all right.

So we know, we've said this before, we say it again. This is only now. We hang on to the moments that feel good. Every time I see him come back to life after being brought to the brink, it gives me hope, and calms my spirit. I know we'll have more struggles ahead. I hang on to a thought that perhaps he has faced the worst in enduring the toughest round of chemo whilst already sick from the Bactrim, on whose bottle I have drawn a skull and crossbones and frowned at many times.
He and Sam and I are still in our pajamas this morning, just relishing these moments of ease. *Edit, I'm still in my jammies, and they're off on a walk. We're refueling for the fight ahead. We're enjoying the semi normalcy of home. The kitties are enjoying a new friend to cuddle and open the door for them a hundred times a day. I'm enjoying how far away the hospital feels, and I'm writing on my heart that we are loved and cared for, and today's now feels good. We'll hold on to the good.

Monday, July 17, 2017

Peaks and Valleys

Samantha arrives this evening. Our friends will collect her at the airport, take her to dinner, and bring her to our home. I'm sad we won't be there to greet her. Things look much different this hospital stay. It's definitely a season of flexibility as things shift and change moment by moment.

I'm hoping that Dom is well enough to be discharged tomorrow, and he can go home for a day or two. I'm hoping for so many things all the time, all day long.

My heart has broken a million times over sitting with Dom in so much pain. Each break and crack is mended by the love we feel, from so many people. Our group of support has grown to include many of Sam's friends. It is no surprise that such a beautiful soul would attract more beautiful souls. There is no possible way I can ever express my gratitude for all the love and support.

It seems also that people are sprouting wings every where I go. I'm both strong as can be and fragile as a dried leaf. Oh how I love my pardoxes. The smallest gestures of kindness are magnified a thousand fold when one is facing mountains.

Speaking of mountains, Dom relayed to the nurse his acknowledgement this would be the most grueling thing he'd endure. I suggested we climb Mount Everest when he's better. This is going to be incredibly grueling. The unexpected blizzards will come and test our mettle. But there is a summit. And just as one prepares to ascend Everest, they do not stay there forever. And then one day, they are back in their small town, normal life. We will summit this mountain, but we will not stay on it.

On a lighter note, the doctor is fascinated by a Northern Englishman with Irish roots who does not have a stomach made of steel. I picked up that perhaps the Doctor's years in college were not entirely devoted to studies as he referenced all the times in school he would not allow himself to be sick. If you are familiar with doctors who are all business, then this glimpse into his personal life is quite human. Our nurses all seem a little cowed by him, and note surprise when he jokes with Dom. He seems quite compassionate as Dom struggles through this round. Compassionate, and still able to tease a little.

As for me, I am terrified of forgetting to lock the wash room door in the common room. The line is so blurred between this being home, and this being a public space that I sometimes forget to lock the door.  Though, all things considered, the indignity of having someone interrupt me there is a drop in the bucket compared to all that Dom has to endure. I find it amusing that the parade of people that enter his room find it more important to holler out a hello and make their presence known than enter quietly and as if the person in the room is actually quite ill and not hanging out at the pub. I'm sure Dom would much rather be startled naked than be woken up one more time by a nurses aid who wants to check his water or a floating nurse who wants to appear busy. Yesterday, after the admissions woman woke us both up, and I whispered all my responses to her, and she continued to practically yell hers back, Dom lamented no one really has an inside voice in the hospital. We love the laughter outside our door, as the nurses may release some tension with a good story or joke. We just can't comprehend the steady stream of loud talkers that think Norm has just entered the bar.

I've also nearly walked into our old room several times. Hand on handle, just about to stumble into another family cocoon. Thankfully, I have not, and at least I hope I'd know to use my inside voice.

Friday, July 14, 2017

Xhaiden 1

Have I mentioned before that Dom's bathroom in the hospital is cleaned by a robot? It is plopped in the bathroom, the door is closed and it emits UV light like a strobe and zaps away the germs.

The staff named it Xhaiden 1, which means: cleansing beam of light. I find it adorable that a squat little robot is zapping the germs away with a cleansing beam of light.

I also find it symbolic. What else can I do but ponder the cleansing beam of light in my own life, as daily my own spirituality comes into sharper focus, and daily I must allow things to fall away that do not serve. Though really, nothing is here to serve me, rather I am here to serve. More importantly, daily, I ask for the good to come, and the nasties to go away. I envision very uncomfortable microscopic invader creatures being pushed out both by the chemo and by the cleansing beam of light. I envision the light; it is stronger than any rebellious cells. It is clearing out that which aims to destroy, and making all things new and whole.

I am grateful for this tangible reminder rolling throughout the halls, and visiting us.


Wednesday, July 12, 2017

Healing Love

Round two of punching cancer in the face. Yep. I said that.

The car is practically self driving now. I don't believe I've mentioned before that when we shopped for our car, we were torn between getting something really big to lug Dom's gear around in, or getting a tiny little shoe to save on gas. Feeling super grateful we opted for the shoe. Though, the days it is 105 degrees here in Sacramento, even our shoe gets thirsty. But most days, she's quite undemanding.

I've been a busy little bee at home trying to get ducks in a row. As far as animal euphemisms go, it's been more like herding kittens. I was quite a heap on Friday, but by the time we headed out yesterday morning, I was feeling much better as I was able to sort through a few things.

It's difficult for me to share the difficult times, because I like to think we're both powerful and strong, and I don't like to reveal any chinks in our armor.

But, home was so very challenging. As I shared, Dom struggled with a fever and rash the entire time. Each evening was a negotiation of how to proceed. Do we call, do we not call? So much pressure for what would normally be a little nuisance. He was so well in the hospital, I'd imagined he'd be almost his normal self at home. The disappointment ran very deep that he had to endure all the extra irritations and worries.

We arrived back to Sutter yesterday morning. We had labs at 10:30 and an appointment with the Doctor at 11:30....make that 2:30 due to whatever happens to doctors throughout the day. The office told us to go have lunch, and I wondered what that could mean, since Dom's avoiding public places and restaurants. So, we sat in the car and had cheese and crackers, and for Dom, dried seaweed. (ew!)

It was our understanding that we'd be admitted for his next round of chemo. We're new at this game. Being admitted to the hospital not on a gurney was a different experience to be sure. As the Doctor's assistant/nurse (never did get his actual title) told us to go off to lunch, I asked if we were actually going to be admitted. (Because mind you, it felt so weird to know there was a room with Dom's name on it, and we couldn't be admitted to it on what felt like a technicality.) His response was that by the look of Dom's CBC, we'd definitely be admitted. Now, what does that sound like? First impulse is to think that's bad. Being admitted equals bad, right? For a short time, minds raced that they found something bad in his blood, and more bad news was on the way.
After thinking it through, I realized, had they found something (else) bad in his blood, (you know, other than cancer), they would not have admitted him for his next round of chemo. So, in this case, being admitted is a good thing. It's progress. But I'm going to have to get even tougher on these white coats who have become too familiar with this path and forget that more than wanting to hear procedures and drugs, we want to know what does this mean?

After our gourmet picnic on the beach, (I mean lunch in the car under the freeway), we headed back for our 11:30, I mean 2:30 appointment. I had to stay back while he had a spinal tap and another bone marrow biopsy. Perfect time for a useful phone call.

After we were settled in our room, Dom relayed to me that the doctor had to go in a second time for the bone marrow....that the poking around was a little exceptional yesterday. The assistant was remarking to Dom that he was doing really well, especially considering gobbledy gook......I guess he had caught himself from saying out loud that the doctor did have to go in a second time for what he needed and just rambled some nonsense as he caught himself. Yeouch! What a day! Praying all the bad guys are gone from his cells.

We should be here just 4 days. They threw everything at him last night. Pills on the half hour for a time. It's a good thing Dom likes Terry, because that's who had a story with every pill. As long as Dom is happy, I'm happy. Did I mention on the half hour? And, as per usual, I'd wake in the middle of the night to the two of them having full conversations. In my dream state, I'd think I was in a bar. Oh no, just a nurse and his patient. I don't mind. I'm not the one being poked and prodded. As long as Dom is happy. That is what matters!

And in really good news, the Bone Marrow Transplant is covered under our insurance. The required move is not. How wonderful to afford insurance that would also cover living expenses! Goals. But processing all this, we are ever so grateful for all the help we've received so Dom can just focus on getting through this. We both know that we are not alone, and that is healing love right there.


Saturday, July 08, 2017

Buckle Up

I’ll bet you thought we’ve been home enjoying the views and our domesticity. That’s a very nice thought, and hold on to it, as we also hold on to it. This is not forever. It’s only now.

Now, as I type, we are at the infusion center in Sacramento. It’s our second day trip here. We were released on Wednesday, and had one full day at home.

I’d been feeling invincible strong. Our first impression, with ALL was that he’d have the chemo, we’d jump through the hoops, and get to the other side. Then the Philadelphia gene complicated things. But I latched on to a new story of chemo, transplant, a 30 day hospital stay and home free. I latched onto being through this by Christmas and an end to the Annus Horribilis. One by one, my white fingers are being picked off the ledge, and I’m pretty sure I’m just supposed to fall into the unknown. Maybe I can fly.

We didn’t understand until we left on Wednesday that we would not have until the following Tuesday to lolly gag around the house. As we were getting our discharge directions, we were told we’d need to come to the Infusion Center on Friday where they test your blood, check things, give blood infusions. On Wednesday his hemoglobin was on the low side, we thought they’d give an infusion before we left. But they didn’t, and we figured we’d get blood on Friday.

We didn’t.

They scheduled us for 1 pm to help us avoid traffic, which we didn’t. At all. And the infusion center would not give him blood because it was too late by the time all was said and done.
So.
Sometimes things get messy.

And they got real messy yesterday. As per usual, we really liked our nurse. She looked at his pik line, and decided it needs attention. He’d been having a reaction to the adhesive before we left the hospital, and by the time we arrived yesterday, it was angry. Out it came. So our trip was not a waste.
Each step of the way, she’d reassure us, everything was just routine. And yet, Dom’s special. I’d react, and she told me to just hang on tight, this is a roller coaster, so always be ready for the next dip. Oh, so many dips. He gets the fever. He simultaneously gets a rash from a new medication that he’d had for the first time. Special. He is so special. This is what everyone kept saying as they packed into our teeny tiny cubicle to look at his line, his rash, his bright sparkly eyes.

I have run myself ragged the past couple days getting the house ship shape so he will be safe from germs. And then he gets “the fever” from the blasted pik line problem. He had a fever before they released us from the infusion center, and we were perplexed as to why they’d send us home, if we’d have to turn around and come back. I was torn, as I had brought nothing with us, thinking this just a routine visit. The prospect of not going home was another layer, in a far too layered sandwich. Did I mention I’m not a big fan of sandwiches? Not really. Less and less. To be honest, I’ve missed my kitties, and the thought of neglecting them so much was hurting my heart.
100.4 is the magic number. I think Dom took his temperature a couple dozen times. 99.1, 99.6, 99.8, 99.4, 99.9, 100.1, 99.6, 99.9, 100.2 and on and on, up down, up. We’ve been told over and over if the temperature reaches 100.4, we have to call, and maybe return to the hospital. They’ve also told us over and over not to take Tylenol because it masks a fever. So, when we called at 100.4, the on-call doctor called us back and told us to take some Tylenol. I’m not gonna lie, I was happy to sleep in our own bed. Wait. Sleep? Did I say sleep? Not much of that happening. My guy was having a reaction to a drug and had a fever from an angry pik line. Sleep is quite elusive under those circumstances. But I did leave him alone for a while and cuddle the kitties. Or at least try too. It was 2000 degrees in our house.

I packed for almost every eventuality when we returned home last night. I decided that I was not going to get stuck in Sacramento without some long pants. My lap top charger. A tooth brush. The essentials.
I am an accidental tourist of sorts, as bags line the door way for our every coming and going.

The visit to the infusion center was far more exciting yesterday than just how special Dom is. I’m not quite sure what the reasoning is, but people with bad news at Sutter like to visit at the most inopportune times. It’s just weird. We spent 1 day shy of 3 whole weeks in a hospital. We had so much time on our hands, in the biggest room with the best view. But for some reason, when we’re squeezed in a tiny cubicle, and our nurse is trying to troubleshoot the special happening, two women from the bone marrow transplant unit think it’s a good time to talk to us about that. Hold me.

We’re already reeling from the news he has a fever, we may be stuck, we have to come back in the morning. We’re disoriented. It’s a new to us place. We’d received other bad news via email that morning; and these two turn up with a binder. A binder of shackles. I have to sign a contract that I will be my husband’s caretaker and will not leave his side, or if I do, I have to arrange for others to be with him. And yes, we do have to move. We were told we should consider finding a place to stay, just in case he spikes a fever. That’s an understatement. For two to three months, he has to report to the hospital or infusion center every single day. Every. Single. Day.
I’m not sure if this is the part in the roller coaster ride where we’ve been climbing and climbing and climbing and the ratchets pulling us up are getting louder, and slower or if we’re in that moment of not going up and not going down, or, are we just in free fall? If we are in a free fall, I cannot for the life of me find the bar holding me in.

It’s all of you.





Thursday, July 06, 2017

Home sweet home

Breakfast has been served, and it feels more like a lazy Sunday morning. I don't know if I've ever cooked bacon in this house. But bacon was cooked, and breakfast was had.

We arrived early afternoon yesterday, and Dom was pretty overwhelmed, having not felt sunshine on his skin for 3 solid weeks. He donned a gardening hat and a mask and walked the drive, taking in all the sights and sounds.

We found a gift tucked in the door to the barn that made us both cry. Someone has donated such a sum, that we were knocked off our feet. I'm not sure if they want to be outed in name, so I'll just say we are forever grateful to them; and to everyone. Not just for money gifts, but for loving and caring for us.  Just returning home to my lovingly maintained garden, and well fed kitty faces was love.

And as we fell into our groove at home, it felt at times like I was the flash, or some other cartoon. I was buzzing around between house and barn doing all the things, and then I'd look at him just soaking in the sun, become human and check in with him. Then I'd go back to zipping around, and this happened throughout the day. He just looked so serene and I must have looked like a pile of clouds and lightening bolts.

I prepared the house, but one can never be totally prepared. There's still things I just didn't think about until we were in it. We just can't be too careful. I've said this before, but all the things that I allowed before, with the thought of building up immunity, just cannot happen right now.  I've washed my hands a thousand times, in hopes of keeping all germs at bay.

Dom just remarked that now the bed feels like a safe space. As ready as we both were to go home, he had really mixed emotions about leaving his cocoon of safety in the hospital.

We live on well water, so I've had to think a lot of our daily life through. I mentioned before we have access to reverse osmosis treated water. I have bottles of distilled water in the fridge ready for him. What I did not initially anticipate, is the fear of even brushing his teeth with well water. So, off shopping I went, with another list. I went to the aisle I've spurned so many times before. The paper-goods....I bought little tiny dixie cups for brushing his teeth with treated water, and a little dispenser, because I have to make things doable. I don't know why it conjured up images of the Brady Bunch for me, but little dixie cups in a dispenser is everything early 70's to me. And while I do not want to baby my man, his immune system is far more fragile than an infant's.

I sometimes wish at this juncture that we lived at my Grandma's. She is not alive anymore, but she is always vivid to me. She had allergies, so her house really was the bubble we'd need. Zipped up tight and clear of plants and flowers. Alas, we love our country cottage, and hope it brings emotional healing where it may fall short of convenient.

I went to the pharmacy also yesterday to pick up his home meds. I was that person. The one that has multiple prescriptions and they have to enter our insurance information because Dom is a new customer, and it takes a very long time. The line snaked down the aisle and I made myself smaller. But I got his meds. And again, thankful for insurance.

So today, he'll continue to enjoy home. He'll read what people have recommended, and relay to me ideas on the pursuit of health and a good diet. (I have several packets of information and tabs open on the neutropenic diet, which is for people with no immune system, and sometimes they contradict each other. So, we always lean toward what is more strict.) I'll be donning my cloud and lightening bolt suit to tackle the rest of transforming our home into a bubble.




Wednesday, July 05, 2017

Jiggity Jig

Going home. Round one, just about to put a bird on it and consider it done.

Tomorrow will have been three weeks since we walked into the ER.

Dom and I have been contemplating going home. We've felt so safe here, with routine checks of vitals, hand sanitizer by every door, and blood waiting to be infused each time he needed it. We're a little nervous to embark into the big, bad world.

We have had a very good nurse the past 2 days. Overall, we've really enjoyed everyone, (well, you know....), but Ryan has been especially helpful. I feel at times, like he's my college professor, because as I go over my list of questions for him, every now and then he says "good question," and I feel like I'm building up all the extra credit. (Because if you read the blog regularly, you know I feel like anything can be won by following the rules.) He has been able to answer more questions regarding home care than anyone else, and I've actually compiled a grocery shopping list, and know what I am cooking for dinner tonight.

Dinner tonight. I have not had to cook a single meal in 3 weeks.

Nervous.

We're mostly vegetarian, and now he wants the bacon and the salmon and cancer fighting warrior gets whatever his body wants to do its job properly.

I'm a clean person in general. I wipe the fridge down every week. I scrub out the sink. I soap the dishes up good. But, I also have a streak in me that says a little dirt is good for the immune system. I'll use the cream past its expiration date. I'll sometimes leave the bed unmade if the royal cats are having a snooze. So, in fact, I was puzzled the other day when my Auntie Carole told me I was blessed with the CLEAN gene. I did all sorts of mental gymnastics trying to figure out what CLEAN was an acronym for, until I finally had to call my other Aunt,  thinking I had some mysterious cancer fighting gene. I suppose in a round-about way, I do. I am a neat-nick like her brother, my Grandpa. I can't stand messes or dirt. And, in this battle, that's a necessity. We won't be using the cream after expiration. We won't be having cats on the bed. At all. Perhaps not even in the house. And the sheets will be changed every other day. Every. Other. Day. I have a couple sets of sheets set aside to go to Salvation Army. I'm bringing them back.

On that note, can I just vent a moment? Just a quick little digression. I've mentioned there is a refrigerator for family use. There is a note that says food is no good after 3 days and will be tossed. Captain Literal came and got me the other day because the date on my box was past 3 days. She was very unhappy with me that I had written dates and name on my bottles of bubbly water instead of using their stickers with name, room number and date. She wanted to throw away sealed bottles of bubbly water, and packages of string cheese because of the date on the box. Nothing was open, or left over or past its sell by date. Meanwhile, if you remember, I had thrown away the crustiest week old leftover food shortly before that. It felt like she was on my case only. It felt more that way after she left, and I went back in and there was tons of food in the fridge not labeled, not sealed, but somehow more okay than my bubbly water. I think she's an unhappy person. I think I won't miss her.

It will be so quiet at home without all the heads poking in all the time for various things. I'll savor the moments of quiet in the house without any white noise. The hospital air system is constant. It will also be a little lonely without all the friendly faces. We both want to visit with our friends, and also are terrified of any germs. If he picks up anything at all, it is a trip to the ER and a delay in treatment. We don't want that. I'm sure, as we get our bearings, we'll calm down. But for now, we just want to hunker down in a hidey hole. I think it's why I've resisted visiting the many friends nearby in Sacramento, who I would love to see.

I miss my friends. I miss my community at yoga, and of course I miss the yoga. Thankfully, I am a teacher, as I will be teaching myself in the foreseeable future. 

Though he is the one with the cancer; and I'm so very sorry for all the strength Dom will have to summons to see this whole thing through, we are definitely in this together. It's kind of our full time job right now. I will work from home as much as possible to continue to earn income, but we're both on hold until we can beat this thing.

So bring on the tinned food, the Netflix binges, the Clorox bleach wipes and gentler vinegar wash. We're headed home shortly. Just long enough to get settled and repack for round two starting on the 11th. And away we go!






Monday, July 03, 2017

Glimpses

I didn't think I'd have anything to blog about, but oh my goodness today (Sunday) was a flurry!

And it's just a snap shot of the way we're being so incredibly held up.

We had family come to visit today. We've tried to limit our visits for the sake of Dom's immune system, but family is family. Of course, we're not blood related to anyone that came, but they were all family nonetheless.

I so needed that long, nope, I'm not letting you go yet hug that I got.
I needed to see my sweet baby girl. And to hear how things were going where we live. And my neighbor sent beans and tomatoes and lettuce from the garden that she's been tending for us. Amazing! All of it.

 Yesterday, we learned that there was a huge water leak in the barn apartment that shares a water line with our house. The only thing that could be done on a holiday weekend, was to turn it all off. That meant no water in our house. And Dom soon to be discharged. And waiting lists of 3 weeks for a plumber. The full ramifications did not set in until our friends came and we talked about it. 
And, in the midst of this visit, our dear Craig was dropping by the house to help us out with something. This guy is superman, (and single, ladies. wink). I called him and asked if he'd mind just having a look in the barn. A little while later, and problem solved.

It's just amazing to me the timing of it all.  And in a humorous fashion, it had to happen all whilst connecting with people who just needed to see Dom's face, and pinch him, and realize, he's same Dom, just without all the hair. I guess I should have prefaced this story by saying that prior to our company, It was very quiet. Dom and I were just waiting for one or the other couple to arrive, and they all arrived at the same time. We went from absolute solitude to love and laughs and frantic phone calls and a baby playing with little packets of sugar on Dom's bed.

The sugar packets have been lingering in our room for the duration of our stay. When we ask for coffee in the morning, we're met with the reply "cream and sugar?" Which is always met with "No sugar, thanks." And still, the coffee arrives with packets of sugar. (Because everyone here is just so nice and accommodating, and maybe we'll change our mind....) So, every morning, I shove packets of sugar in a paper cup. This baby had no idea the amount of baby crack she was holding in her hands. As far as she knew, it was shaky noise paper.

And all too soon, it was time to say goodbye. And I won't lie, as soon as the baby was gone, the linens were changed, the clorox wipes came out and I did my best to banish any possible hitch hikers. I swear that baby didn't have any, because she just looked straight from heaven.

Now, it's quiet again. I'm headed home tomorrow to scrub like mad. It will be my first day home in two weeks. (By the way, Terry the Talker literally just sang Rod Stewart's If you want my body and you think I'm sexy in an old man voice. Real time writing here.) I take the quiet comment back. It won't be quiet again until somewhere around 7 a.m. All is well.


Sunday, July 02, 2017

other numbers and gratitude and humility and love

When I was a little girl, my grandparent's church put on an old time Vaudeville show. I don't remember anything about it, but that it reminded me of Dudley Do Right cartoons and I had a role in the show. Not a huge role. Barely any role at all. Time passed. That was my role. My entire purpose that night was to walk across the stage with a clock. Not just any old clock, but a colorful plastic toy clock all of us grandkids had played with at one time or another.
I was so nervous. All I had to do was hear the words "time passed" bellowed out, and take my walk across the stage. I was so excited, and nervous that I carried the clock upside down. Everyone howled extra loud, because I probably screwed up my face in some odd fashion like I normally do when I am feeling self conscious, and I couldn't even play time right side up.

I'm here in my makeshift bed, hearing the click of the medication being rhythmically dripped down into Dom's arm, and his own soft rhythmic breath.

I was almost asleep.

And then the realities set in. And my heart started beating a little faster. And my eyes fluttered open. And I recognize that Dom and I are in this place I never could have calculated we would be in. I feel an ache of gratitude. A press on my heart.

Just as I was settling in to this new normal; this daily anticipation of what his numbers will be, will he need blood, platelets, potassium? Will his White Blood Cells rally and build back up? This new normal of stumbling down the hall in my jammies to use the loo all bleary eyed and disheveled and saying hello to people at their work. We'd found a rhythm, Dom and I. A nap after the morning doctor visit. An outing to move the car. I'd compartmentalized the treatment, and decided he will be better. And one day at a time, together, he and I will get there.

And then he shaved his head last night. And we both had to sit with that in our own ways. It makes it a little more real. I think he's just as handsome as ever. His eyes freed up to take center stage. (Because that hair. What could compete with that hair!) Another lovely friend of ours walked through this cancer with a friend, and shaved her head in solidarity. I asked Dom if he'd like me to do the same, and he said please no. To be honest, that's a relief.

And I cracked open facebook, and realized our dear friend had launched a Gofund Me campaign. We knew that somewhere down the road, we'd need help. We knew that friends were interested in helping us with raising funds, had suggested long before I'd even wrapped my mind around the situation that we could not do this on our own.

I'm stubborn.

And oh the pride of doing it on our own.

And I have done it on my own. I have found myself in a series of bad decisions where to pay back a debt, I looked like Pluto tightening his belt in a Disney cartoon. I cut out everything I could, and threw money at a monster debt until I killed it. I did work trades for extra things took on whatever jobs came up. It's something I'm actually quite proud of. And even then, there were gifts along the way. I really did not do it on my own.

But when the social worker came in the day we were completely sleep deprived and in shock and felt like that was a good time to ask us how we'd handle all the worst case scenarios, I started calculating what I had in my bank and what I could sell, and then I just let it all drift into the nethersphere, because though I don't have a solid plan of action, I have the knowledge that I will do everything in my power to get us to the finish line.

And it's a funny thing my friends. Dom and I have both been working really hard toward working more. He was filling his calendar with photo work, and I was filling mine with substitute teaching yoga. I was being considered for a regular teaching position. I was fingerprinted and TB tested to start volunteering at a non-profit school for kids who can't make it in regular school, and are mostly foster children and so badly in need of so many things. He and I were feeling really good. It's like that scene in a movie when a couple is just too happy, and they're in the back seat of a taxi smiling at each other, and the car slams into a wall and the scene fades to black and opens back up with a heart beat, then bright lights and chaos.

The whys come in like high tide, and I turn my back on them until they recede with the ocean. I cannot understand why, just now, and I don't need to. I may never understand why. I am comforted by the words of E.M.  Forrester in his novel A Room With a View; “By the side of the everlasting Why there is a Yes--a transitory Yes if you like, but a Yes.”

I don't know all the whys of why receiving sends me into a panic. I don't know why every time a friend, or even a stranger shares the link our friend created to help us makes me want to hide like a child under the piano. But it does. It humbles me to my core, and it's so much easier to receive as child. I dance around the Gofund me. I have my hands over my eyes, and I just sneak a peek. One day, I will remove my hands and chin up. Because each share, each gift, each expression of love is a Yes. Yes to us. Yes to life. Yes to love.

And I suppose I had that flashback to that day oh so very many years ago, because I feel like that little scamp in braids, with missing teeth even, doing her one bit clumsily. And nervously. And maybe upside down or backwards. And wishing that time passing could be as easy as walking a clock across a stage.