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.