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.

Friday, June 30, 2017

Practical magic

Practical Magic

I’m keeping an ever growing list.

I could title it: Things we took for granted.
It’s really my prep list for going home, which is still in the air as to when.

Daily, it seems, I add something to this list.

People have generously sent amusing books and offered to bring books. What I find myself doing for hours is researching the neutropenic diet.
It’s a shame, all the cancer fighting things that will keep his body healthy, he cannot have. I’ve run to the market buying flash pasteurized smoothies, coconut water, whatever I can to help him along, only to find out he shouldn’t have them. No cancer fighting blue berries. No kale. No walnuts.

I pepper everyone who comes in our room with questions about this cheese or that juice. I continue to think he is pregnant, as he is not allowed to eat any soft cheese.

I bought a counter top dishwasher on line. I love doing our dishes by hand, but needs must. I’d feel much better about the dishes going through a wash without using a dirty old sponge. And this is one of those practical ways that I could enlist help. I knew my friend Robert would be able to help me sort out which was best, and so I asked him. That’s the beauty about community. You all have answers to our questions; we just need to ask them.

I think we may have to view John Travolta’s The Boy in the Plastic Bubble movie. If I could just wrap Dom in a protective bubble. Someone sneezed about 10 times outside our door, and I flew out of my seat and nearly escorted them out of the hall by use of force.

I’ve scouted out on line the medical supply stores in town. There’s a few items I’d like to have around. Like masks. Definitely masks. And to tell the truth, I’m quite jealous of his powder blue cinch waist pants. I’d really like to stash a pair on the way out. I’m not so jealous of the gown. While it does remind me of my Grampa’s pajamas, as much as I loved my Grampa, (dearly) I’m not in love with the nautical green stripes and blue medallions. The gown can stay.

I’ve pictured myself making a Costco run, and getting a huge pack of paper towels. I can imagine we’ll go through these. And, if you haven’t picked up on it already, we’re not big consumers; we generally use cloth rags and napkins. I once watched a friend I was staying with use an entire roll of paper towels in one day just going about day to day business. As she cooked dinner, I could hear the tear of the towels incessantly. An entire roll in a day. I nearly lost my mind. And in a matter of days, that will be me.

We have a paper towel dispenser in the room that I just wave my hand in front of and out pops the paper. I kind of wish I could install one of those at home. This one dispenser has provided me with plates, napkins, mops, hand towels and counter wipes. Well, not really, but that’s how handy paper towels are.

I’m also in love with the flimsy little water pitchers that they keep filled. There is a disposable insert for the pitcher that conservation Cass would hate, but germ-phobe Cass says yes please. It totally feels like something from the dollar store, and yet, the lid never falls off, the water never leaks, it just does its job. Why is this so exciting to me? Because I have a filter system pitcher that always, always leaks and the lid doesn’t stay put, and perhaps I’ll stash one of these hospital pitchers in my bag too. I’ve never been a thief. I’m sure it could be gifted to me via a wink and a nod.

I didn’t even think about it until I read yesterday that well water is a no no. Unless it’s tested every day for bacteria, which, of course, it isn’t. It’s off limits. We’re fortunate that there is a reverse osmosis filter in the barn, so just like the prairie girl that I am, I’ll be fetching water daily.  To put in my snazzy little hospital contraband.


Some plastic baggies to wrap his arm for every shower. Sorry sea creatures. We have to keep his ports and bandage dry. And clean. Just not clean from a shower.

I see a lot of Tetra Pak in our future. A lot of individual packets and cartons. I see a world that is the antithesis of how Dom and I live! But, we know it’s a temporary world of beige food and overcooked veg. Even herbal tea must get approval. Our Yorkshire Gold is on the approved list. Phew. One thing that will be no shock to our lifestyle is no restaurants for 100 days after the bone marrow transplant. We rarely go out to eat, so this will not be a struggle for us. But seriously. 100 days. I just might slip out for a taco.






Thursday, June 29, 2017

Love is the cure


 iphone shot by Dominic
It seems as if we’re treating this cancer in a very old school Christian way. When I was very young, I used to think if I jumped through all the right hoops, was a good girl, and didn’t make too many mistakes, that God would give me the life I wanted. That did not work out so well with me, and I have long since taken a different tack.

Nevertheless, here we are, in a vaguely reminiscent way. I glance down at my notebook at my side. I am writing down everything. Every piece of information goes in the notes. Every name, every drug, every stat, every question. I want the insurance company to know we’ve done everything possible to make all their dimes worth while. Dom is compliant. He does his bit. He takes the pills, the liquids, the directions. He walks with determination, brushes his teeth, showers every day, eats all his meals and hydrates. We search out complementary diets. We are fighting the cancer from every angle. We are in it to win it.

I’ve just attended my first family support meeting. I thought maybe someone would ask the question I did not even know that I had. I would love to tell you all about it, boy would I. But it’s like fight club. First rule and all. One woman gave me permission to talk about her husband’s barking spiders outside of the group. But we don’t actually need to talk about that.

I am itching to talk about fight club though.

What I can tell you, is that when I pass a patient in the hallway, pushing their tree of life, and they smell like an ash tray, it gives me pause. How does one take their act on the road and step out for a ciggy? There’s no place to smoke anywhere near the building. Let alone that you’re not supposed to even leave the Oncology Ward to protect the fragile immune system. It is not my intention to judge the patient, but it just boggles my mind. And I dig my heels in that the the model patient just has to be cured. If only one could be cured on merit alone.

I can also tell you that the term God complex was brought up in context of doctors thinking they are god. And I realize I may have the complex by making our Doctor god. It’s not that ultimately I think he alone has the supernatural power to cure cancer, but subconsciously, that old good girl in me thinks if we impress him with really good behavior, we’ll get to the promised land. The doctor doesn’t notice this. He just listens to Dom’s breathing and feels his feet for edema and is on his way.

As I ponder this reckoning with cultural spirituality, what I really want to say is this: I think what is absolutely healing is all the love and support we are receiving. I am positive that the daily posts from people, the love, the prayers, I really believe it is all part of the cure. You are all part of the process of wellness for our Dominic. And we are both so grateful. Love is the cure.

Wednesday, June 28, 2017

Bon bons all day

I joked with friends the other day that I am sitting here eating bon bons while Dom is out walking the halls.
It’s really not far from the truth.
Under the windows, with the amazing view we heard about long before we moved in here is a chest of drawers. Right next to the bank of 8 drawers is a recliner. In which I sit. A lot. The drawers face the recliner and the top two drawers contain dried mango, almonds, crackers and dark chocolate. There were a few days where I couldn’t eat, just processing this news, this new life, and those days were not my highest functioning days. At some point you make yourself eat.
And then you can’t stop.
I sit in the lounge chair tapping away on the keyboard, and just reach over, slide open the drawer, and there’s a snack. It’s really far too convenient, this hospital living. It’s highly inconvenient for both of us to face a cancer diagnosis, so we’ll take our ease where we can get it.

On the flip side, I am trying to move. I’ll throw my yogi toes on the floor and catch as catch can. I draw the curtain and do some handstands when I’m sure nobody is looking. I have a fear of being scolded for doing something dangerous in the hospital. I’m pretty sure if there’s a place to conquer fears of no one finding me crumpled on the ground from a failed hand stand, a hospital room with people’s heads poking in every 15 minutes is the place to conquer them. But I’m still secret squirrel about it. I also found the stairs. Day one of this whole drama, and a nurse told me to use the elevator to get to my car….so, I used the elevator. It was imprinted in my brain to use the elevator. Once I started crawling out of the depths of trauma induced confusion, I realized, there are stairs. I can use the stairs. So it’s not all bon bons all day. But, I’m still in awe of my man, who dons those wireless headphones, a thoughtful gift, and boogies up and down the halls.

I’m feeling a little more ownership over all of this. This space, this treatment. All of it. I’ve begun throwing things away in the community fridge. I’m sorry, your drippy cartons of stinky days old Chinese food is going. I know you are not coming back to eat it. Someone left Fettuccini Alfredo with the used kitchen fork entirely covered in cheese for about a week. I tracked down someone from the kitchen and asked if they’d like to take the fork. Nope. Manky, nasty business. In the trash it all goes. I just can’t be my normal conservationist self and nothing is safe from my clean sweeps.

There was an entire family of Mom, Gramma and three children, kicking the furniture and looking about ready to jump out of their skin in the family room yesterday. Gramma was ripping things off the shelf trying to get the kids to read a magazine with Barbara Streisand on the cover or play a game. Kicking the furniture was far more appealing. I decided I didn’t need anything at that moment and was on my way.

I also think because Dom is feeling so much better, I have more energy to be irritated. Exiting the parking garage for my daily circle, a woman cut me off turning left directly in front of me, and then just forgot she was driving for a moment. I just sit, staring into the distance, until she remembers she’s actually still driving and not yet parked. My exit and circle around the block was just enough time for her and her partner to get out of their truck and I catch them standing right in the middle of the lane, cutting me off yet again. They were oblivious to me, patiently sitting there, waiting to safely maneuver around them. They still didn’t cross, they just walk toward me, past my open window and she mutters at me, “you’re ridiculous”. Yes ma’am. Me, patiently waiting for you to get your bearings in a parking garage is ridiculous. I am ridiculous. I didn’t betray my irritation, I just acted as if they didn’t exist all whilst actively trying not to run them over. I want to scream to them, my husband has cancer, be nice, and I realize, who knows the depths of trauma their loved one may be facing. And I shrug the whole thing off and am free to move on. Literally and figuratively. I guess I have the energy to be irritated, but still, ain't got time for that.

You know what I think might be a little ridiculous? The nervous looking new dad, who looked a bit soft if you will, one not accustomed to carrying heavy loads. He was loaded down with bags, a large and heavy basket of fruit and about 10,000 helium balloons. Our eyes met as I passed by him, and the look in his eyes revealed something. Fear? Something. I’m not sure. Somewhere in there was a brain calculating how to fit all the schwag in the car, in addition to a mother and child. The balloons alone would take all the available head space in the car. Note to self: save the balloons for another day and bring dad a stiff drink.

We asked our nurse today how many people are camping out at the hospital like I am. Not as many as should be he said. That made me feel even better about being here. They, who bring me coffee every morning, do not see me as an added chore, but a healing benefit.
I also change Dom’s sheets every day, so there is that.
But, what a wonderful unit that sees the benefit of families being together. Counting our blessings every day.

Dom’s still not feeling the effects of chemo. We realize it takes time, but for now savor this period of feeling good. He did sleep a lot yesterday. Every now and then he has to catch up on lost night sleep. When he wasn’t sleeping, the nurses would wander in and out to talk about whatever came up. His electric razor came in the mail yesterday. He’s not allowed to use a straight razor, the risk of infection if he cuts himself is too high. So we ordered a razor, and after over a week without a shave, he was quite happy to have it. We found the mirror in his hospital table, wrapped a towel round his neck and away he went. We welcomed the nurses to our beauty parlor as they filtered in to escape the ever ringing bed alarms.

Another day in paradise. No definitive answer on when he will be discharged. It’s basically up to his body, and how fast he can make some new white blood cells. We both look forward to going home, and feel quite safe in our little cocoon and are in no hurry to leave the constant care. I guess, either way, it’s a win win.










Monday, June 26, 2017

Nobody puts baby in the corner

I feel like a kid in the backseat of a station wagon. Mom’s wearing a scarf over her hair and tied at her chin, because the windows are open and she doesn’t want to muss her hair.
“We’ll get there when we get there.”
I think it’s because our doctor definitely has a 1950’s vibe.
We’re on this road trip, in the back of the car, and we’d kind of like to be at our destination, which is a complete recovery, and home. I’m trying not to “are we there yet,” but I’m young in this, and I’m curious, and I want to know.  Each doctor visit, it’s like we’re handed a juice box to placate us in our back seat of knowledge.
We’ve been told a whole month, another week, and everything in between. We’ll get there when we get there.
We had a floating nurse come in the other night, and go through the whole drill with us, and though her only job was to check his vitals, felt incumbent upon herself to tell us we’d be here a month, and again, we need to rent a house, and she wished we could move in with her but she can’t take in all the strays……and wow. We love all the care we are getting here, but occasionally there’s that odd experience. Part of the bigger odd experience of going about your business one day, and hooked up to drip lines the next.

I’m fitting in a little too well here at the hospital. I shared on facebook already that I’ve been mistaken for what, I’m not sure….I’d gone to the family room the other morning in my jammies, cardigan and some crazy wild unbrushed hair. There were two men, one with a badge sitting in the room. I never see anyone in the room, which also at times holds staff meetings, so I was afraid I’d interrupted something. They said no, and one stood up hoping I could help him. He pulled out a slip of paper wanting to know if the patient in room whatever was out of her shower yet. Um. My husband is a patient here too, and while I’m up on the gossip, I haven’t reached hygiene level gossip yet.
I guess I’ll have to get to work brushing up on what goes on behind closed doors.

Behind closed doors. I just want to know what every beep and alarm means. I love that the nurse’s call button makes a harp sound. Seriously. Like a quick stroke across the harp all gentle and angelic. I figured that one out. But, there’s another alarming sound I hear every so often and I’m wondering if people are really stroking out or what? Turns out it’s the bed alarm. Some patients, as I mentioned earlier, are confused. There is an alarm in the bed, so if they get up, it sets it off. Do you think I should play a little trick on Dom?

Dom. I mentioned he was doing his laps yesterday? He and the nurses are comparing their steps on their iPhones and fit bits and he is lapping them. Ha ha! He walked over 6 miles yesterday. It’s the whole make hay while the sun is shining thing, and the sun has been shining on him. He has felt really well the past few days, so he has done all he can in anticipation of rougher days after the next round of chemo, starting today.
Seeing him so strong and active has really helped me. I couldn’t quite picture how things would look, as he was so ill the first several days we were here. But these last few days, I can see that we will be able to resume normalcy over time, and he will be behind the camera in no time. No push to get him back to work, but always the desire he resume the things he loves.

We had a ninja nurse last night. She prides herself on getting in and out without waking the patient. That was really nice to hear that’s important to her. I also thought for a moment I’d set some landmines to see just how ninja she really is. She laughed please no. I also want to put a post it on the computer/robot creature that should nestle in the corner between a cabinet and the wall. Every day it’s wheeled a little further out in the path between myself and the door. Nobody puts baby in the corner, it should say.

I feel the same way about Dom. Nobody puts baby in the corner. He’ll be out dancing in no time.

Sunday, June 25, 2017

Letting off steam

We had our friend visit again. The one who brings his own mask, doesn’t touch anything at all, and I think does not even exhale.
We had a great visit talking about many things as if we were sitting round a dining table, rather than on hospital beds and vinyl furniture.
I shared with him how it is an odd feeling to wake in the morning to 2 or 3 voices. I’m never fully rested, but I’m awake. To wake with people in their work clothes doing their work thing in your bedroom makes one feel almost infant like. I open one eye, Dom’s looking at me stirring. I open both eyes and ask him how he feels. “Good morning” I hear from the end of his bed or behind the computer. Actually, I don’t feel infantile. I feel royal. Or at least some Hollywood version of old royalty where they had attendants ready to jump as soon as they awoke.
Our friend laughed as I shared that I have coffee in my hand before my feet even touch the floor.
Lest you think I’m getting too big for my britches, it’s a steep price to pay.
But we laugh at it all. We laugh with his sister on FaceTime that we have a wired remote for the TV, lights, and a big red button to call for jello all night long.

These past few days have been really good. The calm before the next storm. We do watch the numbers on the white board. We’re seeing the patterns and can better anticipate when he’ll be hooked up or be free.

He and I are very conscientious at home. We eat leftovers regularly and rarely find ourselves throwing away any food. In the thick of it here, Dom was really struggling to eat. As you all hear regarding chemo, I’m sure. So, in his wisdom and humility, (make that just humility), decided he only would have breakfast and dinner delivered. So, naturally, the next day he had a massive appetite. Lesson learned. Bring all the meals. You just have to let go of some of the things. Now is not the time we’re going to worry about being wasteful people. Sorry planet. We do our best most of the time.

We learned when the phone rings in our room, it is actually for us. We just sat here staring at the phone ringing wondering who could be calling us, surely it was a mistake. The nurse came in to let us know the kitchen was ringing us. They were perplexed as to why Dominic had ordered just watermelon and mustard. As were we. I guess somewhere along the line they dropped the sandwich. It gives me confidence in the kitchen that they realize mustard and watermelon are just not a thing. Yet. You crazy foodies.

We had the funniest nurse yesterday. She had a thick accent I struggled with, but Dom had no problem. As per usual, Dom was her refuge. She’d appear randomly in the day giggling like mad telling us about her other patients that were grumping at her. You don’t know me, they’d say. You don’t know all the things. I know more, they’d say, resisting treatments and instruction. High drama around here. They did not like to be told they were confused. I guess our nurse today has the same patient load because I heard her saying to another in the hall that two of her patients are confused, so if she sees anyone wandering aimlessly in the hallway to let her know. One of yesterday’s patients actually unhooked his lines and took off.
Of course it’s serious and sad business. But nurses gotta let off steam too, so for now, we’re the safe room, the fun room. I’m sure on the days the chemo wreaks its havoc, they’ll mostly know to simmer down. Except maybe Terry. But we haven’t seen him in days. And this mama bear found her footing.

Our weekend Doctor just came by. He’s from Lebanon. He and Dom talked about accents. The Doctor has tried to curb his accent, but cannot, so Dom generously said, well, it’s a second language for you. No, it’s the fifth. He speaks five languages. And is a doctor. And….from what I gather from the gossip, his family is filthy rich. This is not work for him. It’s his vocation.
All that money though, and he’s jealous of Dom’s hair.

And so that is life.

Friday, June 23, 2017

More views from the 4th floor


Dom is eating cheese.
Ya'll may think this is no big deal, but cheese is everything. Cheese is what we do on those days that we're home working on our jobs and projects and we need some quick, yummy food. We love the cheese. When he asked for the cheese, it was like a piece of home for me. It was the first non-hospital food he ate in a week.

It has been full throttle since our visit to the ER a week ago yesterday. But now, we're between chemo treatments, and he seems to have stabilized, and he's eating. Not just the cheese or the beige hospital food either. He has had watermelon every day since Tuesday. Every meal. Every day. Watermelon. Carolyn, who comes by to take his meal orders heard him say he has a craving for watermelon, and now it's a thing. I think he's pregnant.

We have a bouncy, chatty nurse today who has explained some of the secrets of the hallway. Every room has a board outside with sliding pieces of plastic that slide  to reveal options to communicate the patients' needs. It reminds me of a child's toy to learn reading, except there would be a picture  of a dog that you slide to reveal the word dog. Options include: neutropenic, or isolation, or fall precautions, or no visitors, or nothing by mouth, or leave door open.  My favorite: Quiet Time Healing Time. Some doors have an extra new agey looking paper sign that says the same thing, quiet time, healing time, all swirly letters and fancy and I think someone's passing a peace pipe in the photo.

Some of these are very curious to us. Why must the door be left open? Why must there be isolation? Why does one room have to leave the door open, but there's also a huge red stop sign on the floor as you exit that says wash your hands when you leave. When you leave. There is something in that room that must be washed off hands before leaving, but the door must be left open. Curious.

I wondered if any of those would apply to Dom. I'd already covered the fall precautions, because who slid that one open? Were those signs in our future? Would there be a big red stop sign at our door? We hope not. Turns out the isolation and the stop signs signify something other than and in addition to the cancer, and thankyouverymuchcancerisenough.

Every room has a computer on a stand. The hall way is also littered with computers on rolling stands. If any of you are Whovians, you'll know what I mean when I say I sometimes feel like I am in the Library. They look like one eyed robots on wheels. I glance at the screens when the nurses are signed on. When they're not poking or prodding or pill pushing, they're looking at spreadsheets of endless numbers. Everything is measured. Everything. And timing is everything. 3 am is the time to draw blood. Taking their cues from bats, I suppose.

Today, I did a load of laundry. In my new community apartment. Did I tell you I did some yoga the other day? I never see anyone in the family room, which consists of a living room, kitchen and dining room. I use these terms very loosely. I laid out my yogitoes in the dining room adjacent to the kitchen and began my practice. In came someone for a popsicle.  I tucked myself a little more out of the way. In came someone else. And someone else. And someone else. So many things were suddenly needed in the kitchen. Breathe in. Breathe out. I haven't seen anyone since, and I've spent some time in there.

Yesterday was a particularly difficult day. It was like we made it through the first gauntlet, and Dom felt better, so I could lose it. I have to move the car every day. I'm not 100% sure why, but I walk down to the main Oncology nurse's station and get a pass. I go down two floors to the bridge and insert my parking ticket, and then my pass. Then I get my ticket back, go to my car, exit, make two lefts down one way streets, pull into the garage, get a new ticket and park in my spot again. It's really rather ludicrous and I feel silly.  I've decided the purpose of this venture is to get a new bubbly water to stash in the fridge. I have a case in the back of the car.  I'd feel pretty ridiculous toting a Costco case of bubbly water through a hospital, so every day, I grab a bottle or two. Dom likes his bubbles.

The tears would not stop yesterday. I just rolled with it. It's in the manual. Page one. Roll with it.
Coming back from my car, I noticed a miniature pony in the parking lot. A serious real, live miniature pony. If the pony was a girl, I'm sure it would have been a cheer leader with heart shaped lips and perfect posture.  I wanted so very badly to press my face into her neck. But I knew she was headed to a children's wing, and I knew that's where she belonged, so I kept walking. Inside, two women had a pair of gorgeous dogs on leashes with their little important vests. Again, I wanted to stop them and bury my face in theirs. And again, I stopped myself.

We don't get animal therapy. We get music therapy. When I returned from my bubbly reconnaissance mission this afternoon, there was a guitar and an amplifier outside our door. I stepped inside to a fresh faced young woman who offers music therapy to patients. We talked to her for a little while, and even if she never sings for us, she encouraged us to think about music. To be honest, I'd rather play with some legoes and snuggle a pony, but I'm grateful this hospital thinks of all the things.

Our days are broken up with walks and meals and doctor and nurse visits and we turn on the television every so often and realize it's still garbage and turn it off and go back to reading. We walk several times a day. I feel like a freshman in high school next to Dom with his full head of glorious hair that screams out "hey, we're the new kids." He will lose it. But for now, it's still there, unlike most of the the others we pass. It's awkward. We're in this together, all of us here in the Oncology unit, but we don't know each other, and the thing we share is bigger than we want to handle. I said hello to the plump opera singer today and she stopped for a moment to say hello back. She, in her scrubs and baldness looked more alive than her companion. Her hair is going to grow back and she is going into remission and she is going to live life to the fullest. I just know it. Dom and the skinny man nod at each other and kind of mumble a dude hey or some such.

Sometimes we pass that awkward person. The one visiting a relative, so they're not quite as dug deep in as I am. They're still processing their own business, loitering in the hall because the rest of their family is still visiting but they are just done. They say to Dom "hang in there" all sad faced and weird; like some hybrid football slap and pity face. It's okay. Cancer is awkward. To say the least.

I've said it before, and I'll say it again, Dom is a hit on the ward. The nurses poke their heads in and express their sadness that they did not get assigned to him that day. I guess some people resist the treatments, and naturally some are surly. But Dom is seeking wellness. He doesn't complain. He is charming and compliant. He is thankful and grateful to be here. As am I.