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.