Sunday, December 10, 2017

Relief train and reflecting

I'm still riding the relief train, and occasionally crossing the track and jumping on the worry train. We know worrying doesn't solve anything, so quick as I can, I hop back to relief.

On the whiteboard where all Dom's numbers are written, and we eagerly watch numbers rise and fall, there's a number on the bottom now. Today's reads +12. That's how many days post transplant we are. All the numbers are doing their thing. Dom is doing his thing: Sleeping.

To look over and see the love of my life cocooned in his bed eyes closed, allowing regenerative sleep to take over, I sigh. Even as I write he stretches awake. The machine that holds all the formulas of all the liquids being carefully pumped into him seems to go crazy at night. The smallest air bubble, and the beeping begins. We've traded off, him waking and calling the nurse or me jumping out of bed heart racing and silencing the thing myself. We've both become pros at tap tap tapping the bubbles away and restarting. He's even more pro than I, going as far as opening the boxes and yanking that tube into submission.

On Wednesday, we will have been here for three weeks. In five days, it will have been seven months of this journey.

For seven months, I still find myself giving a panicked glance toward the lock on the door in the restroom that opens into the family room that has lately been more occupied than normal.

We don't know if the fatigue Dom is experiencing is from the transplant or lack of sleep, but I let him sleep as much as possible. I pad around in my slippers and pajamas even at noon in the corridors because I just don't care. There was a marathon here last week. One of our nurses ran the marathon. She has the prettiest voice, and I could talk to her all day. I think she could run all day. The route was just next to the hospital, on the side with the view. From 7 am till 1 pm, nearly all the streets around the hospital were blocked for the marathon. So. Our doctor arrived at 6 am for his rounds. You bet I was still sleeping. And so was Dom. And there we were all groggy eyed and hopefully covered and snapping to attention while Dom has his heart checked and his ankles squeezed. And when you've been awakened enough times by people coming in and out of your room, you really don't care anymore about wearing your pajamas in the hall. (Mind you, I'm not one of those people who wears their pajamas out in public. Those people do exist. I am not one of them. To tell you I don't care says something. I don't even wear yoga pants out in public. Unless I'm running into the market for a beverage. I put the yoga pants on, do the yoga and take them off. ) So, I'm sitting here in my jammies even as Dom has gone back to sleep, "for 20 minutes more".

I'm going to miss people here when we're discharged. Our friend from Santa Rosa is hoping to leave on Monday! He had his own stem cells transplanted the day after Dom, so it's an easier recovery for him. I'm going to miss his partner with the long white blond hair and perfectly cut fringe who looked like an angel walking through the halls.

I've met another woman from Santa Rosa. Her husband is the new full head of hair in the hallway. Her family is the very large family that would come and move into the family room. She is as sweet as can be, and has had to leave a two year old with her parents. When I see them pass our window, 7 months seems like so long ago, when Dom would walk the halls with his full head of hair. It's coming back. I'm sure.

I wonder what I do all day. My day is a blur of navigating Dom's needs or my own needs, punctuated by moving the car. He naps, and if the machine sounds off I race over to quiet it down. I go to the kitchen and run into the daughter of a patient and we commiserate about this situation. The hand of cards we've been dealt. I talk to housekeeping, nurses aids, dietary....there's a steady stream of people in here and I'm a captive audience. Or they are. Either way. The days flow into each other.

We're at the sore throat stage. It was almost a guarantee. The pre-transplant chemo packs a punch and is most felt in mouth and throat with soreness. Dom was feeling good for a couple days, but this has gotten him a bit low. He's sleeping a lot.
I think of his sister Sam a lot. She's the yin to my yang. I waffle between bad cop/good cop. I know Dom is exhausted and in pain, and I want to just baby him. I also know he absolutely needs to walk and shower and do all the things. If he doesn't walk and sit up, his lungs will begin to cave in on themselves and that's a set up for worse things to come. (Cave in on themselves is a medical term. Honestly.) Sam cheers him on from afar, and when I need to be soft with him, she can be the one to tell him to get up and walk. Or, when I need to be firm, she sends him all the nurturing love he needs. It generally works out that way, whether Sam and I plan it or not. 

I think of her at very particular and nondescript places, since she spent some time here. I think of her at a strip of grass just outside the parking lot. Every time. I think of her in the kitchen, knowing she carefully picked things out at the market to entice Dom to eat. I think of her every time I move the car and have to check in and get a name tag. We didn't need to check in with security and have name tags until she came. I remember walking into the room after she spent round 3 with Dom. There was a name tag on her cardigan, and somehow, I just associate that little act with her. We both miss her very much.

The nurses are about to change shifts. I really don't have one complaint. Our day nurses have been so understanding of Dom's need to sleep even during the day. They float in quietly to take vitals. Sometimes we get to chat and be human. I think Dom loves when people talk around him, and he can quietly listen and chime in as he feels the energy.
Tonight, we think we have Dee again. Dee is the nurse who made a joke about Dom's blood type and the need to just b positive as she swooped in our room one night to shush the machine. We've loved her ever since. And yet, she had never been our nurse until just this weekend. It was kind of a joke after a while. We'd see her in the hall and shrug our shoulders like, when is Dee going to be our nurse? And then of course, the night Dom spikes his fever, we get Dee. We were so happy to have her, and then I felt a twinge of guilt like hey Dee, we're the cool low maintenance patient....come be our nurse and run all night keeping the machine quiet and taking 15 vials of blood.

I wish so many times throughout the day that I was independently wealthy. I want to shower everyone here with gifts. For now I try to be as easy as possible, and always say thanks.

So here we are....so far away from seven months ago and creeping ever closer to the finish line.
And for some reason, I'm feeling nostalgic. It's difficult to think that a couple months from now, as we're tucked back into our little cottage, cuddling with our kitties and tackling the overgrown outdoors, I will be nostalgic for pieces of the most difficult year of my life. But it would be true.

Tuesday, November 28, 2017

Sweet relief, part one



The crash cart sits just outside our door.
The one no one spoke of.
The one I did not notice until after Dominic was surrounded by nurses and pharmacists and the doctor and the life giving stem cells had already flowed into his body.

They were coral colored. Such a beautiful shade.

I love our nurse Karen who walked us through this day. I'd asked for her. She's an absolute favorite, and I was so grateful she was the one with us today. Karen knows the way I roll. She knows that somewhere, long ago, we knew the dangers we signed up for having a bone marrow transplant. But, as Dominic lay in the bed, vulnerable, probably a little worried, we did not need to know that in some cases, a crash cart is needed.

I asked her if that cart outside the door was for Dom, hours later, after the ginger beer had been toasted to Dom, and he'd had a refreshing nap. She'd returned to take his vitals, as she had done every 15 minutes. She smiled and told us that indeed, the cart was for Dominic, as a just in case measure. "Do people really need it?" Dominic I guess hadn't really thought that far ahead. He was nervous, naturally. But the impact of the possibilities settled in.

I was worried the day we arrived. (Who wouldn't be?) But, we weren't in a room big enough for a cot  Not only was I overwhelmingly worried about this incredible event coming up, I was worried about the small stuff. My heart sank a little as I wondered if this day I'd been waiting and waiting for would be full of stress and anxiety for me due to the many personalities in the room. I wanted so much for it to be full of all the love and calm possible.

I spoke to the charge nurse on Sunday and mentioned I'd hoped for a bigger room. It's an interesting thing that Dom and I have been here so much that before I asked for a bigger room, I spent about ten minutes just shooting the breeze with her and two others, and we very easily could have been girlfriends out having a laugh rather than in this situation. She looked through the patient log, and apologized that no rooms would be opening. I then asked if she knew who would be working on transplant day. She read the names off to me. I'd honestly hoped she'd be one, I'd hoped for Nico or Aimee who are such familiar and wonderful faces. She read some names that weren't my favorites. Names I knew would make me a little crazy. Did I mention the nurse had to take Dom's vitals every 15 minutes today? So. It was important to me to have a voice here. When she read Karen's name, I brightened up. Karen. Yes Karen! All along, I'd hoped for Karen. (I have a cousin named Karyn, so I'm immediately in favor of Kare/yns.)

Karen was our nurse the day we were prematurely and incorrectly informed Dom's brother was a match. Karen didn't smash our hopes, but she was very level, and encouraged us to hold tight. She never blew any sunshine or shared anything too scary. She's just all the right notes of information. All the time. Whenever she wasn't our nurse, and I'd pass her in the hall, I'd be kind of jealous of her patients. Can you tell I like Karen?

When I heard Karen's name, I threw crossed fingers in the air and said please.

And a half an hour later, the charge nurse found me to let me know a bigger room was suddenly available. 

So here we are. Post transplant. It all happened so fast. Our dear friend came to be with us. She and I sat together as the nurses unpacked a giant box of life. They answered our questions as they spread papers out, put the heart electrodes on Dom's chest, and went through all the steps of preparing to change the course of someone's life! If I understand correctly, the cells are shipped in such a way that they maintain close to body temperature. Too cold, or too hot and they would die! Just a few degrees of leeway there. Our coordinator had told us, when I expressed fears that the cells would not make it to us that no matter what, even if all flights are down, they'll charter a private jet to get those cells to the recipient. It's really awe inspiring, this whole process.

The doctor was called, the white coats assembled, my heart swelled, Barbara and I were invited to be right next to Dominic, I looked for our theme song, I got distracted pressing play and low and behold, the tiniest little bag was hanging there half way drained before I realized what was happening! I'd made a whole playlist, and before the first song was even finished, this long awaited thing. was done.

I squeezed and squeezed and squeezed Dom. Barbara and I hugged teary eyed. The white coats had a cup of ginger beer and everyone shuffled out of the room. Except Karen, who so attentively cared for Dominic.

Here's some technical bits: They only intend to give him stem cells. Centrifugal force separates the stem cells from the blood cells. A trace amount of blood cells can be left behind. Since the donor and Dominic do not share the same blood type, there was a little more cause for concern. There was a possibility of him having a bad reaction that could range from a mild allergic reaction, shortness of breath, or severe enough to bring in the crash cart. (Worst case scenario, actual resuscitation.)

None of that happened.

And soon enough, my love was in a Benadryl induced sleep.

And I was giddy.

Barbara kissed Dominic goodbye and I have gathered my thoughts.

And this is what comes to mind:

All this time, all these months, there's been this thing nagging at me. Dominic's life in some ways was dependent on another person. Without being super literal, it's been like the quest for the Holy Grail. It's this thing we had zero control over. We could make all the chemo appointments,  take the pills, all the pills, pay all the bills, walk, eat right; but until that one special person stood up and said yes to the call, there was this one thing we could not make happen on our own. We were at the mercy of another. And so, we've been refined by that. The waiting. The wondering.

I know we have a long road ahead of us yet. There's still a lot of possible complications. There's still a lot of heavy lifting to be done, and mostly by Dominic.

But I no longer have to lay in bed at night wondering if someone would match, if someone would commit to the time involved, if someone would endure the visits for injections to stimulate marrow production, would agree to a catheter being inserted in their body to collect the marrow, and then sit for hours while it was collected. I no longer have to wonder if they'll stay healthy until they've donated. (And beyond. Boy do we wish this man all the very best.)

I also don't have to wonder if they'd collect enough. They collected more than enough. The remainder of cells are in cold storage, available should Dominic need a little boost along the way. This donor was above and beyond.

I don't have to wonder if something would go terribly, terribly wrong, and they'd rush him to intensive care.

I can check all of this off my list.

The last bag of chemo is done.

The wait is over.

The miracle has happened. 

We've leapt over an invisible fence and made it safely to the other side; the side of regeneration and new life.

We've been given the cup.

Now, we ride.




Saturday, November 25, 2017

Thanksgiving~

I'm back in what has come to be our second home.
I'm sitting on the oh so familiar beige vinyl couch with a fluffy scarf around my neck and laptop, well, on my lap. Dr Kiwan says why are you always on your computer? Every time I come, you're on computer. He missed my handstands earlier, I guess.

We spent our Thanksgiving in the hospital. Most of you know this is where we'd be. Before we left, I baked some (gluten free) pumpkin pie cheesecake to bring for Dom to enjoy. I also baked some cakes and bread for our nurses and the people that make our stay comfortable: the nurse's aid, the gal that makes sure Dom gets his food orders, important people like that.

The refrigerator has become somewhat of a beast over the past six months. Somehow, in June, I owned that thing. Do you remember the front desk lady and I having a discussion about why can't I have my unopened bottles of bubbly water in the fridge for more than three days? I think I broke her.

This trip was the third (?) time there was a red target bag in exactly the same place on the door. As another family member and I unloaded on Wednesday morning, we had a discussion about the 3 day rule and the quantity of items clearly passed 3 days. She complained to the charge nurse who assured her someone would take care of it. I walked by and highlighted her complaint by pointing out that when we peeked in the bag, the contents were green. And furry.

Nothing happened.

Thanksgiving morning and the red bag lives.

How did you spend your Thanksgiving you ask? In no way is this meant for sympathy, but I spent my morning cleaning out a fridge in a hospital. Why not? I had thoughts of just throwing away the contents and leaving the bag for the owner, but when I grabbed the red bag to throw it away, it was stuck. Stuck I tell you. Some genius had thrown a bag full of poorly contained leftovers on its side and brown goo had spent, well, since JUNE creating a glue. The date on the contents was June.

See. I broke her. If I want my bottled water for a week, I guess brown goo gets months.

Thankfully, I had grabbed some latex gloves from our room. I pulled the disgusting shelf out and put it directly in the sink. Then, I found the bleach wipes. The bleach wipes in a container with a warning that it's not for babies. To illustrate the point, there was a crawling baby with flames coming out of its diaper.
It took the volume of water to fill a pool to get that shelf clean.

But that's what I did on Thanksgiving.
And I'm not sorry.

Even if a family of about 30 almost literally moved in that day. Even if they filled that fridge and left a cooler on the counter and a baby napping on the couch and food on every surface and kids sitting on the floor lining the walls. Even if I had a little girl of about seven staring at me as I made Dom's smoothie with my unapprovedbyelectricaldepartment hand blender. I smiled at her and she smiled back.

According to Dr Kiwan, who is here for Dr Carroll over the holiday, Dom is in the honeymoon period. He feels great. He should stay feeling great until about a week after the transplant. We're hoping he feels mostly great throughout the whole process.

Science corner: They used to be able to completely eradicate symptoms of host v graft. They've found that allowing a little bit of host v graft symptoms allows for less of a chance of recurrence of the cancer. Okay then. Whatever it takes.

It's a great relief to be here. Finally. We've jumped through a lot of hoops to get here. I've bitten a lot of nails. Each test of his organ function was a bit of a stress for us. The doctor is usually very serious. He's yammered off medications and expectations so many times he slips into a somewhat robotic and dry persona. He comes in head hanging low and Dom begins to panic. The fear creeps in that something's not right. Of course it's all good. His organ function is great. His CBC's are great. We know it's just one foot in front of the other, but honestly, I'll really breathe again when those baby stem cells are in and making their way to his bone marrow. Three more days. Just three more days! And once they're in, those little swimmers will take about three hours to make their way to his marrow and two weeks to en-graft.

I really wish you could have seen the Doctor play air guitar for Dom on Wednesday morning. I wish you could have seen the faces of confusion and what just happened amongst his entourage. I don't know what Dominic has tapped into with this man, but a side of him comes out that no one has seen before here. (At least that's the word on the street....)

So, maybe we'll play some punk rock on Tuesday as we surround Dominic on his new second birthday.

And, regardless of the origins of Thanksgiving, regardless of how many warm and wonderful Thanksgivings I have spent round the family table or hiking in the woods, this Thanksgiving is the best so far, because this marks a new beginning and there is so much to be grateful for.
I am planning on next year's being even better though.





Saturday, November 04, 2017

Fire and Water

What a time this has been! Who ever could imagine all the twists and turns this year would take. You'd think a year ending in 7, a number with an almost right angle would not have so many twists and turns. One sharp left, maybe...but this has been more like a crazy 8.

This year began with nearly losing a kitty to an infection and a lost filling just before boarding a plane to visit Ma in England. I thought that was all the excitement 2017 had to offer. I thought I was done with major life events for the year.

Little did I know.

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

Up in flames.

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

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

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

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

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

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

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

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

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

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

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




Tuesday, October 17, 2017

Hugs for days

It has been one full week now. A week since Dominic could barely lift his head off the pillow. A week since I waited breathlessly to hear my Mom and her husband escaped the fire. A week of scouring maps and news and facebook to follow the fire's every move.

And Dominic and I are being so held. I want to share more about where we are, because friends, it's time for some light shining bright. Brighter than a wildfire.

After Leslie and her family performed triage, we made our way to another home. I wrote my childhood mentor and friend, telling her we were evacuees and snap, she'd arranged for us to stay with her 94 year old mother. Her mother still lives alone in her childhood home. As it turns out, the home was built the year Dominic was born.

I have been to this home before. I remember my friend Lisa telling me stories of her childhood, and her parents and siblings, and one year, she took my other dear friend and I to her home, over 2 hours away from ours for a family weekend gathering. It sounded so idyllic. I remember arriving and the excitement of being here, and seeing the home that had helped to shape my friend.

I teared up last week as I went up the familiar hall stair case and remembered the first time I'd studied all the family photos lining the steps. When I visited over 20 years ago, the bedrooms were as the kids had left them. One of the rooms was covered in posters; Hendrix and Beatlemania. All that's left is a thumb-sized newspaper clipping of Paul McCartney's head taped haphazardly in the closet. We've comfortably spread our bags out here, and as we move throughout the week and change our clothes and the tightly zippered bag lies open and untidy I breathe more and more easily as if a belt is being loosened around my waist.

We're so comfortable, tucked in upstairs. Dominic can rest when he needs to or just be.

But, the best part, better than being comfortable, is hugging Edie. This woman. Wow. She needs four hugs a day.  Sign me up.

I've never seen Dominic bounce back so fast after chemo. I guess when you don't know if you'll still have a home, and you are being dragged around at your wife's whim, you rally.
Edie is quite independent, but she has given up her car. So, she makes do with what she has, including visits from Meals on Wheels. She does have children nearby who are very attentive, but her independence is astounding. I took her shopping the first day so we could both have groceries.

Dominic has cooked two meals since we've been here. I'm so glad he has someone to eat fish with. We sit around the table and visit and I'm sure it's been so healing.We both love hearing stories of her life.

She has been a nurse at a camp in the mountains for ever. She continues to go as the camp nurse, every summer. Think about this, the little ones that she tended to are now in their 60's at least! They return and look for Edie and all is right with the world.  Everyone is greeted with hugs.

When I hug Edie good night, I feel an extra smattering of special. The hugs she has given throughout her life do not cheapen their value, as things are so often cheapened by quantity. To the contrary, being just one of so many increases the value. This woman who has touched so many lives, who has raised four amazing children, and then there's her grandchildren! This woman carved a space for Dominic and I. To get to be in her home, in her life is one of the most amazing chapters on this journey full of hope and amazing.

Sunday, October 15, 2017

Fires rage on

Remember a while back when I requested that you buckle up because this was going to be a wild ride as I process the wave of emotions walking with Dominic through cancer, and a bone marrow transplant? I had no idea then just how bumpy this ride could even get!

Most of you know by now that our house is under threat in one of the worst fires in California’s history.


As Dominic and I were in Sacramento when the fires happened, we stayed in Sacramento to ride it out. So grateful to our several friends who have offered to take us in. We’re currently residing with an old friend from high school who I have not even seen since. But we’re friends on facebook, and I’ve so enjoyed her and getting to know her and have been wanting very much to visit with her. Well. Not this way. But what a treat to meet her girls and her husband and her pets even. Don’t tell her, I am stealing all of the doggies and kitties. (I am editing to say we are now with another friend in Woodland. I will definitely write about this lovely experience.)

I’m still sleep deprived, still delirious, still not eating much. All things I ought to be taking care of so I can take care of Dominic.

I thought I’d try to return home to retrieve what I could. I’d heard my neighbors were going to try.  But just as I was getting out of this completely foreign to me town, I got a call that it’s just not worth the drive. I likely wouldn’t get to the property and my friends, my angels would fetch what I really wanted. Which turned out to be cat number two.

It hit me as I was walking through a Winco grocery store. Ya’ll. We don’t have Wincos in Santa Rosa. I go to tiny little markets so I can move around quickly, get what I need, and get out. I don’t need a thousand options. And I certainly don’t need camping gear. I just need one quality thing.
Anyway, I was walking up and down the aisles and I can’t read any of the signs above each aisle telling me what’s what. Not even squinting. I just can’t see. I realize that I’ve been scrolling or crying non stop for four days. My eyes are shot. This store is huge and I can’t figure out anything. I went in for pineapple juice and before I knew it I needed a cart. It’s not that they had great stuff. It blew my mind how not great it was. It’s just that I couldn’t even think straight. And I realized I’ve had this feeling before. This deep heartsick feeling of helplessness. Sometimes, when you do the most common activities after your circumstances have changed dramatically, the activity becomes over whelming and all the existential thoughts about life start churning. How could Dom and I be facing such great loss again?

I felt a heaviness akin to that which I felt while walking toward my car in the parking lot of the hospital and still not comprehending what was happening after the Leukemia diagnosis. I thought I would lose it in the great big cavernous weird store that was culturally so different from my beloved town, and I just could not. My mother has lost everything, and mingled in her everything are some of my things, things from childhood she kept for me and things she liked so much that I’d inherited from Grandparents and Dad that I let her keep them. I grieve for her. I grieve for me. I grieve for so many.

I see my friend after friend referring to their packed bags by the door, waiting for updates on the fire. This is how Dom and I have lived the past 5 months, bags packed by the door for a fire in his body. Any fever, as you know, could mean a race to the hospital to beat sepsis and even death. I am well acquainted with bags packed by the door.

I plowed in circles returning to places I’d already been, realizing something else was needed for this unplanned holiday. Yet another unplanned holiday in this already overbooked season. I kind of feel responsible for this fire, because as I’ve mentioned before, I lay in bed at the hospital with great concern of what if there is a disaster and Dom and I are separated from family? And that is what has essentially happened. No way to call my Mother for days. Not knowing if her house still stood. Mapping out routes to get to places and having to drive great distances in circuitous routes due to road closures. I wanted her to drive to my house the morning after she evacuated with nothing. No bedding. No treasures. Just her life. She could could not get to my house even if she wanted to. And that is just as well as my house was soon to be evacuated as well. That was a story I read over and over. Folks evacuating to a friend’s only to be evacuated from there. That is how intense and crazy this whole thing is.

Today, Dom and I don’t say it can’t get any worse. We wondered if it could get any worse once we knew he’d need a bone marrow transplant. It could. It did. And yet, we’re okay.

When I pulled up to the Winco, there was an older man in a mobility scooter with a Marines baseball/trucker hat. He looked desperate as the alarm of his truck was blasting, had been blasting the whole time I sat in my car texting updates. I asked if he needed help, and he asked if I could help him. He’d locked his keys in his truck. I called Triple A and sent for help. I asked if he’d already done his shopping and he hadn’t so I sent him in to do that. I waited next to his truck and someone approached me with the hustle. The woman who had just so tenderly offered to help one man realized she was done. Toast. “You need to get away from me now” I told the hustler. I don’t even know who I was just then. My adrenaline was racing and I knew I just couldn’t.

Then the man in the scooter arrived back and we chatted for about 5 minutes before the help truck arrived. He said he he was so happy I was helping him because he didn’t feel well and needed to get home. Oh geez. I stepped back and said no offense, my husband is receiving cancer treatment that makes him very vulnerable. He cannot get sick right now. Then the man told me he has COPD. Oh….okay. He told me his throat hurt, and I said it’s because of the fires. What fires? He didn’t even know my town, my world is on fire. I told him how bad it was and that my mother lost her home and that he should be indoors because the air is toxic, even out here in Sacramento. He said he didn’t know what he would do if I hadn’t helped him.

I don’t even know if I should have helped him get in his truck and drive, as he pointed out the red paint on the side of his truck where he swiped a pole. He was sad about the scratch. Then, I watched him park his scooter on the lift and painfully moved about securing it. Every movement was through molasses. And I took his groceries for him and watched him walk to the driver side door using the body of the truck to assist him. I’m not sure if I did a good thing or not today……

My two cats have been rescued and are being cared for at Caroline and Brad’s. I’m so relieved they’ve been scooped up. One was rescued the night I barely slept. The night Brad and Caroline went back to the ranch to grab a few things because it did not look good at all. The night we were awakened to news our house stood.
The other was rescued yesterday and very chatty about his adventures. I’m so grateful to have my boys at least.

We’re not out of the woods. Winds are still a huge threat….and well…when is anyone ever out of the woods? I mean really? This life of ours…it’s precious. None of us knows anything about what tomorrow may hold.




Monday, October 09, 2017

The wind that made the snow flamed the fires

This morning, I was awakened to text and voice messages asking if I was okay. Rubbing my eyes as panic began to set in.
Currently, one of the most destructive fires is raging in California and my town is being decimated.

I immediately tried to call my mother, to no avail. She's in an evacuation zone. She is a ludite. No way to call or text.

I responded to the safety inquiries as efficiently as possible.

And cried.

I got my neighbors to gather Dom's equipment in case of evacuation. And my kitties.

I frantically tried to call my mom again.

Finally, a call came through and she is safe. My mother is safe. And that is all I know. That is all she could tell me on the borrowed phone...I burst into more tears. She is safe.

I've been glued to social network sites for news, inklings if my Mom's house is still standing. Inklings if my house will make it.

I've been in love with everyone. Every check in of safety. Every post of fear, agony, relief all of it. Everyone in my circle after circle after circle is my people. A nurse's aid came in and suggested I step away from the computer, but I couldn't. I needed to see my people. I needed to see people were okay. I needed to share in people's grief and fear. 

I've been thinking of how we live from one tragedy to the next. Even before today, even before my town is the one in the news being declared a State of Emergency, I'd been thinking of this. And now the tragedy is mine. It's right here. Literally in my back yard. And hopefully, no closer.

When your husband's life is on the line, the husband you've waited way too many years to meet, when he's giving all he's got to ride each wave of nausea and fight this beast, and we wait and wait and wait for a donor who will mean the difference between life and death, other people's tragedies are different. They're not less than ours. They're fuller. More robust.

Even before this diagnosis, our hearts would ache for others. I was just the other day thinking of the devastating fires a year or two ago, and how I gathered some of my nicer things for a family and was wondering how they've managed since their great loss.  I had no idea what I could be facing.

Since the day our world turned upside down, we've watched many tragedies. We've struggled to comprehend how one day Dom could just be humming along in life, and the next day flat out. But still alive. While others experience the same humming along....and their life is over in an instant. There's no rhyme. or reason. One house is burned to the ground, the house right next to it is standing. It makes no sense. The fire doesn't judge. It just consumes.

We've looked at each other with a sort of incredulity as police officers are gunned down. Fires rage. Legends die. Hurricanes and floods and earthquakes take and take and take without giving back. Motorcyclists and bicyclists are taken out like flies under a swatter. A man stands in a window and shoots at people for no apparent reason, yet his bullets rain down and arbitrarily snuff out precious lives.  Wars and rumors of war. Angry mother nature.

And heroes are everywhere. They're in great big trucks plowing through floods. They're in fishing boats and canoes. They're laying over their wife protecting her from the spray of bullets. They're standing up to hate and choosing love. They're inviting people over to dinner. They're fighting fires. They're calling. They're bringing diapers to an evacuation center. For floods or fire. We all have the same needs. To have shelter. To have food. To have water. To have sanitation. Or, if you're my husband...and so many other people,  you have extra needs. Right now, he's receiving blood, finally sleeping after an agonizing morning of nausea. Somewhere, there's a hero who sat in a chair for an hour watching their own blood drained for another to have life.

And I couldn't hate a single person just now.

A friend of mine shared a photo of snow in Colorado this morning. A first snow of the season.  A lovely little sprinkling of snow that would be so refreshing in the North Bay. And just after seeing that photo, I read that the same winds that caused the snow in Colorado are the winds that whipped the fires to a frenzy in California.

I don't know what that means if it means anything at all. But I think it does.

The same winds that are responsible for frenzied fires in California brought a sweet little dusting of snow in Colorado.

My Husband's sister, my sister reached out to me as I was waking to this terrible news. From the other side of the world, before she went to sleep, she lifted prayers and love for us. She's praying for my Mother too. Because my mom is her mom. And she was like a sweet, refreshing snow from across the miles, across the ocean, across the globe. She is right next to us.

I don't want to mark my days by tragedy. I don't want to think about how we barely got over Texas before Florida before Mexico before Puerto Rico. I don't want to live in worry about my home burning down.  (Which is a worry I've lived with long before today.)

Another transplant patient calls this the year that wasn't. I'd fallen into that myself. But Dom stopped me. He doesn't want this to be the year that wasn't. He wants this to be the year that was. The year that he is reborn. The year that is. The year that the grass became greener and the sky bluer, and everything came into sharper focus.

And I get what he means.

And I agree.

With all that is going on in the world, I want to mark my days in love. I want to mark my days by heroes. I want to mark my days by sweet gestures of kindness sprinkling around like a refreshing snow fall.
I can choose to let myself be whipped up in a frenzy, or I can be a sweet snow fall.


Post Script~
One of my favorite hymns growing up has been on my mind and between my ears. Just the first refrain. Over and over. It is  the only way I can find peace. To know. In any case. That it is well with my soul.

When peace like a river attendeth my way.
When sorrows like sea billows roll.
Whatever my lot, thou hast taught me to say,
It is well, it is well, with my soul.