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.

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.

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.