Christmas Lights Hope Lights

I think we're going to drive through and see the Christmas lights on the Fab 40's in Sacramento tonight. We have a very early appointment for a pulmonary function test and decided to drive in tonight and stay in a hotel. Not the place we stayed that terrible week straight out of the hospital. Not a glamorous hotel either. Just a nice place where I got a nice discount with a special code for transplant patients. We have lovely friends we can stay with, but we're setting out almost with a little holiday in mind, and a hotel for just one night on my terms sounds a little dreamy.
 
And this day, this is Dominic's birthday. Not his actual birthday, his second chance birthday. The feelings all pulsing through my heart are palpable. One year ago, we watched the bright coral colored stem cells flow into Dom's body, and we went to bed that night in the glow of my battery operated Christmas lights with the knowledge that he'd made it through that first big hurdle of accepting the cells. We fell asleep feeling like our whole lives were before us.

It really felt like an actual shift. All the chemo is behind us. All the anticipation.

Well. Not all the anticipation. We still anticipate what is next. But the donor had been found, and the job was done. So now, we hope. We persevere.

After almost exactly a month in the hospital, we were free to move into our temporary place. After a month of being in an enormous room with people peeking in the door out of curiosity, people walking through the door to work, and the lights and beeps, we were released, and though where we moved was not literally quiet, in my heart it felt like the quietness you feel in a snow fall when sound is muffled by snow flakes falling and collecting all around.

With Christmas just days away, and our newfound freedom, we bundled up and set out to see the Christmas lights.

Which is the same place we're heading later tonight. I'm also jumping out of my skin because after the appointment  in the morning, we're meeting with one of our most favorite nurses to catch up. It's been too long and we're delighted to finally try and meet up. Well....we tried before, but timing thus
far has been off. Fingers crossed, because we really miss her. And there's some synchronicity both in seeing the Christmas lights and seeing our nurse.

We'd see this nurse throughout the months of chemo, waiting in agonizing anticipation for a donor. In the middle of the night she'd come in to make the beeping stop, but she was never our nurse. We immediately liked her, and I'd wonder out loud when she'd actually be assigned to us. I later realized she only works with patients after transplant. So finally, after months of visits to the hospital, she would actually be the one to carry Dom through the night. And tomorrow again, after months of agony we will get to connect with her. Even though she was our nurse again during the very difficult time, I don't think about that. I associate her with being part of the other side, the other side of transplant, the other side of gvhd. We are being ushered beyond these milestones.

And the lights. Last year, we drove through feeling a deep kinship with Christmas and new life and the wonder of it all. Tonight, we'll have this whole year behind us. And though the whole year is behind us, it almost felt like a wrinkle in time, where the past 6 months of the horror of gvhd are in that fold, and we can meet again the feelings of hopefulness we had a year ago, the feelings of being in a cocoon in the hospital and in our apartment in Sacramento. While we always longed to be home, we also felt so safe being in the hospital or so near the hospital. And while I greeted that old feeling of security again, that I associate with that time in anticipation of driving through a twinkly wonderland, I also feel like we're truly being deposited on the other side. I finally have a sense of relief that this time, Dominic's new immune system is going to kick into gear and do what it is supposed to do. What better bookend to this year than sparkling lights and sparkling friends? Dominic is getting his sparkle back every day. Our ground zero now is a little more ground zero than last year, but we're more resilient, more tenacious, and more experienced. 2018 threw us a sharper curve ball than 2017. As I think about all these comforting things on Dominic's first birthday, I am convinced that 2019 will lob an easy home-run to us and we'll look back on his second birthday with even more joy and life to celebrate.

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.