Tuesday, February 13, 2018

Numbers and Valentines

As I stood in the pantry that's really not my pantry last night, looking at the stores of food I've amassed, I felt a moment of embarrassment. I'm one of those socially awkward people that thinks about the weirdest things. Like, it looks like I've lived in this temporary house a long time....it doesn't look like I'm planning jail break in 2 weeks. I did bring all our food from home that would expire before March.  Some random flours and sugars Dom's experimenting with. My food is wedged in between the home's appliances and pots and pans in the pantry.  I feel awkward about these things because for instance, my neighbor saw me carrying in our dear friend's sleeping bag for when she stayed the night and teased me about where are we fitting all the stuff we're moving in to just a temporary house. Call me self conscious.

I love Dominic more than ice cream.


Anyway, when I looked at the pantry full of food, and let the embarrassment pass, I started counting (again). I count every day. How many days until we go home is number one. But then I count how many days we've actually been in Sacramento. 83 days. That's how many days since Dominic has been in his home. 77 days since transplant. They told us in the beginning we'd become fixated on the numbers of his CBC (complete blood count), but now I'm fixated on days too.

Staring at the food, I counted some other numbers. We've been in this apartment for 57 days. That means we've had 171 meals here. Well, actually, 169 1/2. It's not dinner time yet and my friend took me out for dinner one night. (Thanks friend!) Then I started trying to figure out how many meals I've eaten out since the diagnosis. Dominic's number is easy. Zero. He has eaten at a restaurant 0 times since June 15. It was just easier once he began chemo to isolate and eat neutropenic all the time. (Neutropenic describes both a patient's immunity and a very restrictive diet.) He also has not had a cappuccino since June. I believe the first thing we will do on March 8 is go out for a cappuccino.

I have eaten at a restaurant twice since June. Both times with the same friend. It's only fitting I should eat out with one of my foodiest friends. I've also had another friend bring me a giant delicious burrito, and that was nice. My Mom has brought me Chinese and pizza on my quick trips home. Our over night guest with the sleeping bag left some pizza here for me, and it may as well have been from a restaurant. ohmygoshitwassogood.
I have had the odd cup of coffee from Starbucks. I collect points from our ground coffee and redeem them for free cups of coffee. Don't hate my penny pinching ways!
So mostly all our meals that were not in a hospital have been at home. Two of Dom's meals were made by another friend with items fresh from his garden. See, I can't stop counting.

And it doesn't seem like a big deal at all until I scroll through social media and see how reliant people are on fast food to get through the day, or eating out to mark an event, or eating out because it's nice to, or eating out because they can, and I realize it really is kind of a big deal, this thing we're doing.

And honestly, I'm not chomping at the bit to eat out. I do look forward to it. I look forward to the day Dom and I can just decide we've had a long day and maybe someone else can cook and clean up. Not that I mind cooking or the clean up. Not that we went out much before. We really didn't. But to know that we can. That will be fun.

But for now, he continues to experiment with soups. (That's his thing right now. Next week, it could be something else.) We're grateful he even has an appetite. And we're grateful for every morsel of food.  And we're grateful to be on this journey together. I can't think of anything more romantic than standing by my man through thick and thin. I can't think of anything more romantic than this fight he has fought so hard, in part for me. This just might be the best Valentine's Day ever.
All these numbers, and there is no way to count the ways I love and am loved.

Monday, February 05, 2018

Walk with me

I've definitely lost blog steam. It's kind of a good thing. It means our journey is slowing down. It means the newness is old news and we press on hoping for continued good news.

As Dom and I take our walks through the neighborhood, I like to weave up and down the streets so we don't have to see the same things twice. We talk about whatever strikes our fancy in that moment. Sometimes politics, sometimes our plans for the future, sometimes whether or not we like a style of architecture or how we would improve a home. But every walk, every day, we count the number of days. We're on day 69, which means we've been in Sacramento 75 days, and will be here 31 more.





I saw this bloom on one of our walks, and it inspired me. It was the first sign of spring to come. It made me so hopeful of our new beginning.


As I share our journey, the cement footed creature is again making some journey back and forth across the floor above my head.

I feel like we're mostly in a wait and see game. I mostly just choose to see that he is healed and we'll be able to avoid the many potential struggles that lie ahead. He is doing really well. Surprisingly well. I was just chatting with him that recovery has gone better than I'd expected. I did buy him a decorative brass bell for Christmas, imagining he'd use it on his weak days. There weren't any.

His hair is coming in and I smile over and over at the daily changes. The eyebrows are very nearly back to their old selves. They did make the nurses laugh as they grew straight out for a week or two.

The white count dropped dangerously low a couple weeks or so ago. It's not out of the ordinary for that to happen. But Dr Carroll is always our calm in any storm. Occasionally, the nurses may express a bit of hand wringing in the numbers, and cause us a little alarm. One nurse loves to tell worst case scenario stories. Unless of course I jump to a worse case scenario, and then she tells me I'm over reacting. Her last story in response to our chagrin over the count dropping was of a transplant patient who had to go the infusion center twice a week for a year because he needed an infusion of blood and platelets. I'm sure we don't need to know that. But soon enough, the doctor makes his twice weekly visit, and all is calm.
It's called the 60 day slump. The count generally falls around 60 days naturally, and the steroids also make the white count drop. I guess we were getting a little prideful that his numbers were staying so strong, we were a little unprepared for the drop. But here we are, hopefully on the upward climb.

Time seems to be moving at a snail's pace, but the days go by fast. We look at the clock and wonder where the day went. They do go by especially fast when we spend our morning at the infusion center. Sometimes, I try to get a little crafty or roll out the yoga mat. But, generally, we both sit at our computers and work, or binge watch the latest offerings. I don't feel one bit of guilt about taking this time to watch whatever strikes my fancy.

The kids next door play in the little breezeway outside our front door throughout the day and we love to hear their little boy voices and imaginings. Mom's voice is always calm and Dad's voice is always animated. As much as I loathe the babies upstairs, I adore the ones next door. I honestly feel really grateful to get to have fresh little human beings so close.

We saw one of the kids who lives upstairs in passing the other day. He looks like he weighs all of 90 pounds and we scratch our heads at how he has such heavy feet.

We bought ear plugs, I moan a lot, and one day, this will all be a distant memory.

I splurged on a little African Violet at Trader Joe's a couple weeks ago. No plants inside, but I couldn't resist a little life right outside our front door.

Speaking of plants, we took a walk through our State Capital gardens. There's quite an array of trees and plants from all over. It's amazing to me that a tree from England grows very near a tropical tree from Florida. We admired the Capital building's architecture and read all the memorials we could find.
It feels like spring here now. I packed mostly cold weather clothing, because I thought surely we'd be here during winter, and it does get cold here. But it's been warm and looks to stay that way for a couple weeks at least. I hear the daffodils are blooming at home. They're my birthday flower, and I get a little possessive that they should bloom in March and not before. It will be so odd to return home soon and transition back to summer again. We can't wait.

With the white count so low, we've kept mostly to ourselves. Slowly, slowly we will be able to get out and explore.
Maybe, in our final days here, I'll have some more adventures to relate. Until then, Dom's blending up yet another soup concoction he's made, and I've got some binge watching to get back to.

Thinking with fondness of all our dear friends who walk with us.