An Update

In cancer-land, not having to give any updates is a magical luxury. In the early days, there is so much chaos. So much change. So much to support.

And then, if you’re lucky, you settle into a routine. Chemo. Scans. Rinse. Repeat.

You might even start to make plans that go outside the 3 month scan window!

And so you don’t really need to say much. You can pop in every so often with a “I stink at updating this!” (side note, I’ve started dozens of journals over the years. And if I ever make more than one entry it usually starts with, ‘Well, it’s been a while since I wrote…’, so really, this is very on par for me.)

Anyways. With that lead in, you must be super pumped about an update.

P’s last scan revealed a new lesion in his liver. We had hoped it could be something other than cancer, but alas, the cancer has a new spot in addition to the “numerous” ones from his lungs. His lungs have been stable for a long time (that means that they don’t grow more than 20% between scans), so the many dozens of rounds of chemo (are we up to 60? I’ve completely lost track) are mostly doing their jobs.

But this new spot means we’ve got to shift back into gear. More doctors appointments. More uncertainty. More scans.

Here’s what we know so far:

  • Since it’s cancer, and the chemo didn’t stop it, P will probably have some change in chemo cocktail. But we don’t know those details yet.
  • They’re going to tackle this one lesion in his liver since the lungs are just sorta hanging out. Dr. Boles called it “Whack-a-mole” and I haven’t decided how I feel about that analogy yet.
  • P had a consult today with Dr. Wang at UNC (I’ve said this before but WE ARE SO FORTUNATE to have access to some of the best doctors in the WHOLE WORLD in our back yard.) Dr. Wang is, in a word, a complete badass. He’s also super nice.
  • His specialty is Cyber Knife. Which was obviously named by a 7-year-old who watches too much Power Rangers. It’s not a knife at all – but rather a couple hundred super focused x-ray beams. They use gold seeds that they’ll inject in to P to mark the spot. Those beams will melt the cancer and make it so it can’t replicate. I mean it’s just all so damn cool.
  • P will go for a couple of setup appointments and then have the radiation treatment 3 times over the course of the week.

How do we feel about all this? I mean, we wish there wasn’t a spot to tackle. But since there is, we’re glad Cyber Knife is an option (100% the blue ranger invented this weapon but the red ranger named it) and I’m glad he doesn’t have to do a hospital stay. This radiation is incredibly precise, so it leaves it as an option should we have to pop another coin in the whack-a-mole machine down the line. (Maybe it’s more like Down a Clown?)

So we’re piling some more on a world that’s already got A LOT. Personally, I’m feeling a little scattered and my brain is very full. (this is my way of saying, “If I don’t text you back, it probably means I think I responded but didn’t and now it’s gone from my brain. Try again.”)

We are masters at compartmentalizing, and have a wonderful support structure. We don’t really need anything right now, and some of the things that would be really nice like walks or kid adventures or distractions are off the table because, you know, pandemic.

Having a big kid helps a lot – Conor even cooks for us sometimes and can 100% be distracted by screens when needed. (I’m going to do another post in a second about how we’re talking with Conor about all of this now that he’s older in case you ever find it useful.)

So, just maybe send up a prayer or good thought or whatever works for you and maybe start learning that thing you always wanted to learn because LET ME TELL YOU it comes in handy to have a billion hobbies when you need a distraction for your brain!*

Hugs to you, my wee darlings!

*I’ve joined the Online Academy of Irish Music because DAMMIT I will learn how to play the bouzouki and I will DOMINATE at any Irish sessions in the after times.

Well hello there.

Perhaps you’re here because I’m giving facebook the old boot. Perhaps you’ve been keeping an eye on this space and wondering, WTF is up with them? I shall indulge you with a little update.

How’s the cancer going?

I mean, meh? It’s still there. But the chemo is keeping it from growing. P’s on an every three week schedule, so there are more good days than bad. But, like, chemo is still the pits.

And quarantine?

Oh it stinks. The chemo means that P has no immune system. We’re lucky to have been in a “pod” with my aunt and uncle and cousin and his family this summer and we’re podded up with my parents, mother in law and sister now. So we’re not alone and we’re really fortunate that our families are willing to be extra careful so they can spend time with us. Conor’s in virtual school, and doing pretty well. Though I think we’re all a little tired of playing imagine dragons (not the music, the pretend game) and trying to manage second grade and full-time work, too. But we’re all there right? The, “damn this sucks, but we’re lucky as hell” stuff. I mean, I’ve talked about that a lot of times before.

Anniversary coming up, right?

Not wedding, cancer. 4 years. More than half of Conor’s life. (kinda wishing I hadn’t had that particular thought.) The fall stinks for this reason. So much of this season reminds me of when it all got started.

So no Facebook?

Well, I’m trying. I took a 3 week hiatus and felt really good about it. Not in a self-congratulatory, “I did it!” kind of way, but I genuinely felt better not feeling compelled to keep up with everything. I bailed on Twitter, too. Same reason. I don’t need to know every little detail in the world – it’s all just too hard. I pay attention to the sites that are reputable, and use all of my new time to make crafts and send them to people and to call voters. I highly recommend it. My main support group is on FB, so I might go back there someday if I need to check in with them. But even that is hard – the further we creep down this cancer road, the scarier the possibilities seem. And I just couldn’t watch my friends go through that.

Is that selfish? Probably. But y’all, you’ve got to watch out for your mental health. I’m all about being supportive for friends, but taking on the devastating healthcare burdens for 30 people, just wasn’t helping me get through this. That’s OK! (And by extension, if this is stressing you out, CLOSE THE WINDOW. I still love you.)

But you’re still on Instagram?

Yah. 2 reasons*: 1) I do Chatbooks, so it prints my instagram pics automatically and I can’t do without it. 2) Not as much crap, but still nice and bubbly. I’m at smannwillcox if you want to come hang there. I post pictures of crafts and my family and the dog. And sometimes the River. And occasionally Lucy.

Where do you stand on Tiktok?

It’s a magical land of happiness and I DON’T CARE THAT I AM TOO OLD.

How’s Conor holding up?

Kids are resilient as hell, y’all. He’s doing a great job at school, and is mostly patient with us. Mandarin immersion virtual school is REALLY HARD but we’re making it. It’s nice not to be so busy all the time with extra activities, though I do think he is missing his friends fiercely. Thankfully, cousins were wonderful playmates all summer long and the grandparents do a pretty good job right now.

What’s next for cancer treatment?

More of the same through the end of the year. Then scans and maybe a break. We live our life three months at a time.

Are you going to talk about the election?

Hell yes. Vote for Biden. Vote now by mail or vote early in person.

In conclusion.

Hang in there. This all sucks. Don’t let the craziness take over and just do the next right thing. *

*actually 3. Cardi B has some really terrific instagram content

*yes I did quote Frozen 2 and I am NOT ASHAMED

I swear I’m OK.

I am OK, y’all. I just wanted to acknowledge that there is a lot of grief for so many right now. And I’ve been there and it is jarring – it still is sometimes.

Just do what you can to help your friends and neighbors and community members and complete strangers, but also remember that it’s OK to grieve and be scared.

Also:

Wash your hands.

Wear a mask.

Remember that Black Lives Matter.

Do the work.

Dance when you can.

I remember this feeling.

It is dark and hard and scary. It feels like something is sitting on your chest. Like you might cry but there isn’t anything there. That somehow your body is stopping you. It knows.

It knows better than you do that something is wrong. Something is fundamentally and completely upside down.

That you’ve fallen down some twisted rabbit hole – not one with scary queens and stoned men in big hats and painted red roses – but one that is dark and unwieldy. One filled with things coming at you that you can’t control. That when you wake up in the morning some new shoe will have dropped.

Some new Awful will be there.

A diagnosis. A job loss. A medical bill. A scared kid. A sick partner.

That’s what the world feels like right now. But I’m not in the rabbit hole. Well, not the same rabbit hole.

I’m still here – figuring it out – though some lights have come on and it’s not nearly so overwhelming. But there’s this window into this other hole.

And it’s dark. And so scary. And I can watch and support and pray and hope that things get better.

And watch and pray and hope that it stays there. On the outside. Through the looking glass.

There’s just not enough room for more scary in here with me.

How do you balance that? How do I? How do I sit in my bubble and protect these two people I have fought for so very hard and still help the people in the window? It’s foggy and it’s hard to see and I have to go to it to see more and to try to understand and then it’s heavy again.

And I feel like I’m doing *something* but really it’s nothing much at all.

It’s scary there and here it is warmer and safer and there are no viruses here and no police.

I wondered about the white rabbit. I don’t remember Alice and her story very well at all. I was afraid of the movie so I never read the book. A casual google search led me to an article that said that there is a group of hateful people that have stolen the white rabbit and made it their own.

I always felt like the rabbit was the real bad guy in the story. To lead Alice down a dark and dangerous path and all of the rest of us with it.

If only it were as simple as waking up.

Cancer in a time of COVID

Hoo boy howdy. This rabbit hole we’ve fallen down sure is a doozy. Does anyone else feel like they’re walking around in some strange dream state? And that you’ll wake up at any moment?

That’s pretty much how we’ve been feeling for the last 3 1/2 years, so you’d think I’d be used to it by now. Alas, it’s not really something you get used to – when your whole concept of “reality” gets turned upside down, I don’t think you ever fully adapt.

Several folks have written to check in on us – there have been so many offers to help bring groceries or supplies, and we’re so grateful.

Here’s the update: We’re fine. Like, actually a little better than fine sometimes. We have enough food to eat. Our jobs are stable and remote-able. Conor has the devices he needs to engage with his teacher. We’re able to go to the River and get outside. We can safely distance with our families for visits in the front yard. We’re not even getting on each other’s nerves too much.

Y’all. Privilege. We’re dripping in it.

So on the one hand I’m totally aware that this is not stressful for us and yet somehow IT IS SO STRESSFUL. What is that about?

I guess, to be fair, the virus itself makes me anxious. Preston has a couple of hunks out of his lungs and is about to go on chemo that will effectively wipe out his immune system.

Oh yea, I forgot the cancer update: (1) Scans last week were OK – everything grew a little, but we expected that because he was off chemo from Dec 15- Feb 7. (2) Labs are GREAT and his liver function has improved. This is due (we’re pretty sure) to switching to a vegetarian diet. That will require a post of its own. (3) They are changing his chemo from “ol faithful” 5 FU to Irinotecan (or “I run to the can” as it is not-so-affectionately called). He won’t be on the pump which is a welcome shift, but this new drug will do a number on his immune system and he might lose his hair.

The doc assures us there are still tools in the toolbox – this is a good thing. As long as he’s tolerating the chemo OK, we’ll keep doing it. Hopefully, they’ll come up with some rocking new drugs to wipe it out in the next year or so. (you know, except that they have shut down the trials in a lot of places due to COVID – in writing this I’m starting to realize why I’m feeling stressed.)

I do want to share some of the things I’ve learned over the years in dealing with a crisis situation. Maybe it will help you with something you’re trying to work on in your house.

  1. The internet is not helping you feel better.
  2. Be aware of your privilege, but let yourself acknowledge the suck. (I feel this deeply – the conflict between “We are so lucky” and “GODDAMMIT” is something I’ve been sorting through since P was diagnosed and it’s even magnified in this time.)
  3. Glennon Doyle said this recently on Instagram and it was a good refresher for me – “TV time is peace time.” When P was first diagnosed, Conor watched a lot of cartoons. Turns out, he is fine. (PS have you read her new book, Untamed? I thought it was great.)
  4. You don’t have to be productive. But if it helps you, you should be. Lean in to the self care that works for you. For me, it is not bubble baths and pedicures. (IK) It’s feeling useful and making things. I sleep better on the nights I create something rather than get lost in the interwebs.
  5. Some days you’ll suck at doing the things you’re supposed to do. That’s OK. Feel the things!
  6. The internet is not helping you feel better. (I say this with love and as someone who has looked on every message board, twitter thread, and facebook group trying to understand what a progression of colon cancer looks like. IT DOES NOT HELP. The internet cannot provide the glimpse into the future that you seek.)

And here are some things the child-life specialists we’ve worked with over the last couple of years have suggested and I think they apply now more broadly:

  1. Kids absolutely 100% know what’s going on. It was true when C was 3 and Preston was diagnosed. Tell them the truth. Help them understand the science of it, or at least a good analogy. (But Why: A Podcast for Curious Kids had a good episode that helped Conor understand a bit better.)
  2. Watch out for a fear that they are “carriers” or could infect their loved ones. There is a lot of messaging coming out about how kids could be inadvertently sharing the disease.
  3. Help them understand that people getting COVID didn’t do anything wrong to get it. 99% of it is just bad luck.

There you go. You didn’t really need my advice, but if you’ll see my previous statement about what makes me feel productive and safe, it’s about creating and feeling helpful, so here we are. Thanks for letting me practice some self care today.

Hang in there loves.

Our new house!

Ok, I know my last entry was, well, a little emo.

A lot emo.

Sorry about that.

So! I present to you a much more uplifting post.

I LOVE our new house. Preston loves it. Conor loves it. The cats love it. The dog misses her fence and isn’t a huge fan of the little dogs all around the neighborhood but she’s totally getting there and WILL love it!

We have everything arranged just right. All of the boxes are unpacked. We’ve purchased an amazing new loft bed for Conor and a new dining table. Everything has its place. (OK, the garage needs some work, but we have a garage!)

I said all along that even though it was a really tough decision, we made it with loads of logic, and I’m really glad that we were able to look through the emotional pieces of selling the house toward the practical advantages. I give Preston all of the credit for that – while he was fantastic at acknowledging my feelings, he definitely helped me to keep my eyes on the prize.

A prize that includes newer stuff, more house and storage space, lower utility bills, neighbors who bring bundt cakes (we’ve received 2), the only kid in the neighborhood next door, no yard work or limbs to fall on the house, and a laundry room near the bedrooms.

We tell Conor all the time – “hard things are worth doing.” Moving was a hard thing. And I’m very glad we did it.

Empty house

The house is all packed up. We’ve been working on it for days. Weeks really. We paid the movers do bulk of it and yesterday the house was just a maze of boxes. Now it’s empty I’m sitting in it and I’m trying hard to hold it together. The house seems small now that it’s empty. Which in some ways makes it a little bit easier. It doesn’t really feel like our house right now.

But it’s not hard for me to imagine where the furniture was not that long ago. To imagine what it was like to play with Conor on the floor when he was a baby and watch him take his first steps in the living room. To stand with him in the window and watch Preston build his shop and then later the swing set. To watch Conor play in the backyard with Luna to watch the deer eat the ivy. Never enough ivy to actually make a dent, mind you, but they did all the same. It’s easy to recall what it was like when we decided to buy this house. How much room we had. How adult it felt. How familiar it was being, of course, that it’s in the neighborhood I grew up in and has roughly the same floor plan as my parents’ house. It’s not a perfect house. There have always been things about it that make me crazy. For instance, I never really understood why they gave it granite countertops but never did anything with the cabinets. (I loved the kitchen once we painted it.) I also never understood why in the world the laundry room was on the other side of the house and you had to go outside on to the screen porch and another set of doors to get to it. Laundry always got stuck in the living room because who wants to schlep it all the way to the back of the house when you can just sit there on the couch and fold laundry which then inevitably got sat on by the cats and then needed washing again.
I can see Conor’s room completely torn up and covered with toys. I can still see the spot in our bedroom where his pack and play was when he was little. It was at the foot of our bed. One night we came in and he had asparagus for dinner. Of course he was sleeping and wearing a diaper and when we came in I thought something horrible had happened – it smelled so terrible. An important lesson was never ever feed a baby asparagus.

There’s the spot on the floor that the cat’s destroyed, and marks on the wall where art used to hang but the command strips didn’t work quite as well as we’d hoped there’s a spot that Lucy always rubs her face up against and it’s brown and I wonder if I should clean it but I don’t think I’m going to.

I can see the boys laughing in the hall and throwing the ball back and forth and I can hear Conor playing on a swing set outside singing to himself. I can also hear the mosquitoes. (I feel like we have more than our fair share.) His heights are captured on the door jam in the kitchen.

It’s dark, but if it were morning I could look out and see all the plants I’ve gathered over the years from my parents and from friends in the Garden Club. Plants I purchased with expert advice from friends and somehow managed to keep alive. There’s a key buried under one of the rocks in the garden but I don’t remember which one so I guess it’s just going to stay there. I also can’t remember where all the bulbs are so I envision the new people living here will be kind of amazed when daffodils just randomly start popping up in the natural area with no particular reason because while I love to garden I’ve never been particularly good at it nor had a knack for where things belong. So somewhere around February, there are just going to be plants popping up all over. I hope they don’t think that they’re weeds. Of course there are plenty of those as well. I want to take the new owners aside and explain that green and golds – even though they look like weeds – are really lovely plants and they are native to the area so try to be gentle with those.

I want them to know that the irises are from Brenda down the street. And if they need more purple ones they can ask. She usually divides them up at the end of the summer. And that there’s a peony in there somewhere and they should be careful not to kill it and then in a couple of years they’ll get some lovely blooms. I wonder if they’ll notice the one hyacinth – there’s just one. Someone gave it to me as a gift and I planted it just to see if it would stay alive and it did.

Do you think they’ll feed my bluebirds? I had a whole family this year. 6 or so little babies that flitted around all over the backyard. I didn’t even know what they were at first. I thought they were some new flock that I’ve never noticed before and then when I looked it up turns out juvenile blue birds don’t look a thing like adult bluebirds except for a little bit of blue underneath their wings. I left the bluebird box. I can always get one from the credit union but felt like I did want my birds to feel like they had to move just because I did.

The thing is, I know it’s just a house. I know its walls and floors and paint and an aging electrical system. And I am firm in the understanding that we have made the right decision. Moving into a townhouse is going to really help us simplify our life. We will be able to spend more time together and have more money to do fun things we want to do and the laundry room will be next to the bedrooms. It all makes perfect sense. It’s an incredibly logical decision but I so very excited! Our new house is amazing and we are so lucky. (When we are settled, I will tell you more about it!!)

But tonight in this echoey house full of absolutely nothing but my memories, I’m feeling awfully sad. Life just doesn’t quite turn out like you thought it would. So, you make decisions the best you can that are the best for your family and that moment in that circumstance. And then maybe, when you’re finished cleaning the refrigerator, you turn on the Wicked soundtrack and you sing really loudly. Because the acoustics in an empty house with hardwood floors really can’t possibly be matched.

I guess there’s a little good at everything.

Time to move

I’ve been sort of putting off this post. Like, if I put it out in the universe that it will make it official or something. Even though it’s pretty much already official.

We’re selling our house. Our adorable little brick ranch house in the neighborhood that I love so much. On the lot that is full of deer and flowers from friends and, well, also a lot of weeds. I’m loathe to leave the swingset that Preston built for Conor’s second birthday and the shop that we watched him build from the bay window in the living room. And, oh, my beautiful screened porch which is just the way wanted it.

But, we’re moving on for so many great reasons. And I can thank our house for many happy memories.

We’re moving to a townhouse just down the street. In the same school district in fact. It will give us some things our current house can’t do – more square footage, laundry near the bedrooms (WHY does this make me SO HAPPY??) a two-car garage, no lawn to mow, no weeds to kill, no exterior maintenance. We’ll be simplifying our life in a lot of ways which will enable us to spend more time together and are so excited about that possibility.

Also, since I have something of a habit of being honest and open with you, dear reader, the idea of selling our house in the event something happens to Preston – well that was just too heartbreaking to consider. And I don’t think I would be comfortable at our house alone. It’s pretty darn dark. I have an active imagination.

So, we’re going to make memories in a new house – one that works for us now and long in to the future.

Oh! I nearly forgot! It has lighted, glass front cabinets in the kitchen for my Jade-ite collection and did I mention the laundry near the bedrooms? (and not outside in a separate room that you have to go onto the porch in 22 degree weather to get to??)

When it’s time to move, I’ll be calling in the troops. I will definitely need your help. We’re also planning a yard sale on Sept 22nd, so come by and say “hi.” And if you want to buy our house, give me a buzz!

Blink, and you’ll miss it

Summer, that is. It’s nearly August! How is that possible? In June, it felt like we might languish forever in summer camps and travel and humidity and yet somehow we’re here – screeching to a halt and a return to chemo.

We’ve had a rather extraordinary summer (and still some adventures to come) made possible by a whole slew of people. Preston had a good 5 weeks of a break from chemo – something we all needed desperately. It was good to get out of our every-two-week routine, our offices, and even our state for a while.

We kicked off Summer with some lovely River trips, made slightly more exciting by Conor’s first trip to the urgent care for stitches. He’s no worse for the wear and now sports a scar over his eye that is a pretty close match to Preston’s. We fished and crabbed and rested and read and played and laughed. Preston got some new tattoos. We snuggled with my new niece. It was divine.

Conor then got to spend a week with my parents at the River – complicated somewhat by his injury. They rolled with it, and one cool, sun-protecting eye patch later, he had some fantastic adventures including a boat trip to Oriental, NC. I’m glad we decided to stay the course and let him stay – he had a great time and so did we! We did a down and back to Chef and the Farmer in Kinston for Preston’s Birthday – quite the treat.

Last week, we were on an even more grand adventure – Salt Lake City, West Yellowstone, Montana, and Jackson, Wyoming. We went hiking, saw wild flowers, played at a ski resort and went to a zoo in Salt Lake and somehow managed to see all of the top attractions in Yellowstone and the Tetons. We even threw in a moose sighting (actually two) and caught a fleeting glimpse of a bear. It was wonderful to be with Jim, Rosa and Erin and get some needed time together.

Also, and this is important, they really aren’t kidding about the humidity out there. When you step into the shade, it’s like someone turned on the AC. It’s maybe 20 degrees cooler. You can feel it on your hand when you put it into a shadow. These are things us southerners can’t even fathom – I mean, the shade helps, but it’s nearly as hot – you’re just melting instead of burning.

Yellowstone was incredible. Have you been there? It’s like Earth’s circus show. Bubbling mud! Geysers! Strange rock formations! Humans being really stupid around wildlife! Giant lakes! Neon colored pools of hot, acidic water! (Ok, my analogy is weak – that’s a pretty freaky circus – but I’m going to stick with it.)

Author’s Note: (Things start to get a bit rambly after this, so if you were here for the update, best to head out here. Haha)

You’re still here!

Also, I was struck by just how self-centered people can be sometimes. And while our life is full of selfless and helpful people, we sure saw a lot of folks on vacation who were pretty darned wrapped up in their world – or at least that’s how they came off to me. They would cut in front of Conor to take a picture. They sat precariously on walls for the perfect selfie. They – and I’m not kidding here – took their kids up a hill to get about 15 feet away from an entire herd of bison. You know, those tame, docile animals who are not totally famous for stampeeding.

There was also SO MUCH LITTER. Everywhere. In geysers, on trails, in the lake – everywhere. Because (and this became something of an unofficial trip motto) – people are the worst.

It’s an existential crisis I’ve been having of late. We’ve been digging in to racial equity at work, so some of it comes from that, and some of it comes from reading I’ve been doing about native communities. Out West, that struck me deeply – lots of celebration around pioneers, and preserving the land, and “saving the bison,” and cowboys and I just wanted to scream into a gorge. (I’m not sure what I would have screamed, exactly – less likely to be something poetic than just a guttural UGGGGGG)

Plus, PLUS! all the stuff at the border and in politics in general. So much of the rhetoric is like jumping in front of Conor to take a picture or getting as close as possible to the Elk because someone thinks it’s cool – not because the Elk invited them (and then getting mad when it lunges), or leaving litter on the ground just because it’s a tiny bit easier than cleaning up your mess… it never stops with humans.

Are we broken? Why does it seem so hard for humans (writ large) to be better? To be more kind. To think beyond our generation or even next week. Politicians on both sides of the aisle fight for what can be accomplished during their term – 4, maybe 8 years down the road – but give very little thought to what we’re leaving to our children’s children’s children.

Admittedly, I live in a pretty small, privileged bubble. But something about having to look at the person I love most in the world suffer on the regular helps me to see the forest for the trees. To dwell in the things that “matter” much more than I did when “till death do us part” felt a hell of a lot further down the road.

And I still can’t get it right! I use WAY too many single-use plastic products because it’s a tiny bit easier. I don’t volunteer the way I should. I laugh at things I really shouldn’t, and I don’t speak up when people post things that aren’t true.

This is droning on now, isn’t it? It was all very poignant and thoughtful and tied up with a neat little bow in my brain when I sat down to write but now it just feels, I don’t know, kind of dark.

Of course there are lovely humans! So many! When I’m around all of my lovely friends and family, it gives me such hope!

So, in conclusion, it’s only strangers that are the worst. (Wait, that’s not right either…)

In conclusion, we can all be better. And Summer is great unless it sends you careening into a “WHY DO WE EVEN EXIST” kind of crisis and I swear I’m good y’all, so don’t worry.

All the feels.

Today is our 9th Anniversary. Some days, it feels like just yesterday that we were gathered with our dearest friends and family on the stillest and hottest day ever seen upon the high and pleasant banks of the Pungo River. (They were, on that occasion, high, and also joyful, but not particularly pleasant.)*

I carried a bouquet of buttons and walked down the aisle to a sweet tune called “A Short Trip Home,” written by Edgar Meyer and played by my sister and uncle. We listened to readings by a beloved teacher and cousin and a dear friend. The minister said a few words and I remember thinking, “This is great!” but I don’t remember any of it.

It’s strange how memory works on those important days. I’m never completely sure which visions in my head are actual memories and which are from photographs I’ve pulled out many times in the last nine years.

I do remember:

We took a picture on the end of the pier and it looks graceful when captured by my talented friend Jess, but in reality, I thought I would surely fall and crack my head on the newly-installed concrete dock.

We ate barbeque and cupcakes (made with love by my mom and aunts) that day, but I remember more vividly eating them on the way to Savannah for our honeymoon on a picnic table somewhere in South Carolina.

I ate banana pudding during the toasts and people thought I was pregnant, but really I just like banana pudding more than beer.

I remember that we danced while no one was watching under a tiny crescent moon to a cheesy Michael Buble song – a song that was surely not on the list we gave the DJ. (I’m pretty sure he ignored that – along with the “do not play” list all night long.)

I remember that our family rewrote the lyrics to “Say a Little Prayer for You” and sang them with love in their hearts. Our sisters also gave brilliant, and uncharacteristically public, toasts, though I couldn’t tell you a bit of what was said.

My dad had paper lanterns installed beneath the tent – they were so lovely when the sun finally set and the air began to cool (only very slightly.)

It’s funny to remember the feelings more than you remember what happened or what was said. Isn’t that an interesting metaphor for marriage? That the words and even the acts are secondary to the feelings, that in the end, it is perhaps not how your marriage was and more about how it felt.

Since that day, I feel like we’ve got the hang of this marriage thing. And, under no authority beyond the fact that I am the author of this blog, I will share with you my thoughts on why it feels that way. Some of those characteristics have been there all along, some we’ve learned over time, and others we had to learn in the 3 years since “cancer” became such a big part of our lives.

  • We talk. A lot. About all sorts of things. Sometimes many times. We tell the same stories over and over. We rehash the same disagreements years later. We analyze our own behavior and that which we observe in others. We reminisce together and we talk about how we feel. And, as a result of this incessant jibber jabber, there isn’t much we aren’t comfortable discussing. When things get icky, (and I mean that in all sorts of ways) it’s easy to talk to one another because we’ve practiced. A lot.
  • Don’t get it twisted – while our marriage is stronger since Preston was diagnosed 3 years ago, it sure as shit wouldn’t be if it hadn’t been pretty damn stable to begin with. Same goes with parenting.
  • Hindsight being what it is, I don’t know that there is much I would change about our general approach to marriage since P’s diagnosis, but I would have documented things better – more videos, more pictures. We’ve never really fought and we’re pretty good at letting the “little things” not get under our skin, but I think I would have spent more time reflecting on my uncle Andy’s favorite advice… “Does it need to be said? Does it need to be said by me? Does it need to be said to me right now?”
  • Speaking of advice, some of the best we ever received was from Aunt Debora and Uncle Ray… “You can be right, or you can be happy.” This, dear readers, is true.
  • We ask each other for help. And we’re nice about it.** We also try really hard to share the load around the house. But it doesn’t just happen. We have to talk about it. (see point one.)
  • We also serve each other. And that’s sort of a loaded word, with some strange religious things happening in my brain, and the feminist in me is like, “UM NO,” but the rest of me is like, “but that’s how it has to work.” But, service, in and of itself, is an act of humility. Sometimes it’s getting supper on the table, and sometimes it’s making the more complicated bread every week so your wife has her very favorite breakfast. Sometimes it’s picking up the “parent” baton (when it’s been thrown at you by a hysterical wife) and sometimes it’s in “oohs” and “aahhs” on a technical project you really don’t understand. Sometimes it’s supporting your person’s hobbies and “alone time” with more fervor than you protect your own. Sometimes it’s having more patience with one another, all in service to your love for one another.

But look, if I could sum it all up after 12 and a half years together, nine years of marriage, and 3 years of a very serious test for both of us I would say, don’t sweat the small stuff and talk about the big stuff a lot. Seriously. When shit hits the fan I am 100% sure you won’t be worried about that one time they did that one thing that made you mad but you are going to need a very solid foundation of understanding what each of you needs in a time of crisis. Figuring that out in real time is possible, but it’s hard. (I’m going to give some more thought to what those conversations should be, but for starters, if you don’t have a will and/or a living will and healthcare directive, you should do it now.)

What I remember about my person when we’re literally fighting to keep him around as long as possible, is that he makes me feel loved in cherished in a way that I don’t think I understood was possible. That he can make me and our little boy laugh until we can barely breathe, and that he would do anything to help a friend. I remember how much calmer I feel when he’s around and how it seems that we can get through just about anything as long as we’re together.

Well, and as long as we talk about it. A lot.

PS: You probably aren’t here to get my rambly thoughts on marriage, but perhaps an update on the cancer stuff. So here’s the latest:

  • P is back on the pump every 2 weeks. We still hate that thing, but he has many more good days than bad. Our “normal” is pretty crappy every other week, but it’s rather lovely in the in between times.
  • We have a big summer planned – loads of vacation and time together, C is in like 12 different camps, and P will get a nice long break from chemo to heal up from the Xeloda earlier in January. I think he has also planned some more tattoos.
  • P is back to working in his shop since he and Brendan wired it a couple of weeks ago. He’s got all sorts of plans for projects and it’s wonderful to see that he is able to use his hands again. Creating is empowering.
  • Conor is about to wrap up his Kindergarten year. He’s reading up a storm in both English and Mandarin and it blows me away. He’s a sweet and thoughtful kiddo (who does sometimes channel his future teenage self… oooh we might be in for it in a few years) and 95% of the time he is delightful company.
  • I’m still tapping and hip hopping and crocheting and working at a job I love, and it’s pretty good most of the time.

See? Times are still shitty, but I think if we zoom out 9 years from now and look back at the feelings we were having during this time, I think we’d probably remember the good feelings more than the bad.

*I would like to acknowledge for those friends and family who sweated it out with us those years ago, that today it is 80 degrees with a light breeze.

** Dear newly married ladies – if you are waiting for him to “want” to do the dishes, you’ll be waiting a long time. Do you “want” to do the dishes? Hell no. Just ask. Slamming the pots will just give you dinged pots.