The oxygen machine is off. I could let the thermostat get above 68 and turn off the ceiling fan. I can sleep with the lights off. My alarms for 10:30, 2:30 and 6:30 meds have all been turned off.

Preston made the very courageous and loving decision to move to the Transitions hospice house today. It became clear that his care needs were exceeding what we could comfortably provide at home, and he wanted our house to continue to feel like a safe space for both me and Conor.

The whole hospice experience has been strange, but mostly good. The people that we’ve worked with have been great – so thoughtful and empathetic and helpful. If you’ve never experienced it closely before, it’s worth knowing more about so maybe it won’t feel so scary for you if you ever have to deal with it.

Once you make the call, they come in and tell you that they’re taking your person off any “get better” medicine. It’s just a comfort game. It all goes through your insurance and they become your pharmacy and physician and mental health providers. They send a nurse out about once a week, and all sorts of other folks check on you. For us, the nurse practitioner was the one that did the “heavy” stuff – the “this is how long” and “this is what will happen” and “here’s what we’re going to do” stuff. She was a miracle worker. Got the drugs managed in a way that Preston really did have a solid 6 weeks of feeling pretty decent.

They also have a case manager who helps with stuff like getting supplies delivered. P’s been on oxygen a fair amount and also had walkers and tray tables and such.

But mostly, the care is up to the family. So, things like getting to the bathroom, changing clothes, getting clean, that’s on us. And I feel like I should have an honorary pharmacy degree trying to keep up with the dozens and dozens of pills. Dillaudid and Ativan and Dexamethasone all look remarkably similar. I got really excited last week when they brand of Dex they sent was green instead of tiny white pills. (It’s the little things.)

Friday, a nursing assistant came to help get P a shower, and that was our first big clue that we were turning a corner. His left arm was difficult to move, and it was hard to stand up – even for a few moments.

At first, I was vehemently against moving him to the hospice house. Like, maybe even a little angry about it. After all, “I CAN DO IT MYSELF” has been my personal motto since I was about 3 years old. Besides, our village is great. Jim and Erin help out a lot, dad is right down the road, Ray and Debora, Kevin and Brandy, Rebecca and Zach – and that barely scratches the surface! We could do this. And we would and it would be a privilege.

But P looked me in the eyes very sincerely and asked that I go along with him on this. And he was right – as he often is.

I find myself absolutely devastated that he is not here, and won’t be again. It’s heavy and hard. Every object makes me sad. I hate this giant bed. Picking out the right t-shirts to send with your beloved for his final weeks on earth is a certain kind of hell I wouldn’t wish on my worst enemy. Do I go with band shirts? Sentimental? Old favorites? Ones we don’t want to get messed up? (I went with a nice mix and I’m currently draped in his Comeback Kid hoodie.)

And yet, it’s a great relief knowing that someone else is making sure the pain meds are taken and meals are made. That he can maintain his dignity and get help from professionals to use the bathroom. That they’re 100% equipped to make sure that he is comfortable. He had an hour and a half long massage tonight from a massage therapist who volunteers once a week. He has a button to push for any needs and a pump for constant pain meds.

And I just couldn’t give him that here.

And he couldn’t give me the gift of just being able to hold his hand. To – for the first time in a long time – worry less about his physical being and more about just being.

I can take a trazadone tonight, get a good night’s rest with no medicine alarms going off, and tomorrow I can sit with him and we can talk or watch something or just be. And Conor can visit after school and tell him about his day and go visit the sheep in the pasture next door. And come home to a house that is quiet and warm and filled with wonderful memories. And a few of the really hard ones can stay down the road.

My husband is very kind and very brave. This is all so impossibly difficult. Somehow, he manages to keep doing the next right thing, and so will we.

Thanks to all of you for holding us so close these last few weeks. We feel your love and it means so much.

I’ve decided to invent a new kind of afterlife. I just don’t like the options we have presently.

Some place in the clouds with harps and robes and Christians definitely ain’t where it’s at. (no offense to the lovely Christians in my life, but I dig a little variety.) I mean, what do you even do all day? Harp is a really hard instrument to learn.

I used to sort of like the “What Dreams May Come” version – where you end up in some place that makes you happy and you can become whoever you want to be. It has potential.

And The Good Place is my all time favorite TV show and it definitely has its appeal. Jeremy Bearimy timelines, you go when you’re ready, plenty to do and lots to learn, Janet… generally pretty solid.

Reincarnation isn’t for me. Mostly because the idea of sentient beings being accidentally squashed or eaten or chopped down is just too stressful.

Generally, ghosts seem like a viable option, (side note: in my 4th grade spelling bee I misspelled the word “ghost” and it haunts me to this day and it’s my blog I can make a stupid joke if I want to.) But the problem with them is that they’re not always able to interact and are tied to a particular place or have to solve some mystery.

From a visual perspective, I don’t think you can come up with anything more stunning than what Disney pulled off for us in Coco. The colors! The celebrations! The neon glowing Alebrijes! Yes, please.

But a once a year visit? That’s just crap.

I mean, that’s the problem with all of these, and I can’t for the LIFE of me figure out why – if we get to make up all sorts of ways that explain what happens to us when we’re dead – that the all involve being separated from the people here on earth. This, to me, is stupid.

Humans have had great ideas of where we go! Stars (Ray and Evangeline anyone?), Valhalla, the underworld, planets, generic paradise, The Summerland – they’re all super creative. I mean, sometimes it gets a little dark and tortury, but generally speaking, we’ve had some pretty solid ideas.

But there’s no “I’ll always be with you” option, and this irritates me.

And so, I think there’s a real case to be made for a reinvention.

So maybe we take The Good Place but we add in some “Dia De Muertos” flavor where they can come down and visit. Or! This isn’t exactly the afterlife, but maybe we take the “Inside Out” concept where your people are in there helping you make decisions, bringing up good memories, providing guidance. Add in a ghost element here or there, with some physical haunting or the occasional “sign” that they’re with us.

But like, let’s build some framework around it, right? Because I don’t like the idea that I’ll have to stick around here another 30, 40 years before I get to hang out with Preston after he “passes on” so who’s to say I can’t just decide that “passing on” is for suckers and he’s actually just following me around? Maybe not watching *eveything, but just generally hanging out. Ghosty, but not stuck in a place.

I know, I still have some things to work out. I mean, who decides who gets to hang around? And like, what if they get bored? Can they hop around and visit other people, or are they just stuck with you? Can they interact with other people, and does it get crowded? Does the living person have to grant consent to be followed around or are they all just being invaded by rando dead folk? Is it a privilege? Punishment?

Look, there are a lot of pieces that I still need to figure out, but what I’m saying is that I really don’t like the idea that – whenever the time comes – Preston will be in one place and I will be in another, so I’ve decided that he’s staying here somehow and I’ll work out the details later.

Er, rather, “Transitions.”

It’s fine. I think. Everyone is nice. The first week was wild – someone coming and going all the time. Nurses, supplies drop off, social workers, medicine… it was just a lot.

Now there is something of a rhythm. Pain meds are managed and P feels pretty OK as long as he’s lounging in bed. Thankfully, it isn’t making him sleep too much, and we’re able to spend a lot of time together. We’ve watched a lot of Adam Sandler movies, old 90s classics, and Brooklyn 99.

Conor had a great Spring break with his cousins (what a blessing it is that he’s so comfortable with them!) and now that he’s back, we’ve found some evening routines that work. On nights he doesn’t have baseball, we heat up some of the yummy food either family or doordash have provided, and we pop something fun on TV and eat upstairs in our room. While C is at school, I’ve been working on a lap desk next to P while he watches TV. He’s keeping up with work and even taking meetings.

Somehow it’s hectic and very chill all at the same time? I’m not sure I can explain it.

It feels like we could just go on like this forever.

But of course, that’s not how this works.

So there’s a lot of administration of it all – auto-pays and subscriptions to cancel. Tickets for a planned adventure to Boston to sell. Discussions about finances, and which car to keep and how to distribute tools. Memory-making crafts to assemble and pictures and videos to take. Presents to buy and advice to give. And, oh yeah, we need to find time to have fun and say all the things and let people say what they need to say, too.

Alright. That’s all I’ve got right now. Season 4 heist episode is on.

Anticipatory grief is an absolutely bizarre and insulting piece of the human emotional condition. At best, it is inconvenient. At worst, abso-fucking-lutely devastating. 

I’ve been floating around in this space for a solid 6 ½ years, though I didn’t have the words for it early on. I was just as irritated by it then as I am now. I lamented to my therapist at the time – “But he’s still here! Why am I walking around imagining what it will be like when he’s gone?”

I get mad just thinking about it. Why do our brains feel the need to have a grief trial run? “Oh, let’s make sure she’s already invested in the proper waterproof mascara so when the time comes, she’ll be set.”

And it certainly can’t be, “Well, if we practice enough, then we’ll just be really good at it and it won’t hurt nearly so much down the line! We’ll be ready! Quick, she’s daydreaming about the next vacation – let’s remind her it’s not a given and that it can be gone at any moment! Queue the waterworks!”

Conor and I went to the River for about 24 hours last weekend, with the plan that Preston would join us for a couple of days. That didn’t work out, but those few moments at the River were incredibly difficult. I found myself sobbing and desperately digging through my purse to find more than the single emergency xanax I keep in the small zippered pocket of my wallet. (don’t worry – I now carry at least 3 at all times.)

It felt like watching a movie where someone keeps flashing forward. “Oh here’s the fishing rod he won’t use again, and the fancy filet knife that won’t be need and the granola bars that won’t expire until after he’s gone…” 

I hate the feeling of crying. It isn’t cathartic for me. I don’t like the way my breathing hitches and my face gets splotchy and my nose runs. And when I can’t turn it off, it just makes me angry and makes me cry even more. (side note: yes, I am aware that these are things I should probably work out with my therapist, but we’ve had more pressing matters of late) 

So I really don’t see why we can’t just save the grief for the sad bits. If grief is supposed to be helpful – to help us work through the trauma of losing a love one – let’s just let it serve its stated purpose, instead of trying to come on stage entirely too early. It’s rude.

If you were wondering how I was holding up the answer is, “Not that great!” but I’m getting a lot of solid sad practice in, so I’ll be an expert soon enough.

This is one of those posts I’ve been composing in my head for the better part of 6 ½ years, always sort of thinking I’d never really have to. But, here we are.

Let’s not beat around the bush. Preston’s cancer is no longer responding to treatment, and so we’ve made the difficult (but correct) decision to move to hospice care. The cancer has invaded nearly every part of his spine and he is very uncomfortable. He’s managing the pain with medication, and is still very alert and Conor and I are enjoying as much time with him as possible.

Hospice means a lot of things, but the best way I’ve had it articulated was in a conversation with the leader of Conor’s support group. She said, “This means our hope is changing, and our goals are shifting. We’re not focused on getting him better. Now our goal is to make sure he’s as comfortable as possible and able to enjoy whatever amount of time we have left.”

You’ve got questions probably. Here’s what we know:

1. He’s at home for now. As long as his pain is managed with pills, he can be home. The point at which IV medication is required, he’ll go to the Transitions Hospice house in Raleigh.
2. Conor is doing OK. He is fully read in. It was the most difficult conversation I have ever had. When we told him the scans had not gone well he said, “We’ll make the most of what time we have left.” It breaks my heart that he really doesn’t know life before Preston’s cancer. And yet I’m very grateful that he has built the skills to articulate his feelings, talk to therapists, ask for what he needs, and appreciate time when we’ve got it. What a remarkable kid.
3. I’m also OK. I’m leaning heavily on Preston’s parents and the Mann clan. We’re still very much in an administrative piece of this – getting nurses and social workers in, trying to get the right equipment, making sure the we have enough meds. When it slows down, I suspect my needs will look different. Work is a respite because it is a place to put my overly-active brain. My board and colleagues are incredibly supportive. I listen to a lot of predictable romance novels. Luna and I go on long walks. Preston and I are watching movies and TV we’ve seen before. I’m trying to remember to eat.
4. We don’t have any idea about how long.
5. No, we’re not asking for additional opinions or seeking alternative/additional treatments. Please don’t suggest them.
6. We’re not ready for visitors, and may not be. Thanks for understanding.

We’ve had a lot of requests about how to help. Thank you. Here’s the bit – it’s all pretty overwhelming right now. And I don’t even really know what we need. But, here are some thoughts:

• We’d love to capture your well-wishes, memories, reflections. But *PLEASE* don’t send them to our regular emails or phones. We need to engage with the content when we’re in the right headspace for it. The very best email is pscwillcox (at) gmail (dot) com. If you have a fun Preston story, please send it there. If you have pictures or videos, please send them there. If you want to send a resource, idea, or good wish, please use that email. If you have a specific note for one of us, feel free to put our name in the subject line.
• Please don’t send anything to our house. We do not need gifts or flowers. Cards are OK. But they better not be too sappy.
• If you’d like to contribute to our “Joy Fund” a friend set up for us, you’re welcome to do that. We’re using this to provide additional opportunities for fun, particularly for Conor. Games, movie rentals, craft kits, other experiences. No pressure – this is not a fundraising ask. We’re OK. But here’s the link: https://braid.co/p/v3f9x0mo
• Door Dash/Uber Eats/ Grub hub e-gift cards are all good, too.
• We’re not doing a meal train. It’s too much to coordinate. We’ve got several folks who are making sure we’re fully nourished.

I’ll try to keep this space updated. I promise to ask if we need anything.

It sucks mightily. We’re scared and anxious. We’re trying to balance “SAVOR EVERY MOMENT” with “DO THE THINGS” with “THIS MAKES ME FEEL SLIGHTLY BETTER” and it’s different every second of every day.

OK, that’s all that I have the energy for right now. More soon.

With love,

Sarah

My family gave me a pretty remarkable gift this weekend. In a scheme I cooked up with my coach and with skills built by my therapist, I’ve been at the River doing mostly nothing for 2 whole days.

Not only that, my family didn’t just work together to meet my needs, with food and snacks and books and bubble bath. They also met the needs of my son, husband and dog. (Lucy, the cat, pretty much does her own thing anyways.)

My inlaws and aunt cleaned my house of the insane amount of construction debris from my house. Kevin kept Conor at their house all weekend so he could play video games and soccer with Landon and Ollie. Brandy picked out books for me to read (very spicy indeed) and picked up my favorite snacks. Erin and Jim made sure Preston had company and food. My dad picked up Conor from school and is taking him to basketball practice. My aunt Chris and uncle John sent some money for me to pick out any books or treats for the weekend. Ray and Debora kept Luna. Richard and Cathy brought me dinner from Spoon River and Richard helped me with the water turn on because there were spiders. My sister coordinated the whole damn thing and made me food and sent flowers.

I read 2 books and listened to one. I did a couple of relaxing and satisfying chores around the house here. I learned a new song on the guitar. I breathed and I wrote and I slept and I listened to rain on our new metal roof and I watched 4 chick flicks. I ate food that nourished my body and I ate junk food. I accidentally drank an entire bottle of sangria in about an hour and therefore took a nap at 7 pm.

I had nowhere to be and nothing that had to get done.

It’s no secret that this winter has been a difficult one for the Willcox family. Preston’s painful metastises in his spine and hip have limited his mobility. We were all very sick with the croup over the holidays, and poor Conor has endured food poinsoning (from his birthday dinner of all things) and strep throat since then.

We’ve found some bright spots, too. With the help of Preston’s new palliative care team, we made it to a Jason Isbell concert in Greensboro, that just the week before had felt like an impossibility. Conor’s birthday sleepover that had to be rescheduled was a lot of fun. Brendan and Lauren made it up for a visit that was rejuvenating for all of us.

But, y’all, it has still been a lot. Cancer is scary and hard, and watching Preston in pain – with very little I can do to help – is one of the most difficult things I have ever done. Palliative care has been a gift, but it’s still intense. The doctors are optimistic they can treat the mets in his spine, but until they can figure it out, we just have to keep moving, keep waiting, keep surviving, keep trying.

This weekend I didn’t have to “keep moving” or even make decisions. It has been the mental equivalent of turning the computer off and back on again. Nothing fundamental changed, but it works just a little bit better.

The last six and a half years have been challenging in ways I couldn’t have conceptulalized. For someone so fiercely independent and determined, not being able to FIX THE THINGS or SOLVE THE PROBLEM or DO IT MYSELF is hard. So I’m really, really proud that I asked, and made space for, these 48 quiet hours.

And I’m extremely grateful that Conor went with the flow, and Preston encouraged me, and my family caught me in this terrific net that felt like a big group hug. It’s enough to make my nose tingle and my eyes water a bit when I think too hard about it.

Friends, do you know that you, too, are worthy of this rest and comfort? And that you don’t need to wait until your brain feels like a bee hive and your body weak and heavy with exhaustion?

One of the books I am reading this weekend is called A Prayer for the Crown Shy. It is the second “Monk and Robot” book by Becky Chambers. A passage I read this morning while bundled in a fleece that used to be my mom’s with a warm cup of coffee while on the screen porch listening to the mockingbirds and North wind across the Pungo said this:

“That was all right, they reminded themself, even though part of them still felt as though they hadn’t earned the hot soak or the good food.

Welcome comfort, they reminded themself, rubbing the little pectin-printed bear with their thumb. Without it, you cannot stay strong.”

*dusts off blog*

*clears throat*

Well hello! Somehow it’s been more than a year since I updated this. And I’m not doing a Christmas letter. So here you go.

The other day, I had a conversation with some one I don’t see very often. I could tell by her, “Soooo… your husband….” quiet, gentle lead was pretty much asking, “Soooo… your husband…. is he still…. with us?” which was very awkward indeed.

Yes. He is still with us, and doing remarkably well for having more than 105 rounds of chemo, 7 surgeries, cyber knife treatment, 2 radiations and radial ablation on the way. (Is there a cancer treatment BINGO prize somewhere? I’m pretty sure Preston wins.) He’s literally had so much treatment that the UNC system chart didn’t have enough pages.

And, even more remarkably, the treatment is doing his job, and keeping the cancer mostly at bay. This year, though, he has experienced some spread to his bones, which is causing some significant discomfort. He has an appointment in 2 weeks at Duke to try ablation.

We don’t know exactly what’s to come – it’s incredibly rare for colon cancer to make it to bones (honestly, it’s because so few people make it this far) so we’re just sort of taking it as it comes. To say that he is a trooper would be a dramatic undersell.

A lot has happened this year – new jobs for both of us (I took over as ED at NCNG and Preston has a new role at the company that bought his old one) and Conor is in the 4th grade. We have a small army of mental health professionals and Conor had been very fortunate to get plugged in to KidsCan at Rex and Camp Kesem at Duke – both wonderful programs for kids with parents going through cancer treatments. My board is supportive, and so is Preston’s new boss. Family is relatively close still, and so we’re making it work pretty well.

Most of the people that read this know that my mom died back in July. It’s been difficult for many reasons, not the least of which is that I miss talking to her about all of this. She was relentlessly optimistic, and was pretty good at getting me out of my funk. I try to channel her when I start to feel whiny. (And then, my therapist chimes in with, “Sarah, it’s OK to acknowledge that all of this is hard.”) She died when we were on our big, amazing vacation to Mexico. Which was kind of poetic timing. She insisted that we stay, and we did, and it was the right call, but I just feel like everything has been a little off-kilter since then. Like I didn’t quite reckon with it right. But maybe grief is never right and that’s just the way it is when you lose a parent.

So that’s been a whole other layer. We have had some wonderful trips, and boating adventures, and made loads of memories. I have 13,000 pictures on my phone. It’s like there will never quite be enough. I’m constantly documenting, and I think about writing it all down here as a historical record, but something always stops me. I don’t know why.

As I mentioned in last year’s note, it’s strange to me to feel the need to update this all of the time – it’s not that interesting. Everyone is dealing with their own version of awful, and we’re carrying on. Sometimes it’s OK, sometimes it’s good, sometimes it really sucks. Sometimes I can remember how fortunate we are to have access to medical care, jobs, supportive families and wonderful friends, and other times I get really frustrated that no one *quite* knows what it’s like to be in the long-haul cancer game, just figuring it out and moving from one treatment to the next and trying to balance worry with looking forward to good times.

But really, the long-haul is a hell of a lot better than the alternative.

So yeah. Still here.

Five years ago feels like a blur. I went back through my pictures on Instagram just to try to remember. I didn’t post much as it turns out (which is pretty representative of the rosy-colored IG life most of us put on there.) They weren’t good days, of course. Trump had just been elected. We’d just had a devastating hurricane in NC (and a branch smashed my car), my beloved grandmother had died. And Preston had just been diagnosed with stage 4 colon cancer.

Looking back at all of that listed out, I guess it makes some sense that I don’t remember much about it.

But I do remember those first Googles. *

They weren’t pleasant.

“Stage IV colon cancer is difficult to treat. Stage IV cancers don’t have a good prognosis as their relative survival rate for 5 years is about 11%.”

Five years is a big marker in cancer-world. It’s the survival target most-often sited. If you’ve had “No Evidence of Disease” that long, they think of you as pretty much cured.

P wasn’t NED that long, but he is in that 11%. Let’s look at those 5 years by the numbers:

8 Surgeries, 4 with multiple-night hospital stays

80 rounds of chemotherapy – some oral, some infusion, some with a pump – all miserable

1 round of radiation

30ish scans (and the anxiety that comes with it!)

2 trips to Disney World

1 vacation to Yellowstone and Utah

Countless days at the River

1 boat

1 dog

1 house

18 months of weekday lunches when we were together during the pandemic

Lots of sushi dates

6 beach trips

5 mountain trips

Loads of long walks

Lots of time with friends and family

And thousands of little moments that mean a lot more when you’re dealing with all the rest.

Let me be clear – my experience is very different than Preston’s. What he’s been through physically is practically super-human. And he’s doing it for the benefit of me and Conor as much as anything. It’s grueling to watch. Watching your person suffer is agonizing. And yet, I have to hold in my heart that without all of that suffering, without the drugs and the surgeries and the misery, we don’t get to do the rest of it. So I have to be grateful and glad that he’s suffering.

(This is the kind of spiral that keeps me up late at night sometimes.)

In a similar kind of way, hitting this milestone feels strange. 89% of stage 4 patients don’t get this far! We’re so lucky! But does that mean that I was begging for the wrong thing? Is every day from here on out borrowed time? Has it always been? Will he have to suffer like this – once every 2-3 weeks – forever? 10 years? 20? Will something new come along? Have I remembered and catalogued and cherished the time enough? Have I taken enough pictures? Am I overthinking all of this? Should I probably go get a Xanax now? Because I’m not sure it was healthy to start writing all of these very internal thoughts out on paper?

OK look, I don’t mean to freak you out. But this, “We’re so fortunate! But this also sucks! But it could be worse! But it is really hard!” back and forth thing is fully exhausting.

I’ll abruptly change the subject now.

Preston got 2 tattoos to ring in the occasion – a big ‘ol panther with a rifle site in its mouth (it’s a punk thing having to do with Against Me! (a band). Their song “Teenage Anarchist” was one of Conor’s very favorites as a young tot. (Still is, really.)

The other is a number 5 on his forearm. He left room for 10, 15, 20, 25… and I want nothing more in this world than for him to run out of room on his arm.

* DO NOT GOOGLE MEDICAL STUFF. EVER. IF YOU LEARN ONE THING FROM ME, LET IT BE THIS.

Last night (you can see P’s 5 tattoo sneaking in by his watch)

So I’m kinda obsessed with TikTok. This is 100% the fault of Brandy Mann and I am eternally grateful.

The thing about Tiktok is that it’s this feed of algorithm-driven, 60-second videos. Many are stupid. Some are informative. Quite a few encourage me to buy things (shirts, makeup, skincare cream, new bras – that’s just for starters!) and some help me feel less strange in the world. (Y’all, there is an “Elder Emo Tattoo’d Makers of TikTok” group and we had a meetup on Zoom and it was GLORIOUS and I know you don’t know what that is, but just know that it was GLORIOUS.)

Anyways, this has nothing to do with anything other than, “Hello Beautiful Humans” is the tagline for my favorite Tiktok Creator who talks about vintage glassware and circus sideshow acts and I felt like you needed to know that.

We’ve made it through a year of all three of us working and schooling from home. It’s mostly nice. We’ve settled into a routine (which, like, after a year, you’d certainly hope that a routine would be established). Conor is doing exceptionally well in school under very difficult virtual conditions. Work has been busy for both me and Preston, but we’re managing. Having cousins and grandparents and aunts and uncles to play with makes this whole thing quite bearable indeed.

P and I – and pretty much everyone we interact with – are now fully vaccinated and Conor will go back to school in the fall. Summer, and its idle heat, looms, but we’ve joined a pool and have some plans for Conor to spend a couple of weeks with his grandparents. We’ve got a full week at our favorite mountain cabin in Deep Gap and we’re heading to the beach for at least a few days.

I’ve said this a whole lot – probably here somewhere, but I’m entirely too lazy to go back to old entries and see if I’m repeating myself – but time is super strange. I vacillate intensely from wishing it would just hurry the heck up (get to the next thing – the vaccine – summer break – vacation – school starting) and praying like hell that it will slow down (more time together – more patience – lunches on the back porch – kayak trips at the River – spring drives in the jeep -snuggles and movies on rainy days.) I feel guilty when I’m not “living in the moment” which, I assure you, is not helpful in trying to “live in the moment.”

I’m tired, as I imagine most of us are these days. Tired of watching police kill people. Tired of fighting with relatives that don’t care for masks or vaccines. Tired of feeling like half of us are living cautious, careful lives while others are out there as if the pandemic never existed in the first place. Tired of keeping up the pace of work under absolutely impossible circumstances. Tired of watching kids struggle and knowing that so many other kids have it so much worse. Tired of feeling both incredibly grateful to teachers and also SO TIRED of all of the homework and expectations. Tired of grilled cheese sandwiches made in a flurry before the next video call.

But the amazing thing about “tired” is that it doesn’t mean you can’t be a million other things on top of it. You can be exhausted, but also joyous when good scan results come back. (coincidentally, they did – P’s liver radiation worked well and the lung nodules didn’t grow much over the long break for radiation treatment to be completed. We are staying the course on the same every-3-week chemo treatment for now.) You can be tired and still make it out for a run. You can be tired and still have a wonderful playdate with your friend and her daughters. You can be tired and hike all the way up a mountain with your cousin’s family. Tired and read a book. (ok, not that one. Well, maybe some people can do that one, but I can’t.)

“Tired” doesn’t mean “bad.” And things aren’t bad. They’re mostly good. And sometimes really frustrating. And occasionally, very heavy. But mostly they are good and filled with lots of love.

So, for all of you tired warriors out there, keep on keeping on. Let’s breathe in this incredibly chaotic exhausting time and know that we’re getting close to something of a conclusion. But maybe write down one or two of those good things that happened even when our eye lids were heavy and our patience was thin.

Alternatively, if you need a distraction, you should download tiktok.

But maybe not if you’re tired – it ain’t great for sticking to bedtime. Ha. Balance, right?

You should probably read the update first.

When Preston was diagnosed 4+ years ago, Conor was only 3 1/2. He really didn’t understand what was going on. We read a couple of books, (there are no good books about dads with cancer. But “Goodbye Cancer Garden” is a very good one about a mom) and I talked to a couple of child-life specialists to have some tools in the toolkit.

At first, what he experienced was that he was getting to watch more cartoons than normal, spent more time with his grandparents, and sometimes his dad didn’t feel very well and couldn’t pick him up.

When they’re really little, the important points are:

• Dad didn’t do anything to cause this for himself, it’s just bad luck
• You can’t catch cancer from Dad
• We’ve got to be extra careful about things like washing hands… but
• We don’t want to get too carried away being afraid of germs, either
• Dad still loves you and wants to play with you very much and he will as much as he can when he feels better

We also never made false promises. Because that is just super-dangerous territory. He never asked outright if Preston was going to die – honestly, I don’t think he had made the connection between death and cancer because he’d never had a reason to.

OH and an important note that I’m SO GRATEFUL a nurse told me – 4-5 year olds get OBSESSED with death. It’s developmental. Doesn’t have a dern thing to do with cancer. Don’t panic. It’s a phase.

When the cancer came back in, was that 2018? (It’s sort of running together) Conor was a little more aware, but still not totally. Chemo is not as chaotic as surgery. We just settled into a routine. We celebrated when P finally felt well enough to join us for dinner on chemo weeks because it meant he started to feel better.

All along, I’ve had this ivy analogy going.

Cancer is sorta like the ivy in our (former) backyard. It’s pretty harmless on its own, but it can climb up and over a plant or tree and make that tree sick. And so, the medicine is trying to keep that Ivy from growing on the important parts in dad’s body, and the surgery is pulling it straight out. The chemo is like weed killer – it’s getting the ivy, but it might also make some of the plants around it sick for a while.

It has served us well. Tangible in way that cancer really isn’t.

As he’s aged, he has gotten very into science and understanding the “how” and “why.” But this analogy is still holding for us:

Surgery = pulling the ivy up by the root and pulling it off the tree. It’s a lot of work, and sometimes you can’t get every piece off the tree.

Radiation = pouring weedkiller straight on the root. You don’t have to pull it out, but the plant can’t grow anymore.

Chemo = spraying the whole backyard with ivy-killer. It mostly just gets the ivy, but some of the other plants might suffer in the meantime. But you’re also catching those few plants that are hidden underneath something else so they can’t start growing up a tree.

Since he’s older, we keep the analogy humming along, but we also tell him everything else. All the details he needs or wants. Sometimes he asks really good questions, and we don’t hide the truth from him. We try to make him feel like a part of the process all along so he doesn’t get surprised by anything. We warn him that things might get a little crazy for a while. But he knows that we’re a team and that Preston’s doctors are the best in the world and that we trust them to make good decisions.

It’s not always easy, but he’s been living through this with us for more than half his life. I don’t think he’s particularly angry about being dealt this hand because it’s the only one he knows. (which, hoo boy, that’s a difficult sentence to write out.)

I’ll end this with the advice I always give people when they ask. Kids are hella smart and wicked perceptive. Don’t try to sugar-coat anything and definitely don’t try to hide anything. Because they know what’s going on. Keep an eye out for anything that’s particularly troubling (obsessions with germs/health, unusual sadness or anger, other mental health cues) but remember that mostly it’s just kids experiencing and processing and some of it has nothing to do with a diagnosis. Some of it’s just 7-year-old hormones. (THAT IS TOTALLY A THING.)

Make them the center of attention when you can, but gently remind them that it can’t always be that way and that’s OK.

And for real, though – if you, or a friend of yours or whoever – ever wants to reach out to me to talk about this kind of stuff – especially when it’s new – please do. I felt really alone in the beginning because no one had really been through this that I knew.

It’s not a bother, I promise!

And finally – processing trauma is real and it is hard and we’re literally all going through it right now. While I say, “don’t freak out” about some phases, you know your kid the best and if you have even an inkling that they need some extra support, go get it. Cornucopia House in Durham is a terrific resource and other cancer centers have programs and access if you need it.

I’ll add other things if I think of them, but I’m like, super hungry. And I bought an ice cream cake. So we might have that for supper.