It’s been a rough week in the Willcox house. Last week, I had my big conference at work. It was a rough one. My boss had a family emergency, so she couldn’t be there. And while I was very well supported by my colleagues, board, and friends who came to help (thanks, Joye and Tori and Mike!) it was a rough week. As with any conference, a LOT of things went sideways.

And I had to speak! It was just announcements, nothing crazy, but something you may find surprising is that I don’t love speaking in public. When I was at governor’s school in ’99 I had to give a speech – just a student government thing. Some friends help me craft very well-written remarks and I completely, 100% blew it. I mean, you couldn’t even consider it the same speech. And ever since, I’ve been pretty scared of speaking.

Not facilitating – that’s completely different. I adore helping people talk to one another. And I don’t even mind our Grantmaking 101 curriculum – teaching feels different than speaking with a lectern and a mic and everything.

Anyways, I digress. I had to speak. And run logistics and hug lots of people and as it turns out, those are two very different parts of the brain.

As soon as I got home, I got sick from one of those people I hugged, and Conor was right behind me with a fever. We took a day off. We watched a lot of Transformers.

Then yesterday, we dropped Conor off at school and headed to Rex to see Dr. Moore. The pill chemo just wasn’t sustainable. Preston’s hands and feet were so beat up. They were red and covered in blisters. It’s a usual side effect, but no one had seen it quite so bad before. It wasn’t anything a slightly smaller dose would fix.

So, he made the rather extraordinary and courageous decision to go back on the pump – which, as you know by now, he hates.

Every two weeks, for the foreseeable future, he’ll be home with a pump full of poison. Do you know how very brave he is?

Y’all, sometimes this is so hard.

Which is what brings me to my actual topic for the evening. Silliness.

Are you silly? Do you find time to pretend to be someone you’re not, or laugh like crazy, or dance? And I don’t necessarily mean the silly that comes from playing with your kids – let’s face it – sometimes that’s pretty forced.

Kids are so good at silly. They make up dances and say “fart” and “butt” and it is the funniest thing in the whole world (though I would a well placed, “that’s what she said” can often have the same effect on grown-ups) and they move with reckless abandon.

Adults stink at silly. But y’all! I’ve found a miraculous place to be silly. It’s a guided silly – like a guided meditation. But better.

You know I tap dance – I talk about it all the time. It forces me to use my brain in a completely different way and is therapy.

But I also take hip hop once a week with Ronnie at NCDI and it is so silly. Ronnie is a talented teacher and gifted dancer. Somehow he helps me feel like my body can do some of the things he can do (it can’t) and have a damn fine time trying (I do.)

Tonight in our class, we laughed so hard it hurt. For an hour. We skipped in a circle and did this funny lift thing. And the song was ridiculous and we just laughed. And moved. And jumped. And pretended to be cooler than Beyonce (we’re not).

Magic. It was magic. Dance is magic. Good teachers who force you out of your comfort zone and let you get out your silly are the best kind of self care.

Are you finding time to be silly? It really does help. Therapy is great, but if you can laugh – even when you’re having the kind of week we’ve been having – it helps a lot.

So thanks, Ronnie, for the distraction.

I ran into someone in the grocery store today (Hi, Cheryl!) who reminded me that there are quite a few folks in our corner who get their information primarily through the blog. And, since I hadn’t updated in a while…

Well, we’re still here. The thing is, life just isn’t all that interesting. (Ok, we did get a dog – I’ll talk about her in a minute) but the cancer stuff, just isn’t that exciting. We live most of our days somewhere between, “awesome” and “completely shitty.” But, that’s most of us, right? Everyone’s walking around with their stuff on any given day. Ours just seems a little scarier on the surface because “cancer” comes with a lot of personal history, and what we know from TV, and it’s just icky.

Preston had his 29th (we think) round of chemo this morning. He’s still on Avastin (y’all, have I ever told you that it is $25,000 a dose?! Hooray for insurance! I did the math – it’s a 15 minute infusion, that means it cost $28 PER SECOND of the dose. But, I digress.)

He’s also on Xeloda. It’s a pill form of chemo that he takes for 14 days straight then gets a week off. It isn’t great. It cause a lot of problems in his hands and feet. As you know, he’s a trooper. He bounces back quickly. He took out 12 trees from our backyard on Sunday. (who does that?)

Scans in March. Until then, we just continue to exist in this messy middle. (Again, don’t we all??)

Conor’s doing exceptionally well in school. He adores kindergarten, Mandarin immersion, his school, his new friends, walking home with Grandaddy and doing homework with Granna. We really just can’t ask for more on that front. The transition has been lovely and he is thriving. It’s a little weird when he answers our questions in Chinese and we have NO IDEA what he’s saying, but we’re adjusting. And it’s cool.

We got a dog, which is completely insane. Her name is Luna and she is amazing. She’s a pal for Conor, good company for P when he works at home, and an exercise buddy for me. She gives sloppy, sneaky kisses and mostly likes to snuggle. The cats tolerate her but have mostly maintained their positions as big sisters (and all the violence and hissing that implies). We think she’s some sort of hound/retriever mix, but she’s pretty little – should top out around 30 pounds. She’s asleep next to me now – she’s snoring a little bit.

I’ve been waking up earlier – about 6 am – because mornings were feeling too chaotic. I’ve found that of all of my self-care strategies I’ve implemented over the last 2 1/2 years, this is one of the most dramatic in terms of how it has made me feel. I get up, take a nice long walk with Luna, come back, make the coffee, Conor’s lunch, etc. It gives me time to breathe – an hour I clawed back just for myself that doesn’t take away time with my sweet boys. Absolutely and without question worth the loss of that little bit of sleep.

What else? Work’s great for both me and P. Conor started Tae Kwon Do and loves it. I mean, it’s just pretty regular.

Of course, we have moments – well, I can’t really speak for anyone else, but I do. Arthur Morehead, an acquaintance from Charlotte that runs in the same foundation circles I work in, was diagnosed with colon cancer around the same time Preston was. He passed away last Friday.

I took the afternoon off. (I also had a cold, but I think I would have powered through – just didn’t have the motivation). I watched Fixer Upper (y’all, I LOVE these people even though it’s ridiculous and she likes fruit in bowls and subway tile too much) and lounged with the dog. I took a nice long walk with her this morning.

I could do a whole, “Every day is a gift!” thing here, but I’ll spare you. But I do just wander through life mostly OK and BAM – Mario Lopez. (Side note – he did a cameo on Brooklyn 99. I CANNOT ESCAPE AC SLATER.)

Chip and Johanna are about to do a reveal, so I’d better tune back in to the TV. Hug your people, (and dogs and cats) friends.

 

My birthday was yesterday. I’m officially closer to 40 than I am to 30. It feels very, well, adult.

Not that what we’ve been dealing with the last 2 years hasn’t been adult.

October is a strange-feeling month for me. It used to be my favorite. Fall. Fair. Birthday. But now, it has a lot more baggage. It reminds me of how I felt in those first few weeks – the not knowing, the tests, the tears.

It was the start of it around this time 2 years ago – Hurricane Matthew left an indelible mark on North Carolina – and smushed the back of my Honda Fit. It remained under a tarp for several weeks. My birthday came around, but moments after that, my grandmother died. We had my family over for dinner – we all wanted to be together. What they didn’t know then was that we had just found out from Preston’s doctor’s that his abdominal pain was probably colon cancer, and that the spots in his lungs meant that it was stage 4.

We literally got that call an hour before 14 people came over for dinner. We mostly kept it to ourselves, though I did drop the bomb on my mother.

A few days later, we had a small graveside service and a funeral. It’s strange – I didn’t really get a chance to mourn my grandmother. I loved her very much, but I remember being so worried about Preston that I didn’t really have the energy to process her death.

She also gave me cover. I’m not really a crier. Never have been. (for the record, my therapist finds this confusing, but has definitely stopped suggesting I “have a good cry.” Because. No.)

But during those weeks before we really knew, it gave me some space to be sad without having to talk about what was actually going on.

Trips to the fair remind me of when we took Conor just before the diagnosis with my mother in law and my dad. I vividly remember talking to Erin while perusing the gardens, “I just wish we knew.”

I remember facilitating a big event at work all the while knowing that Preston was having his PET scan at that very moment – the results of which would be so important.

Halloween was just before surgery #1 – Conor dressed up as Batman. We did “trunk or treat” that Sunday (even though Preston was feeling terrible) and somewhere around 4 AM on November 1st, we headed to the ER because the colonoscopy prep wasn’t working.

So yeah. October memories are a bit different now.

It’s hard to believe it has been 2 years, but some days it feels like it’s been decades, and other times it feels like yesterday. It does not feel like yesterday for Preston – he’s had 22 rounds of chemotherapy, 7 surgeries, a million doctors appointments, and two tattoos (Ok, I guess the tattoos count as fun things.)

His strength and attitude absolutely amazes me. While I do think he has more good days than bad, I also know that he spends a lot of energy putting up a good front for Conor and me. He goes along with my crazy ideas for family outings, humors my need to take obscene amounts of pictures, and takes care of Conor so I can do things like game night with my friends and tap class. He also manages to help cook dinner and do laundry.

Our parents have also been extraordinary. They’ve taken Conor out for adventures, had him for sleepovers, put him to bed when I had tap class, and just been a massive help. So many others have helped out with Conor (Shout out to Ray and Debora who added him in with his cousins for a teacher workday – he had so much fun!) and sent gift cards, and cheer-up cards, and met me for wine, and gone out to lunch, and asked about Preston, and not asked about Preston, and checked in on us and and and and.

Thanks.

For my birthday, Preston is taking us camping this weekend. He got me a fancy princess camping sleep system (I think it is to give this a fighting chance to happen again) and a cast iron skillet to use over the fire. I’m excited.

I also got a tattoo. A big one. It’s a bluebird. He’s beautiful.

My sister gave us tickets to Aziz Ansari in Durham tomorrow night – there will be much laughter.

I’m going to use my birthday money from my parents to buy new tap shoes.

My friends Allyn and Danielle took me out for tacos and margaritas. My friends Ret and Tori took me to lunch at Bida Manda.

Dad and I took Conor to the Fair.

We’ll celebrate with Shruthi and Mike with dinner on Sunday.

Conor had a T-ball game on my actual birthday, and he played really well and the weather was cool and I didn’t get any mosquito bites.

Then I went to hip hop class and danced and laughed until my face hurt.

I started and ended my day with a slice of yellow cake with chocolate icing that my mom made.

All in all, pretty great start to 36.

But all I really want for my birthday – this one and every one from here until forever – is for Preston’s cancer to go away.

 

 

 

Cancer is like Mario Lopez. (Hear me out – I have nothing against him, truly! I want to play this analogy through.)

It’s like when you’re in a hotel. For me, it’s usually a work trip. And you flop down on the bed between conference sessions and think, “YAASSS. CABLE.” and you grab the remote control (likely incredibly filthy – do you think they clean those things?).

Bam. Mario Lopez. Telling you about the latest movies that you can now get in your room.

You finally find Chip and Johanna Gaines or House Hunters International and things are good. You hate-watch the couple from Indiana that has a $2.4 Million budget for a house in Tahiti and you snark to yourself that Johanna’s totally going to use subway tile in the kitchen and things are good.

When it’s time to go to the networking reception, TV goes off.

You get back to the room, exhausted, and grab the remote. But do you go back to HGTV? NO.

Mario Lopez.

And on it goes until finally, you check out of your room feeling slightly resentful that A.C. Slater wouldn’t stop stalking you.

Maybe it’s just me?

Cancer is like that. You’ll have some really great times. You’ll giggle. You’ll play. You’re living this amazing life filled with so much laughter and love.

Then, BAM. Mario Lopez. (I mean, cancer.)

I find that these days, I’m good for about 80% of the time. Which, given what we’ve got going on in the background all of the time, is pretty damn good. I’ll tell you, though, that other 20% is not a picnic.

I haven’t given a full update on the last scans. Sorry for the delay. That 20% has been holding me back from writing here lately. I mean, who watches that weird TV channel intentionally?

We got P’s mid-treatment scans a couple of weeks ago. The waiting was AGONY. Y’all, I cannot express how stressful that was. We had some good distractions – a trip to Asheville with Preston’s parents, a trip to Build A Bear, Conor’s last week at his preschool – it all helped to pass the time.

When we got the first call from Dr. Moore’s nurse (Carol? Carolyn? I can’t ever remember) she sounded alarm bells by letting us know that “Dr. Moore wants to take it to Tumor Board.”

That’s a conference where they sit around and talk about your scans, and when things are going perfectly normally and you’re getting the results you expect, you don’t really do that.

So yeah. Mario freaking Lopez.

As it turns out, there was a debate between the radiologist and oncologist about what “progression” means. The radiologist thought the cancer was growing. Dr. Moore insisted (and I believe her) that teeny tiny growth on teeny tiny lesions is actually “stable,” because without the chemo she would have expected them to grow a lot more.

So, we are staying the course. It’s not exactly what we had hoped (which was, of course, that they melted away never to be seen again) but it wasn’t bad news, either.

Four more chemo treatments until we figure out what’s next. Scans will be in November before Thanksgiving and then… well, we don’t know just yet.

And while we plow through the next few months, I’m grateful that most of the time will be spent watching Conor play T-ball and learn Chinese (immersion is SO COOL) and the violin, going on some quick trips together, doing the jobs we love, spending time with family and friends, and generally finding as much joy in the between times as we can. We have so many more good days than bad.

And every so often, Mario Lopez.

Hi, friends! Apologies – I’ve been woefully delinquent about updating the blog. I’m sorry – I know a lot of people are rooting for us and praying and wondering!

Well, the problem with an update, is that honestly, there’s not a whole lot to report. Our life has this weird new “normal,” so it doesn’t feel that interesting.

A quick summary: chemo sucks. P is pretty sick for the 4 days after chemo and I still hate sleeping in the guest room. But, he bounces back pretty quickly and we’ve had a lot more good days than bad. Conor does well at mom and dad’s during chemo weeks, and we’ve settled into a routine.

We’ve been to the River and the beach, I went to a conference in Boston, Preston spent time with his friends, and Conor got to have some spend-the-nights with his cousins. We’ve played at Marbles and the Museum of Life & Science and Conor is an absolute fish in the pool.

So it’s just been summer. With, you know, a side of awful.

Tomorrow is treatment number 6. Which means we’re half way through. The next scan is a very big deal. (I had it in all caps but it felt yelly, so I brought it down a notch, but it still is. A big deal.) The chemo really, really needs to work. And all blood work signs would suggest that it is working, so we have a lot of room to be optimistic.

But it’s still scary. I can’t tell you what happens if it isn’t working because I don’t know. So I’m going to just leave it there. (So, if you’re the praying type, get on that. Please.)

I’m working on a post about self-care – we’ve gotten pretty good at it and so I have thoughts. haha.

Thanks for all of the love and thoughts. We’ve been incognito, but know that we do appreciate the cards and support and love coming our way.

I’ll check in when we have the scan results. In the meantime, cross all the things.

I’ve had this whole plan to “blog all of the time!” “It will be good therapy!” “So cathartic!” “Plus people will be up to date!”

Yeah. That lasted, what, one post?

I guess none of this has felt all of that interesting. Chemo sucks. It sucked before, it sucks now. He gets really nauseated for 4 days or so and then starts to feel a bit better and then it starts all over again. I sleep in the guest room and work from home. Conor’s amazing. Our family is incredible. So, we’re pretty good (all things considered.)

This weekend my sister got married. It was a wonderful few days and a beautiful distraction and a reminder of just how uplifting life can be. I had to take a moment to breathe during their first dance, but other than that, I held things together pretty well.

My therapist says I’m very, very good at hiding my feelings.

I think that’s a compliment maybe? It’s just that I’m good at compartmentalizing. As long as I can keep myself from spiraling – that’s the trick. Because if I start down the “how long do people with stage 4 colon cancer live” google search rabbit hole, man it’s game over.

I keep trying to remember this: Medicine is advancing literally every day. Preston is young and strong and stubborn. Our team is incredible. And being sad doesn’t really help anything, does it? It just makes me not enjoy the time I have.

And remember, that’s what we have. That’s how we live. No sense in screwing it up.

I had the best of intentions to write more often, but you know, road to hell and all…

P had the first (actually 13th) chemo last week. It was three tough days. I’m not sure if it was actually worse or if we just don’t remember that it was that bad the first time. The good news is that the new drug doesn’t come with the weird side effects that Oxaliplatin had, but it had plenty of your traditional chemo unpleasantness.

He did bounce back pretty quickly and had a rather amazing experience on Friday in Charlotte at a concert with some friends. You probably already saw it on Facebook, but here’s the video: https://youtu.be/DyfMcsbFHwU

Conor has been amazing. I think he feels pressured to be on his best behavior. I kinda wish he didn’t – but he’s definitely more aware this time around.

We’re much better at settling back into regular routines – part of it is Conor’s age, another is that Preston is working still so he gets back to work as soon as he’s able. I do pretty well during the day. Nights are tough, but our motto is “Better Living Through Modern Medicine” so between that and a boring audiobook, I’m able to stay distracted enough to fall asleep.

Thanks for the love and cards. Preston’s crowd surfing experience feels very much like a metaphor for our life right now – lots of hands holding us up, but pretty scary and not a lot of control as to where we’re heading or how to get there.

This week we snuck away. Because we have gracious, supportive employers, we left the Outlook behind and spent the week at the River just playing. It was (mostly) magic. The extended family was there on the weekends, so we got in plenty of time with our aunts, uncles, grandparents, cousins, etc., and then had plenty of time just the three of us. It rained (a lot) but we still had time to swim, fish, kayak, jump in puddles, hurl ourselves down the giant slip ‘n slide and just generally have a good time. We watched movies and slept in (thanks, Mom, Dad and Mimi!) and P and I even had time for a nice dinner out at Spoon River. We took the ferry to Aurora to the fossil museum and dug for sharks teeth. We ate Kings Chicken on the waterfront in Washington. I did a little shopping in downtown Belhaven (my new skirt will debut on Wednesday). We traveled to Hyde County to go searching for bears (we found them. It was awesome.)

And there were times that I totally forgot what tomorrow will bring. Another round of chemo. 46 hours with the pump. The guest room.

And forgetting was great!

But then I would remember.

Night time is the hardest for me. Or when I’m alone. That was rare this week, and so that worked out well. At night I managed to keep the darker dwellings at bay with an audio book and some killer sleeping pills, but every so often I had a tough time and I think it probably showed.

This afternoon I thought I needed some “alone time” so I left P with his new TV and Xbox (the chemo fairy is generous indeed) and C with the grandparents and I went off to Crossroads. Craft stores (3!), DSW, Target, Coffee & Crepes – what’s not to love? I was doing pretty well until I thought it was a good idea to look at Fathers Day cards. (Seriously, y’all, what the heck was I thinking?) and I was really on the verge of losing it when my cousin Susan came up to me! She probably didn’t realize it, but she was just what I needed to snap me out of it.

If you’re reading this – thanks, Susan!

This all sucks a lot. It feels different than last time, though. It’s definitely less hectic – the first time around, there was dealing with the initial diagnosis, his former employer (good LORD I’m glad we don’t have to deal with those awful people again), urgent surgery, and just getting used to the whole idea.

This time, it still took us by surprise, but we know what we’re doing. P knows to get the deodorant that doesn’t smell too strong and to shave his chest near the port so the bandage stays on better. I know to stock up on craft supplies and move some clothes into the guest room. Conor knows that he’ll have more sleepovers at Granna and Grandaddy’s.

Somehow the cats know how to be more annoying.

I also know to take a sleeping pill and turn on my audio book which is what I’ve done, so I’ll sign off for now. Thanks for the notes and the cards – we’re glad to have you all in our corner.

Our village is an amazing place and we feel so loved and surrounded by so many people. Thanks for the outpouring of loved we’ve received in the last few days.

It’s a hard thing to announce to the world, “WE’RE DOING THIS THING AND IT SUCKS” but some days, I’m grateful that we can reach everyone and get the message out quickly. Don’t get me wrong, the social media platforms all have their issues, but I do think it allows for folks to know what’s going on with us and share their well wishes. Besides, I follow a lot of accounts with cute cows and otters, and let’s face it, nothing wrong with that.

Anyways, we’re going to take vacation next week. We’re incredibly fortunate that both of our employers were pretty much yelling “GET OUT” (but in a good way) and we’ll be taking some much-needed R&R. We’re probably going to watch too much TV, and get water logged, and bug bitten, and all of that, but we’re pretty sure we’re going to have a good time being together. And sleeping in. And eating junk food. (Ok, now I’m excited. How am I supposed to make it through another work day?)

We had our chemo education today. I mean, we didn’t really need it. I took OBSESSIVE notes last time. This time, I literally wrote down one sentence, “Calling in Ativan for sleep.” (note to self: call PA for new appointment to get trazadone for sleep.)

We have a lot to look forward to this summer – my sister’s wedding, a beach vacation, trip to Boston for work/fun (it includes tickets to Moulin Rouge! as it’s being adapted for broadway and I AM EXCITED.) I’m hopeful that the chemo won’t be as bad as last time and that P is still able to enjoy the summer.

We’re off to buy a new TV tonight (“It’s as big as you are! Literally. It’s 60”) because… wait. We don’t need a “because.”

Call that the bright side?

Welp. Here we are. I’ve written another blog post from Friday night, but that one felt a bit heavy, so I’m leaving you this, too.

Preston’s cancer is back. It’s a hell of a lot sooner than we’d hoped.

But.

Well, it is what it is.

He has 8 nodules in his lungs and one in his liver. They’re “tiny” by cancer standards, so we’ve got that going for us. We’ve met with his oncology team and feel confident that they’re ready to come out swinging.

Chemo starts June 4th.

FOLFIRI + Avastin this time. We’re switching out the Oxaliplaitin which was the drug that caused all sort of weird side effects. He’ll still get the pump for 46 hours once every two weeks in addition to an infusion of the other stuff.

Surgery’s not really on the table since it didn’t really work. It’s just too hard on the body and the lesions are in too many places. The idea is to shrink/keep the existing tumors at bay while keeping others from forming. It’s pretty much like managing a chronic disease. Hopefully we’ll be doing the managing for a long time!

We were pretty blindsided (see my other post for the real-time version. I’m sharing it because I think it’s an honest perspective) but now a few days out, I am really glad that  I didn’t spend the last 6 months agonizing over cancer. We were pretty free from it, actually, and it was a real blessing.

I’ve updated our FAQs page here with information about how you can help and also some things that we learned from last time. Hindsight is kind of an amazing thing. There were a few things that I’ll do differently this time – for example, I plan to see a counselor – and where we are now doesn’t feel like we’re riding a rollercoaster without a harness. It’s more like a commuter train – it stops in plenty of places we’d rather not be, but it mostly gets us where we need to go and it’s not scary unless you jump in front of it.

I’m not sure that analogy works. Sorry. I’m tired and that’s the best I can do for now.

With love,

Sarah