Perspective

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Looking at my notifications on Facebook the other day, I saw one of those “memories” they periodically throw onto our news feeds – things we had posted that day in years past that they think we might want to remember. According to Facebook, seven years ago on that day I discovered that my hip was wonky beyond repair and would need to be replaced. It was a bit of a shock at the time, since I wasn’t in a ton of pain. I honestly thought I had pulled a muscle, but as the doctor (who had seen my MRI and knew better) examined me, contorting my leg in various, strange angles, he kept watching my face for a reaction. “You don’t need to be stoic,” he reassured me. I shrugged. “She’s stoic, isn’t she,” he said softly to my husband, who pretty much fell out of his chair laughing, “Oh if she was hurting, trust me, YOU’D KNOW.” Alas, despite the lack of obvious symptoms, the hip was indeed busted and would have to go. Months later, when the excruciating pain did arrive, I was promptly scheduled for hip replacement surgery. And. I. Panicked.

This was a big thing for me. A major surgery! I’d had two C-sections, but this? This was HUGE. I was terrified.

Now, those of you who have read this blog for even a teensy bit know that the hip surgery was just the warm up. I, however, did not know this. To my seven-year-ago self, this was a big deal.

Given the odd medical turns that my life has taken since then, I now look at my tragic response to the hip thing with a mix of embarrassment and amusement. Because come on. At the time, however, this was all I knew, and for me it was massive and terrifying. I asked our good friend and pastor to come to the hospital with me before the surgery because I NEEDED DIVINE HELP, PEOPLE. I was a mess. To the great credit of everyone around me, no one told me to suck it up and adult already. No, my people were kind and sympathetic and loving, and not a single one told me (to my face) that I was being a ninny. But I look back at it now and sort of wince. I made it a big deal. But you know what? At the time, it was.

What struck me about the Facebook memory the other day was the date: February 4th. Do you know what February 4th also happens to be? World Cancer Day. Oh the irony.

Fast forward a few years to my second hip surgery. My first artificial hip had apparently gone rogue and given me a whopping case of metal poisoning, along with a pseudo tumor just to make things interesting, so the bugger would need to come out. The hip replacement had to be replaced. Another big surgery. And I was… irritated. 

Not terrified, not trembling. Irritated. Really bugged. Annoyed, even.

The difference? Oh, a cancer diagnosis, two eye surgeries for radiation, rheumatoid arthritis, you know… stuff like that. 

Perspective. It’s a thing.

Our son’s birth twenty-some years ago was a dramatic event. After our first child, our daughter Christina, was stillborn, this next pregnancy was fraught with worry and residual grief. The pregnancy itself went smoothly, but the delivery ended up involving a frantic, emergency C-section when his heart stopped twice and my blood pressure plummeted. They got him out and we both survived, but just as my husband and I began to catch our breath and enjoy our beautiful, seemingly healthy baby, he was abruptly whisked away. Suddenly there were x-rays and echocardiograms and films being couriered to a cardiologist’s home in the middle of the night. It’s bad. It’s a heart defect. No, it’s a lung defect. No wait – it’s just pneumonia. Around the clock IV antibiotics in the NICU (neonatal intensive care unit) and he’d be fine in a week or so. Of course, it took us a while to accept the “he’ll be fine” part, but as the days stretched on it became obvious that he was indeed getting better. We caught our breaths and relaxed into our new routine at the NICU. And as we relaxed, we started to notice our surroundings, got to know the nurses and heard the stories of the other parents who came to nervously hover over bassinets full of wires. Now, as a full term baby (and also nine and a half pounds), my boy was a bit of an oddity in the NICU. In fact, he looked like a sumo wrestler compared to the other, mostly premature babies. It inspired a lot of questions that sounded like you’d hear in a prison: “So what are you in here for?” On the day he finished his antibiotics and was proclaimed healthy enough to go home, I noticed another mom at a bassinet nearby looking over at us wistfully. I started chatting with her, cheerfully asking her when her baby would also get to leave. “When he can suck, swallow and breathe on his own,” she responded quietly. My heart dropped to my toes. We had been through an emotional hell that week, faced with the possibility that we could lose another child, and it felt like the very worst thing in the world. But this sweet mama had just silently watched us do achingly normal parent-type things – like trying to put a onesie on a wiggly, noodle-necked baby for the first time – all the while wondering when or even if she’d get to do the same thing. It was a stark reminder that our story wasn’t the only story in that NICU.

Perspective.

Perspective gives us the opportunity to re-orient ourselves in the larger picture. Heck, it allows us to acknowledge that there even IS a bigger picture. It helps us see that not every thing that feels huge will always be huge. Despite clichés like, “This too shall pass,” and “It could be worse” (a Minnesotan specialty), perspective does give us the opportunity to understand that where we are is not THE place, it’s just A place. And that understanding can be a comforting, hope-affirming gift.

But it can also do the opposite, as evidenced by my harsh judgment of the trembling, hip-surgery-fearing, seven-year-ago me. Sometimes perspective emboldens us to view others with a patronizing side-eye when they have the audacity to believe that what they’re going through is a big deal, yet we’ve decided that it’s not. Pffft, why is she being so dramatic? It’s nothing.

Well, to them it’s hardly nothing. To the contrary, it’s likely the most not-nothing they’ve dealt with thus far in their life. But unfortunately perspective can turn things into a suffering contest, when, repeat after me, friends: There. Is. No. Contest.

Before my first hip surgery, there were a few folks who’d brush my fear off with a, “Well you know, knee replacements are WAY worse.” Ok awesome. I’m so not scared now, thank you.

Then there’s a sort of reverse perspective phenomenon: we see someone else’s situation as so horrifically tragic and worse than anything we could possibly imagine, and we decide we’re no good to them. There’s no way we could help because we can’t even begin to relate, based on our own experiences. It becomes an excuse to not engage, and we end up running from someone who just needs our presence.

When we see our own stories as part of a larger narrative, we gain perspective. And when we acknowledge and honor the importance of other people’s stories, we gain an opportunity.

Perspective can be good or bad, helpful or hurtful, based on how we use it.

We have so many opportunities to come alongside one another when a fellow human is going through something that to them is big. To just show up, without judgment, and simply love on them. When we let our own perspective give us permission to decide whether another person deserves to feel the way they do, we create this weird hierarchy of suffering. And instead of coming together, we distance ourselves from people who could really use an ally. 

Call it grace, call it generosity, call it not being an a-hole, it doesn’t matter. The difficulties each of us has faced in our lives are an invitation to be empathetic, not a license to judge. I’d like to think that the current me would be kind to the seven-years-ago me. But wow, she was such a ninny. 

Ok, I’m working on it

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5 years

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5 years…

It was 5 years ago today that I heard the words, “You have cancer.” Amidst the instant whirlwind of scheduling scans and oncologist appointments, Googling “what is ocular melanoma” (bad idea) and “ocular melanoma mortality rates” (REALLY bad idea), I had to break the news to loved ones and try to shepherd my kids through the unthinkable. Somewhere in there (mostly in the middle of the night, when I couldn’t hide from it) I also wrestled with my own disbelief and fear – Really? Me? Now?? Whyyyyyy??

As I struggled to find my bearings in this new and disorienting landscape, preparing to get my fight on, I prayed. Hard. Words and coherent thoughts refused to come, but my heart prayed and cried out anyway (I’m pretty sure that’s a language God speaks, so it’s ok). And as I learned more about my cancer and my odds of beating it (50-50), I wrestled with the very real possibility that I could die from this nonsense. Now, being a good Lutheran of German descent, I was instinctively careful to stay humble with my prayers. Nothing too extravagant, just the bare minimum. I know it sounds ludicrous, but I also know there are a few folks tracking with me here. Don’t be greedy with the prayers, don’t ask for too much (it’s ok, the rest of you can laugh, but for some of us this is a thing). So what was my minimum? What was the very least I could ask for? After serious consideration and calculation, I determined that what I desperately wanted was 5 years. It’s true that with some other cancers, 5 years is a magical number because people can declare themselves cured after that amount of time. Not so with my cancer, because it’s “special” (of course it is). I’m not sure if there’s an official time when we get to declare victory, but I know I get to stop seeing my oncologist at 15 years. So that’s not the reason I picked 5 years.

5 years reflects my overarching concern (ok panic) when I was first diagnosed: my kids. I think this is common in parents with cancer, but my first thoughts were of my kids. They were teenagers. Beyond all the laundry, packed lunches and rides to activities, there was still so much that I needed to teach them, and so many significant events I wanted to be there for. Prom, high school graduation, starting college…

So 5 years meant that I would have seen them both graduate high school and head to college. Riley would be in his senior year and Tessa in her freshman year. By then I’d have had the time to impart all my motherly wisdom, and they’d be old enough to handle things on their own if they had to. And I felt like 5 years was a reasonable ask, because even if the cancer spread before then, I’d probably have a few years after that. So it wasn’t like I was being so brazen as to ask for it to not kill me, I was just requesting some time. 

Ok is this even normal?? Probably not. And does God work like that? Nope. But our minds do weird things in crisis situations. I’m not proud to admit it, but I actually spent a significant amount of time calculating all this, as if it were a totally rational thing to do. Mostly at about 2:00 am.

My point with all this is that while all of my cancerversaries are significant, today’s milestone is particularly meaningful for me. 

Sheesh, she could have just said that. Look at her, she hits 5 years and suddenly gets all wordy and stuff! Like she has all the time in the world. How long is her post going to be when she hits 10 years??

(No idea who let Jim Gaffigan in here, sorry. Continuing on…)

I spent a good portion of my day today trying to put together a collage of all the important things that I’ve been able to witness and be a part of these last 5 years. Turns out it’s simply too much to put in a single collage, which just wrecked me. In a good way. I listened to “The Riddle” by Five for Fighting (Five! Holy crap, I just noticed that. No seriously, don’t laugh). I talked about that song in a post a few years ago (March, 2016), when I was struggling with finding order and reason in this whole cancer business (spoiler alert: there is none). I had a friend who passed away from cancer, and she loved that song, and I never could understand why until I found myself wrestling with that riddle myself. I find the song very moving and powerful now.

I also listened to “Before the Morning” by Josh Wilson. Here’s the cool story about that one: early on after my diagnosis, while I was still waiting to find out the extent of things and if it had spread, I went to my health club with the goal of sweating some of that fear out. As I unpacked my bag in the locker room and put on my shoes, I noticed the lyrics of the song that was playing:

Would you dare, would you dare to believe

That you still have a reason to sing

Cause the pain that you’ve been feeling

It can’t compare to the joy that’s coming

So hold on you gotta wait for the light 

Press on and just fight the good fight

Cause the pain that you’ve been feeling

It’s just the dark before the morning

It was stunning. As if that song played just for me, in that moment, because I needed to hear those words that day. I’ve had a lot of moments like that these past 5 years, when I feel as if God is drawing me close and saying, “Hang on kid, we’ve got this.”

So it’s been a reflective day, to say the least. Looking at pictures, listening to songs, crying a few times. Lunch and shopping with a girlfriend too, so it’s not like I’ve been in my pj’s all day (but a fair amount of it, and I’m telling you now I’m not sorry). I’m so overwhelmingly grateful for these last 5 years, and for the fact that assuming nothing weird happens, I’m going to be around for a good while longer. Maybe a really long time – not that I’m getting cocky or anything (again with the German Lutheran thing). When a hockey game goes into overtime, my husband calls it “bonus hockey.” So now that I hit my 5 years, I’d say this is bonus life. Bring. It. On.

Press on and just fight the good fight

Here’s the thing about fighting the good fight: it’s tough to do alone. Luckily I don’t even know what that’s like, because I’ve had an army with me the whole way, which I think is the thing I’m most grateful for. 

Soon after my diagnosis, my girlfriend Jami decided that all the girlfriends needed to come over to my house to pray for me. I wasn’t sure if I was emotionally ready for that, but she insisted and they all showed up. They prayed the most achingly beautiful, loving prayers over me, and by the time we were done everyone was sobbing. After surveying all of our mascara-streaked faces, Jami deadpanned, “Oh, so this is how Avril Lavigne does that smoky eye thing,” at which point we all burst into shrieks of laughter, because we actually looked more like Alice Cooper but that was just funny. At that moment, I heard the garage door opening, signaling that my husband had returned from picking up our daughter from dance. “Guys!” I gasped, “Tessa can’t see us all crying like this, she’ll freak out!” And suddenly, my friends were all world class athletes, vaulting over the sofa, hurdling the coffee table, dashing to the box of tissues and throwing them to each other with laser precision. Which, of course, sent us back into fits of laughter. And that was what my daughter saw when she walked into the house – a bunch of women who love her mom, laughing hysterically together.

That, I think, is what fighting the good fight looks like. It looks a lot like showing up for one another when life gets crazy. When the riddle is unsolvable, when you’re spending sleepless nights calculating irrational prayer requests…when you have no foothold, hold out your hand.

Grateful for so much tonight, and totally crying again, so I’ll leave it at that. I love you, my beautiful army. Thanks for having my back and fighting the good fight with me. You know I’ll do the same for you.

It’s Fall!

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Hello!

First and foremost, let me reassure you (and you need to imagine this in a Monty Python voice or it just sounds weird) I’m not dead yet! Because I realize that when I go too long between posts (like, say, a full year), people worry that my health has taken a turn for the worse. It hasn’t.

No, I just let it go, inadvertently at first (“Oh! I’ve been so busy I totally forgot to blog!”), and then with a resigned acceptance (“Screw it, I’ll have time to blog in the fall”). And now… It’s fall! But as I wrote about in my post, “The Underwear Always Wins,” (June 9, 2017) well… the underwear always wins (sorry, I’ve got nothing new to add to that, it still does). I allowed myself to get caught up in the “stuff” of life and didn’t write.

And as my youngest child’s senior year of high school, it was kind of a big year for all of us, with a lot of “lasts.” I would love to tell you that I intentionally decided, in some super chill, zen-like way, to put other things aside in order to be fully present during this important year. No, it was more like grace. Once I realized I had let the blog go, I had a choice: I could beat myself up over it, or I could be gentle and decide to go about things a different way. I kept notes on things I wanted to write about, a rambling, stream-of-consciousness document on my iPad called “Blog Thoughts.” Coming back to it, I was at once amused and irritated at the cryptic nature of some of my jottings…

…depth perception is underrated and I have the oven burns to show for it…

…the dog barfed and now I can’t find my slippers…

…friend up/Marie Kondo…

…”I upped my commitment! Up yours!”…

What was I even talking about?? More to the point, why were these things amusing/upsetting/important and ultimately blog-worthy? No idea. So we’re starting fresh here, people.

Speaking of starting, as I get back to this, I am reminded of the first rule of sitting down to write: it doesn’t matter if it’s been a day, a month or a whole freaking year – when you sit down to write, EVERYONE will suddenly want to talk to you. It’s just a fact. Your popularity will know no bounds. My husband comes out of his office, deciding that now – yes, right now! – is the time we absolutely must talk about _____, my kids both text me, people I haven’t spoken to in ages call me. In fact, I just got an automated phone call from the Mayo Clinic reminding me of my upcoming appointment – and I’m pretty sure that in five years I’ve NEVER gotten one of those calls from them before. It is a thing, and I’m sure you all know that. Whatever your project or task, YOU KNOW that the second you start it is the second you become the most sought after person in the world. Yet we persist…

Speaking of Mayo (and I do so love speaking of Mayo…NOT), I have scans coming up in two weeks. Now, I’ve been doing this whole cancer dealio long enough to know that I get just a wee bit nuts in the few weeks before scans, it’s just a fact. The nuttiness varies from time to time, but however it shakes out, I just know that I will never be the best version of myself in the weeks before scans. I’ve tried to fight it, but my efforts have been in vain as I am always just a teensy bit nuts. I’ve just accepted it now. This time, rather than being excessively short-tempered or weepy (my trusty go-to’s), I’ve simply been a space case. If I can hold it, I can forget it. My jacket, my phone, my shoes (true story)…everything of value will get left somewhere these next two weeks, apparently. It’s fine, I guess I shouldn’t be so tied to material things, right?

But no matter how it makes itself known, scanxiety is a thing. Angry, weepy, forgetful – it is what it is, but the one non-negotiable pre-scan practice for me is always Preparing to Hear Bad News. Because as I’ve said before, there’s this warped part of me that feels like if I come into these appointments too cocky or too casual, then BAM, that’ll be when I’m told it’s metastasized and I’m going to die. And don’t tell me it’s irrational – I KNOW darned well it’s irrational, and probably more than a little morbid. But it’s my thing, I’m owning it. I have to rehearse in my head what that news would sound like and feel like. I have to hold my own mortality up before my face and examine it from all angles. It’s become almost a pre-scan ritual for me: “And now is the part where we contemplate death…” While it may sound ridiculously morbid, the odd thing is that it’s actually the opposite. In fact, I would argue that it’s a valuable tool for anyone, cancer fighter or not. 

Once I had finished my initial treatment and was settling into life as a long-term cancer-fighter-type-person, I realized that my ideal state exists somewhere between forgetting and remembering, between hope and fear. Hope, because – well, HOPE. I want to always be someone who sees glasses as half full, and believes in miracles and happy endings. But fear…a little bit of fear can be good too. Not so much fear that I’m paralyzed, but rather enough to put me in motion. Because I don’t ever want to forget for a second that this whole ride could end sooner than I’d like, and I want to live my life as someone who gets that. Someone who doesn’t wait to do all the things and love all the people, someone who isn’t waiting to live. It’s like that “Live Like You Were Dying” song – only minus the riding a bull named Fu Manchu part (I don’t care if the bull is named Sparkles, that just sounds terrifying and is certainly not on my bucket list. But to each their own..)

The point is, I’ve come to see my scans – and all the weird scanxiety around them – as an opportunity to check in with myself, a kind of personal performance review. How am I doing at this life thing? Am I living like I mean it? Or have I forgotten that life is fragile? If I get bad news, am I going to have regrets about the way I’ve spent my time?

On the day I was diagnosed, I spoke with my pastor. It had been just a few hours and I was only starting to gather myself.

“So what are you feeling right now?” He asked. 

“Disappointed,” I snapped back. 

He chuckled, clearly not expecting that response,  “Ooookay, do you want to explain that?” 

“Well. I’m disappointed that this has to be my story now. I’m disappointed that just when I feel like I’m maybe getting the hang of this life thing, I might have to leave. I’m disappointed that I might not be around for graduations and weddings and grandbabies. But mostly I’m disappointed that my story could have a really lousy ending, and that instead of this person who did really cool things, I’ll be just another person who died too soon.”

So that’s the focus of my pre-scan contemplation of death ritual these days. If I get bad news, am I going to be disappointed? Or will I be able to look my mortality in the face and say, “Ok, it stinks that I’m leaving this joint early, but I can say with absolute certainty that I’ve had a pretty solid run here.” If I can’t answer like the latter, then my performance review tells me I’ve got some work to do.

I share this with you in case you’d like to join me in this fun little exercise (“Oh Jen, you have such a morbid idea of fun, count me in!”). You can skip the bad elevator music and getting stuffed in an MRI tube, but the personal performance review isn’t a bad way to check in with yourself, I’ve found.

For my part, among other things, I’m going to work on writing more regularly. Because I have a better story than “she had cancer.”

A Good Sweat

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I happen to be having a rheumatoid arthritis flare right now, which means frequent inner conversations that go something like this:

My body: Everything hurts.

My brain: Yes, it’s an RA flare, we’ll be fine.

Body: Nope. Pretty sure we’re dying.

Brain: We are not.

Body: We are. We should lay on the couch in the fetal position and not move.

Brain: Actually we’re going to go exercise now.

Body: Nope. Need fetal position. And a doughnut.

Brain: No, we’re going to work out.

Body: But it hurts to move!

Brain: We’re leaving now.

Body: Why on earth would we move when it hurts to move???

Brain: Because it helps.

Body: WHY DO YOU HATE ME?

Brain: I don’t hate you.

Body: Well I hate you. And I want a doughnut…

 

Needless to say, when I get to the health club to work out during a flare, it is often with a body that is cursing under its breath at me. And sometimes that makes it hard to muster a good attitude – especially if, say, I missed my morning group fitness class because I was doing something stupid (like spending several hours trying to understand my cellphone bill, that kind of stupid). You know what else makes it hard to have a good attitude? The stair climber. Or, as I like to call it, climbing stairs to nowhere. Feels ridiculously futile, this climbing stairs in place thing, but when ya gotta sweat, ya gotta sweat, right?

And speaking of sweat…

This might sound like oversharing (and if you’ve been reading this blog for any amount of time, you’re thinking, “Jen, that ship has sailed”), but I perspire profusely when I work out. I like to think that it’s because I’m just so gosh darned fit, but I don’t really have anything to back that up. All I know is, when I work out there might as well be a sign by me, like the ones they have at amusement parks: “You will get wet.”

So when I’m on the stair climber machine, going nowhere hard, I can seriously soak that sucker. And I’ve mostly gotten used to the looks when people walk by. Especially the poor guys whose job it is to clean the machines. I see them pass by warily, towel in hand, their faces painted in dread as they observe the way I have drenched the machine. One guy actually visibly shuddered, I’m not joking. Between them and all the side eye from the ladies with the perfect hair and makeup, it makes me want to stand on the rails of the machine and announce loudly: PEOPLE! I AM GOING TO WIPE THIS DOWN WHEN I’M DONE, SO RELAX! THE MACHINE WILL BE FINE!

The other day, after spending my morning with every cellphone bill from the last year and a half spread all over my kitchen table, and with still no answer as to why we are being billed for a number not associated with any of our phones, I gave up and headed to the health club and the dreaded stair climber. To add to my lovely mood, there was the RA flare, and those things can make me crabby if I’m not careful. Not as crabby as taking my “escape hatch” prednisone, however. My rheumatologist prescribed it for flare ups, but the last time I took it, I almost got kicked out of a soccer game, so I try to avoid touching the stuff. Instead, I try to eat super clean and work out and do all the healthy things (in addition to my regular RA meds). But for this moment, I will say I was a wee bit crabby.

So here I am with my aching joints and poisonous attitude, climbing stairs to nowhere and getting more than a little irritated at the “Oh my gosh could she sweat any more” looks I’m getting, only to notice out of the corner of my good eye that a guy has stopped walking and is standing next to my machine. Yes, if he had been on my left he’d probably still be there, but he was on my good side, so I knew he was there. And I was irritated. For real! I can’t believe he’s doing this. He’s probably waiting to catch my eye so he can shame me or laugh at me. I hate this. I hate being here on this stupid machine, climbing these stupid stairs with my stupid joints. I kept my eyes forward and silently, angrily sang along with the song in my headphones, until I heard him talking. Exasperated, I pulled out my earbuds and heard, “…you’ve got sweat flying everywhere!” I whipped my head around, preparing my best angry look (and I have some good ones, just ask my kids), only to be confronted with the most radiant smile. This beautiful man was beaming up at me appreciatively, “Look at you! You’re just going at it! I love it!” It was one of the personal trainers at the club, but I’d never seen him before. My mouth hung open for what seemed like a ridiculously long time, before I stammered something eloquent like, “Yeah, I sweat a lot…” He smiled, gave me a thumbs up and a “Keep at it!” And walked away.

To my credit, I did not proceed to trip up the stairs that oddly enough don’t stop moving when you pause to have a conversation – but I could have, I was so stunned. I stood up a little straighter, grinned and kept climbing the stairs to nowhere while dripping sweat all over the machine. But I did it with a very different attitude. Look at me! I am a beast! A BEAST, I tell you! Screw RA and cancer and fake hips and wonky eyes, because I am going at it! I don’t feel crummy often, and it’s very rare for all of my health “things” to come to the party all at once, but when they do, I want someone like him at the party too.

I left the health club with two takeaways. The first was about Mike (I checked his name tag when I high fived him on the way out). I thought about how, when other people saw gross, he saw good. I want to do that. I want to be that for others (I was going to say that I want to be like Mike, but I think that slogan is taken. Bummer, ’cause it would be good here).

The second thought was about Brené Brown’s book, Rising Strong, which I cannot get enough of (thankfully she just released another book, so it’s going to be ok). In it, she talks about the ways we make up stories to explain the things with which we struggle. Only it’s not always a true story that we tell ourselves. She encourages people to say, “The story I’m making up right now is _____,” as a way of honestly examining and owning what we’re telling ourselves about the situation. So on the stair climber, the story I was making up was that everyone around me was disgusted by my sweat. The thing is, I didn’t actually know that was true. Perhaps no one even noticed my perspiration, or they did but weren’t repulsed by it. Who knows? Not me. So why make something up? Here I was, all achy and irritated, expecting the worst – and instead I got the best. It made me wonder: how many times do we brace ourselves and throw on our armor because we know what’s coming, only to find out that… we actually don’t know?

On that day when I didn’t show up at the health club as my best self, someone saw good anyway. We can’t always tell when someone is having a crummy day, but we can, like Mike, choose to see the good instead of the gross – and then take the extra step to speak it.

From one sweaty person’s perspective, I’d say it makes a difference.

Tell me somethin’ good

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Well as you can probably guess from the picture, the news at Mayo was good this week! That’s me with my amazing team of rockstars: Kathy (the most soothing voice), Kim (the best hugs) and Dr. Pulido (super smart oncologist. Also Einstein). And me? By that point in the day, my eyes had been pretty beat up, plus I was overcome with relief and joy at the good news – so I look kind of drunk. It’s fine, I was so happy I didn’t care. Still don’t. I wore the t-shirt mostly to be cheeky with Dr. P, but it turned out to be a delightful way to interact with everyone at Mayo. When my name was called for my first appointment and I stood to meet the nurse, she excitedly blurted out, “I saw the most amazing rainbow on my way here this morning!” Now, Rich and I left the house at 5:30 am and I had been fasting for my MRI, so I was a little – shall we say groggy? – and I was slow to react. “That’s something good, right?” she insisted. My shirt… “Oh! Yes, rainbows are very good! Thank you!” And so began the “tell me somethin’ good” game at Mayo. Everyone I approached seemed to take it as some sort of a challenge, one that they absolutely wanted to get right for me. Checking in for my blood work, the lady behind the desk earnestly tapped her forehead with her finger while apologetically explaining, “Hang on, I’m trying to come up with a good one!” (She did)

The best one, of course, was from my oncologist – but not before he sent me into a full-on panic first. Typically, by the time I’m sitting in the chair in his room, it’s been a long day. All the tests, all the waiting, all the nerves and emotions come down to this one moment. Waiting for him to come in with results feels like forever, but this time it was especially long. I turned to Rich nervously, “It’s usually not this long. Why is it taking him so long??” He shrugged, because the truth was that yes, it was taking longer than normal, but he was smart enough to know that it might not go well for him if he acknowledged it. “Maybe he had to see another patient,” he offered. But Dr. P. had darted into the room to grab a folder from his desk as we were entering, promising to return as soon as he’d looked at my results – so I knew that wasn’t it. There was only one reason it was taking him longer: my scans showed bad news. This was it, the moment I had been fearing since my diagnosis. I took a deep breath and prayed that I’d be able to handle it with strength and calm.

Suddenly the door burst open to reveal Dr. P. in the doorway, holding his cellphone aloft as it blared the song, Tell Me Something Good by Rufus and Chaka Khan. He grinned and grooved into the room, followed by Kim and Kathy, also smiling broadly and laughing. It took me a half second to comprehend it all… Oh! The news is good! He’s telling me something good! Also, the man can dance! But – good news! “I had to find the song on YouTube,” he said proudly. That’s why it took so long. He wasn’t looking at ominous scans, or rehearsing how he would tell me that I was dying; he was searching YouTube so he could share the good news with a song and dance. I didn’t think I could love the man any more, but there you go.

My tumor has shrunk a bit, and my liver and lungs show no signs of metastases – that’s about as good as it gets, folks. I’ll go back in another 9 months. There was some other stuff, mostly that I might need to get an implant in my eye that releases steroids or something, because the Avastin eye injections aren’t working so well anymore. Totally cringeworthy, yes, but we shall save our cringing for another day. Today, we dance.

But thinking back on my day, and on my nervous moments in the oncologist’s office, I have to wonder: how often is my immediate reaction in a situation to expect the worst? I know it’s a self preservation thing, this bracing for impact when the news could be bad, but sometimes the news surprises us. Sometimes, your oncologist bursts into the room dancing. Sometimes, you get told somethin’ good. I’m going to try to look for that more, even when I’m not wearing my shirt.

As always, thanks for coming along on this journey with me. It’s nice to have company. Have a great weekend, everyone. And look for somethin’ good!

 

The Underwear Always Wins

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I know it looks like I forgot I had a blog. Or decided I didn’t feel like doing it anymore. Maybe I simply couldn’t find the time to blog because I was busy doing AMAZING THINGS. You know, traveling the globe. Writing a novel. Ending world hunger. Becoming an expert at…something. Yeah, as much as I would love to regale you with tales of my exotic exploits, the simple truth is that I haven’t written because I got completely swallowed up by my life. Don’t get me wrong, I’ve done some cool things and had some great experiences this year, but those aren’t the things that have kept me from writing. It’s the underwear. I’ll explain…

I like to call it “Triage” – the immediate needs take precedence over the things that can wait. So in the reality of day-to-day living, that means that if a task doesn’t fall under the category of “This must happen today or I don’t know what will happen but it’s bad,” then it tends to get pushed behind the things that do. Sometimes I’m aware that I’m doing this, but most of the time it just kind of happens. And then suddenly it’s been months since I said I would do this Very Important But Not Important On a Daily Basis thing. I felt a little better about this phenomenon after running into a friend at Target (triage – we needed toilet paper in a rather desperate way. I won’t elaborate). She’s a brilliant writer, and is currently pursuing her master’s in it, and yet she was having the same struggle: “You sit there and think, ‘I could get another chapter of my book written…or I could finish the laundry so everyone has clean underwear tomorrow.’ And the underwear always wins.”

Anyone else feel like that could be their bumper sticker?

“The underwear always wins…”

And here’s the kicker: I’m someone who is supposed to know better. I have cancer, for crying out loud, that was supposed to be my wake up call. The life-is-short-so-do-all-the-things-now epiphany. And initially I did exactly that. I didn’t make a bucket list per se, but I didn’t have to. One stunning diagnosis and I instantly had my priorities in order, along with the motivation to “make every day count.” But as the days stretched on into months and then years, a tentative confidence began to grow, and it whispered, “You know, you might live, did you ever think of that? You have decent odds of beating this thing.” Yeah…better wash the underwear.

But next week I will make my pilgrimage to the Mayo Clinic for my 9 month check. Next week it gets real again. It always does when I go there. Scans, blood work, billions of pictures of my eye (I don’t think I’m exaggerating, it really is excessive), and then the wait. Sitting in the ugliest waiting room (again, probably not an exaggeration), with my headphones in to drown out the depressing music (see also: my previous rants about Nadia’s Theme), as I wait to see my oncologist and hear my results. My palms sweat more than hands should, and I get this weird feeling in my stomach that kind of feels like falling. My heart lurches every time a nurse comes out to call for a patient. And in those moments, the confident voice that has been whispering for the last 9 months is silent. Because what if I come in to this too cocky? No, there is a necessary fear and trembling with which I approach these days. Just in case.

Scanxiety.

I wish I had thought of that word, because it’s brilliant. It is exactly what it sounds like – although, for me it only applies to the actual day at Mayo. The two weeks or so before my appointments, I’m not so much anxious as I am freaking neurotic. But “MRI’m losing-my-mind” doesn’t have the same ring to it, so we’ll stick with scanxiety. My poor family. I am not fun to be around in the weeks before a Mayo visit. I know it, but I’m powerless to stop it. I actually was so distracted with some big events at the end of May and into June that I didn’t realize we were entering That Time. It finally dawned on me, sort of like for us ladies when we realize it’s a certain time of the month and go, “Ohhhhh, so THAT’S why I hate everyone right now.” My family knew all along, by the way.

So I’m looking forward to getting my Mayo day – and the ugly weeks before it – over with. And not. Because while fear-induced neurosis definitely isn’t healthy, neither is being so confident you have a million tomorrows that you neglect your today’s. It’s good to be a little scared. But not too scared.

The underwear can wait. Maybe that’s my new bumper sticker.

We all have things we want to do, things that get pushed aside because life happens. Because triage. But let’s pick one thing that we don’t want to get triage’d out of our days, and then fight for it. Mine is writing more. I’ve always been someone who works better with a deadline, but I don’t want to wait for a dire scan result to give me the ultimate deadline.

I promise to be timely with my next post, and I have high hopes that it will include a positive report from my Mayo day. I know I haven’t been great about health updates recently, but quite frankly, it’s my least favorite thing to write about. That said, I did realize that I neglected to share with you the biggest news of my last Mayo visit: my oncologist looks like Einstein now. Totally true. His hair has gone white and he let it grow out; that, plus the mustache and it’s full-on Einstein. I’m sorry I missed telling you that, because it was awesome. I will try to be better about communicating these important things in the future, I promise. In the meantime, since I’ve finished this, there is the matter of some laundry…

Happy Friday, everyone. Go carpe that diem!

Now what? To the parents sending kids to college, Part 2

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Hey there, friends! Oh, this week has been a doozy for some of you, hasn’t it? I seriously wish I could hug all of you who just launched a child, I really do. And for those of you that I have seen, let me offer my sincere apologies if you’re not a hugger – I usually figure that out only after it’s too late. There’s nothing worse if you’re the hugging type than realizing mid-hug that the person you are enthusiastically embracing is not, in fact, someone who enjoys that sort of thing. But I digress… As promised, here’s Part 2 of the sending kiddos to college post: what helped me when my son went to school last year. And I know this is a horrible way to start an essay, because it creates absolutely no suspense, but I’m going to tell you straight off that we all got through the year just fine. Really. Everyone survived. It was actually a great year, once we all adapted to our new normal.

And that’s really the thing – adapting. Accepting that there’s a new normal in your household now that you’re a man (or woman) down, and giving yourself and your other family members time to adjust. Yes, time. For those of us who are of the more impatient persuasion, this is the most challenging part. We want to have this figured out NOW. We want things to be all better NOW. And you will indeed figure it out, and things will definitely be better, they just might have to be a little funky for a bit while you work through it. And that’s ok.

From my one-year-out vantage point, I can see a few things that helped me get through this transition time:

Technology is your friend.
Holy crap, I never loved technology more than when my son went to college. I’ve always viewed technology with a wary eye, because it’s weird and awkward to me and I stink at operating anything with buttons. But now? Oh, I am a huge fan. Between texting, FaceTime/Skype, Snapchat and whatever is next that I don’t know about yet, it has become nearly effortless for our kids at college to connect with us. Think about it: back in the Dark Ages when we were in school, if we wanted to let our parents know we were still alive and well, we had to write actual letters (and then find stamps and mail them), or get the phone when our roommate wasn’t using it and, if our roommate or others were in the room, have a very public conversation with our parents (remember when phones had cords? Yeah, me neither…). Now, with only a swipe of a finger across their smartphone, they can ask quick questions, send silly pictures or lament that the calculus test was, in fact, as impossible as they feared it would be.

Now, a few caveats to that: first of all, technology is a great way for them to get in touch with us. It is also, unfortunately, a spectacular way for us to bug the crap out of them. Be judicious. For the first few days of school (maybe it was a week, I can’t remember), I followed the advice of others and never texted or called my son – I only responded when he texted or called me. That was hard, friends. But I knew that just as we were adjusting to our new normal here, he was attempting to do the same there, and I wanted to let him figure out how often he needed to connect with us. I did remind him that if he went too long without contact, we would start to worry that he was dead, and since I have raised him to be just as sarcastic as his parents, I did get a few Snapchats throughout the year with the caption “See? Still alive, Mom.” I also particularly enjoyed the picture of the laundry machine in their dorm, with the caption, “The Tide Pod got stuck. Will it still work?” Yes, thanks in large part to the oh-so-confusing task of doing laundry, I heard from him very regularly in the first few months (I won’t get into the text asking how to wash sheets…in January…). Speaking of Snapchat and the like, my son and I had a rule about that: when he sent me a snap, I promised to never respond with a selfie. Yes, that is how Snapchat usually operates, but this simple rule assured him that he could open a snap from me in public without risking the potentially embarrassing picture of his mom making a goofy face. That was our thing. Talk with your kids and figure out what they want. For us, when he actually wanted to see us, we’d schedule a time to FaceTime together. He’d text us when he had a free moment and his roommate wasn’t around, and we’d all eagerly gather around my iPad. And let’s be honest here – it was probably our dogs that he wanted to see most, but we didn’t care. It was fun to see the college student in his natural habitat.

Understand that family dynamics will change.
My son’s not a large kid, but the Riley-sized hole in our family after he left was surprisingly wide. With time we adjusted, but it initially felt like a giant Jenga game where someone had removed a block right in the middle. And while we didn’t topple, our family structure did sway a little as we took stock of the change. I’m ashamed to admit that at first I was so focused on how his absence impacted me that I didn’t notice how tough it was on everyone else – until our daughter had a tough day. A reeeeally tough day. And I realized that when she’s stressed or upset, her big brother has always been the one who could help her the most. He is so good at diffusing her anger when she’s frustrated, consoling her when she’s hurt – and he can always make her laugh. She and I, however, are a little too alike for our own good sometimes. I am the proverbial gas can to her proverbial fire, and without Riley around we had a few flare ups that got out of hand. So we had to adjust. We had to figure out some new ways of relating to each other, and that wasn’t a bad thing. My daughter and I are closer now than we’ve ever been, and I’m certain it’s because we were forced to figure a few things out.

Get yourself a posse.
I met a woman last weekend in line for pizza (true story), and we instantly bonded the second she ruefully shared that she was preparing to send her twin sons to college. Having learned my lesson earlier, I resisted the urge to lunge forward and hug her (but oh how I wanted to! We are sisters now!). We talked at length about how this time is both exciting and heartbreaking for parents, and about the need for support, and she brought up a really good point: we have to actively seek it out now. When our kids are on sports teams or involved in extra-curricular activities, we automatically have a connection with other parents. “I’m really going to miss them,” she said quietly. And it’s true – sitting on sidelines, bleachers or auditorium seats next to other parents, we are unintentionally participating in a kind of support group. Granted, like the dad on my son’s hockey team who used to show up drunk and heckle the players, not all of these other parents are helpful, but they are in a similar place in life. And some of them become close friends. We can still have that now, but we’re going to have to be intentional about it.

When my son went to college last year, I leaned heavily on my girlfriends. I needed the validation of knowing that I wasn’t the only one who was struggling, and I clung to the reassurances from moms of older kids that it was absolutely going to be ok. It took a bit of vulnerability on my part – sometimes I had to be the first to admit that I was finding this whole thing challenging – but as soon as I dropped my guard, others did too. And if they didn’t, if they came at me with scolding or cute little sayings about birds nests, I simply knew that they weren’t the people I needed to be around right then. I know of several moms who connected with other parents from their kids’ sports teams and started meeting regularly – and by “meeting” I mean going out for happy hour – and they’re still getting together now that the kids are starting their sophomore year. It’s genius really, because when you’ve spent enough years suffering the elements on sidelines, you have earned the right to meet inside where it’s dry and comfortable and drink beverages, right? And if groups aren’t your thing, that’s cool. Find individuals with whom to connect. However you do it, get yourself a posse. Because we need each other.

Care packages are a win-win.
It’s not like I had nothing to occupy my time after he left. I wasn’t staring at the wall, thinking “Oh gee, whatever shall I do now?” No, life kept coming at me, and I was as busy as ever, but sometimes when I found myself particularly missing my son, I’d start putting together a care package. It didn’t take a huge amount of effort – I’d put a box out on the dining room table and just add things as I thought of them, until there was enough to send. Care packages are a win-win because it’s fun for us to think of things to include that will brighten our kid’s day, and it’s fun for them because, well, food. And don’t worry about getting it “right” – if they don’t like it, they get to be the hero of their dorm floor by sharing it. If you need suggestions, there are some crazy creative ideas on Pinterest (of course there are). I never did anything too elaborate, because I stink at all things craft-related, and I don’t think my son would have cared anyway. In addition to food, I always put in something funny and a personal, upbeat or encouraging note. I had no idea if they meant anything to him or not, until the end of the year when I came to pick him up and he hadn’t cleaned out his desk. I started opening drawers and emptying the contents into bins, when I came across a stash of every note I had written him during the year, all neatly tucked into an envelope. I looked over at him and he grinned sheepishly, “I liked your notes.”

Celebrate the good stuff.
Amidst all the tearful transitioning, it’s easy to lose sight of all the good that’s also going on. And while some of the best stuff is only visible at a distance, there are little bits that you observe or hear about along the way and go, “Yeah. That is most definitely cool.” New friends, new interests, new experiences – they’re all contributing to the grand experiment that is college, and helping shape them into the adult that they will be. From the mundane lessons like where to get their hair cut, to more important items like where to go when they get sick, every challenge and new experience brings with it an opportunity to grow or learn, even if the only thing they learn is “do NOT do that again.” And if you watch for it, you’ll get the joy of seeing your child grow more into themselves. Celebrate it when you see it, because it’s pretty freaking awesome.

They come back.
It’s easy to slip into the “they’re gone forever” mentality. True, it will never be exactly like it was, but they do come back. When they do, they will bring mountains of dirty laundry and eat all your food, and you will love it. Because they will also bring their new, collegiate, almost-adult selves with them, along with a newfound appreciation for everything “home.” A phrase that I never expected to hear from my son, ever: “This bathroom is so clean!” Yes, apparently a level of disgusting actually exists at which boys will notice filth. Who knew?

So let me tell you this again: you’re going to be ok. Really. As I’ve said before, it’s because you raised a person that you actually enjoy having around that you miss them right now. You’re not neurotic or weak or helicopter-y, you’re human. And humans sometimes have a rough time with change. Give yourself and your family the space, the time and the grace to work through it, and I promise, you will come out on the other side just fine. Maybe even better.