cancer

Perspective

/ Jen / 12 Comments

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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

5 years

/ Jen / 10 Comments

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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!

/ Jen / 4 Comments

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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.”

Tell me somethin’ good

/ Jen / 8 Comments

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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

/ Jen / 9 Comments

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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!

The Riddle

/ Jen / 9 Comments

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REALLY sorry I’ve let it go so long! Any of you on Facebook with me know that I’m fine, but for my non-Facebook friends, I’m sorry I left you hanging. I am indeed fine. Actually better than fine, but you’d never know that from my silence! Sorry ’bout that. I know I said in my last post that I had scans at Mayo coming up in December, and I fully intended to remind everyone as the day drew nearer, so that my prayer army could saddle up, but I kind of forgot about one thing: finals. Yep, as the parent of a college freshman I can totally say this is my first rodeo, and I’m still learning. And what I learned this time is that you simply do NOT schedule scans when your kid is in the middle of final exams. First of all, it’s just not nice to add worrying about Mom’s health to a list of stressors that includes things like calculus and chemistry. And second, what if the news was bad? We certainly couldn’t tell him in the middle of finals. But if he knew I had the appointments he would ask about the results. And I suck at lying. So we had no choice but to keep the Mayo trip on the down low. Lesson learned.

The day went great, by the way. My liver, lungs and blood all checked out splendidly, so the cancer is staying put in the eye for now (and hopefully forever). My oncologist was positively giddy at how well the Avastin injections are working, and for good reason – I was supposed to be pretty close to blind in that eye by now, and I am definitely NOT blind. It’s sketchy, and I would be in trouble if that was the only vision I had, but sketchy vision is way better than no vision. Plus, as luck (and symmetry) would have it, I have another eye. And that one works just peachy, so it’s all good. Barring any weird hemorrhages in the radiated eye, everything should stay like that from here on out, which is pretty sweet. And my oncologist didn’t give me any crap about my RA meds! Woo hoo! So he and my rheumatologist can go on disliking each other, but I don’t have to get in the middle of it. I like that. A lot. I don’t have to go back to Mayo for 9 months now (and before you say it, I already checked – no final exams then).

In December and January I saw my rheumatologist and orthopedist, and everything is going well there too. The one disappointing thing from my one year post-op appointment (hip replacement for anyone who forgot. That includes me, because I mostly forget about my bionic-ness), is that my orthopedist’s idea of “light running” is even lighter than I imagined. Like taking 9 months to work up to 3 miles, and it all has to be on a treadmill – that kind of “light.” I have to see him again in a year and at that point he will decide if I get to ever run outside. So I haven’t even started the treadmill running, because what’s the point? If I’m going to be inside on a machine going nowhere, I can ride a bike to nowhere or climb stairs to nowhere and still get…nowhere. The point of running (to me, anyway) is enjoying fresh air, scenery, the company of others, and maybe racing (especially if there’s a fun t-shirt and/or cold beer at the end). So that didn’t work out like I had hoped. I knew it was a strong possibility though, so while I’m bummed, I’m not surprised. The hardware is looking good on the x-rays, and things are working so well that I mostly forget I have it. I do have a leg length discrepancy from the new parts, and it’s made my pelvis a little wonky, but the doctor didn’t seem concerned about it. So I’m not concerned either.

I’m still working with a nutritionist, trying to find out which foods make me feel the best, which ones tick off my RA and how to best fight cancer through what I eat. The key is to boot the things that harm, without going overboard. As I explained to my internist, I’d hate to give up dairy, then later find out I’m dying and have my first thought be, “I could have had cheese!!”

So that’s the scoop on my health – pretty doggone stable, and I like it that way. It’s boring, but it’s the good kind of boring. And speaking of boring, allow me to explain the picture at the top of this post (no, it’s not the photographic equivalent of a butt dial, I actually meant to take the picture): it’s the waiting room floor at my oncologist’s office at Mayo. I hate it, I really do. And it’s all I get to look at when I’m there, because the very first thing they do when I get there is turbo dilate both of my eyes. So no texting, checking emails, reading magazines or books. Just staring at the floor for hours (and I’m not kidding about the hours thing – this last time I waited for 2 hours to see my doctor. Super fun.). I think what bugs me the most about the floor, aside from the incredibly drab colors, is the fact that there is no discernible pattern. I’m a Type A, organized, child-of-an-engineer kind of person. I like patterns. I like knowing what’s coming. And this room, this cramped space with the ode to brown decor and stale air, is where I would most like to know what’s coming. I arrive at the Mayo Clinic hours ahead, sometimes even the day before, and I go through test after test, until I finally arrive at this place, where we wait to hear news that will be either exhilarating or devastating. And while we wait, I stare at this stupid, senseless floor with no pattern. It occurred to me this last visit that having cancer is a lot like looking at this floor, like trying to find a predictable sequence where none exists. I can read up on my cancer, and I can research treatments and survival percentages. I can eat perfectly, sleep enough, exercise regularly, and do everything in my power to increase my odds of beating it, but I can never predict what it will do. I can’t tell you why I even got it in the first place, either. I think that’s why I don’t like the floor. It has no pattern.

And I think that’s true of a lot in life, not just cancer. For those of us who yearn for the stability of predictability, when life throws us a curve we’re shaken. Sometimes we’re shaken in a good way, nudged out of our comfortable, protected space and into a place of growth and possibility. And we are ultimately glad to be in this new place, even if it was rough getting there. Sometimes though, we flail and gasp for air, desperately grasping for anything that feels solid and safe. And predictable.

In December, on my two-year “cancerversary,” two teenage boys in our town were killed in a car accident. On a day when my family and I were celebrating that I was alive, two families and an entire community were trying desperately to wrap their heads around the unthinkable. Days later, I went to Mayo for my scans, terrified as always, but also bearing the sobering thought that I had already lived longer than those boys. It made no sense. It was out of sequence.

When the unknown is merely theoretical, we can give it poetic names, like “embracing the mystery.” And that’s great when the mystery involves only lovely things. Like, will we have cake or cupcakes? Wine or cocktails? But when the unknown could involve heartbreak, loss and grief? That’s harder. Faced with that, who wouldn’t want to turn to the last page of the book to see how it ends? Ok, ok, I know people who wouldn’t. But I’m not one of them. I like knowing things ahead, so I can prepare myself. In her book, Daring Greatly, Brené Brown calls it “foreboding joy.” And it’s not a good thing. If we live our lives preparing for the worst, we prevent ourselves from enjoying the best.

Of course, if we always knew what would happen, we wouldn’t need faith. We wouldn’t need one another. We wouldn’t need a lot of the things that ultimately make our lives meaningful. So we “embrace the mystery,” we “wrestle with the unknown,” we reach for one another, dare to try new things, take chances…and we don’t wait to find out that we’re dying to live.

So I’m trying to change how I view that awful, beige floor. Sure it’s ugly, but it presents a challenge, a helpful exercise if I’m willing to look at it that way. As with life, when I survey its patternless expanse, I can allow myself to get frustrated at my inability to make sense of it. Or, I can choose to stop trying to figure out the puzzle and instead make the most of my time in it.

I had a friend who passed away from colorectal cancer years ago, and I remember how she and her husband loved the song “The Riddle” by Five for Fighting. At the time I really didn’t understand the appeal of the song, but it makes better sense now. I read an article about the songwriter, and it told of how he took 18 months and over 100 drafts to write the song – a song that started out as a meditation on the meaning of life, but ended up being about his relationship with his young son. And that is about as close to an answer as I think we’re going to get for now. Relationships. With our Creator, and with each other. Spending our time well while we’re here.

“There are secrets that we still have left to find,
There have been mysteries from the beginning of time,
There are answers we’re not wise enough to see,
He said, ‘You’re looking for a clue? I love you free’…

Here’s a riddle for you, find the answer:
There’s a reason for the world,
You and I”

So I’m trying to make my peace with the patternless floor.

It’s still ugly though.

College

/ Jen / 2 Comments

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Hello! You thought I’d forgotten about you, didn’t you? Not a chance. Not. A. Chance. I love, love, love that I have this awesome army of support, people who care about me and want to stay current on the status of my health circus. I, for one, am kind of tired of it. Really. NOT that I’m asking for more excitement (that is actually my internist’s stated goal: “No new diagnoses.” I think it’s a good goal.) I just get tired of talking about it sometimes, because there are other things that are far more interesting, that’s all. So, let’s get the updates out of the way quickly, and then talk about other things, ok? Ok.

  1. Cancer stuff: next scans at Mayo will be in December. Getting all of it set up took the usual umpteen phone calls and arguments, but I’ve come to expect that now. I wouldn’t be surprised if very soon they put a note on my chart: “Just give her what she wants, it’s easier.” Actually they probably already have a note on there, it’s just very likely not repeatable. I’m still getting the Avastin injections, but they’ve been stretched out to every 8 weeks now, which is lovely (the 8 weeks in between, that is. Shots in the eye are not).
  2. Rheumatoid arthritis stuff: my rheumy upped my meds, since they weren’t working. I am now taking so many pills that I have an app on my phone to remind me to take them, which my family adores. If my phone ever goes for a swim in the toilet, I won’t wonder why. But it’s effective, and the meds are working relatively well, so we’ll call it good for now.
  3. Hip stuff: I graduated from physical therapy about a month ago, and the hip feels awesome. I’ll find out at my one year appointment in January if I get to run again – fingers crossed! (I was going to try to be cute and say legs crossed, but that usually means something else…)
  4. Nutrition stuff: Wait, what? Yeah, the newest addition to Team Jen is a nutritionist. We’re just trying to figure out how to best manage my RA, since my oncologist doesn’t really like me taking the heavy duty meds for that, and also trying to eat like someone who doesn’t want their cancer to spread. So as part of that, I’m currently in the later stages of an elimination diet to figure out my food intolerances. Not fun, I tell you, but it’s for a good cause (that’s what I kept telling myself anyway). But seriously, “elimination diet?” Individually those words are awful enough. Put them together and it’s a recipe for severe crabbiness. For real. I went to Chicago and didn’t have a single slice of deep dish pizza. NOT ONE SLICE, PEOPLE. If you know me, you can imagine, and I’m sorry to put that mental picture in your head. You probably can’t unsee that.

So what else has happened since my last post? Hmmmm…well, we took our oldest to college for his freshman year.

Oh yes, that.

It was very hard. And I’ve been trying to figure out why I haven’t been able to write about it here. I thought initially that maybe I was just being chicken and didn’t want to feel sad like that again. To write about it is to crawl back into it, to wrap it around my shoulders and feel its weight. Or maybe, it’s the fear of coming off as shallow or overdramatic. I mean, this is a blog that started as a Caringbridge site, after I was diagnosed with cancer, for crying out loud. I could end up dying from the stupid thing, and I’m going to whine about my kid leaving for college? Seems a little warped. And embarrassing really, because with all the serious problems in the world, it seems like a petty thing to complain about. Or maybe I was hesitant because I am acutely aware of how fortunate I am to have a kid who is healthy and well-adjusted enough to leave me and go off to school. All valid possibilities, but in the end I think what’s been stopping me from writing about Riley leaving for college is simply that I felt like I needed to learn some kind of lesson from it first. A sort of moral to the story. That is, after all, how writers tend to think of stories: “What’s the point?” And it’s definitely the way I’ve processed just about every event in my life: “What have I learned here?”

So what have I learned here? That’s the problem, I just don’t know. I’ve learned that it is infinitely harder than I thought it would be (and this is coming from a woman who cried her way through her son’s senior year of high school). I’ve learned that dropping your kid off in a strange place and then getting into your car and driving away feels unnatural. So does setting the table for three people. And that without a teenage boy around, food actually goes bad in your refrigerator.

I’ve also learned that I’m not alone in this experience. In those weeks surrounding move in, we somehow cosmically found each other, these other moms and I. It’s hard to describe, but there’s just a sadness, a weary smile or slump of shoulders that seems to be an unspoken code word for “Yeah, I’m there too.” I have hugged more women I don’t know in the last few months than I have probably ever. Hugs are our secret handshake, entrance to the club of “You too? I totally thought I was messing up royally because I’m so sad about something I should be happy about.” Ok, long club name. Too long, so scratch that. But the overwhelming relief of discovering other women going through the same emotions is huge. The mom of one of Riley’s best friends called me a few days after she dropped her son off, and I could tell she was testing the waters: “So, how did move in go for you guys…?” She asked casually. I let her off the hook immediately, “It was one of the hardest things I’ve ever done, to be honest.” As I went on to tell her how I was struggling, I almost felt my hair move from the force of her exhale over the phone. “Oh good! I mean, it’s not good, but I thought something was wrong with me. I’m so glad you’re having a hard time too.” After countless variations on that conversation with multiple other moms (and a lot of hugging), I am finally reasonably certain that it doesn’t matter where we fall on the mom-o-meter, or where our kids fall on the kid-o-meter; taking your kid to college for the first time is just hard. Period.

I remember when we dropped Riley off for his first day of preschool. As he leapt out of the car and gave us a quick wave before bounding exuberantly toward the school entrance, I started to cry (you’re sensing a theme here now, aren’t you?). Rich looked at me like any husband does when his wife randomly bursts into tears, with a mix of amusement and fear. “It’s just preschool, Jen.” “I know,” I shot back, “But I feel like we just set him on a moving walkway. It’s started. And we can’t slow it down or pause it.” Rich nodded soberly and kept driving, because that is what you do when your wife has completely lost her mind. That, and stop for a latte, which he also did. He’s a smart man.

Fast forward 15 years or so, and the moving walkway has indeed failed to stop or slow. After we got him all moved into his dorm and had made the requisite Target run for things we had forgotten and/or didn’t realize he needed, we took him out for dinner and then finally dropped him off back at his dorm. We said our goodbyes (and by the grace of God I mostly managed to hold it together), and Rich and I got into the car. As I watched Riley walk toward the dorm entrance, I couldn’t help but see that joyous preschooler, oh-so-ready to begin the next, big thing. And that damned, invisible moving walkway, carrying him toward it.

And here’s the most maddening thing about all of this: it’s good. I can’t indulge in even the teensiest sense of tragedy, because what’s happening is, in fact, wonderful. My kid gets to go to college. He worked hard and got into an excellent school that will prepare him for a bright future. And he’s doing great, by the way. Still trying to figure out how to simultaneously be an engineering major and have a life, and still texting me with questions every time he does laundry, but he’s learning and growing. He’s figuring out who he is and how he is, what matters and what doesn’t. He’s well on his way to becoming his adult self, and he is precisely where he needs to be to make that happen.

But it’s hard having him gone, I’m just going to say it. Technology is a wonderful thing, and it is largely responsible for the fact that I’m (outwardly) sane. But I miss having him around. My friend Sara perhaps said it best: “Really? So this is our reward for raising good kids? They leave us?” She went on to eloquently describe the bittersweet aspects of sending a child to college, but I, of course, appreciated the sass more. We’ll save eloquent for another post; today, I’m just being real. And I really miss my kid. No technology can replace just having him here, drumming on everything, making jokes, playing with the dogs, bugging his sister, scrounging though the fridge with a mildly frustrated, “What can I have to eat? I’ve had everything!”

Don’t get me wrong, I haven’t been reduced to sitting in a corner in the fetal position, rocking back and forth and sucking my thumb (that was only the first two weeks, silly). Rich, Tessa and I have settled into a new rhythm now, just the three of us. And Riley is very good about staying in touch, so it’s not like he’s out of our lives. It’s just different.

Maybe that’s what I’ve learned: that sometimes the good changes can be hard too. We work so diligently at making the best of crappy situations, perhaps it’s surprising when we find ourselves challenged by something that is actually good.

And it is good, I know that. I’m grateful every day for both of my kids – the one I have to text, and the one I get to annoy in person. Missing people is the price we pay for loving them so deeply. I know I wouldn’t love my kids any less in order to be spared the pain of them leaving, but that doesn’t make the process any easier. Change can be difficult, even when it’s for a good reason.

As always, thanks for joining me on the journey. It’s nice to have company. Onward and upward, friends.

(And On, Wisconsin! 😉)

Signs

/ Jen / 5 Comments

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So here’s the rundown on my Mayo trip last week. Sorry it took me so long to post, but the treadmill of life has been whizzing along at a brisk clip, and I had to once again return from Mayo and jump back on right away. No time for quiet contemplation (will that ever happen??). I did get to sing at Easter services and even lead the Call to Celebration – pretty powerful stuff to be talking about resurrection when you’re feeling reborn yourself. And so cool to celebrate with people who have been faithfully, tirelessly praying for me and encouraging me throughout all this.

So back to Mayo… First off, this picture is evidence, I believe, that someone at Mayo has a sense of humor – it’s the sign outside the room where I had my IV put in before my MRI. But then I asked if I was getting a pedicure or neck rub in addition to my IV, and the nurse acted very confused, so obviously not everyone is in on the joke. In fact, he proceeded to get extremely serious about my veins (to be fair, they are unusually slippery suckers), going so far as to use what looked like a stud finder to locate his target. He still had to stick me twice. In the “relax room.”

But I have to say I’m getting better at MRI’s with each one I do, and now I’m not panicky at all. Just a wee bit nervous. As long as I have my magic eye mask, I’m good to go. And music – a lot of MRI places give you headphones so you can listen to music while you’re in the tube, but not Mayo. At least not for their liver MRI’s, probably because you have to listen to directions about when to hold your breath and when to breathe “normally.” Like there’s normal breathing when you’re stuffed in a tube. So a few times back when I told my best friend Karen that I was music-less, she resolved to fix that. Since then, right before every MRI, I receive a text from her containing the lyrics to a song pretty much designed to drive me crazy in the tube. I usually get the text while I’m in the waiting room, and then gasp and burst out laughing, thereby confirming all of the other patients’ suspicions that I’m totally nuts. It does get me a large dose of personal space however, so there’s that. Anyway, I like you all too much to tell you what this last song selection was. Suffice it to say, part of the chorus doesn’t even involve real words, and it took days for me to purge it from my mind (oh and Karen, my family thanks you for that as well, because you know I sang it out loud every time it returned to my brain. They send their love).

Among other things that made me laugh during my time at Mayo (you had no idea scans were so hilarious, did you?) was the introduction of a new species to the ophthalmology waiting room – a child. Yes, a foreign species indeed, as I am usually the youngest patient in the room by a good 20-30 years. It was refreshing and entertaining, to say the least, but no more so than when the lad took out a laser pointer and began playing with it. I had to leave for a moment so I could redo some pictures that the tech in training didn’t get quite right – and the only thing more fun than looking directly into an industrial strength floodlight while a tech tells you not to blink is doing it twice – but when I staggered, half-blind back to the waiting area, I found Rich sitting with his lips firmly pursed together, trying not to laugh. Apparently, the boy continued to play with the laser pointer after I left. As he directed it around the walls, ceiling and floor, it caught the eye of a woman who, after following the dot of light studiously, pointed it out to her husband, who proceeded to also track the mysterious red dot. One by one, anyone who wasn’t too dilated to see it joined the audience, mesmerized by the constantly moving orb, never seeing that the source was the little boy. The end result was a room full of white heads moving in perfect unison as they followed the dot – much like those YouTube videos of cats doing the same. And to think I missed it. Dang.

The levity was appreciated, as the time at the end of the day in the ophthalmology waiting area is always the most fear-filled time. Unlike the earlier parts of the day where we move from building to building for various tests, this period of 3-4 hours involves sitting in a special (and by special I mean ugly) waiting area, and periodically being called for eye tests. Test and wait, test and wait, test and wait… And with each test we count down until the tests are over and we see the doctor for the results. Oh, and when we finally see the doctor it’s not The doctor – it’s one of his fellows. The fellows do a complete eye exam, and pour over charts, pictures and things on the computer screen written in such a small font that even Rich with his non-dilated eyes can’t read it…and they tell us nothing. We are dying inside, and they are looking at all the results that will determine my fate… in total silence. It’s horrible. I sit and shake and sweat, even though my hands are ice cold, and they say nothing. Until this last time. I must admit I found myself initially doubting that this particular fellow was even old enough to be a doctor (wow, am I that old? Doctors are looking young to me?), but this angel walked in, sat down, looked me in the eye and pronounced, “your scans all look good, let’s just get that out of the way.” And she smiled the sweetest smile, adding, “I know that’s what you’re waiting for.” Um, YEAH! Oh, sweet relief! So then she did all the things the fellows usually do, but I didn’t care how long it took, because I knew my results. Ok sure, I didn’t know anything about my eye, but the cancer hadn’t spread, so who cared? Not me. “Text everyone” I mouthed to Rich, and he began to happily tap on his phone while the the doctor completed the exam. Seriously, I can’t begin to describe the relief.

So I wasn’t worried at all and could fully enjoy it when my oncologist sailed into the room, smiling broadly. “You’re doing so well!” He exalted. The only glitch, if you could call it that, is that my tumor is beginning to bleed around the edges – totally normal for a shrinking tumor. Yes, you heard that right folks, the tumor is continuing to shrink! So that’s good. But the bleeding means I have to start Avastin injections so it doesn’t hemorrhage and cause me to lose all the sight in that eye (because I do still have some, and it would be nice to keep what I have). That’s not so great, but it is what it is. Did I mention the injections are given directly into the eyeball? Yes, commence squeamish writhing. I’m sure they’ll numb me up, but it’s the gross out factor that has me concerned. I’ve tried to look up the procedure so I can know what to expect, but I end up awash in heebie jeebies every time, so I’m done researching. Like I’ve said, I’m tough about physical pain, but I’m a total ninny when I’m grossed out.

Overall though, the appointment was going swimmingly, as we all celebrated my clear scans and shrinking tumor. Then I wrecked it. “So, about my RA meds….” I said innocently enough, and that was it. He had indeed received the note from my rheumatologist about going halfsies on the plaquenil (like the oncologist had suggested last time) and adding another drug, with his permission. He had received it, but hadn’t read it apparently, because his assistant had to point it out to him. For whatever reason, he gets angrier about the plaquenil each time we talk about it, and this time he was massively ticked. He started going off about potential retinal toxicity – “and you’ve only got one good eye!” So here I thought he was going to be pleased that the rheumy listened to him and cut my dose in half, and instead he’s on a tirade about why I shouldn’t be on it all. “So what about the sulfasalazine that my rheumatologist is recommending in addition to it? Can we do that?” I asked weakly. “Fine, fine,” he grumbled, “But I hate that plaquenil. You can do 200 mg one day, then 100 mg the next and keep alternating. But I don’t like it.” Ok… “Soooo if you don’t want me on the plaquenil, what else can I take?” I pressed. He threw his hands up in exasperation, “Ask your rheumatologist! That’s his job!” Oh ugh. Seriously, just ugh. I totally understand where each of them is coming from though. Dr. P. wants to keep me alive and save my vision. Dr. W. wants to keep me from ending up disabled. I get it. But it’s tough being in between the two, especially when you don’t have a medical degree. Dr. P. sighed, rubbed his face and wearily sat down, “I just wanted to be happy about your case,” he said softly, “We had good news and I just wanted to be happy.” He’s a good guy, he really is. And when you treat a cancer that kills half the people that get it, I’m sure you have to deal with plenty of bad news. So I didn’t push it any further – and really, there wasn’t anything to push. The whole 200/100 alternating dose thing was going to be a pain, but whatever. I’d talk to my rheumy about it later. For now, there was a triumphant blog post to write and a celebratory martini to enjoy.

I did call my rheumy’s office the next day, and just heard back that we’re ditching the plaquenil all together and trying to go with just sulfasalazine. We’ll see how that all goes. In the meantime, I’m scheduled to start the eye injections on the 22nd. Hopefully I will be reporting back that it was no big deal, and that I’m super excited for my next one.

So that’s the scoop from last week’s scans. I’m off now to make one last college visit with Riley – well two visits actually, just on back to back days, so it’s really just one trip. The poor kid is having a terrible time deciding on a school, to the point that when one of our friends asked him what he’d be looking for this weekend he deadpanned back, “A sign.” He’ll figure it out, I’m not worried, and all the schools are awesome, so he really can’t screw this up. But I have to say, I’m just sorry to see these mother-son trips end. They’ve been such a special time for us together as he prepares to take this huge leap to the next chapter of his life. I’m excited for him, because he is so ready and he’s going to do great, but I’m sad for me. Because I’m going to miss him so much it hurts just thinking about it. A bittersweet time, to be sure. And in the back of my heart always resides an intense gratitude that I get to be here for all this.

Life really is good. Tough at times, absolutely, but most definitely good.

Off now to look for signs…

Martini time!

/ Jen / 11 Comments

imageWell you can’t say you weren’t warned about the brevity of this post. My eyes are indeed still blurry, but my scans are CLEAR! I’ll elaborate in another post, but the bottom line is my liver and lungs look good, and my tumor is shrinking. It’s also bleeding, so I will now be getting Avastin injections in my eye to prevent a major hemorrhage that would leave me totally blind in that eye. Yes, I’m grossed out. No, I’m not really thinking about that right now. Because, um, did I mention that my scans are TOTALLY CLEAR? Because they are. In case you missed that. Oh, and my oncologist and my rheumatologist completely hate each other, but I don’t care right now. Because I just renewed the lease on this body, and I am pumped. Shoot, now I’m going to have to lose that vacation weight…

I wish I could explain it or describe it, because it was beyond amazing, but I absolutely felt your prayers and thoughts today. I am so humbled and grateful, and “thank you” doesn’t seem quite adequate, but it will have to do until I think of a better way to express it. Thank you. Thank you for coming on this journey with me, for lifting me up, for supporting my family, for loving us and encouraging us. Thank you for your endurance and your perseverance. Thank you for being awesome. Because you are.

Now if you’ll excuse me, it’s martini time…

Big Things

/ Jen / 11 Comments

“Well we pretty much ate Oahu.”

My son’s observation as we were leaving Hawaii Sunday night isn’t much of an exaggeration. We really did sample everything we could (except Spam. Because that’s just wrong. And it’s made here anyway), and while we’re all coming home a little heavier, our spirits are most definitely lighter. It was just so exquisitely beautiful there, and so relaxing to simply be together as we enjoyed everything. And I can honestly say that I didn’t have any sleepless nights worrying about my upcoming scans. Seriously. I think we need to go to Hawaii before all my Mayo trips from now on.

Speaking of which, I’m at Mayo now. Did my blood work today, then we start bright and early with the MRI and chest X-ray tomorrow morning, followed by all the eye exams, pictures and ultrasound in the afternoon. And finally, the moment of truth with the oncologist at the end of the day. If all goes well we’ll be home in the early evening, and I will be posting very good news here sometime tomorrow night. I have rehearsal for our church’s Easter services as soon as I get back, so don’t worry if you don’t hear from me right away. And it’ll probably be brief – something along the lines of, “My eyes are still blurry, but my scans are clear! Having a celebratory martini!” Or something like that.

In the meantime, I thought I’d share one of my observations from my last Mayo day back in September. I never wrote it down, but I found myself thinking about it at length on the plane ride back from Hawaii. And I wonder whose stories I will cross paths with tomorrow.

Everywhere I go at Mayo, I’m surrounded by people going through Big Things. Most of the time I can only study their faces and body language and wonder what their story is, but on a few rare occasions I’ll learn a little about what they’re going through. The couple with the newborn baby that we met in line at the coffee shop, smiling and almost giddy, hardly able to even believe what they were telling us: that she had received a liver transplant only a year or so before, and then got pregnant and gave birth to a healthy baby. I imagine that after so many desperate, awful visits to Mayo before her transplant, this routine check up felt downright triumphant. We ooh’d and ahh’d over their sweet baby, and allowed ourselves to share in their joy. Because for the most part, we don’t see a lot of joy at Mayo. We haven’t seen a lot of outright grief or despair either. Mostly it’s just variations on grim expressions, set jaws and contained emotions. And nervousness. Lots of that. And as I said, most of the time I can only wonder what brings them here, but I know that most likely it is a Big Thing. As I was waiting for my MRI last time, I found myself sitting with another woman about my age. It was the secondary waiting area, so we were prepped and in our gowns. I noticed that, like me, she was nervously fidgeting while trying very hard to not look at her IV, and when she cracked a joke after one of the nurses left, I knew I’d found a buddy. We began to exchange humorous comments about this and that, laughing nervously together. She told me they were running about a half hour behind, so we came up with ideas for activities all of us could do while we waited – a hospital gown fashion show, a dance off – we thought we were hilarious. We never asked each other why we were having MRI’s, but it was understood that keeping the mood light was a good thing. The others in the waiting room, if they didn’t find us hysterical, at least tolerated us. We were probably a good distraction. And then a woman entered with what looked like her mom, which was odd because no one else had their significant person with them. The woman looked like she was in her late twenties or early thirties, and she went over to a chair and just stood there and stared at it. Her mom sat down in the chair next to it. “Come on, sit down, it won’t be that long” she beckoned to her daughter. “Actually, they’re running about a half hour behind,” my comedic partner piped up, “But it’s ok, we’ve found some fun things to do.” Much to our disappointment, neither the woman nor her mother seemed excited or amused by the offer. In fact, the woman got extremely agitated and began to pace. “I can’t do that. I can’t!” She repeated as she paced. I scowled. Well she was no fun at all. And why couldn’t she wait? What, did she think she was better than all of us? Please. We all had to wait, suck it up. She turned tearfully to her mom, “I can’t wait,” she said again. “You have to wait,” the mom calmly responded. The woman paced a few more times, then announced “I’m going to the bathroom,” and marched out. “It’s just around the corner,” the mom called sternly after her, “don’t go any farther than that.” Silence. “Flight risk?” my buddy quipped. The mom wearily turned to us and explained that two years ago doctors had told her daughter that they had done all they could do and that she should go home and enjoy her children. She had already lasted longer than anyone expected, but still… she was young… and her kids were young. This MRI was most likely going to tell them that the end was coming soon. We sat in stunned silence as we listened. No wonder she couldn’t wait. My comedic partner bowed her head and whispered exactly what I was thinking, “I wish I could give her my spot so she wouldn’t have to wait.”

Everyone at Mayo has a story. And really, when you think about it, everyone everywhere else has a story too. The woman in Target, the guy at the car wash, the kid at the mall – maybe they’re not all facing a terminal illness, but any one of them could be dealing with a Big Thing. I wonder how quick I am to judge sometimes, just like I did in that MRI waiting room, and I wonder how things would be different if we all judged slower and loved quicker.

And really, with the exception of picking up hitchhikers holding chainsaws, you can’t go wrong by being nice.

Looking forward to sharing good news with you all tomorrow night. Thanks so much for all the love and support you continue to shower upon my family and me. Your prayers, positive vibes and messages sustain us and lift us up in ways we can’t fully express. We are blessed, and we are grateful.