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!

The Riddle

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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

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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

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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…

Big Things

“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.

Surgery tomorrow

Let me just say that I had grand ideas about writing this post tomorrow morning, leisurely sitting at my kitchen table, sun streaming through the windows, tea in hand. Since my surgery wasn’t scheduled till 1:30, I’d have time once the kids were off to school to finish packing, enjoy my clear liquids and thoughtfully write my blog post.

And then the surgeon’s assistant called at dinner time tonight to inform me that my surgery had been pushed up to 9:30 tomorrow morning. Yup. That’s a 6:45 report-for-duty time.

So I am instead running around like a total nut job, trying to finish everything on my rather ambitious to-do list. And really, at this late hour what’s it’s turning into is an exercise in moving most of the items on that list to a new one titled “After.” After? When is after? I don’t know, but at this point I’ve managed to rationalize why quite a lot of items belong on that list instead.

So anyway, the hip surgery…With Christmas and the Disney trip and other stuff, I just haven’t had any time to get worked up about it. Probably a good thing, really. Having done this before, I’m more relaxed in some ways. For instance, I don’t think I’m going to be as nervous about the surgery itself. With the last hip dealio, plus the 2 eye surgeries, I’m starting to get used to the drill. And, my friend Diane works at the hospital and is coordinating my anesthesia team, so it’s cool knowing ahead that I’ll have awesome folks in the OR with me – my anesthesia posse, if you will: Gary, Jen, Lora and Karen – my new BFF’s. Speaking of anesthesia, it only took me calling the Mayo Clinic every other week for two months to get a copy of my anesthesia records from my surgeries there. I am totally serious. But it was worth it, because Mayo seems to have solved the nausea after anesthesia riddle. They call it “The Triple” and I swear, it’s magic. No post-surgery barfing is a glorious, wonderful thing. But oh boy, you’d think I’d asked for the Colonel’s secret blend of eleven herbs and spices or something. It’s all good now though, because I have the recipe and I passed it along to Diane, who will hand it off to my new best friend, Gary the anesthesiologist. Good to go.

Of course, knowing what to expect also has its drawbacks. I remember very clearly how not fun the first week after surgery was. The level of helplessness is off the charts, and totally stressful for those of us who are very accustomed to self-sufficiency. I’m also not looking forward to the dreaded “no bending more than 90 degrees” rule. It lasts for 6 weeks and is basically movement jail. But I have my assistive devices all laid out and ready, and I’m going to just take a deep breath and keep reminding myself that it’s 6 weeks, not 6 months. Suck it up, cookie.

The surgery could be really quick and smooth, or it could be more complicated, depending on what they find when they get in there. If I get to keep my cup (the hip socket liner that’s already in there), and there’s no metal debris or funky stuff to clean up, this could be a way easier surgery than my first one. A lot of the pain and swelling and stuff from the first surgery came from the fact that they had to dislocate my hip – and apparently had a very difficult time doing so – and they won’t be doing that this time, since I’m getting a traditional hip replacement (read: they’ll cut off the top of my femur. Yuck, I know, but no dislocation necessary).

I’ll try to get a quick blog post up tomorrow if I can, just to (hopefully) share the good news that my surgery was successful, devoid of surprises and thoroughly boring and unremarkable.

I’ve had a few people ask about visitors. Yes, I would love visitors. I absolutely adore having people come see me in the hospital. That said, last time I fell asleep on every last person who visited. No exceptions. So, if I end up on the same cocktail of painkillers that I was on last time, you can count on me falling asleep mid-sentence if you visit. Just promise me that if it’s funny and you put it on YouTube, I get a cut when you get rich and famous. I’ll be at Abbott Northwestern Hospital if you want to give it a try. Just text me or Rich first so we can tell you if it’s a good time (oh who am I kidding – text Rich and he’ll wake me up and ask me, that’s what’s really going to happen). I’ll also be thrilled to have visitors once I’m home, so remember that if you’re bored next week.

I still have a few things left to do that I was unable to rationalize putting off – things like packing. You know you’re having old person surgery when the packing list the hospital sends you includes things like denture cleaner. Seriously. It’s funny watching nurses’ faces when they come in my room, totally not expecting to see a 44 year old. So I guess that’s a silver lining of sorts – I feel decidedly youthful. Well, until they have me using a walker. Then, not so much.

Thanks so much for all the well wishes and prayers! It’s been uplifting reading all the texts and Facebook messages. Prayers appreciated for tomorrow – for Dr. Anseth, my anesthesia team and especially my family; and for an easy, boring surgery with no drama or extra excitement.

And now to the rest of that to-do list…