rheumatoid arthritis

A Good Sweat

/ Jen / 13 Comments

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

My body: Everything hurts.

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

Body: Nope. Pretty sure we’re dying.

Brain: We are not.

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

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

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

Brain: No, we’re going to work out.

Body: But it hurts to move!

Brain: We’re leaving now.

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

Brain: Because it helps.

Body: WHY DO YOU HATE ME?

Brain: I don’t hate you.

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

 

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

And speaking of sweat…

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

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

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

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

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

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

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

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

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

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! 😉)

Grace > karma

/ Jen / 6 Comments

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How not to run a blog: apologize for taking so long to post and then assure your readers that you will try to write more often…and then take longer than ever to write another post. Yep, I’m not going to be winning any blogger of the year awards any time soon. Totally fine by me, but my sincere apologies to anyone who was wondering what happened to me.

What happened to me? Well, there’s the picture at the top of the post, for starters. That happened. Graduation. An absolutely wonderful, crazy whirlwind of a week, but I think I did a decent job of making good on my intention to savor every bit of it. So many people I love, coming together to celebrate and love on my kid…I still sigh audibly when I think of it.

Physically, my rheumatoid arthritis was crappy during all of it, so that was a bummer, but I was too busy to take much notice. And I knew I could take the prednisone that I keep handy for flares, but that stuff, while amazingly effective, does make me a wee bit crabby. Ok, a lot crabby. And this was just not the best time for Crabby Jen to be appearing in public. So I pushed through it and things were fine. Once the dust settled, so did my symptoms, so I didn’t have to hit the dreaded ‘roids after all. And my family breathed an enormous, collective sigh of relief. Cause it’s not a ton of fun when Crabby Jen is running the joint.

I have a rheumatologist appointment in August, and we’ll certainly be chatting about my meds then. I’m still not loving the ones I’m on, mostly because they don’t seem to be working as well as the previous ones, but also because they might be causing some side effects that I’m not crazy about. We’ll see what the rheumy has to say about it, and then – oh joy! – we might get to enter into the delicate diplomacy of trying to get the rheumy and the oncologist to agree on a new drug. Just in case I get bored having a kid off at college and need a hobby to fill my time.

I also had my six month post hip surgery blood work and – drum roll please – I am no longer excessively metallic! In fact, I’m barely metallic at all, which is supremely awesome. So it’s safe for everyone to have magnets around me again. What a relief for you all, I know. And speaking of my hip, I am apparently recovering so well that my surgeon didn’t even want to see me for my six month follow up. His assistant called and asked if I was cool with waiting till the one year mark to see him. Now I like my surgeon and all, but I am just fine with sitting in one less waiting room, thank you very much. In the meantime, they have me going to physical therapy, just to try to get back to 100%. I had hit a plateau at about 80%, so I’m very close, but it will apparently take a little more work to get all the way back. Bring it, I say.

And for the final ring of my three-ring health circus: my eye. I have now had three Avastin injections, and as I said in a previous post, I expect they will be bestowing pro status upon me any day. Really, I can rock those things. Ok, ok, they’re just not as big of a deal as they sound, but don’t tell anyone. I like that people think I’m tough. But the truth is, my blind spot totally works in my favor, because I can’t see the needles coming at me. So I’m grateful that worked out. I’ve got a lot more of these coming, as there is still bleeding around the tumor, but they’re starting to space them out more now. Once again, I say bring it.

So at this point you’re probably wondering what’s up with the title of this post, because so far I’ve just given you a rundown on my health status. It actually has to do with something that happened back in May, when Rich and I were traveling to St. Thomas, but I’ve been thinking about it a lot lately due to the road construction going on around our neighborhood. (Say what? No seriously, go with me here, it connects. I promise…)

There is a major intersection near our house that has been closed since May so they can convert it into a two-lane roundabout. Consequently, traffic has been diverted to surrounding streets (including ours), none of which were designed to handle the volume and speeds of the roads that are currently closed. I probably don’t have to tell you that this is not exactly bringing out the nice in anyone. And we who live here and drive on these streets every day get a front-row seat to witness all the anger, impatience and general ill-will of all the folks who now have to take a much longer route, with much longer waits, to get to their destination. It’s discouraging, to be honest, to see people acting like total jerks to one another, but you know what? It also makes me mad. And then I want to act like a jerk too. Because they deserve it.

And then there’s Facebook. Holy crap, can people get their nasty on when they’re at a keyboard. Just the other day, I saw that a friend had shared a post about a sensitive topic. It was a compelling message, stated with great thought and some solid logic. And it opened up a good opportunity for some thoughtful dialogue about the subject. But then I read the responses. The amount of emotion and venom contained in them was matched only by the extreme quantity of judgment and righteous indignation. Gone was any logical argument or respectful dialogue, replaced instead by LOTS OF SCREECHING IN ALL CAPS, because apparently that shows that you REALLY MEAN IT and that the other person IS SO INCREDIBLY WRONG. They all had to get their jabs in, and I’m sure they felt their hurtful words were justified because he had posted something so stupid and so offensive to them. He deserved it.

Which brings me to something I observed on our trip this past May. As our flight was about to depart, we noticed that while we were crammed together in a very full row, the row ahead of us only had one person, sitting on the window. “I’ll just jump up and sit in that aisle seat,” Rich offered. “That way maybe we can stretch out and grab some sleep on the flight.” Sounded reasonable enough, but as soon as he stood to move ahead, the guy sitting in the window seat of that row immediately slung his big, hairy, flip-flopped foot across the middle seat and onto the aisle seat, glaring at Rich over the top of his sunglasses (yes, sunglasses. Inside. On a plane). Wow, what a jerk, I thought. Rich returned to his seat next to me and sat down. “Sorry, I don’t think I’m moving,” he whispered. “It’s fine,” I grumbled back, “you probably don’t want to be near him anyway.” Just then, the captain came on the intercom and announced that they would be holding our departure to allow for some passengers coming in on a late connection. The guy in front of us exhaled loudly in disgust. I turned to Rich, “Wouldn’t it be awesome if they end up sitting right next to him?” Rich nodded. We settled in to wait for the additional passengers, the time punctuated by a few irritated groans from the guy in the row ahead of us. Finally, we heard breathless voices as the remaining passengers arrived and began to hurriedly make their way down the aisle to find their seats. An older woman stopped at the row ahead of us and squinted at the numbers above before yelling triumphantly over her shoulder, “THIS IS IT, HONEY! THIS IS OUR ROW!” As her adult son joined her, she threw multiple bags onto the floor and squeezed into the seat next to Grumpy Sunglasses Guy. I turned to Rich, unable to contain my glee, “This is fantastic!” “I hope she’s chatty,” Rich added, watching as the woman and her son (and all their bags) settled in ahead of us. Still out of breath, she turned with a grateful smile to Grumpy Sunglasses Guy, “Thank you for waiting for us!” He snorted. “It wasn’t my choice, believe me,” he shot back, sighing loudly before turning toward the window. She was not easily deterred, however, and continued chatting happily at his back, filling him in on all the details of their travel, seemingly oblivious to his disinterest. Rich and I just sat and observed, savoring the sweet schadenfreude of seeing someone get what they deserve. The lady continued to ramble on as Grumpy Sunglasses Guy writhed uncomfortably, and I thought with great satisfaction, this can’t get any better. After enjoying it all for a while, I sighed contentedly and got out my headphones and my book, settling in for the flight. All was right with the universe. About an hour later, I glanced up from my reading and saw to my great pleasure that she was still talking. Ha! Love it. But wait, it looked almost like – he was actually listening. And his body language was all different. He appeared relaxed and kind of…pleasant. Wait, what? I took out my headphones and sure enough, they were having a conversation. I couldn’t hear what they were saying, but his head was angled in towards her as he listened intently, and I could hear that he was talking too. Weird. I went back to my book. Finally we began our descent, so I took out my headphones and started to put them away. The in-flight movie was just finishing up – McFarland, USA – one of those feel-good, based-on-a-true-story sports movies. It was the final scene, where the team runs in the state championship race. Rich, who had been watching the movie, shifted his gaze for a moment and then looked at me. He pointed to the guy ahead of us, “He’s crying,” he whispered incredulously. I glanced over, and true enough, he was wiping his eyes. Wow. We were on the ground a half hour later, and as we stood to get our bags from the overhead compartment, I looked over at the row ahead of us. The guy had his sunglasses perched on the top of his head and was reclining against the window, laughing with the lady. Like he wasn’t in any hurry at all, completely at ease and content to sit and chat with his new best friend. And I was stunned. At the beginning of the flight I thought things couldn’t get any better because come on, what’s better than karma? What’s better than seeing a total jerk get what he deserves? I now found myself looking at it.

Grace. Grace is better.

Because I have been that jerk. We all have. And thank goodness we don’t always get what we deserve. Thank goodness.

So I’ve been thinking about that a lot lately, as tempers flare on the roads, on social media and in every other place where I’m tempted to think that it would just be so awesome if people got what’s coming to them. When I feel completely justified in letting anger make me the worst version of myself because, “That’ll teach ’em.” It’ll teach them – what?

We can’t really make karma happen anyway, it’s pretty much beyond our control. But we can be instruments of grace. We can resist the urge to return hurt with hurt, condemnation with condemnation, venom with venom. It’s not always easy – oh, how I wish it was! – and the rewards are more than we can see sometimes. But sometimes we do get to see it. On a plane, for example.

Grace > karma.

It just is.

In it, not through it

/ Jen / 1 Comment

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Let me begin with an important announcement: I’M FINE! Yes, I know it’s been over a month since my last post, but I assure you it’s only because I got busy with the stuff of life, not because something bad has happened with my health. I absolutely appreciate the concerned queries when I’ve gone an extended amount of time without posting, but I promise you, if anything ever goes wonky health-wise you will be the first to know. Wait, let me correct that. I will FIRST notify my parents and close family. THEN I will tell the world. “I don’t want to hear it on Facebook,” my mom is fond of saying regarding any major news. You won’t, Mom. Promise. And, I hope to never have anything bad to report anyway, so let’s talk about something else.

Ooh, how about something new, like for instance my health? Yeah, even I’m getting tired of all that, so I’ll keep it brief. I had my second eye injection last week and I think I’m already well on my way to achieving pro status at that craziness. Which is good, because the first one didn’t seem to put a dent in the bleeding around the tumor, so this is going to be a monthly thing for the foreseeable future. It’s a pretty slick process: numbing eye drops, then a shot of novocaine, then the Avastin injection and a super attractive eye patch for a few hours. The eye is irritated and a little sore for a bit, but that’s about it. If it didn’t take two hours, I’d be fine with the whole business. Yes, you read that right – two hours. I have no idea why, other than the office is crazy busy. Or they figure all the patients are ninety years old and don’t have anywhere else to be, I’m not sure. At least they didn’t dilate my good eye this time, so I was able to sit in the waiting room and send annoyed texts to friends. Yes, I could have used my time much more productively and positively, but the snarky texts were more fun.

On the rheumatoid arthritis front, things haven’t been going so swell (Ha! I just caught that when I reread this. Bad pun. Sorry, I’ll try to be better…). I’m starting to think that the new drug isn’t working as well as the old one, mostly because when I was on the old drug I frequently forgot that I even have RA. Now I’m not a doctor, but I would say that’s an indication that a drug is working. On the new drug, however, I am in no danger of forgetting that I have RA. It’s nothing terrible or debilitating, but it’s not pleasant either. I only switched meds in mid-April, so it’s probably too soon to officially say that it’s not working (you’re supposed to give RA drugs a good three months to work), but I might have to call my rheumy soon to chat about it. Which stinks, because in the Great Mayo/Edina Treaty of 2015 we were able to find an RA drug that both my oncologist and rheumatologist were cool with. Getting both parties to the table again in the same year would require a huge diplomatic effort. I might need to call in some reinforcements.

Speaking of calling doctors, I do have something to share that may be of some help to any of you who, like me, have ever put their life on hold while waiting to hear back from a doctor. You know how it goes: you call the office and leave a message with their nurse. She/he talks with the doctor and then either the nurse or doctor calls you back…sometime. You know that if you miss their return call, you’ll have to repeat the waiting process, so you resolve to have your phone on your person at all times. You’re ready. You bring that phone with you everywhere. In the car, to the grocery, within reach of the shower when you bathe, in your fitness class (yes, you even risk being one of those people), and yet they never, ever call. Fear not, sweet friends, for I have found the answer. I have discovered exactly what to do to cosmically summon that phone call: color your hair. Yes, it has worked for me enough times now that I can say this with the utmost confidence. Color your hair. Pile a ton of the darkest, goopiest, stickiest dye you can find on your head, smear it generously into your hairline, being careful not to miss the sections around your ears, and a doctor will certainly call. I just had to replace my phone case because it had auburn smears all over it, that’s how well this method works. A small price to pay for returned calls, I would say. So if you want a doctor to call you back, just color your hair. Or, if you like your hair the shade that it is, I bet that any messy project will work. Just make sure that it is super inconvenient to hold a phone while doing the task, and you can expect that call. I colored my hair the other day and not only did two doctors call me, the guy from the car dealership also called to tell me my new floor mats were in. Bonus.

So that’s it for today. I will try not to go more than a month without posting, but no news really is good news. It means life is keeping me busy, which is a lovely thing. Being alive is just great period, I try not to forget that. It’s easy, however, to get caught up in the to-do lists and things that stress me out – and when I do let them overwhelm me, I am not my best self, I will be honest about that. I end up just trying to get to the other side of it, get it over with, instead of relishing the fact that I get to be here for this. For all of this.

This week is totally nuts. My son graduates, I have out of town family visiting and we’re hosting a party. I’m also on the senior poster committee for the all night senior party and coordinating music for a Disabled American Veterans event the day before graduation. Riley has parties to go to, a few last tests, the senior brunch and baccalaureate. Tessa has dance team tryouts and a major group project due for one of her classes. We are not a calm household at the present moment. At times like these, it’s easy to think, “I just want to get through this week.” But then at church yesterday morning I ended up talking to my friend Marilyn and she said something that really grabbed my attention. Marilyn is one of those people that just has a light around her, one of those rare beings that you find yourself wanting to get as close as possible to, as if her goodness is a kind of wet paint and you’re hoping to get some on yourself. Among the challenges she’s faced in her life is a very advanced case of RA, and she inquired as to how mine was doing. I told her a little bit, but then couldn’t help totally fan-girling her: “You are so incredibly strong, Marilyn, and your attitude is just inspiring. How do you do it?” She smiled that beautiful, radiant Marilyn smile. “Well, I ask God every day to give me a heart for my journey, and peace as I make my way.”

I let that sink in a bit.

“Give me a heart for my journey, and peace as I make my way.”

I know that’s meant to apply to life in general, but I couldn’t help hearing it in the context of my upcoming week. I realized that during a pretty important week in our family’s life, I was only seeing the work that needed to be done, and the obstacles, both health and otherwise, that lay in my path. I was just trying to get through the week, get on the other side of it, rather than simply being in the week. Living “in the moment” can be such a clichéd phrase that the meaning doesn’t even register anymore, but that’s really what it is. Or needs to be.

I resolved then and there to focus on being in this week, rather than just trying to get through it. Being fully present for everything. Enjoying the company of friends and family, marking a huge milestone in my son’s life and doing it all with gratitude. A heart for my journey. And peace as I make my way.

Deep breath. Here we go…

The prisoner is free!

/ Jen / 7 Comments

Hi! So sorry for the lack of updates these past few weeks. I am well aware that when I go too long without checking in, people start losing sleep, agonizing in the middle of the night, “But what about Jen’s hip?? If only I knew!” Ok, ok maybe not. But still, I honestly didn’t mean to let it go so long.

No sooner had I ditched using the crutch in the house and switched to a cane for my excursions into the outside world, than my whole family got sick. All that forward momentum, all of the things I was going to get done with my new found mobility came to a screeching halt as the family was laid low by various nastiness like sinus infections, strep and pneumonia. I actually came out of it pretty unscathed which is good since, mobile or not, I am the caretaker – the taker of temperatures, the holder of barf buckets, the keeper of the medication charts (I know I’ve mentioned that I’m the daughter of an engineer. You bet your sweet spreadsheets we have medication charts). I am finally getting my voice back, which is good because I have a lot of phone calls to return. I found out the hard way that if you try to call people when you barely have a voice, they think you’re pranking them and they hang up. Not productive. And is it too much to ask to at least sound like Kathleen Turner when you lose your voice? Apparently it is, because I’ve been talking like Marge Simpson for the last two weeks. It’s funny for about two days. And then it’s not.

So anyway, this week when the last sick kid went back to school I had a rheumatologist appointment, followed by my 6 week post-op check with my orthopedist. The rheumy appointment was easy enough, pretty much a, “So you had your surgery?” “Yep.” “It went well?” “Yep.” Now that the surgery is over, we’re going to try humoring my oncologist by going halfsies on my Plaquenil. The rheumy gave me some literature on another medication and told me to discuss it with my oncologist at my next visit, at which point I pouted and began to whine like a two year old, “Why can’t yooouuu do it?” It’s ok, I composed myself (big girl panties on!) and rephrased it to sound more like the intelligent adult woman that I pretend to be. I explained further that the only time I get to see my oncologist is at the end of an emotionally and physically exhausting day, and at that point I’m only concerned with hearing one thing: that my scans are clear and I’m not dying any time soon. I really couldn’t care less about the potential retinal toxicity of Plaquenil, or anything to do with my joints at all, really. I just want to call my kids and my parents and then go home and have a drink. Or two. He listened patiently and then told me what I pretty much suspected all along – it’s not easy to get through to Mayo docs, even if you’re a doctor yourself. He said he would try getting a message to my oncologist, but that it would take four weeks. He knew this because he did his training there. Four weeks. But he was game for trying, and I appreciate that. My next trip to Mayo is about five weeks away, so there’s a chance they will have communicated before I get there. Here’s hoping.

So I’ve been smugly waiting all through this blog entry, getting through the sick family stuff and the rheumy stuff, knowing that I have AWESOME news to share, and I can’t stand it anymore. Wait till you hear this…

I had ALL my restrictions lifted! Seriously! After the rheumy appointment I went over to see my orthopedist for my 6 week post-op check, and let me tell you, I was ready to negotiate. I had it already worked out in my head: I was going to tell him that I wasn’t asking him to lift any of my restrictions early, just wondering if we could relax one of the limitations just a tad. Instead of not being able to bend more than 90 degrees, what if we made it, say, 120 degrees? 110? Fine, I’ll take 100, just let me sit in chairs and use normal toilets please! I totally had it rehearsed. I was ready. But as I was being led into the exam room, he happened to walk by. I smiled and did a little skip step (totally on purpose, showing off to give me some ammo for the Big Negotiation), and he stopped. “Wait a minute,” he called after I passed him, “You look fantastic. Do you feel as good as you look?” “Better” I grinned. Hello, 120 degrees! I went into the exam room and rehearsed my speech again while I waited for him. When he did come whooshing in (he’s always whooshing in and out – most doctors with a million patients do, I’ve found), he asked me some questions about my pain, then had me lie on the exam table so he could check for leg length discrepancies (I do have one, but he didn’t sound concerned). “So bring your knee toward your face as far as it’ll go.” Wait, what? I squinted at him. He wouldn’t mess with me, would he? “For real? Bend it all the way?” He laughed, “Yeah, all the way.” All the way turned out to be just about 90 degrees. “Pretty tight?” He asked. “Yeah,” I replied, still wondering when I’d have to start negotiating. “Ok that’s good. No restrictions then.” And he started talking me through some stretches, and I was nodding and looking calm on the outside, but inside I was screaming, “NO RESTRICTIONS! NO RESTRICTIONS!!! HOLY CRAP, NO RESTRICTIONS!” We talked about rechecking my metal levels and that if those were good I wouldn’t have to come back for four months. As he left, he looked at me, smiled and added, “And I don’t want to operate on that hip ever again.” Amen, brother! I texted Rich the good news, and he was immediately the protective husband: “What do you mean?” He asked skeptically. “The doctor was pretty firm about the 12 weeks when he talked to me after surgery. Did you ask him why he changed it?” Um, no. Why would I do that? I wasn’t about to challenge the best news ever. But I started to get uneasy as I thought about it. Shoot, what if he was in a hurry and hadn’t checked his notes? What if this is just temporary until he catches his mistake? Well then. There was only one thing to do: run home and shave my legs fast before he could call.

When a day passed with no phone call, we determined that my nimble walking and hip that was so tight it couldn’t get enough past 90 degrees to get me in trouble must have been what swayed him. I triumphantly packed up all my assistive devices and stowed them back in the basement, where I hope they get very dusty. And then I went to a spin class, where I’m sure I was the happiest person there. I was so stiff I could barely reach the handlebars, but it was delightful anyway. I’m going to try yoga later today, just in case you hear some really loud laughing.

Oh, and I kicked Jake out of the bed. To explain, after my first surgery we bought a body pillow to help me get comfortable sleeping, and at the time Rich complained that it was like having another person in the bed with us. So I named the body pillow Jake. I can’t remember why Jake, but that’s his name, and so when I had hip surgery part deux, Jake once again joined us in bed. Rich is a terribly good sport, but recently he had been asking if Jake would be leaving us soon. Soon was yesterday. Oh Jake, you’ve been a dear, and you’ve been so supportive, but I don’t think we can see each other any more. You’ve been coming between me and my husband. I’m sure you understand. It’s not you, it’s me…

So that’s the good news here. I had other things I was going to comment on, but they can wait till another day, because they’re of a slightly more contemplative nature, and quite frankly I don’t feel like being contemplative today. The sun is shining, my family is healthy and did you hear? I’ve been freed from movement jail! I have NO RESTRICTIONS!!!

Just in case you missed that part… 🙂

Scans tomorrow

/ Jen / Leave a comment

Well it’s finally here – the next round of scans. It’s funny how far away September 29th sounded initially, but it seems to have arrived rather quickly. The bad news is, I’ve been insanely busy and preoccupied in the past month…the good news is, I’ve been insanely busy and preoccupied in the past month. No time to sit around and worry about the upcoming tests. And that’s probably a good thing.

Tomorrow we head to Mayo first thing in the morning for what will be a long day. I’m grateful, however, that they got me scheduled for all of my tests and appointments in one day (last time it was 2 days). I will be sure to post here as soon as I have eyes that can focus, but keep in mind that can take a while – ah yes, the turbo dilation. I’ve missed that. They use at least three different kinds of drops to dilate me, and then numbing drops before the eye ultrasound, leaving me with nothing to do in the waiting room but stare at the floor tiles and listen to the world’s worst musak. I mean honestly, last time I was there, the first song I heard as I nervously awaited my first test was “Nadia’s Theme.” Come on, nothing says “you’re going to die” like Nadia’s Theme – and a bad musak version of it at that. Yes, someday I will take over the Mayo Clinic, and the first thing I will do is change the music. Just to something a little less morbid.

I have, however, mastered the art of not panicking in the MRI: the eye mask. Yes, as simplistic as it sounds, I have found that if I can’t see that I’m being stuffed in a tube, I can pretend that I’m not in one. It works, don’t judge. It’s a little harder to completely zen out and go somewhere else for liver MRI’s, though. After putting the world’s biggest needle in your arm (the nurse warned me last time. Holy cow, she wasn’t kidding), they put this cage around your chest and then you have to follow their instructions to breathe or not breathe. So I can forget about sleeping, but between the cancer and my hip, I think I’m getting the hang of this MRI thing.

Speaking of my hip and/or high metal levels, there’s nothing to report there. I’m still following orders and not running, and we’ll repeat the blood tests at the end of October. If my levels are still high, we’ll repeat the MRI (MRI’s!!!! I totally LOVE those!) and then go from there.

As for the rheumatoid arthritis, my oncologist said no to methotrexate, but agreed to let me take Plaquenil. And as much as I don’t care for the side effects of prednisone, that stuff was magic. Magic, I tell you. I don’t think I really had a sense of how much function I had lost in my left hand until I got it all back. It was totally worth having to pee every five minutes. I’m serious. And since the Plaquenil takes months to start working, my rheumatologist gave me more prednisone to keep on hand in the event that I have another flare up. So while mentally I’m still trying to wrap my head around this newest addition to the three ring circus that is my health, physically I’m doing pretty well.

Which leads me to how things are going emotionally. Honestly, I’ve been doing well for the most part, and I’m feeling pretty good about tomorrow. I ended up having a liver ultrasound last month due to some funky bloodwork, and everything looked good. That doesn’t mean there’s nothing there, but it does mean there’s nothing big there. As warped as it sounds, I find that comforting. And I think it’s just going to take time to get used these scans – both the anticipation of them and the actual tests. For instance, I’ve already learned that once all my scans and tests are done and I’m finally, nervously sitting and sweating in my oncologist’s exam room, the door is going to open at least once, maybe twice, and someone who is not my oncologist will come in and do an examination. Seriously, I’m waiting breathlessly for my results, and the door moves – suddenly my heart starts beating so fast I get this buzzy feeling – but the person entering the room is merely one of my oncologist’s fellows, who can tell me nothing. They do the same exam that the nurse did and the oncologist will do, and while I understand that this is important for their education, it’s unnerving to say the least. But I’m expecting it now, which makes it a bit easier.

The other thing that makes all this easier is the massive support I’m receiving. I am ridiculously blessed with the most amazing friends and family. People who are willing to laugh with me, cry with me, pray for me, let me vent, encourage me and inspire me – it’s probably not easy walking this journey with me, but they’ve never abandoned me, never even rolled their eyes at me (or at least they’ve been kind enough to wait till my back is turned…). I feel like I have an army surrounding me.

So, army, if you feel inclined, I would welcome your prayers for tomorrow. I’m praying that the scans will show that the tumor is definitely shrinking, and that the cancer hasn’t spread. If you would add your voices and hearts to that prayer I would be grateful. Also, I’d appreciate prayers for my kids – that they will have peace tomorrow and be able to go about their classes and activities without the distraction of worry.

Thanks for taking the time to read this, and for your support! Hopefully I’ll have good news to share tomorrow!

Seriously??

/ Jen / Leave a comment

Hey everyone! Let me quickly get you caught up on the last month of “stuff”, and then I will explain the exasperated tone of my post…

First off, my permission to run lasted all of 48 hours. When my orthopedist had more time to think about it, he decided that we needed to find out if the running was causing the high metal levels, since the MRI was inconclusive. So, I got a phone call (luckily just after squeezing in the most lovely 8 mile run) telling me to knock it off. I am, of course, not happy about it, but I want answers and if this is what it takes, so be it. I’ll have my blood work repeated at the end of October, and if it’s still funky they’ll repeat the MRI to see how the fluid on the hip looks. Then I guess we’ll go from there.

The oncologist then weighed in (not directly with me, more in a whisper-down-the-lane kind of way that took 2 weeks) and said he knew of no connections between cobalt and chromium levels and melanoma, and he didn’t see a problem with waiting to see how things shake out. So no insight or clues to anything there.

I then saw my new internist, and first of all let me say how much I LOVE her. I came in and told her everything I had going on and she didn’t put on her Nikes and sprint to the nearest exit. Quite to the contrary, hers was more of a “bring it on” kind of reaction. I like that. After a thorough exam which included an ultrasound of my heart (I don’t know why, but it was cool looking), the most detailed family history I’ve ever been asked to give, and a complete review of my other doctors’ reports, she candidly declared that I was a mystery. Boo. BUT, she wasn’t about to throw in the towel. She ordered a bunch of blood work and told me to see a rheumatologist, and then report back in a month.

A rheumatologist? Oh yes. I’ve neglected to mention it in my posts here, but I’ve been having join pain, stiffness and swelling in my hands and feet for the last 3 months. I totally chalked it up to the metals, since they happened at the same time, and my internist agreed that the timing was suspect. She thought that a rheumatologist might know if there was a metal connection or not. I was game, since it had gotten to a point where I couldn’t make a fist with my left hand (it’s ok, I told people, I punch with my right hand).

I love my rheumatologist. He’s a super great guy, and another one who didn’t run screaming when faced with the task of caring for me. And he has a good sense of humor, which is important to me. However, neither of us were laughing when my blood work came back: I have rheumatoid arthritis.

Hence the title of this post.

I mean really? Is this truly necessary? I kind of thought I had enough going on, but sure, let’s add something else, shall we? Now, the thing about having cancer is that you start to measure everything by “Can it kill me? No? Ok, we’ll deal with it.” This is hardly tragic, but it’s not a tiny thing either. And it’s all complicated by the cancer thing – because a lot of the big guns in the rheumatoid arthritis-fighting arsenal are a little sketchy when it comes to cancer. So I’m going to have to get every RA medication ok’d by my oncologist. I already have a call in to him about 2 meds. We’ll see how many weeks of talking to nurses and assistants it takes to get an answer.

In the meantime, I’m starting on prednisone tomorrow (and very much looking forward to getting thirsty and fat – my previous experience with the drug). If the oncologist is cool with it, we’ll start methotrexate in about 4 weeks, and then see if we need to hit a biologic med or not (but those are the ones that are especially sketchy with the cancer stuff, so we’ll see). If we can treat it aggressively I could even end up in remission for the RA. I would like that.

So the plan is now as follows: start treating the RA, get my scans at Mayo at the end of September (and hopefully see that the tumor is on the run and everything else is clear), go on vacation (yay!), then revisit the hip and metal levels. Oh, and not have anything else come up. Seriously.

That’s the scoop for now. If you’d like to linger in the Land of Jen (and really, who wouldn’t? It’s full of fun and surprises!), I will tell you a little story…. (Or you can be done reading. Really, it’s ok. That other stuff was really long.)

Back to a month ago…

Initially I handled the moratorium on running with a great deal of poise and grace. I should have known something was up right there. But the emotions eventually caught up to me – at 10:30 on the night before I was scheduled for a long bike ride with some girlfriends. My tire wouldn’t pump up, and the more I tried, the more it deflated. I just couldn’t get it to work, and as I began to get more and more frustrated, I had the thought, This wouldn’t be happening if I could run! Aaaaand the next thing I knew I was having a meltdown rivaling that of any petulant two year old. Like a full-on tantrum, complete with wailing and throwing things. So much for poise and grace. Once I pulled myself together enough to determine that the tire was flat (and I have no idea how to change a flat), I had the desperate thought to text my girlfriend Jeannine. She is a dear friend and a hard core runner, and her husband is big time into cycling. Did I mention it was 10:30 on a Saturday night? Yeah. I did that. I asked if I could bring my wheel over, and they graciously agreed. So, at 10:45, I pulled into their driveway, and before I could even exit my car they were out of their house like a pit crew. I stood there with my swollen, tear-stained face and meekly held out my tire, which Marty took and immediately began working on. I turned to Jeannine and just whispered hoarsely, “I can’t run.” She nodded and hugged me, and we stood there silently while Marty finished fixing my flat. And then I was on my way back home, with a repaired wheel and a mended heart. That’s the kind of friends I have: friends who will hug you and love you when you have a flat – knowing all along that it was never about the flat.

So thanks to you all. I am blessed to have your support, love and prayers.

And I hope my next update is really boring. Just sayin’.