Running – faith, trust and pixie dust

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I really did have the earnest intention to blog while on vacation, but well… I was on vacation. Played hard in Disney World with Rich, Riley and some awesome friends for 4 1/2 lovely days and barely touched my iPad. And I’m not sad about that. But I’m having surgery in a few days, and I haven’t really said much about that (probably because I haven’t thought much about it), so I need to bring you all up to speed before I head into a drug-induced la-la land for a bit.

But first, Disney…

We went for the marathon weekend – planned before my hip figuratively went south, of course. Tessa was originally going to be with us too, but she ended up having a dance competition and stayed back with our good friend Christine. Saturday, four members of our group and I ran the half marathon. And yes, as you can see from the picture, I ran in a Minnie Mouse costume. I’ve actually run the half marathon and full marathon (called the Goofy Challenge when you do both) several times, and I’ve been Minnie every time. It might not be very aerodynamic (seriously, those ears are not good in a headwind), but it’s cute, and when in Disney you should always err on the side of cute. It’s Disney World, for crying out loud. Going into the whole deal, I had no idea what to expect from my body, since generally it is considered good preparation to actually run a bit before you race, and I had done next to nothing. One five mile run in the fall after my running embargo was lifted, and it hurt a lot so I didn’t do it again. I had full permission from my orthopedist to run this, so I wasn’t doing anything naughty, but this was a total unknown. I did know one thing, however: it could be my last race. I don’t know if I’ll be allowed to run after the hip replacement. So I decided that I would complete it, even if I had to walk the whole thing, even if I had to drag myself across the finish line with my lips.

It did sound a little crazy, especially when I heard other people say it. As we waited in the staging area before the race, someone asked me my goal time and I think I answered vaguely that I wasn’t sure. “She’s having her hip replaced on Thursday,” Rich explained. All around us eyes widened and eyebrows shot up, with varying expressions of awe, horror and oh-my-gosh-you-are-the-dumbest-person-ever. Yes, it sounded totally nuts.

But oh man, it was so fun. Turned out I ran just fine. Maybe my body just remembered how to run, maybe the euphoria of running a race again and doing it in freakin’ Disney World masked the discomfort. Maybe I’d found some pixie dust, who knows. But for 13.1 wonderful miles, I felt my feet against the pavement, the rhythmic swinging of my arms, the wind in my hair (and pushing against my very cute mouse ears, ugh). I heard the happy chatter of runners around me, the thump of music playing along the course and the at times deafening cheers of spectators. All around me was pure joy. Ok, a little suffering too, but mostly joy. And I loved every second. As the finish line loomed ahead I tried to look around and see everything, to take it in and memorize it all. Just in case.

As wonderful as it felt to run, walking afterwards was a different story, as it was then that my lack of training made itself known. My hip felt fine, but every muscle in my body angrily screamed curse words at me with each step. So, even though I was signed up for the full marathon the next day, I caved to my potty-mouthed muscles and skipped it. Not an easy choice, because it would have been marathon number 30 for me (I do love nice, tidy numbers), and the medal for doing both races was especially cool this year, but my John Wayne-esque walk was pretty solid evidence that it was a bad idea. And I’m so glad I passed on it, because it meant I had a prime spot at the finish line to witness my son finishing his very first marathon. It is so cool to see your kids come to love things you love. And pretty special that as I was potentially wrapping up my distance running years, he was starting his.

Ok so talking about the trip took longer than I planned. Tell you what – I’ll hit you with the nitty gritty on the upcoming surgery in my next post, is that cool? I know you’re all just dying to know all about it. I mean, what is more fascinating than a hip revision? Sexy stuff, I tell you. I won’t leave you hanging.

Until then, one final thought: birthdays. It’s my birthday today, and in Disney World they give you birthday buttons to wear around, so every cast member wishes you a happy birthday. It’s fun. I was, however, starting to bristle just a bit after the third or fourth cast member chirped cheerfully, “Happy birthday, ma’am!” Wait – “Ma’am??” Am I really that old? When did I become a ma’am?! But just as I started to look around for a cane to smack the next whippersnapper that tried that business with me, I was reminded of the revelation I had on my birthday last year: getting older is something not everyone gets to do. As someone with cancer I know full well how precious birthdays are. And more birthdays mean more wrinkles, more gray hair and yes, more “ma’am”. And that’s not only ok, it’s a good thing. A great thing.

I get to have another birthday today. So if you’ll excuse me, I have some celebrating to do…

Seriously??

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’.

Who is that mysterious woman?

So after a long week of waiting, the MRI results are in and we know….nothing. The good news is that they didn’t see anything alarming and I’ve been cleared to run while we figure this all out. The bad news is, no one seems to have an explanation for my sky-high cobalt and chromium levels. The MRI showed bursal fluid and that’s it. What that means, I’m not sure, but it doesn’t have any surgeons sharpening their scalpels, so I’ll call it good. The physician’s assistant I talked to today said my orthopedist wants to take a watch and see approach, repeating blood tests and MRI in 6 months. That is, however, a long time to be hanging out with a potential carcinogen coursing through my veins, so at my request the dude himself will be calling me either this weekend or Monday to chat more about it. In the meantime, I decided it was time to bring my oncologist to the party, since we don’t know this is a hip-only thing now. He will be calling me as well. Hopefully somebody can figure this puzzle out! I always thought being mysterious sounded sexy, but I’m not really liking it right now.

Thank you all for the positive thoughts, well wishes and prayers! Hopefully this is just a speed bump on the marathon course of my health journey. I will, of course, keep you all posted as things come up, but it sounds like this is something that won’t be quickly resolved, so don’t worry if you don’t hear from me. Just know that any rhythmic thumping you hear is just my head against the wall (it’s ok, I have a hard head!). Gotta work on that whole patience thing… But first, I’m going for a run 🙂

My magnetic personality?

Hey everyone! Sorry I haven’t posted anything. I really did intend to give a little “I’m doing great!” shout-out once a month, since that’s about when I start receiving worried emails and texts from folks, but life has been crazy busy (in a fun way), and there really hasn’t been anything to report. And that’s really the rule of thumb here: no news is good news. If you don’t hear from me, that’s a very good thing. It means I’m busy living and enjoying life!

Up until a few days ago, there was really nothing to update you on, aside from some more FAQ’s and random observations on living with cancer. The new plot twist actuall

My first half marathon post hip surgery

My first half marathon post hip surgery

y has to do with my hip (and if you’re Facebook friends with me, you’ve heard this, so you can skip to the next paragraph if you want. Totally legal). As most of you know, I had my hip replaced just a little over two years ago, a hip resurfacing surgery, to be exact. The bionic life has been glorious – no pain, great range of motion, and after a year I was allowed to start running again. Most of you also know how important running is to me – I’ve run 29 marathons, that’s how much I love to run. It’s more than exercise, it’s therapy, creative thought time, alone time or social time, time to challenge myself or time to relax and enjoy the scenery. I love meeting people at races, reading the funny signs that spectators hold up, high-fiving little kids on the route, and I love, love, LOVE finish lines. I have been so very grateful to have all that back in my life, courtesy of my oh-so-awesome bionic hip. So it was a bit of a shock last week when, in the middle of a college visit with Riley, I got a call from my orthopedist’s assistant. Apparently routine blood work revealed that my metal levels are “off the charts.” This is something that can occur in people with metal on metal implants, but it is rare (ah, but getting rare things is my specialty! Rich says I should play the lottery.). My X-rays at my two-year checkup were great, and my hip feels awesome, so the doctors are scratching their heads on this, because it doesn’t add up. So, I’m having an MRI on Monday (it’s been over 2 months since I was last stuffed in a tube. I was starting to miss it…). If they see any evidence that the metal is wearing or that my body isn’t tolerating it, I have to swap out my awesome, running-friendly hip for a traditional, no-running-allowed hip. Oh yeah, and have major surgery and all the recovery and PT that comes with that. Not cool. But the flip side of it is the possibility that my hip will look fine, and then we have to figure out why I am so overly metallic. I mean, I’m totally cool with just avoiding magnets for the rest of my life, but when you add in the cancer thing, that could be a game changer. Of course, who knows, maybe my radiation treatment is what is causing my excessive metal-ness in the first place. Anyway, I’ve been told to stop running for now, get the MRI and we’ll go from there. I will, of course, update you all if there’s anything happening. If, however, it’s determined that I’m a medical mystery I might be too busy banging my head against a wall to post anything.

So, enough of that. On to cancer updates – I mean, that’s what we’re all here for, right? The short answer is I’m doing very well. Thank you, good night.

Ok, if you want more, I will give you a few FAQ’s, for your enjoyment:

1. “How are you feeling?”
I’m feeling fine. Really. It’s a weird thing to have cancer and yet feel completely healthy, but I haven’t had chemo and all that goes with that, and my radiation was so specifically targeted at my eye that the only side effects from that are limited to my eye (unless, of course, we find out it’s responsible for my metal levels).

2.”How is your eye?”
Not too bad. My vision is definitely getting progressively worse, but it’s happening so slowly that I barely notice the changes. I’m still getting used to limited peripheral vision on my left, and I have multiple bruises on the left side of my body to prove it. I’ll figure it out eventually. My eye does get dry, itchy and/or irritated sometimes, but I think the doctor said he can get me eye drops for that.

3.”When are your next scans?”
September 29th. Same exact stuff I had in April, and hopefully with the same results – no, better results. We want to hear that the tumor is shrinking in ALL directions. Personally, I’d like to hear that it shriveled up and died, but they said it’s too early for that. But a girl can hope, right?

So that’s the scoop for now. Summer has been grand, and as long as I can avoid more surgery it will continue to be grand. Full of soccer games (Riley’s team made it to state!), college visits (seriously. Don’t ask where the time went) and tons of dance (Tessa, not me. She made the high school dance team and it will apparently be our life for the next 8 months or so. She is, of course, loving every second). And I am loving every second too. It’s a grand thing to be alive, especially at this crazy busy time in the kids’ lives. I love that I have a front row seat for all of it, and amazing family and friends by my side. Thank you all for always lifting my spirits, encouraging me and making me laugh.