Time to ditch the metals

Hey everyone! Let me start this off by saying I have absolutely no updates on the cancer. I don’t go back to Mayo until March, so I don’t anticipate having any cancer news for you until then. My vision in the left eye continues to deteriorate, but slowly. For the most part I’m adapting pretty well, and half the time when I think “oh my gosh it’s gotten so bad!” it just turns out I have a gigantic thumbprint on my glasses. Still figuring out the glasses thing – like how do you check on anything in the oven without them fogging up? And I seem to have accidentally purchased a magnetic pair of glasses, as they attract every spec of dust, dirt and grime. Seriously, glasses wearers, how do you not spend every waking hour cleaning them? Ah, the mysteries of life…

No, the purpose of today’s post is to fill you in on the latest development in the three-ring circus that is my health. My Facebook friends know this, so apologies for repeating. The good news: the metal issues are going to be resolved. The bad news: the only way to do this is to have my hip replacement replaced.

Yep. ‘Cause I mean, what on earth was I going to do with all my free time before my scans in March? Just deal with the RA? Please. That’s just one thing. Where’s the challenge in that?

I actually had an inkling of this in September, when I started having some discomfort in the hip, along with a catching sensation and some weird noises (try explaining THAT to your yoga class. “It was my hip! Honestly!”). So it wasn’t a huge surprise to learn after my repeat blood work that my metal levels were even more elevated than before. The repeat MRI didn’t show anything new, but when I went in to chat about it all with my orthopedist last week, he was clearly bothered by the metal levels. And quite honestly, as a person with cancer and 3 autoimmune diseases (yes, I have 2 others – Hashimotos and Reynauds, but I’ve had them forever and they are no big deal), I’ve been troubled by the potential effects of high metal levels on all that. He did offer me the option of waiting 3 months and then retesting everything, but when I pressed him for his opinion he just sat back and sighed, “Your metal levels keep me awake at night.” Well then.

So I will be saying goodbye and good riddance to the metals (and my hip) on January 15th. Why so long? Because we are going to Disney World with friends in early January for the marathon and half marathon, and my orthopedist is totally cool with waiting till after that. He even said I could do the half marathon! Not sure how feasible that is, given my current level of pain in the hip, but at the very least I am walking that sucker. I might even try to walk the marathon – I cringe at what a long day that would be, and after doing the half marathon the day before it could simply be out of the question, but it would be my 30th marathon. And type A folks like me like nice, neat, even numbers. If I don’t do the full, I will have awesome friends to hang with, and we will all be cheering on Rich and Riley (running his first marathon! I’m so excited!). So it’s a win-win. Then I go home and have my hip replaced a few days later. Such fun.

Speaking of fun, I see my rheumatologist in a few weeks, at which time I get to inform him that my oncologist wants to cut my RA meds in half. My rheumy’s a pretty low-key guy, but I can’t imagine this going to go over well. I will be sure to tell you all about it if it gets entertaining.

If all this news sounds rather lighthearted, let me explain that I am currently in the middle of The Week of the Girlfriends. I have had quality girl time every day this week, including twice with friends from out of town that I don’t get to see often. Girlfriends are just good medicine. They’re good for the soul. So I’m feeling pretty upbeat about everything this week. It’s just hard to get down about stuff when you are surrounded by people who love you and support you, no matter what crazy crap life tosses your way. Seriously, get out and have some quality friend time – you’ll be glad you did.

During lunch with my dear friend Melissa (which included her mom and two of her friends – life lesson: great people know great people. Get to know your friends’ friends), I got chatting with Elaine, who said she’s been following my Caringbridge posts. “Is it weird that strangers know your story?” she asked. The simple answer is no. For one thing, as any mom knows, having kids means not having secrets. My sweet Tessa, at the age of 4, loved to tell total strangers – bank tellers, grocery clerks, the guy at the car wash – random things about me: my age, how much I weighed, that my actual hair color was gray, that I couldn’t wear a bikini anymore because I had babies and my stretch marks were “REALLY bad – Mommy, show him!”…yes, I gave up on privacy right about then. But in all seriousness, I am just humbled that anyone would care enough about my story to read this. Life can be tough sometimes, but having other people along for the ride makes it better. Even if I haven’t met them.

So that’s the scoop for now. I’ll share more details about the hip stuff when we get closer. December 4th is coming up – my one year “cancerversary” as I’ve heard it called. I’m hoping I can slow down enough to reflect a bit on the year. If I come up with anything deep or profound I’ll share it here. I’ll probably share the shallow and stupid stuff too, because that’s just funny. And I do love to laugh.

I have my rough days too, please don’t think it’s all rainbows and cupcakes, but for the most part I’d say life is good. I’m just having one of those weeks where everything is funny to me. I’ve learned to take these times as the gift that they are, rather than judging them or waiting for things to shift.

Thanks for laughing with me. I’m grateful for all of you!

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 🙂