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.

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Self care

All is well in the land of bionic hips! Once I get that sucker warmed up, I can walk with barely a trace of a limp, and I’m fully back to pre-surgery activity levels – minus the flexibility, but I expect that’s going to take a lot longer. They tested my metal levels at six weeks post op, and it’s amazing how they’ve plummeted (that’s good!). My chromium has gone from 110.3 to 17.7, and my cobalt from 96.7 to 9.4. I think normal levels are below 5, so I still have a little ways to go, but they should continue to fall.

That’s the good news. The slightly less than good news is that the vision in my radiated eye has taken a noticeable nosedive in recent weeks (perfectly timed with my pre-scan anxiety, more on that later). It’s not unexpected, just disappointing. Things had been holding steady long enough that I started to think that maybe that was as bad as it would get. But the doctors did say it would take 1 1/2 to 2 years to know exactly how much they fried my optic nerve, and I’m only at a year and three months, so I suppose this is par for the course. And speaking of disappointing, I’m starting to have more joint pain again, which could mean that my body is not a fan of cutting my RA meds in half. My rheumatologist has another drug he wants me to talk to my oncologist about taking in addition to the Plaquenil, but I was really hoping this half dose thing would work out. That way all my specialists would be happy and it wouldn’t matter if they talked or not. Hey, a girl can dream, right?

Is your head starting to spin a bit? Sorry. I do try to keep things separated into manageable little compartments (for my own sanity), but sometimes all three rings of my health circus start performing at once, and it really does get difficult to know where to look.

Really though, the cancer thing is in the main ring right now, because I have scans coming up next week. How has it already been six months?? Yes, the hip stuff proved to be a stellar distraction, but I am once again reminded that I have cancer. And I still haven’t figured out how to have cancer. I’m pretty decent at getting hip replacements, I’m getting better at having RA, and although I’m cranky about it right now, I’m generally pretty chill about the goofy vision. But I just don’t have this cancer thing figured out. Not yet anyway. It’s surreal when I think about it, really: every six months I go to the Mayo Clinic, knowing that at the end of all my tests and exams a doctor will tell me whether the clock has begun to tick, or if I’ve renewed the lease on my body for another six months. How do you prepare your mind and spirit for that?

In my case, it’s by getting thoroughly psychotic for the few weeks before the appointments (maybe longer, you’d have to ask the lucky folks who live with me). It’s like having really bad, really prolonged PMS. Everything makes me cry – happy things, sad things, dog videos on YouTube – you get the picture. I’m also quick to snap, less patient (not my strongest quality in the first place) and my language has gotten rather salty. In short, I am just not the best version of myself right now, and I don’t like it. I do remember a dear friend and neighbor who happens to be a cancer survivor gently warning me about this: “Jen, my friends and family just know that the few weeks before my scans I am not pleasant to be around.” And she’s been at this for years. Years. I don’t know why I thought that wouldn’t be the case for me, why I am so disappointed at my own weakness and vulnerability, but there you have it. I’m scared, I’m worried and I just want to get this over with. The funny thing is, just the other night I was chiding my dear, Type A firstborn, “you are so good at showing other people grace, but you are so reluctant to show yourself grace.” Hmmmm. Not the first time I’ve given my kids advice that I would be wise to take myself.

So that’s been the last few weeks for me. It hasn’t been all gloom and despair and brainlessness, trust me. I’ve had some lovely moments of humor and hope that have kept my head above the waves (and kept my family from having me committed). I know that in times like these I have to lean hard on my resources – my faith, my family, my friends, even my fitness. Just telling trusted girlfriends how I’m feeling, spending time in a good devotional or listening to music that pumps me up while I sweat it out on a spin bike is therapeutic. There’s also all the self care stuff, like getting decent sleep (ok not always successful but it’s a good goal) eating right (medicinal chocolate anyone?) and all those other things I see in the healthy living articles people post on Facebook and I keep saying I’ll try. Still, I’d expand “self care” to include things like chatting with my parents on the phone, picking Tessa up from play practice and hearing how much fun she’s having, laughing with girlfriends as we celebrate a birthday, watching my dog try to “play” with a bug she’s found (the bug always ends up dead, which is sad, but watching my dog is funny), going to the theatre, watching the birds at our feeder and the ducks on the lake, going on college visits with Riley… Too often as I’m wallowing in my own fear and worry, I forget that I have so many resources available to me, and so many sources of goodness and encouragement around me. I instead try to work it out on my own, and I get frustrated and feel powerless that I can’t save myself when the waves of emotion threaten to overcome me. But I don’t have to do this myself, that’s the thing. I only think I do. And then I hear the still, small voice saying, you’re not alone. I have an amazing family, incredible friends, a supportive community, and a great God who knows everything about me and loves me anyway. So I kind of stink at having cancer, big deal. If I can show myself some grace and lean heavily on my resources when things are hard, the struggles don’t go away entirely but they do get lighter, because I’m not doing all the lifting myself.

I do hope to get better at having cancer, even if I don’t ever entirely figure it out. I also hope to get better at these tough weeks before scans – and I REALLY hope I have lots of years to work on that. Life is indeed good. I try not to forget that.

Speaking of which, remember when I said last year that I wanted to take a spring break trip with my family? That I didn’t want to wait for a bad scan to plan the tropical vacation? Well it just so happens that as I write this, all four of us are on a plane bound for Hawaii, a birthday surprise from my awesome husband. A few days at Disney’s Aulani resort, then a stay with dear friends who live on the island. I can think of no better way to get my mind off the upcoming scans than sun, sand, umbrella drinks and people I love. Making memories…oh rats, here I go crying again. That really has to stop. Oh, and since this is a public blog, let me publicly say that my house is not empty – I have two attack dogs (if you think what the one does to a bug is scary, you don’t even want to see what she does to intruders), and our house sitter is a ninja. So don’t try anything shady. Seriously.

As for me, for the next few days “self care” is going to look a lot like a drink with an umbrella in it.

Cheers.

“Breathe out with the pain”

So after boasting about getting a lighter version of the pneumonia/strep crud that was making its way through our house, I ended up getting it for real last week. So much for my older, stronger immune system. And then of course I hopped on a plane for a college visit with Riley, because that is what you do when you feel like you’ve been hit by a train. Now, I knew that I’d been on antibiotics long enough that I wasn’t contagious, but my fellow travelers did not. Fun fact: if you want the person in front of you to stop reclining her seat, simply start coughing like you’re about to launch your lung into her lap. She may have given herself whiplash getting that seat back into its full upright position.

It was a fine visit, despite my health, and I was able to walk around campus pretty comfortably and with only a slight limp. For the previous college visit I was still using a cane to keep me steady on my feet, something that I thought made me look distinguished and kind of badass, but I was startled to find out that not everyone saw me like that. Starting with the woman who, when speaking to me, talked VERY LOUD AND SLOOOOWLY. Like because I had some walking issues I was automatically hard of hearing and didn’t speak English or something. It made me want to hit her over the head with my distinguished/badass cane, and it made my heart hurt for people who have to put up with this kind of thing all the time.

So I’ve returned to most of my exercise classes, and I’m steadily working my way back to my pre-surgery fitness level. The flexibility, however, is definitely going to be a bigger challenge. I think my tendons, ligaments and such are so very excited about the new hip that they’ve clamped down on it in a sort of über hug that makes movement a bit of a challenge – either that, or they’re so angry that someone came and cut them all up AGAIN that they’ve erected a wall of scar tissue to keep this from ever happening again. I personally prefer the first scenario, as I like to think that my body is on my side, but whatever. Things are tight, we can just leave it at that.

Apparently over the six weeks that I’ve been gone, my spin class instructors have fallen in love with Tabata. Tabata is a form of interval training, or at least that’s what they tell us. It’s a Japanese word that I think translates roughly to “I can’t breathe,” and it’s a really nice way to return to exercising when you’ve taken some time off. Not really.

But the thing about being breathless is that it reminds me of something my friend Joy said to me. You remember her, right? The pillow whisperer? She’s a nurse and came over to my house to help me wrangle pillows and other props so that I could get some sleep. Anyway, I remember that at one point, when she was trying to help me roll onto my side, she saw me wincing and coaxed, “breathe out with the pain.” Yep, I’m a breath holder. When something hurts or I’m stressed, or even just concentrating hard, I don’t breathe. Specifically, I don’t exhale. I just hold it. “Breathe out on the pain,” she repeated, and I did. And guess what? It helped. I used that a lot in my recovery after that – with each movement that I knew was going to hurt, I made a conscious effort to breathe out on the motion.

I’ve thought about that quite a bit since then, and even though things don’t hurt as much as they once did, I still catch myself holding my breath. When I do, I try to think, “breathe out on the pain.” And I realize quite often that even if it’s not physical pain causing me to hold my breath, it’s something – stress, emotional hurt, worry – and that holding my breath means holding onto whatever that is. Exhaling doesn’t magically make it go away, but it’s still a physical release, a letting go. And exhaling means you have to inhale (duh), and oxygen is good for you in a lot of ways, aside from just the keeping you alive part. Also, when you hold your breath and then release it, that first inhale is pretty sweet (you’re doing that now, aren’t you? It’s ok, take a second. I’ll wait…). Remembering to breathe sounds simplistic, almost ridiculous (like do I need to remember to blink or have my heart beat too?), but for me, it’s been huge.

I woke up this morning crabby. Too little sleep, a lingering cough, a document that I can’t for the life of me convert to pdf, and then a dog that decided on our walk that he needed to stop at a fire hydrant so desperately that he dragged me though a mud puddle to get there (and really, a fire hydrant? So cliché. I thought you were better than that, dog)…oh and did I mention that my next scans at Mayo are coming up in a few weeks? Yeah. I was totally holding my breath.

“Breathe out with the pain.”

Breathing out with the pain, with the bad, with the stressful… means breathing in with the love, with the good, with the hopeful. There’s no magic to it, just a reconnecting, redirecting, and a remembering that we breathe because we are alive. And it’s good to be alive.

Did I mention that this all came from a friend named Joy? True story.

The prisoner is free!

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… 🙂

“Self!”

Now one thing about having a blog is that whenever something particularly amusing happens, someone will roll their eyes and sigh, “Well I guess that’s going in the blog.” Yep, you betcha it is. For instance, my mom – she’s a serial butt patter. It’s just her way of showing affection, and she comes by it honestly. Her grandma was a sturdy, German farm woman who could send a child across the room with one of her “love taps.” Really, we lived in fear of them as kids. My mom’s love taps, however, are really just that – a loving little pat on the backside, reserved for her kids and grandkids. A sweet gesture, to be sure…unless she squares you on your incision. Not terribly painful, but it gets your attention. She felt so bad about doing it, but I reassured her I was fine, no big deal…until she did it again the next day…and the next…and the next. Ok, let me just stop to say this didn’t hurt me. To the contrary, it got funnier with each one. She never patted my good hip, just my bad one, and she always hit the bullseye with my incision. And, with each startled “Mom!!!” she’d always recoil in horror as she realized what she’d done. It got to the point that my gasp was more of a shriek, as I dissolved into laughter. Maybe I’d just been in the house too long, but it was funny to me. Probably because each time she did it with such a heart full of love. The last time, as I wiped tears of laughter from my eyes, she laughed too, and threw her hands up in the air, “Fine! Put it in your blog!”

So welcome to my little blog, full of hip surgery updates and fun times. With some cancer and RA thrown in, just for added material. So it’s been a little over three weeks post op and I’m continuing to chug along the recovery trail at a pretty good clip. My parents left the day after my last post, and Rich started traveling again this week. It has all gone just fine, but it was quite the luxury having my parents here. My dad fixed just about everything that was broken in our house, hung pictures and walked the dogs every day. My mom took care of packing lunches, going to the store, making meals and doing all the mending we’ve been saving up for her. They drove me to my doctor’s appointment and even patiently accompanied me on my pilgrimage to Whole Foods (it’s on the same street as my doctor! How can I not stop??). Seriously, they had everything covered. And it was nice having their company while I was stuck in the house.

Ok, on to updates…super exciting stuff, I tell you…I’m officially down to one crutch when I’m out and about – which is a little dicey with our weather, so I try to be judicious about when and where I venture out. “Crutches on Ice” just sounds like a bad Disney show, not something I want to experience firsthand. My lovely girlfriends continue to visit me, bring us meals and take me mall walking. “Bye! I’ve gotta go walk Jen!” is becoming a common refrain in various households. I promised to be a good girl and not stop and sniff everything… I’ve actually ditched the crutches around the house, since there’s always a counter or sofa or something within reach. “Old people call it furniture walking,” my mom informed me. Fine. Call it whatever you want, I call it the first steps to freedom. And my dogs have been terrified of my crutches, so they’ll actually come near me now. I’ve missed them, even if they’re total chickens. As I said earlier, Rich started traveling for work again this week, and it all went fine. Between Riley and my girlfriends everything was covered. Poor Tessa caught some really nasty bug and has been in bed most of the week, but she is still one of my biggest cheerleaders. And last night when she was feeling a little better, she set me up with my own Snapchat account. I’m still not sure what to do with it, but I feel very trendy having one. It’s good to feel trendy, because all I wear right now is sweatpants and slippers.

It really is a wonderful time in the recovery process, because improvements happen constantly. Every day I can do something new, or better or faster, which is encouraging. I know from doing this once before that it will plateau in coming weeks, so I’m enjoying it for now. I’m told that my incision looks fabulous (by people who don’t mind looking at incisions, a group of which I am not a member). And, I finally have all my steri strips off, a rather large accomplishment for me. Anyone who knows me is aware that although I’m pretty tough when it comes to pain, I am a puddle of weakness when it comes to things that gross me out. Like steri strips. I was told that I had to leave them on for a week, then they would start coming off by themselves, or I could gently take them off in the shower. I of course resolved to let them come off in their own time (um, because ewwww), but when making a mid mall walk bathroom stop this week, somehow one came off, only to reaffix itself on the backside of my pants. I didn’t discover this until I was home, so I have no idea how many people got to see me prancing around with one crutch and a steri strip on my behind. After that I resolved to get the rest off before they ended up in more embarrassing places. So that’s a little honesty for the “oh my gosh you’re so brave, so strong, etc” people: I am not always brave or strong. I have an inner weakling, and she’s grossed out by steri strips.

I also have an inner toddler apparently, because in my desperate desire to lose the helplessness that comes while healing from surgery, I’ve become prone to saying “I can do it myself!” quite a lot. And probably with the toddler-esque inflection sometimes. Rather ironic too, when it’s directed at one of my kids, who are just trying to keep me from falling down the stairs or some other catastrophe. One of my son’s first words when he was little was the defiant exclamation, “Self!” whenever I tried to do something for him. I am not a patient person, and it was just faster and easier for everyone if I took care of it. And yet, the other day, there we were: Riley biting his lip and trying mightily to be patient while I struggled awkwardly to carry more than I should with my free hand. “Can I get the rest of the stuff out of the car, Mom?” He asked. Gosh, he’s a good kid. “Yeah honey, you can. Thanks.” And I am reminded once again that while self sufficiency is a good thing, accepting help when you need it is good too.

Turning “Self!” into “Thank you.”

Yep. Think I’ll work on that one.

Big girl panties

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Hi! Yep, that picture is me in all my polyethylene-ceramic-titanium-ness (assuming I actually got the picture where I wanted in the post – if you haven’t noticed I haven’t mastered that quite yet). Today was my first follow up appointment and everything looks good. Had my bulletproof, waterproof bandage removed faster than you can say “leg wax” and staples taken out with only one round of Lamaze breathing. Made me regret going off my pain meds (but that first glass of wine was sooo worth it). Both the nurse and the physician’s assistant told me my incision looks great. I told them I’d take their word for it. Seriously, I’m not looking at that sucker. You can’t make me.

I brought my list of questions for the doctor:
1. How much longer do I take aspirin?
2. Can I start taking my vitamins again?
3. 12 weeks???? WTF?

Yes, I’m thoroughly bugged about movement jail being doubled from 6 weeks to 12. After much whining on my part, the surgeon’s assistant said we could probably lift part of the restrictions at 6 weeks. The surgeon only said, “We’ll talk at 6 weeks,” but he smiled when he said it, so I’m hopeful. In the meantime, I shall dutifully remain in movement jail, and I am trying very hard to have a better attitude about it.

And to explain movement jail, it’s a ban on twisting, crossing my legs (not much of a big deal) and bending more than 90 degrees at the hip (BIG deal). The 90 degree thing doesn’t initially sound like an issue, but it means I can’t sit on chairs where my butt isn’t higher than my knees, I can’t use a regular toilet (only a raised seat), I can’t lean forward when I’m sitting (like to avoid dropping food on my lap when eating); it means I have to park in handicapped spots because the only way to get in and out of a car without breaking 90 degrees involves opening the car door as far as it will go; it means I have to use assistive devices to put on underwear, pants and socks, as well as to wash anything lower than my knees when showering. Now, some of these things I’m handling quite well: for example, I’ve mastered the art of picking things up from the floor when I’m too lazy to get my grabber – it’s this slow, awkward lunge-type thing. Looks weird but it works. But seriously folks, the bathroom thing is a drag. We went to a friend’s birthday party last week and we didn’t stay long and I refused to drink even a sip of anything – BECAUSE WHAT IF I HAD TO GO TO THE BATHROOM?? Honestly, toilets just should not be this big of a deal.

Ok, end of whining. As I said, I’m going to try mightily to have a better attitude about the whole thing. And they were very patient about explaining the reasoning for the 12 weeks – apparently there was indeed a pseudo tumor in the hip, but when they went to get it, the hip capsule was so “scarred down” and tight from my previous surgery that they had to do a lot of debridement and other stuff to get at it. At least that’s the way I understand it. And there was metal debris to clean out after all, but it sounds like it wasn’t too big of a deal. Reading the surgery report they gave me today made me appreciate just how much work is involved in a hip revision – and how much artistry and “feel” too. For instance, there was one part that the surgeon tried 3 different ways before he was satisfied with how it felt. It made me so grateful to have a doctor as talented as he is. And grateful, too, that I chose general anesthesia – I seriously had the option of being kind of awake, but reading all about the power tools and the pounding and other heebie jeebie-inducing activities that ensued during surgery, I’m very happy I chose the long nap.

So that’s that. I’m getting around better and better, using only one crutch at home and working up to taking that out into the real world. I can even take a few steps without crutches, but Riley says I look like the Beck Bennett adult baby character from SNL. He has politely requested that I not do it in public. Sitting is still less than comfortable for long periods of time, but at least I have crutches next to me so people don’t think I have hemorrhoids.

And now for something totally different: cancer! Yes, I almost did forget with all this crazy hip stuff that I still have cancer (damn!). And I’ll try to keep this brief because I’ve already yammered on long enough, but I had another reminder today that if I listened to all the advice I gave my children, I’d be much better off. This week I received my schedule for my upcoming scans at Mayo on April 1, which reignited my uneasiness with a decision we made at my last appointment. My oncologist had suggested at the time that we start alternating liver ultrasounds with the liver MRI’s. In all my research, MRI’s are considered vastly superior to ultrasounds in terms of detecting metastasis, but my oncologist said he was concerned about the gadolinium exposure (the contrast they use in an MRI) that someone as young as me would get over the long haul by doing MRI’s twice a year. He also said that I’m thin enough that I don’t have any fat on my liver to block a good picture on an ultrasound. So basically he called me skinny and young, and seemed to think I had a long term to be concerned about – flattery will indeed get you anywhere. I agreed, but as time went on I felt less and less peaceful about it. Well, I got a little distracted with a certain hip thing, and never got around to calling. When I received my schedule with the ultrasound on it this week, I figured that was that, too late to do anything. However, after not sleeping a few nights this week, Rich urged me to call and ask about changing it. “But it’s already scheduled! I can’t!” I whined. “Call them,” he yawned and rolled over.

So here’s the ironic thing – I’m always telling my kids this: “Ask for what you want. The worst thing they can say is no.” And yet I felt so nervous and fearful about calling and asking that I almost didn’t do it. If it weren’t for the fact that I was costing my husband sleep, I might not have gathered enough guts to do anything at all. And even when I did put on the big girl panties and call, I immediately went into apology mode the second I asked: “I know Dr. Pulido thinks I’m a total nervous Nellie,” I back pedaled, “And if it’s too late and you can’t change it, it’s fine…I know I’m being a total pest…” My oncologist’s secretary was gracious and reassuring, and an hour later a scheduler called to say they had switched the ultrasound to an MRI. Just like that. Months and months of unnecessary worry over. Now I’m generally a strong person, and I know in my heart that I should NEVER apologize for advocating for myself, and as someone with cancer I know that in fact I have to be my number one advocate, but there are times when I really need to listen to what I tell my kids: Ask for what you want. The worst thing they can say is no.

So, my friends, that’s my gentle reminder to all of you. Don’t be a chicken when advocating for yourself. Don’t assume that you’re bothering people or being a nuisance if you are simply respectfully and politely asking for what you want. The fight that you’re fearing probably won’t even happen. Just ask.

Big girl panties on.

Progress!

Hi! Sorry for the lack of updates, but there’s not much exciting to tell. I get a little better every day, which is encouraging. And, I’ve been surrounded by great friends and family, so when I’m not sleeping I’m enjoying their company. Rich went back to work and the kids

Love my coach Sara! She doesn't let me forget to do those ankle pumps. Ever.

Love my coach Sara! She doesn’t let me forget to do those ankle pumps. Ever.

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went back to school on Tuesday, so my girlfriend Jeannine came over to be my nurse. That was a fun day, complete with my first official outing – mall walking. It’s absolutely pathetic how excited I was to get out of the house. I got passed by every 80 year old there, but it felt so good to be out and moving (and I’m coming for you, Mabel! Just wait till I’m stronger, you’re not going to know what blew by you). I took a three hour nap afterwards, but I did it.

Moving in general has been way better than I expected, and infinitely better than after my last hip surgery. I’m acing my PT exercises and – this is big – I can now get in and out of bed by myself. Now that may sound trivial, but it’s the difference between having to call for help every time I need to get to the bathroom and being able to just take myself. And one example of how little things can be huge.

Oh, and speaking of huge, the J Lo backside only lasted a few days, thank goodness. My left side is still decidedly swollen, but in a much less remarkable way. And that’s just fine with me.

All the lounging has taken a toll on my back – I mean, it’s just hard to recline without a recliner or to sleep hospital style without a hospital bed – and to spend so much of your day (and night) on your back. Enter my friend Joy, or as I like to call her, The Pillow Whisperer. Joy is a nurse at the hospital I went to, and when it became apparent that I was taking my pain pills as much for my back as for my hip, I called her. She is one of those servant-hearted friends who will drop anything for someone in need, and she did exactly that, coming over to our house to offer a pillow tutorial of sorts. Who knew we were doing pillows all wrong? She even showed me a way to legally lay on my side. Oh sweet relief! And it only took two people and five pillows to get me there. So thanks to Joy, I am resting much better. It is still massively more comfortable to stand or walk than to sit or lie down, but I figure that’s just nature’s way of making me do PT.

And, after a few nights I have mastered the art of getting onto my side without help. Ok maybe I shouldn’t call it an art yet – let’s be honest, it probably resembles a breaching whale as I attempt to launch myself and all my pillows onto my side. And I doubt it wakes Rich up any less than when he had to get up and help me. But I can do it. And it feels good.

I’m also starting to wean myself off my pain pills – not entirely, but a little – and so far it’s going well. I still have an enormous stash of bottles at my bedside, and thanks to the color-coded spreadsheet my dad made we are coordinating things very well – that’s is, if you don’t count the brief moment of hysteria that ensued when we thought I had accidentally taken a laxative instead of a stool softener. But I digress… Aside from the fact that they make me loopy and tired, I have to confess that the number one reason I want to get off the painkillers is because I’m dying to have a glass of wine. Is that shallow? I don’t think I even care.

So that’s the scoop for now. Things are going better than anticipated, which is a pleasure to report. I’ve now been out of the house a total of four times, and my mood improves with each outing. I’m getting around great on my crutches and looking to move to one crutch in a week or less. Most helpful for morale has been the continued love and support of friends and family. I love the prayers, phone calls, visits, texts and messages, and I’m so grateful to have so many awesome people cheering me on. It’s easy to have a good attitude when you have good support. Period.