Perspective

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Looking at my notifications on Facebook the other day, I saw one of those “memories” they periodically throw onto our news feeds – things we had posted that day in years past that they think we might want to remember. According to Facebook, seven years ago on that day I discovered that my hip was wonky beyond repair and would need to be replaced. It was a bit of a shock at the time, since I wasn’t in a ton of pain. I honestly thought I had pulled a muscle, but as the doctor (who had seen my MRI and knew better) examined me, contorting my leg in various, strange angles, he kept watching my face for a reaction. “You don’t need to be stoic,” he reassured me. I shrugged. “She’s stoic, isn’t she,” he said softly to my husband, who pretty much fell out of his chair laughing, “Oh if she was hurting, trust me, YOU’D KNOW.” Alas, despite the lack of obvious symptoms, the hip was indeed busted and would have to go. Months later, when the excruciating pain did arrive, I was promptly scheduled for hip replacement surgery. And. I. Panicked.

This was a big thing for me. A major surgery! I’d had two C-sections, but this? This was HUGE. I was terrified.

Now, those of you who have read this blog for even a teensy bit know that the hip surgery was just the warm up. I, however, did not know this. To my seven-year-ago self, this was a big deal.

Given the odd medical turns that my life has taken since then, I now look at my tragic response to the hip thing with a mix of embarrassment and amusement. Because come on. At the time, however, this was all I knew, and for me it was massive and terrifying. I asked our good friend and pastor to come to the hospital with me before the surgery because I NEEDED DIVINE HELP, PEOPLE. I was a mess. To the great credit of everyone around me, no one told me to suck it up and adult already. No, my people were kind and sympathetic and loving, and not a single one told me (to my face) that I was being a ninny. But I look back at it now and sort of wince. I made it a big deal. But you know what? At the time, it was.

What struck me about the Facebook memory the other day was the date: February 4th. Do you know what February 4th also happens to be? World Cancer Day. Oh the irony.

Fast forward a few years to my second hip surgery. My first artificial hip had apparently gone rogue and given me a whopping case of metal poisoning, along with a pseudo tumor just to make things interesting, so the bugger would need to come out. The hip replacement had to be replaced. Another big surgery. And I was… irritated. 

Not terrified, not trembling. Irritated. Really bugged. Annoyed, even.

The difference? Oh, a cancer diagnosis, two eye surgeries for radiation, rheumatoid arthritis, you know… stuff like that. 

Perspective. It’s a thing.

Our son’s birth twenty-some years ago was a dramatic event. After our first child, our daughter Christina, was stillborn, this next pregnancy was fraught with worry and residual grief. The pregnancy itself went smoothly, but the delivery ended up involving a frantic, emergency C-section when his heart stopped twice and my blood pressure plummeted. They got him out and we both survived, but just as my husband and I began to catch our breath and enjoy our beautiful, seemingly healthy baby, he was abruptly whisked away. Suddenly there were x-rays and echocardiograms and films being couriered to a cardiologist’s home in the middle of the night. It’s bad. It’s a heart defect. No, it’s a lung defect. No wait – it’s just pneumonia. Around the clock IV antibiotics in the NICU (neonatal intensive care unit) and he’d be fine in a week or so. Of course, it took us a while to accept the “he’ll be fine” part, but as the days stretched on it became obvious that he was indeed getting better. We caught our breaths and relaxed into our new routine at the NICU. And as we relaxed, we started to notice our surroundings, got to know the nurses and heard the stories of the other parents who came to nervously hover over bassinets full of wires. Now, as a full term baby (and also nine and a half pounds), my boy was a bit of an oddity in the NICU. In fact, he looked like a sumo wrestler compared to the other, mostly premature babies. It inspired a lot of questions that sounded like you’d hear in a prison: “So what are you in here for?” On the day he finished his antibiotics and was proclaimed healthy enough to go home, I noticed another mom at a bassinet nearby looking over at us wistfully. I started chatting with her, cheerfully asking her when her baby would also get to leave. “When he can suck, swallow and breathe on his own,” she responded quietly. My heart dropped to my toes. We had been through an emotional hell that week, faced with the possibility that we could lose another child, and it felt like the very worst thing in the world. But this sweet mama had just silently watched us do achingly normal parent-type things – like trying to put a onesie on a wiggly, noodle-necked baby for the first time – all the while wondering when or even if she’d get to do the same thing. It was a stark reminder that our story wasn’t the only story in that NICU.

Perspective.

Perspective gives us the opportunity to re-orient ourselves in the larger picture. Heck, it allows us to acknowledge that there even IS a bigger picture. It helps us see that not every thing that feels huge will always be huge. Despite clichés like, “This too shall pass,” and “It could be worse” (a Minnesotan specialty), perspective does give us the opportunity to understand that where we are is not THE place, it’s just A place. And that understanding can be a comforting, hope-affirming gift.

But it can also do the opposite, as evidenced by my harsh judgment of the trembling, hip-surgery-fearing, seven-year-ago me. Sometimes perspective emboldens us to view others with a patronizing side-eye when they have the audacity to believe that what they’re going through is a big deal, yet we’ve decided that it’s not. Pffft, why is she being so dramatic? It’s nothing.

Well, to them it’s hardly nothing. To the contrary, it’s likely the most not-nothing they’ve dealt with thus far in their life. But unfortunately perspective can turn things into a suffering contest, when, repeat after me, friends: There. Is. No. Contest.

Before my first hip surgery, there were a few folks who’d brush my fear off with a, “Well you know, knee replacements are WAY worse.” Ok awesome. I’m so not scared now, thank you.

Then there’s a sort of reverse perspective phenomenon: we see someone else’s situation as so horrifically tragic and worse than anything we could possibly imagine, and we decide we’re no good to them. There’s no way we could help because we can’t even begin to relate, based on our own experiences. It becomes an excuse to not engage, and we end up running from someone who just needs our presence.

When we see our own stories as part of a larger narrative, we gain perspective. And when we acknowledge and honor the importance of other people’s stories, we gain an opportunity.

Perspective can be good or bad, helpful or hurtful, based on how we use it.

We have so many opportunities to come alongside one another when a fellow human is going through something that to them is big. To just show up, without judgment, and simply love on them. When we let our own perspective give us permission to decide whether another person deserves to feel the way they do, we create this weird hierarchy of suffering. And instead of coming together, we distance ourselves from people who could really use an ally. 

Call it grace, call it generosity, call it not being an a-hole, it doesn’t matter. The difficulties each of us has faced in our lives are an invitation to be empathetic, not a license to judge. I’d like to think that the current me would be kind to the seven-years-ago me. But wow, she was such a ninny. 

Ok, I’m working on it

Grace > karma

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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.

“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.