Signs

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So here’s the rundown on my Mayo trip last week. Sorry it took me so long to post, but the treadmill of life has been whizzing along at a brisk clip, and I had to once again return from Mayo and jump back on right away. No time for quiet contemplation (will that ever happen??). I did get to sing at Easter services and even lead the Call to Celebration – pretty powerful stuff to be talking about resurrection when you’re feeling reborn yourself. And so cool to celebrate with people who have been faithfully, tirelessly praying for me and encouraging me throughout all this.

So back to Mayo… First off, this picture is evidence, I believe, that someone at Mayo has a sense of humor – it’s the sign outside the room where I had my IV put in before my MRI. But then I asked if I was getting a pedicure or neck rub in addition to my IV, and the nurse acted very confused, so obviously not everyone is in on the joke. In fact, he proceeded to get extremely serious about my veins (to be fair, they are unusually slippery suckers), going so far as to use what looked like a stud finder to locate his target. He still had to stick me twice. In the “relax room.”

But I have to say I’m getting better at MRI’s with each one I do, and now I’m not panicky at all. Just a wee bit nervous. As long as I have my magic eye mask, I’m good to go. And music – a lot of MRI places give you headphones so you can listen to music while you’re in the tube, but not Mayo. At least not for their liver MRI’s, probably because you have to listen to directions about when to hold your breath and when to breathe “normally.” Like there’s normal breathing when you’re stuffed in a tube. So a few times back when I told my best friend Karen that I was music-less, she resolved to fix that. Since then, right before every MRI, I receive a text from her containing the lyrics to a song pretty much designed to drive me crazy in the tube. I usually get the text while I’m in the waiting room, and then gasp and burst out laughing, thereby confirming all of the other patients’ suspicions that I’m totally nuts. It does get me a large dose of personal space however, so there’s that. Anyway, I like you all too much to tell you what this last song selection was. Suffice it to say, part of the chorus doesn’t even involve real words, and it took days for me to purge it from my mind (oh and Karen, my family thanks you for that as well, because you know I sang it out loud every time it returned to my brain. They send their love).

Among other things that made me laugh during my time at Mayo (you had no idea scans were so hilarious, did you?) was the introduction of a new species to the ophthalmology waiting room – a child. Yes, a foreign species indeed, as I am usually the youngest patient in the room by a good 20-30 years. It was refreshing and entertaining, to say the least, but no more so than when the lad took out a laser pointer and began playing with it. I had to leave for a moment so I could redo some pictures that the tech in training didn’t get quite right – and the only thing more fun than looking directly into an industrial strength floodlight while a tech tells you not to blink is doing it twice – but when I staggered, half-blind back to the waiting area, I found Rich sitting with his lips firmly pursed together, trying not to laugh. Apparently, the boy continued to play with the laser pointer after I left. As he directed it around the walls, ceiling and floor, it caught the eye of a woman who, after following the dot of light studiously, pointed it out to her husband, who proceeded to also track the mysterious red dot. One by one, anyone who wasn’t too dilated to see it joined the audience, mesmerized by the constantly moving orb, never seeing that the source was the little boy. The end result was a room full of white heads moving in perfect unison as they followed the dot – much like those YouTube videos of cats doing the same. And to think I missed it. Dang.

The levity was appreciated, as the time at the end of the day in the ophthalmology waiting area is always the most fear-filled time. Unlike the earlier parts of the day where we move from building to building for various tests, this period of 3-4 hours involves sitting in a special (and by special I mean ugly) waiting area, and periodically being called for eye tests. Test and wait, test and wait, test and wait… And with each test we count down until the tests are over and we see the doctor for the results. Oh, and when we finally see the doctor it’s not The doctor – it’s one of his fellows. The fellows do a complete eye exam, and pour over charts, pictures and things on the computer screen written in such a small font that even Rich with his non-dilated eyes can’t read it…and they tell us nothing. We are dying inside, and they are looking at all the results that will determine my fate… in total silence. It’s horrible. I sit and shake and sweat, even though my hands are ice cold, and they say nothing. Until this last time. I must admit I found myself initially doubting that this particular fellow was even old enough to be a doctor (wow, am I that old? Doctors are looking young to me?), but this angel walked in, sat down, looked me in the eye and pronounced, “your scans all look good, let’s just get that out of the way.” And she smiled the sweetest smile, adding, “I know that’s what you’re waiting for.” Um, YEAH! Oh, sweet relief! So then she did all the things the fellows usually do, but I didn’t care how long it took, because I knew my results. Ok sure, I didn’t know anything about my eye, but the cancer hadn’t spread, so who cared? Not me. “Text everyone” I mouthed to Rich, and he began to happily tap on his phone while the the doctor completed the exam. Seriously, I can’t begin to describe the relief.

So I wasn’t worried at all and could fully enjoy it when my oncologist sailed into the room, smiling broadly. “You’re doing so well!” He exalted. The only glitch, if you could call it that, is that my tumor is beginning to bleed around the edges – totally normal for a shrinking tumor. Yes, you heard that right folks, the tumor is continuing to shrink! So that’s good. But the bleeding means I have to start Avastin injections so it doesn’t hemorrhage and cause me to lose all the sight in that eye (because I do still have some, and it would be nice to keep what I have). That’s not so great, but it is what it is. Did I mention the injections are given directly into the eyeball? Yes, commence squeamish writhing. I’m sure they’ll numb me up, but it’s the gross out factor that has me concerned. I’ve tried to look up the procedure so I can know what to expect, but I end up awash in heebie jeebies every time, so I’m done researching. Like I’ve said, I’m tough about physical pain, but I’m a total ninny when I’m grossed out.

Overall though, the appointment was going swimmingly, as we all celebrated my clear scans and shrinking tumor. Then I wrecked it. “So, about my RA meds….” I said innocently enough, and that was it. He had indeed received the note from my rheumatologist about going halfsies on the plaquenil (like the oncologist had suggested last time) and adding another drug, with his permission. He had received it, but hadn’t read it apparently, because his assistant had to point it out to him. For whatever reason, he gets angrier about the plaquenil each time we talk about it, and this time he was massively ticked. He started going off about potential retinal toxicity – “and you’ve only got one good eye!” So here I thought he was going to be pleased that the rheumy listened to him and cut my dose in half, and instead he’s on a tirade about why I shouldn’t be on it all. “So what about the sulfasalazine that my rheumatologist is recommending in addition to it? Can we do that?” I asked weakly. “Fine, fine,” he grumbled, “But I hate that plaquenil. You can do 200 mg one day, then 100 mg the next and keep alternating. But I don’t like it.” Ok… “Soooo if you don’t want me on the plaquenil, what else can I take?” I pressed. He threw his hands up in exasperation, “Ask your rheumatologist! That’s his job!” Oh ugh. Seriously, just ugh. I totally understand where each of them is coming from though. Dr. P. wants to keep me alive and save my vision. Dr. W. wants to keep me from ending up disabled. I get it. But it’s tough being in between the two, especially when you don’t have a medical degree. Dr. P. sighed, rubbed his face and wearily sat down, “I just wanted to be happy about your case,” he said softly, “We had good news and I just wanted to be happy.” He’s a good guy, he really is. And when you treat a cancer that kills half the people that get it, I’m sure you have to deal with plenty of bad news. So I didn’t push it any further – and really, there wasn’t anything to push. The whole 200/100 alternating dose thing was going to be a pain, but whatever. I’d talk to my rheumy about it later. For now, there was a triumphant blog post to write and a celebratory martini to enjoy.

I did call my rheumy’s office the next day, and just heard back that we’re ditching the plaquenil all together and trying to go with just sulfasalazine. We’ll see how that all goes. In the meantime, I’m scheduled to start the eye injections on the 22nd. Hopefully I will be reporting back that it was no big deal, and that I’m super excited for my next one.

So that’s the scoop from last week’s scans. I’m off now to make one last college visit with Riley – well two visits actually, just on back to back days, so it’s really just one trip. The poor kid is having a terrible time deciding on a school, to the point that when one of our friends asked him what he’d be looking for this weekend he deadpanned back, “A sign.” He’ll figure it out, I’m not worried, and all the schools are awesome, so he really can’t screw this up. But I have to say, I’m just sorry to see these mother-son trips end. They’ve been such a special time for us together as he prepares to take this huge leap to the next chapter of his life. I’m excited for him, because he is so ready and he’s going to do great, but I’m sad for me. Because I’m going to miss him so much it hurts just thinking about it. A bittersweet time, to be sure. And in the back of my heart always resides an intense gratitude that I get to be here for all this.

Life really is good. Tough at times, absolutely, but most definitely good.

Off now to look for signs…

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Martini time!

imageWell you can’t say you weren’t warned about the brevity of this post. My eyes are indeed still blurry, but my scans are CLEAR! I’ll elaborate in another post, but the bottom line is my liver and lungs look good, and my tumor is shrinking. It’s also bleeding, so I will now be getting Avastin injections in my eye to prevent a major hemorrhage that would leave me totally blind in that eye. Yes, I’m grossed out. No, I’m not really thinking about that right now. Because, um, did I mention that my scans are TOTALLY CLEAR? Because they are. In case you missed that. Oh, and my oncologist and my rheumatologist completely hate each other, but I don’t care right now. Because I just renewed the lease on this body, and I am pumped. Shoot, now I’m going to have to lose that vacation weight…

I wish I could explain it or describe it, because it was beyond amazing, but I absolutely felt your prayers and thoughts today. I am so humbled and grateful, and “thank you” doesn’t seem quite adequate, but it will have to do until I think of a better way to express it. Thank you. Thank you for coming on this journey with me, for lifting me up, for supporting my family, for loving us and encouraging us. Thank you for your endurance and your perseverance. Thank you for being awesome. Because you are.

Now if you’ll excuse me, it’s martini time…

Big Things

“Well we pretty much ate Oahu.”

My son’s observation as we were leaving Hawaii Sunday night isn’t much of an exaggeration. We really did sample everything we could (except Spam. Because that’s just wrong. And it’s made here anyway), and while we’re all coming home a little heavier, our spirits are most definitely lighter. It was just so exquisitely beautiful there, and so relaxing to simply be together as we enjoyed everything. And I can honestly say that I didn’t have any sleepless nights worrying about my upcoming scans. Seriously. I think we need to go to Hawaii before all my Mayo trips from now on.

Speaking of which, I’m at Mayo now. Did my blood work today, then we start bright and early with the MRI and chest X-ray tomorrow morning, followed by all the eye exams, pictures and ultrasound in the afternoon. And finally, the moment of truth with the oncologist at the end of the day. If all goes well we’ll be home in the early evening, and I will be posting very good news here sometime tomorrow night. I have rehearsal for our church’s Easter services as soon as I get back, so don’t worry if you don’t hear from me right away. And it’ll probably be brief – something along the lines of, “My eyes are still blurry, but my scans are clear! Having a celebratory martini!” Or something like that.

In the meantime, I thought I’d share one of my observations from my last Mayo day back in September. I never wrote it down, but I found myself thinking about it at length on the plane ride back from Hawaii. And I wonder whose stories I will cross paths with tomorrow.

Everywhere I go at Mayo, I’m surrounded by people going through Big Things. Most of the time I can only study their faces and body language and wonder what their story is, but on a few rare occasions I’ll learn a little about what they’re going through. The couple with the newborn baby that we met in line at the coffee shop, smiling and almost giddy, hardly able to even believe what they were telling us: that she had received a liver transplant only a year or so before, and then got pregnant and gave birth to a healthy baby. I imagine that after so many desperate, awful visits to Mayo before her transplant, this routine check up felt downright triumphant. We ooh’d and ahh’d over their sweet baby, and allowed ourselves to share in their joy. Because for the most part, we don’t see a lot of joy at Mayo. We haven’t seen a lot of outright grief or despair either. Mostly it’s just variations on grim expressions, set jaws and contained emotions. And nervousness. Lots of that. And as I said, most of the time I can only wonder what brings them here, but I know that most likely it is a Big Thing. As I was waiting for my MRI last time, I found myself sitting with another woman about my age. It was the secondary waiting area, so we were prepped and in our gowns. I noticed that, like me, she was nervously fidgeting while trying very hard to not look at her IV, and when she cracked a joke after one of the nurses left, I knew I’d found a buddy. We began to exchange humorous comments about this and that, laughing nervously together. She told me they were running about a half hour behind, so we came up with ideas for activities all of us could do while we waited – a hospital gown fashion show, a dance off – we thought we were hilarious. We never asked each other why we were having MRI’s, but it was understood that keeping the mood light was a good thing. The others in the waiting room, if they didn’t find us hysterical, at least tolerated us. We were probably a good distraction. And then a woman entered with what looked like her mom, which was odd because no one else had their significant person with them. The woman looked like she was in her late twenties or early thirties, and she went over to a chair and just stood there and stared at it. Her mom sat down in the chair next to it. “Come on, sit down, it won’t be that long” she beckoned to her daughter. “Actually, they’re running about a half hour behind,” my comedic partner piped up, “But it’s ok, we’ve found some fun things to do.” Much to our disappointment, neither the woman nor her mother seemed excited or amused by the offer. In fact, the woman got extremely agitated and began to pace. “I can’t do that. I can’t!” She repeated as she paced. I scowled. Well she was no fun at all. And why couldn’t she wait? What, did she think she was better than all of us? Please. We all had to wait, suck it up. She turned tearfully to her mom, “I can’t wait,” she said again. “You have to wait,” the mom calmly responded. The woman paced a few more times, then announced “I’m going to the bathroom,” and marched out. “It’s just around the corner,” the mom called sternly after her, “don’t go any farther than that.” Silence. “Flight risk?” my buddy quipped. The mom wearily turned to us and explained that two years ago doctors had told her daughter that they had done all they could do and that she should go home and enjoy her children. She had already lasted longer than anyone expected, but still… she was young… and her kids were young. This MRI was most likely going to tell them that the end was coming soon. We sat in stunned silence as we listened. No wonder she couldn’t wait. My comedic partner bowed her head and whispered exactly what I was thinking, “I wish I could give her my spot so she wouldn’t have to wait.”

Everyone at Mayo has a story. And really, when you think about it, everyone everywhere else has a story too. The woman in Target, the guy at the car wash, the kid at the mall – maybe they’re not all facing a terminal illness, but any one of them could be dealing with a Big Thing. I wonder how quick I am to judge sometimes, just like I did in that MRI waiting room, and I wonder how things would be different if we all judged slower and loved quicker.

And really, with the exception of picking up hitchhikers holding chainsaws, you can’t go wrong by being nice.

Looking forward to sharing good news with you all tomorrow night. Thanks so much for all the love and support you continue to shower upon my family and me. Your prayers, positive vibes and messages sustain us and lift us up in ways we can’t fully express. We are blessed, and we are grateful.

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.