Month: March 2015

Self care

/ Jen / 8 Comments

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”

/ Jen / 5 Comments

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.