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.

Big girl panties

image

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.