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

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.

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.

Oh no, J Lo!

First full day home and I’m continuing to do just fine. I think the only thing I miss about the hospital is the bed – not because of its superior tempurpedic qualities, but because its bendy-ness is fan

Rocking crutches at the hospital

tastic when your resting positions (and ability to get there) are limited. Yeah, sleeping on a conventional bed last night was rough. But there’s only so much you can do when you’re confined to sleeping on your back (and can’t cross your legs over your midline, so no interesting twisty stuff or anything). The way I see it, I have three choices for sleeping positions: looking straight ahead, turning my head to the left and turning my head to the right. I’m going to have to start getting creative with pillows.

The other thing that’s different about being home is mirrors. There aren’t a whole lot of mirrors in hospitals, and I believe that’s intentional. Get home, however, and there’s nowhere to hide. And I’m not even talking about my didn’t-get-washed-in-days hair, or the lovely yellowish cast to my skin when I wake up (which is a lot, because I sleep most of the time). Or the fact that they apparently used adhesive ALL OVER my body. And I’m not going into the excessive body art that my doctors felt compelled to create on the canvas of my leg and backside (I’ll just add that I’m pretty sure it’s beyond initials. Maybe a coded map. Or gang signs, I don’t know). No, here’s today’s entertainment: my butt. To be fair, we were warned that the swelling would be greater this time, but holy bountiful booty, Batman! Initially when it started yesterday, Rich and I just stood in the bathroom and and observed it with a sort of reverence. “This is what I would look like with hips.” Yes, but it didn’t stop there, and as the swelling continued to spread up my back and down my legs, the thought came – what on earth am I going to wear for pajamas? After gutting our closet, Rich was able to produce an old pair of sleep shorts with shot elastic, so in the end (ooh, bad pun) I did have something in which to sleep. But not without quite a lot of giggling. And in case you’re curious, yes, there does exist a point where this won’t be funny anymore, but considering that I’m not close to going out in public yet, my J Lo-ness might as well entertain us.

I think for the most part Rich is managing the whole taking care of me thing admirably. Last time, my parents were here to help out, but due to nonrefundable airline tickets, they won’t be here till Wednesday, so Rich is on his own. Like I said, he’s doing really well keeping up with the meds schedule, PT, food, kids and dogs. Because he’s trying to do so much, I try to go easy on him, but I do have my high maintenance moments. Take, for instance, the magazine in our bathroom. We have a magazine rack in front of our toilet, which I don’t usually pay attention to, but given the tortoise-like speed at which I am moving right now I notice everything – including the issue of our health club’s magazine front and center in the rack. And the guy on the cover is looking at me. Me, in all my doctor-tattooed, Kim Kardashain glory. The front of the magazine exults, “Be 10% Happier!” But honestly, how can I be 10% happier with some strange man watching me use the facilities? So I had to ask Rich to move him. High maintenance, I tell you. Or, given the painkillers, maybe we just leave it at high. Who knows.

So that’s it for today. Every day gets a little better, a little easier. And being confined to bed could be very lonely, but Rich and the kids have been so sweet about keeping me company, and I’ve been loving the texts, calls and emails, so I’m fine hanging out up here. Thanks again, mighty village! You all rock. Oh, and I’m including a picture from the hospital. Pre-swelling, of course. This is a G-rated blog, people.

One day down, 12 weeks to go

Good morning! Sorry I didn’t post last night. I had double vision and some nasty nausea, so writing was out of the question. I feel much better today.

So surgery went well I’m told. This was Rich’s post to my Facebook wall, for any of you who didn’t see it:

“Jen is out of surgery and in the recovery room. Likely to be there at least 90 minutes. Dr said things went well but they did go long so he could get the sizing right so that she’s not shorter on the left than right. Dr said there was no breakdown at all of the parts he used last time so it must be that her body simply didn’t like having metal on metal parts. He said the original work still looked perfect (I think he was sad to have to take it out – perhaps he’s a little bit of an artist on top of the perfectionist). He says she will have more limitations for longer during this recovery. No 90 degree bending for 12 weeks instead of the normal 6 and she’s to expect more swelling that will take longer to shrink.”

Did you hear that? 12 weeks!! Ugh. Not excited to be in movement jail that long. And, the swelling he’s referring to is what I called my saddlebag last time – aside from the usual unsightly-ness of a saddlebag, it just looks weird having only one. BUT I’m on weight bearing as tolerated, so that’s a plus. And I don’t feel like I’m going to barf anymore, another plus.

So the nausea…turns out that I didn’t get Gary as my anesthesiologist, but I did get Jen and Lora. Diane had shared my Mayo charts with Jen, so she knew about the triple, but apparently due to side effects of one of the drugs, they just do two of the three drugs. Suffice it to say, the double was not quite enough, but oh well.

I start my group therapy sessions today. Riley said it sounds like we’re all going to sit around and talk about our feelings, but it’s actually physical therapy. And after the second session I get acupuncture, which I’m very excited about. My pain is pretty good, all things considered, but a nurse warned me that it gets worse today, so I’m not getting cocky. Yet.

Because of the nauseau they’ve been cranking the fluids in my IV. That, combined with their eagerness to get me up and moving meant I made 4 trips to the bathroom yesterday – walking! My mobility is really good compared to last time, which is awesome. What was not awesome was trying to “void” as they like to call it here. Apparently one of the side effects of anesthesia is that your body forgets how to pee. I felt like a toddler sitting on the toilet, legs dangling, wailing, “nothing’s coming out!” And I mean, really – I’ve had children, I pee when I don’t want to (if you girls know what I mean), so the irony of the situation was not lost on me. But it all seems to be ok now – aren’t you glad I shared that? I’ll get off my drugs and read back over these and be mortified, I’m sure.

Speaking of drugs, there’s more to report but I don’t remember it. Something about my bone is really thin somewhere and that’s the reason for the 12 weeks of movement jail. And I know there was stuff to clean up in there so I think that’s the reason for the extra swelling. Not sure. Rich has told me at least three times, so I probably won’t ask him again until I’m sure I can remember it.

Thanks so much for all the thoughts, prayers and messages! Let the healing begin!

Surgery tomorrow

Let me just say that I had grand ideas about writing this post tomorrow morning, leisurely sitting at my kitchen table, sun streaming through the windows, tea in hand. Since my surgery wasn’t scheduled till 1:30, I’d have time once the kids were off to school to finish packing, enjoy my clear liquids and thoughtfully write my blog post.

And then the surgeon’s assistant called at dinner time tonight to inform me that my surgery had been pushed up to 9:30 tomorrow morning. Yup. That’s a 6:45 report-for-duty time.

So I am instead running around like a total nut job, trying to finish everything on my rather ambitious to-do list. And really, at this late hour what’s it’s turning into is an exercise in moving most of the items on that list to a new one titled “After.” After? When is after? I don’t know, but at this point I’ve managed to rationalize why quite a lot of items belong on that list instead.

So anyway, the hip surgery…With Christmas and the Disney trip and other stuff, I just haven’t had any time to get worked up about it. Probably a good thing, really. Having done this before, I’m more relaxed in some ways. For instance, I don’t think I’m going to be as nervous about the surgery itself. With the last hip dealio, plus the 2 eye surgeries, I’m starting to get used to the drill. And, my friend Diane works at the hospital and is coordinating my anesthesia team, so it’s cool knowing ahead that I’ll have awesome folks in the OR with me – my anesthesia posse, if you will: Gary, Jen, Lora and Karen – my new BFF’s. Speaking of anesthesia, it only took me calling the Mayo Clinic every other week for two months to get a copy of my anesthesia records from my surgeries there. I am totally serious. But it was worth it, because Mayo seems to have solved the nausea after anesthesia riddle. They call it “The Triple” and I swear, it’s magic. No post-surgery barfing is a glorious, wonderful thing. But oh boy, you’d think I’d asked for the Colonel’s secret blend of eleven herbs and spices or something. It’s all good now though, because I have the recipe and I passed it along to Diane, who will hand it off to my new best friend, Gary the anesthesiologist. Good to go.

Of course, knowing what to expect also has its drawbacks. I remember very clearly how not fun the first week after surgery was. The level of helplessness is off the charts, and totally stressful for those of us who are very accustomed to self-sufficiency. I’m also not looking forward to the dreaded “no bending more than 90 degrees” rule. It lasts for 6 weeks and is basically movement jail. But I have my assistive devices all laid out and ready, and I’m going to just take a deep breath and keep reminding myself that it’s 6 weeks, not 6 months. Suck it up, cookie.

The surgery could be really quick and smooth, or it could be more complicated, depending on what they find when they get in there. If I get to keep my cup (the hip socket liner that’s already in there), and there’s no metal debris or funky stuff to clean up, this could be a way easier surgery than my first one. A lot of the pain and swelling and stuff from the first surgery came from the fact that they had to dislocate my hip – and apparently had a very difficult time doing so – and they won’t be doing that this time, since I’m getting a traditional hip replacement (read: they’ll cut off the top of my femur. Yuck, I know, but no dislocation necessary).

I’ll try to get a quick blog post up tomorrow if I can, just to (hopefully) share the good news that my surgery was successful, devoid of surprises and thoroughly boring and unremarkable.

I’ve had a few people ask about visitors. Yes, I would love visitors. I absolutely adore having people come see me in the hospital. That said, last time I fell asleep on every last person who visited. No exceptions. So, if I end up on the same cocktail of painkillers that I was on last time, you can count on me falling asleep mid-sentence if you visit. Just promise me that if it’s funny and you put it on YouTube, I get a cut when you get rich and famous. I’ll be at Abbott Northwestern Hospital if you want to give it a try. Just text me or Rich first so we can tell you if it’s a good time (oh who am I kidding – text Rich and he’ll wake me up and ask me, that’s what’s really going to happen). I’ll also be thrilled to have visitors once I’m home, so remember that if you’re bored next week.

I still have a few things left to do that I was unable to rationalize putting off – things like packing. You know you’re having old person surgery when the packing list the hospital sends you includes things like denture cleaner. Seriously. It’s funny watching nurses’ faces when they come in my room, totally not expecting to see a 44 year old. So I guess that’s a silver lining of sorts – I feel decidedly youthful. Well, until they have me using a walker. Then, not so much.

Thanks so much for all the well wishes and prayers! It’s been uplifting reading all the texts and Facebook messages. Prayers appreciated for tomorrow – for Dr. Anseth, my anesthesia team and especially my family; and for an easy, boring surgery with no drama or extra excitement.

And now to the rest of that to-do list…

Running – faith, trust and pixie dust

I really did have the earnest intention to blog while on vacation, but well… I was on vacation. Played hard in Disney World with Rich, Riley and some awesome friends for 4 1/2 lovely days and barely touched my iPad. And I’m not sad about that. But I’m having surgery in a few days, and I haven’t really said much about that (probably because I haven’t thought much about it), so I need to bring you all up to speed before I head into a drug-induced la-la land for a bit.

But first, Disney…

We went for the marathon weekend – planned before my hip figuratively went south, of course. Tessa was originally going to be with us too, but she ended up having a dance competition and stayed back with our good friend Christine. Saturday, four members of our group and I ran the half marathon. And yes, as you can see from the picture, I ran in a Minnie Mouse costume. I’ve actually run the half marathon and full marathon (called the Goofy Challenge when you do both) several times, and I’ve been Minnie every time. It might not be very aerodynamic (seriously, those ears are not good in a headwind), but it’s cute, and when in Disney you should always err on the side of cute. It’s Disney World, for crying out loud. Going into the whole deal, I had no idea what to expect from my body, since generally it is considered good preparation to actually run a bit before you race, and I had done next to nothing. One five mile run in the fall after my running embargo was lifted, and it hurt a lot so I didn’t do it again. I had full permission from my orthopedist to run this, so I wasn’t doing anything naughty, but this was a total unknown. I did know one thing, however: it could be my last race. I don’t know if I’ll be allowed to run after the hip replacement. So I decided that I would complete it, even if I had to walk the whole thing, even if I had to drag myself across the finish line with my lips.

It did sound a little crazy, especially when I heard other people say it. As we waited in the staging area before the race, someone asked me my goal time and I think I answered vaguely that I wasn’t sure. “She’s having her hip replaced on Thursday,” Rich explained. All around us eyes widened and eyebrows shot up, with varying expressions of awe, horror and oh-my-gosh-you-are-the-dumbest-person-ever. Yes, it sounded totally nuts.

But oh man, it was so fun. Turned out I ran just fine. Maybe my body just remembered how to run, maybe the euphoria of running a race again and doing it in freakin’ Disney World masked the discomfort. Maybe I’d found some pixie dust, who knows. But for 13.1 wonderful miles, I felt my feet against the pavement, the rhythmic swinging of my arms, the wind in my hair (and pushing against my very cute mouse ears, ugh). I heard the happy chatter of runners around me, the thump of music playing along the course and the at times deafening cheers of spectators. All around me was pure joy. Ok, a little suffering too, but mostly joy. And I loved every second. As the finish line loomed ahead I tried to look around and see everything, to take it in and memorize it all. Just in case.

As wonderful as it felt to run, walking afterwards was a different story, as it was then that my lack of training made itself known. My hip felt fine, but every muscle in my body angrily screamed curse words at me with each step. So, even though I was signed up for the full marathon the next day, I caved to my potty-mouthed muscles and skipped it. Not an easy choice, because it would have been marathon number 30 for me (I do love nice, tidy numbers), and the medal for doing both races was especially cool this year, but my John Wayne-esque walk was pretty solid evidence that it was a bad idea. And I’m so glad I passed on it, because it meant I had a prime spot at the finish line to witness my son finishing his very first marathon. It is so cool to see your kids come to love things you love. And pretty special that as I was potentially wrapping up my distance running years, he was starting his.

Ok so talking about the trip took longer than I planned. Tell you what – I’ll hit you with the nitty gritty on the upcoming surgery in my next post, is that cool? I know you’re all just dying to know all about it. I mean, what is more fascinating than a hip revision? Sexy stuff, I tell you. I won’t leave you hanging.

Until then, one final thought: birthdays. It’s my birthday today, and in Disney World they give you birthday buttons to wear around, so every cast member wishes you a happy birthday. It’s fun. I was, however, starting to bristle just a bit after the third or fourth cast member chirped cheerfully, “Happy birthday, ma’am!” Wait – “Ma’am??” Am I really that old? When did I become a ma’am?! But just as I started to look around for a cane to smack the next whippersnapper that tried that business with me, I was reminded of the revelation I had on my birthday last year: getting older is something not everyone gets to do. As someone with cancer I know full well how precious birthdays are. And more birthdays mean more wrinkles, more gray hair and yes, more “ma’am”. And that’s not only ok, it’s a good thing. A great thing.

I get to have another birthday today. So if you’ll excuse me, I have some celebrating to do…

Time to ditch the metals

Hey everyone! Let me start this off by saying I have absolutely no updates on the cancer. I don’t go back to Mayo until March, so I don’t anticipate having any cancer news for you until then. My vision in the left eye continues to deteriorate, but slowly. For the most part I’m adapting pretty well, and half the time when I think “oh my gosh it’s gotten so bad!” it just turns out I have a gigantic thumbprint on my glasses. Still figuring out the glasses thing – like how do you check on anything in the oven without them fogging up? And I seem to have accidentally purchased a magnetic pair of glasses, as they attract every spec of dust, dirt and grime. Seriously, glasses wearers, how do you not spend every waking hour cleaning them? Ah, the mysteries of life…

No, the purpose of today’s post is to fill you in on the latest development in the three-ring circus that is my health. My Facebook friends know this, so apologies for repeating. The good news: the metal issues are going to be resolved. The bad news: the only way to do this is to have my hip replacement replaced.

Yep. ‘Cause I mean, what on earth was I going to do with all my free time before my scans in March? Just deal with the RA? Please. That’s just one thing. Where’s the challenge in that?

I actually had an inkling of this in September, when I started having some discomfort in the hip, along with a catching sensation and some weird noises (try explaining THAT to your yoga class. “It was my hip! Honestly!”). So it wasn’t a huge surprise to learn after my repeat blood work that my metal levels were even more elevated than before. The repeat MRI didn’t show anything new, but when I went in to chat about it all with my orthopedist last week, he was clearly bothered by the metal levels. And quite honestly, as a person with cancer and 3 autoimmune diseases (yes, I have 2 others – Hashimotos and Reynauds, but I’ve had them forever and they are no big deal), I’ve been troubled by the potential effects of high metal levels on all that. He did offer me the option of waiting 3 months and then retesting everything, but when I pressed him for his opinion he just sat back and sighed, “Your metal levels keep me awake at night.” Well then.

So I will be saying goodbye and good riddance to the metals (and my hip) on January 15th. Why so long? Because we are going to Disney World with friends in early January for the marathon and half marathon, and my orthopedist is totally cool with waiting till after that. He even said I could do the half marathon! Not sure how feasible that is, given my current level of pain in the hip, but at the very least I am walking that sucker. I might even try to walk the marathon – I cringe at what a long day that would be, and after doing the half marathon the day before it could simply be out of the question, but it would be my 30th marathon. And type A folks like me like nice, neat, even numbers. If I don’t do the full, I will have awesome friends to hang with, and we will all be cheering on Rich and Riley (running his first marathon! I’m so excited!). So it’s a win-win. Then I go home and have my hip replaced a few days later. Such fun.

Speaking of fun, I see my rheumatologist in a few weeks, at which time I get to inform him that my oncologist wants to cut my RA meds in half. My rheumy’s a pretty low-key guy, but I can’t imagine this going to go over well. I will be sure to tell you all about it if it gets entertaining.

If all this news sounds rather lighthearted, let me explain that I am currently in the middle of The Week of the Girlfriends. I have had quality girl time every day this week, including twice with friends from out of town that I don’t get to see often. Girlfriends are just good medicine. They’re good for the soul. So I’m feeling pretty upbeat about everything this week. It’s just hard to get down about stuff when you are surrounded by people who love you and support you, no matter what crazy crap life tosses your way. Seriously, get out and have some quality friend time – you’ll be glad you did.

During lunch with my dear friend Melissa (which included her mom and two of her friends – life lesson: great people know great people. Get to know your friends’ friends), I got chatting with Elaine, who said she’s been following my Caringbridge posts. “Is it weird that strangers know your story?” she asked. The simple answer is no. For one thing, as any mom knows, having kids means not having secrets. My sweet Tessa, at the age of 4, loved to tell total strangers – bank tellers, grocery clerks, the guy at the car wash – random things about me: my age, how much I weighed, that my actual hair color was gray, that I couldn’t wear a bikini anymore because I had babies and my stretch marks were “REALLY bad – Mommy, show him!”…yes, I gave up on privacy right about then. But in all seriousness, I am just humbled that anyone would care enough about my story to read this. Life can be tough sometimes, but having other people along for the ride makes it better. Even if I haven’t met them.

So that’s the scoop for now. I’ll share more details about the hip stuff when we get closer. December 4th is coming up – my one year “cancerversary” as I’ve heard it called. I’m hoping I can slow down enough to reflect a bit on the year. If I come up with anything deep or profound I’ll share it here. I’ll probably share the shallow and stupid stuff too, because that’s just funny. And I do love to laugh.

I have my rough days too, please don’t think it’s all rainbows and cupcakes, but for the most part I’d say life is good. I’m just having one of those weeks where everything is funny to me. I’ve learned to take these times as the gift that they are, rather than judging them or waiting for things to shift.

Thanks for laughing with me. I’m grateful for all of you!

Gimme a beat, it’s time to happy dance!

Had my surgical follow up appointment today at Mayo and everything looks good! Dr. Chen said my eye is healing up really well. There were two sutures that hadn’t dissolved, so of course I promptly began to squirm in anticipation of having him remove them, and questioned him twice as to whether or not he had used enough numbing drops. It actually turned out to be a case of the anticipation being worse than the event, because it really wasn’t a big deal. It’s just hard to calm down and find your happy place when someone is coming at your eyeball with tweezers. He couldn’t get the second one because it’s “buried” in my eye (goodbye, happy place!), but said it was fine to leave it there (whew!). I didn’t ask but I assume that it will either dissolve eventually or be easier to get later on.

I asked him about the floaters that have appeared this past week (more on those later), and he said it was probably a result of the radiation. He got out another 5 million watt light, checked things again and said that he did see some blood around the edge of the tumor, and that could be the cause of the floaters. And why am I excited about blood around the edge of my tumor, you ask? (Ok you didn’t ask, but pretend that you did) I’m excited because he said that in his observation, it looked like the tumor might be starting to contract! Can I get a “Hallelujah” from someone?!? Yeah, cue the music, this girl’s doing a happy dance! I’ll take a “might be” any day – because “might be contracting” means it is definitely not growing, and that is very good.

He also said I could throw away the eye patch that I’ve been wearing to bed every night since the second surgery (I might burn it…), stop using the eye goop and…. no more activity restrictions! Woohoo!!! Gimme something heavy to lift!

Rich and I like Dr. Chen a lot (and not just because he was the bearer of good news, although it probably made us like him a little more). We were immediately impressed with his calm, confident air when he saw me during my hospital stay. It’s really hard to put my finger on it exactly – he’s really likable and accessible, yet completely professional, and just gives you the feeling that he totally knows his stuff. And today, like Dr. Pulido, he sat there patiently and answered every single question we had (and I had a lot).

So barring any unexpected complications, I will not be returning to Mayo for another 3 months. That’ll be a scary one, because it’s a ton of scans and tests and such, but doing that every few months is going to be my new normal, so I’m going to have to find a way to make it work. But that’s down the road, so I’ll work on that later. Right now, I’m busy with my happy dance…

This past week brought some major improvements to my eye, especially cosmetically. While it certainly doesn’t look normal, it doesn’t look infectious and it doesn’t look like my husband beats me, so that’s a significant improvement. The white of my eye is taking on a lighter pink hue and approaching – dare I say it? – white. My lid is still a bit swollen and droopy, but one nice thing about wearing glasses is that you can’t see the eye as well, so it’s not as noticeable. Oh, and my eyelashes are starting to grow back! Oh happy day!

My trouble with looking at computer screens lasted only about a week (but oh, that was a painful week. I’m glad that’s over.). The new thing that surfaced last week was the appearance of floaters. In addition to some big fuzzy suckers randomly sailing by my line of sight, I started seeing what initially looked like bugs. No seriously, the multiple black specks, when seen in my peripheral vision looked exactly like bugs scurrying along my dinner plate, my desk, my bathroom counter – it was unnerving to say the least until I got used to it. Still have ’em, but now they’re a reminder that my tumor could already be responding to the radiation, so I don’t mind them quite so much :).

I followed up my day at Mayo with a music rehearsal for “Godspell”, so it’s been a thoroughly wonderful day. Oh – and I made a vegan taco salad that my family actually really liked! Victory! Yeah, the vegan thing – that’s probably material for a future post. Starting the first of the year I made a major change to my diet, in hopes of making my body less hospitable to cancer. Trying to eat more vegan, more organic, less processed, less sugar, less caffeine… it actually hasn’t been as hard as I feared, it’s just time consuming and labor intensive learning a new way of eating. Yes, it’s definitely material for a separate journal entry, because while there have been lots of successes with it, the failures have been pretty funny and definitely need to be shared.

Thanks again for walking this journey with us. It’s an absolute delight to share the high’s with you, and an incredible comfort to share the low’s. We are so grateful for your presence with us on this path, whatever the terrain. It’s incredibly humbling and profoundly wonderful.

Now to resume that happy dance…