House arrest
Posted: March 24, 2011 Filed under: breast cancer | Tags: blog, breast cancer, cancer battle, City Island, genetic marker testing, JP drains, Kathleen Sebelius, online gambling, online gaming, plastic surgery, post-mastectomy, reconstruction, recovery 9 Comments
Haven’t been feeling very bloggy today, which is unusual for me as I’m rarely at a loss for words. The norm is for me to wake up with a blog topic in mind, and I generally have several other topics infiltrate my brain every day as I go about my daily business. Some are interesting, and if the planets are aligned properly, I jot down a note or enter the info in my phone for later, but sometimes I don’t slow down enough and think I’ll remember it all on my own. Ha! That seldom works out for me. Who knows what brilliant blog posts are lost in my grey matter because I was cocky enough to think I could hold that thought in my head while my brain is on overdrive, processing all the medical hoo-ha since surgery.
Of the blog topics that do survive to see the light of day, however, some make the cut, some don’t, and lately the topic du jour is dictated by the most recent medical flare-up, break-down, or blow-out. Sometimes there’s an embarrassment of riches in the complication department.
But today the blog muses weren’t speaking to me. I chalked it up to the cabin fever, ennui, and general restlessness that accompany my current house arrest. I’ve been laying low all week (and it has been a long week) for a very specific purpose: to decrease the amount of fluid exiting my body and entering the JP drains so that I can get those damned drains removed.
I’ve had a bit of a history with the drains, going back to the mastectomy, and because I’m a busy-body, my drains’ output tends to be high and they have to stay in longer. I think I had 2 drains for 5 weeks post-mastectomy; can’t remember exactly but it felt like forever, and once they were finally removed, skin was growing around one of them and had actually adhered. Yes, the removal was ugly and painful.
But that’s not why I hate the drains. I can handle the ugliness and the pain. I can handle the discomfort of a rubber tube stitched into my side. I can handle the hole in my body with said rubber tube coming out. I can handle the creepiness of not knowing exactly how far that sucker is threaded through my body. I can handle feeling like a medical freak show when I go in public with said tubes sticking out and snaking from my sides into my sling bag. I can handle the wardrobe challenges presented by needing to cover up yet accommodate and not smoosh, all at the same time. I can handle the draining of them everyday, even though what comes out is nasty and not always liquid (and that’s all I’m going to say about that).
I understand the value and purpose of JP drains. I know that if the drains weren’t sucking the fluid out, it wouldn’t magically go away but would instead pool inside my body and create a seroma. I need a seroma, or any other complication, about as much as I need a hole in the head, as my sweet mama used to say. So I make peace with the drains, even though I curse them under my breath and despise them and rue the day they entered my life. Seriously rueing the day here.
I’m not loving my house arrest. I’m not so good at the “doing nothing” phenomenon that many people seem to embrace. I don’t enjoy this “down time” and I stink at being lazy. I especially don’t enjoy forced laziness. It’s just not for me. I understand and accept it but not happily and I would kick & scream to protest but that’s not very restful.
Day One of House Arrest was easy because by the time I got home from my appointment with Dr Spiegel at the med center, it was almost time for school to be out, and the day was half over. Day Two passed uneventfully; I watched a movie but don’t even remember now what it was. By evening, I was starting to get cabin fever but managed not to bitch about it too much. Day Three of House Arrest seemed longer than Day Two, but I watched another movie that was worth mentioning, and I may even have to write a review of; if you can’t wait for that, the movie is City Island with Andy Garcia and Juliana Margulies. It’s good. Really good.
The highlight of Day Four of House Arrest was the arrival of Melanie and little Luke of the million-watt smile. Melanie is kind enough to bring me a big cup of Green Drink and to blowdry and flat-iron my hair, since I’m still not supposed to lift my arms that much. We had a great visit and there’s a lot to be said for having clean hair, but there’s something kinda sad about the highlight of the day being over by 10 a.m. Sigh.
I’ve discovered that sitting in front of the computer can be a gigantic time-suck. Who knew? I usually sit at the computer (and “sit” may be stretching it, since I tend to perch on one corner of the desk chair, all the better to jump out of it fast and move on to the next task) briefly. I’ve never been one to spend all day in front of the computer. I don’t really enjoy reading from the screen (yet I love my kindle, so way to go, kindle creators). I’m not a gamer, either, so I don’t lose myself in the online gaming world. I thought about taking up online gambling, but I like to shop too much to throw my money away, so that’s not going to happen.
I do get a lot of info from various breast cancer organizations, and I usually skim the bevy of emails in my inbox on the topic, deleting more often than fully perusing. This one caught my eye, though, both because I have time on my hands to notice it, and because it seems so insistent and urgent. This one email contains multiple links, each one clamoring for more attention than the next:
Don’t Restrict Access To Mammograms!
Help Women With Breast Cancer by Covering Their Medical Bills!
Support Breast Cancer Genetic Marker Testing!
On Sale: Pink Ribbon Water Bottle!
Stop Canceling Women’s Policies!
Fund Women’s Exams in Remote Guyana!
Also a lot of urging me to tell Secretary of Health & Human Services Kathleen Sebelius what I think and which programs she should and should not endorse.
I’m not making this up. Even in the midst of my wealth of free time, I couldn’t make this up. The email is from a group called Greater Good Network! No idea who they are or how they got ahold of me, but I do know this: they use a lot of exclamation marks. Yes! They do! A lot!
That makes me tired. The forced excitement! And the wide range of serious health issues! And the political ramifications! I’m going to have to unsubscribe from their distribution list. Reading one email made me tired. Wonder if I have time for a nap.
Ithaka
Posted: March 23, 2011 Filed under: breast cancer, literature | Tags: breast cancer, cancer battle, Cavafy, DIEP, Grateful Dead, Greece, Greeks, Homer, immigrants, Ithaka, Odyssey, plastic surgery, poetry, post-mastectomy, reconstruction, recovery, superhero, survivor, Versed 4 CommentsHow appropriate after yesterday’s post that the first thing I read today is an excerpt from the poem “Ithaka” by Constatin Cavafy. Remember that yesterday’s post contained a photo depicting my personal vision of paradise? Guess what Ithaka looks like?
Also appropriate is that Amy Hoover showed up on my doorstep last night with a real-life superhero cape, which I clearly need to continue this “journey.” She doesn’t need a cape, because she really is a superhero, but her youngest son, Carter, has one and was sweet enough to loan it to me. We’re changing the C for Carter to C for Cancer-killer. I love the cape.
I’ve been struggling with the “journey” part of my recovery from major reconstruction surgery. I’m not a journey kind of girl; I’m all about the destination. Don’t care how we get there, it’s the getting there that matters to me.
Well, guess what? On a “cancer journey” you’re never “there” and the idea of being “done” is laughable because there really is no end point. There are transitions and transformations, and at some point one does graduate from cancer patient to cancer survivor, but there aren’t any signposts or mile markers along the way, so hell if I know where I am in this whole journey. I can say that so far, to quote the Grateful Dead, “What a long, strange trip it’s been.”
Enter Constantin Cavafy.
Fellow Greek, also a wordsmith (although he was way, way better at the craft than I). He was born and died on the same day, April 29 (1863-1933). I must say, that’s a terrible way to celebrate a birthday; I hope he got a piece of cake before he croaked. I also think it’s terrible, although understandable, that his family chose to Americanize their surname, Kavafis. My dad’s dad came over from “the Old Country,” as the Greeks refer to the homeland, speaking no English with very little money, like millions of other immigrants. Once he settled and raised his family, he wanted them to be Americanized, to shake off the immigrant stink that was considered unsavory, even though the USA is purported to be a melting pot. Thankfully, my Papou did not Americanize our surname, although my dad did change the spelling slightly in 8th grade, from Katopodis to Katapodis, to make it easier for the sports announcers to pronounce it properly; Kat-uh-po-dus instead of Ka-top-uh-dus. True story.
So Kavafis becomes Cavafy, and Constantin writes some poetry. He published more than 150 poems, the most well-known, “Ithaka,” after he turned 40. Some might say he’s a late bloomer, but those of us in the over-40 crowd say, Giddyup.
“Ithaka” was written in 1894, revised in 1910, published in 1911 then published in English in 1924. Talk about a journey: 16 years to complete, then another 13 years to reach a wide audience. I hope Constantin was more patient than I am. I’m sure glad he had a few good years between the poem’s success and his death, and I hope he savored it.
Some believe that the subject of “Ithaka” is Odysseus, from Homer’s epic poem The Odyssey. I think, however, it applies to anyone who is on a journey, and although Ithaka was the finish line or end point for Odysseus, the location is superceded by the ideal.
“Ithaka” begins with some advice for the traveler, which I think applies to lots of journeys (although on my particular journey I don’t have to “hope the voyage is a long one” because it is, boy howdy it is).
As you set out for Ithaka
hope the voyage is a long one,
full of adventure, full of discovery.
Laistrygonians and Cyclops,
angry Poseidon—don’t be afraid of them:
you’ll never find things like that on your way
as long as you keep your thoughts raised high,
as long as a rare excitement
stirs your spirit and your body.
Well, I certainly have encountered my share of Laistrygonians, Cyclops and angry Poseidons in this “cancer journey.” While Cavafy referenced these giants (cannibals, one-eyed monsters, and the God of the Sea, respectively), I believe such bad-boys take numerous forms and can also be representative of disease, infection, and hardship.
Ok, so far my voyage has indeed been long, with what some would consider adventure and discovery, and full of bad guys, and I honestly haven’t been afraid of them. Frustrated by and utterly sick of them, yes, but not afraid. So far so good.
I’ve tried to keep my thoughts raised high, and thanks to my mom’s “walk on the sunny side of the street” schooling, I think I’ve done that. Sure there have been some bad days, but I’m not going to sit around asking, Why me? when it really doesn’t matter, and it certainly doesn’t change anything.
I can’t say that I have a “rare excitement” stirring my spirit and body, although maybe I did while on morphine. More likely it was while on Versed. That’s one of my favorites; such a happy place.
“Ithaka” goes on to extol the pleasure of steaming into unseen harbors on a summer morning to “buy fine things” and “gather knowledge from their scholars.” Hmmm, exploring, shopping, and learning: now that sounds like my kind of trip. Cavafy implores us to keep Ithaka always in our mind and to remember that “arriving there is what you are destined for.”
Now here’s the part that really speaks to me today, as I continue to struggle with the down-time of recovery, as I want to be “back to normal” and wait impatiently for the passage of time and the reaching of milestones that will prove that it is so.
But do not hurry the journey at all.
Better if it lasts for years,
so you are old by the time you reach the island,
wealthy with all you have gained on the way.
I have a problem with the idea of the journey lasting for years, even though I know that it’s reality. I can accept it, but I don’t have to like it. I do hope that I am indeed old by the time I reach the island, and I already feel wealthy with all I have gained on the way.
Jerk
Posted: March 21, 2011 Filed under: breast cancer, cancer fatigue | Tags: blog, breast cancer, cancer battle, Hallmark card, Lifetime movie, missing mom, new boobs, plastic surgery, reconstruction, recovery 9 CommentsThere once was a post about gratitude. About feeling it and showing it to someone who had done something that changed my life. About how I struggled to say thank you for helping me, for making things better. About how I wished there was a Hallmark card that says, “Hey, thanks a lot for saving my life.” Absent such a card, I don’t think I effectively conveyed that sentiment, but I tried, and as we all know, it’s the thought that counts.
This post is not about gratitude. It’s not about feeling or showing thankfulness. It’s about a whole ‘nother set of feelings, and there most definitely is not a Hallmark card for them. It’s about feeling betrayed and scared and frustrated and hopeless. And helpless. Lots of helplessness in there. Sounds like a great basis for a Lifetime movie, right?
I’m feeling all of these nasty things, and more. In addition to the emotional stew, I’m also feeling sick to my stomach. For real. As in, any second I may barf. Now, that particular sensation is one I’m very familiar with, and no, not because of all the heavy drinking I’ve done in my lifetime (close, but not quite). It’s because of the dynamic duo of oral antibiotics I’ve been taking for 221 days. Two hundred and twenty-one days. CCXXI days. So let’s just say I’m used to the all-day morning sickness, the pukey-all-the-time drudge that is life on long-term, hard-core abx.
Add to the stew and the roiling stomach the sleepless night that now has me feeling like a zombie on a bad day after a monstrously long night of searching for solace but finding none. That feeling of bone-weariness coupled with worry so palpable you can smell it. And taste it. Which does not mix well with the roiling stomach.
If I weren’t so tired and puny and upset, I would be mad. Really mad. But I’m not. It would be very easy to be defeated, to give up and stop fighting. To roll over and concede. That is very tempting right now. And I’m not one with a lot of willpower. Brute force, yes, but willpower not so much.
I don’t do any of those things well: the giving up, the acquiescing, the rolling over or the conceding. I’m not super competitive, at least not against others, but I really stink at those things. I have no desire to keep up with the Joneses or be the leader of the pack. I don’t need the latest and greatest gadget, the biggest house, the newest car. I like nice things, but they don’t drive me. I have a lot of pride, and it’s hard for me to say things like “you win” and “I was wrong” and “I thought I could do this but I can’t.” I’m much better at writing those ideas than expressing them out loud. Hence this blog.
As I struggle to process all the feelings coming at me this morning, and fighting through the fog that fills my brain and slows down my body, and going through the motions of the early-morning routine, one thought sticks out and gathers my attention: everything was going so well; at the start of week 3, I should be able to do more, to reclaim more. And the fact that I can’t makes me heartsick and nauseated and wish I could curl up in a little ball until it passes. I want my mama, but she’s gone, and I can’t conjure her up right now. I’m stretching and reaching to remember her voice, but all I’m hearing is static.
I’ve probably mentioned before that I’m driven. I like results and achievements and progress. I make a to-do list every day and attack it. I believe wholeheartedly in the principle of do the work first then with whatever time is left, play. I don’t idle well and have a hard time doing nothing. I need goals and milestones.
I should be reaching a milestone as I enter week 3 of recovery from a major surgery. Some progress has indeed been made: improved range of motion, increased mobility, and less pain. What I shouldn’t be encountering is a set-back. At the risk of sounding a little whiney, haven’t I had enough set-backs?
Something is going on with the right side of my body, and I don’t like it. I’m mad at my body. It has betrayed me, and it’s frustrating me and worst of all, it’s scaring me. The drain on my right hip hasn’t been working well since I got home from the hospital. It has leaked and collected considerably less fluid than its counterpart on the left. A theory was floated that the disparity between the two drains’ fluid collection could be because righty isn’t pulling its weight so lefty is taking up the slack. I like the other theory better: that lefty is threaded deeper into my body, which allows it to pull more, and righty is doing exactly what it needs to be doing for its location.
Regardless of theory, the fact is something isn’t right, both with the drain and the newly created breast. The right one had a divot on Thursday, that was deemed by the authority figures to be no big deal, part of the process. But now the skin all around the divot in an ever-widening area is hard. And sore. To the point that taking a deep breath is uncomfortable.
This is the thing about recovery that is so treacherous. It’s unpredictable and anything can happen. Things can be going well by all accounts and suddenly, out of nowhere, there’s a problem. One minute you blow a tire, and the next you’re careening over the cliff.
I hate careening.
If I could send a Hallmark card to my body, to express my current mix of emotions, it would be simple. Not a lot of words are necessary to say, you betrayed me. It would look like this:
This is Kayte, not Trevor
Posted: March 19, 2011 Filed under: breast cancer | Tags: Arnold Schwartzenegger, Austin, breast cancer, broken heart, cancer battle, cancer diagnosis, cancer journey, champagne, dr appointments, hot tub, Houston, Justin Timberlake, Karl Lagerfeld, plastic surgeon, post-mastectomy, reconstruction, recovery, survivor, true friends 4 CommentsHi Pink Underbellyers,
This is Kayte VanScoy posting under Trevor’s PU log in. I wonder if Nancy’s ever given a thought to the fact that her blog is peee-yewwwwwww. For sure, the “Cancer Journey” (cue the violins) has been, so why not.
I’m in town imposing on the unending hospitality of the Hickses. I’ve known Trevor, Nancy, and Ed, because, let’s face it, Ed is part of this constellation too, since 1997 or so when we were all friends through the Austin Chronicle–Holt, Rinehart axis in Austin’s writing and editorial community. Eventually, Ed moved in and became my roommate, and that’s how I get so lucky to be able to pretend that I’m family around here. The truth is, we lost touch when I moved to New York to become rich and famous (I’m still waiting). But enough about me. Seriously. Enough about me already this week. (At first I wrote “weekend,” but then I realized that other people are working as I type this; it just always seems like the weekend around here.)
Hanging out with Nancy and Trevor and their kids and Ed and the dogs and Amy Hoover, too, who is a force of nature, makes it seem like life, no matter what comes, is just one pool party away from working out for the best. Look, PU-ers, I’m not going to lie. This has been a really rough couple of days for me. I didn’t exactly plan it that way, but I brought some heartbreak to Houston with me. Because, you know, it’s always all about me. Right? Does someone have a surgery to recover from around here? Is someone dealing with their wife and mother being not at 100%, when she’s usually at 150%? Apparently, I don’t care. Me me me. Sob sob sob.
Nancy makes it seem like my troubles are as big as anyone’s, including hers. And then…. I go to her appointment with Dr. S today.
Now, I’ll just stop here and say that when Nancy and Trevor and I reconnected on Facebook, we had been out of touch for many years. They had moved to NC and back, had another baby, and moved away and back to the Houston area. We had only been blissfully (for me, anyway) back in touch for a few weeks when Nancy got her diagnosis.
You never know how you’re going to react to something, but for me Nancy’s illness has made me realize how much I value my friends, how life is short, how old we really all are now… really, lots of really profound stuff. Maybe it’s been like that for you, too. It makes you think and try to see if you can pull something better up out of the middle of yourself. Those are always good challenges to have… right? I guess so. Whatever. Life.
Anyway, I offered to “help” Nancy and basically invited myself to town. So far, my “help” has looked like me staying out till 5am with other people, waking the whole house up, napping, hungover, through the day, then drinking champagne in her hot tub. You’re welcome! No, really, it’s nothing. I’ll try to do the dishes tonight… ? I guess I’m just not one of those “helping” people.
Now. Amy Hoover. That’s another story. Let me tell you… that’s a whoooole other story. Talk about Wonder Woman. I would give anything to have a heart big enough to contain other people’s needs. I’m happy to meet someone so competent, focused, giving, and living in love. Reminds me what is possible when we ask more of ourselves.
All right. I’ll get to it now. Here’s the story part of the blog: so, here we go… me, Nancy, and Amy, off to Dr. S’s for Nancy’s seeming daily appointment.
Okay… hi again. I saved this yesterday evening so that we could all sit by the pool and talk and eat and visit. This scene is pretty good, you guys. Pooltastic.
Now. Getting back to Nancy, her appointment(s), and Dr. S: Listen, if you have not been so privileged as to be invited into the presence of Dr. S, please endeavor to procure an audience with His High Holiness, the Plastic Surgeon’s Plastic Surgeon. And, you know, no joke, the man is more than skilled. He is more than artful. He is OBSESSED. He is the Picasso of the female form. Which is also another way of saying: Nancy looks amazing. She is in very good—and very specific—hands.
Now that’s just the intro. That’s the nice way of easing you into the jarring reality of Nancy’s daily life. When I was here last summer, Nancy was still battling her infection and still coping with an unreconstructed, post-surgical mastectomy site. I can’t really describe what it was like to see the Amazing and Beautiful Nancy in so much pain. It wasn’t comfortable to see. And then she invited me into her bedroom—with Amy Hoover—to observe the changing out of her wound dressing and, I don’t know what you call it but for lack of a better term, wound stuffing. The generosity of this invitation… I cannot overstate it. It was deeply moving, as much as it was unsettling. She even, and seemingly without thinking about it, invited in my friend Sarah, whom she had never even met, to watch the procedure. I don’t know why she did, but of course I was curious. I didn’t know that Sarah would want to but (and her dad is also a plastic surgeon, so perhaps it’s just a natural, genetic inclination) of course she was curious too. I realized, then, that Nancy was so much more than my old, smart, sweet, sassy, challenging, gorgeous friend from Austin. She is someone who does not see her body as only her own. She is so generous that she understands that to share her journey with me and with Sarah (and with all of you through this blog) is to expand and extend the boundaries of those who are ready to cope with their own cancers or the cancers of their friends, to grow the pool of people who will have a driving need to see research and fundraising get pushed to their limits as fast as possible. Although this journey, and her body, are certainly her own, Nancy is strong enough inside of herself to not feel stingy about her experience. I know that I could never offer as much to the world and she simply floors me. I am in awe of her and forever in her debt for inviting me in. My world is permanently changed.
Which brings us, finally, to the examination chamber of the ebullient Dr. S. His examination table more throne than bed, a leather club chair for me to lounge in, a rolling stool for Amy, and Nancy perched at the ready for what she calls, not unfittingly, The Dr. S Show. And in he comes, fanfare root-a-tooting, a fit and attractive man with dark skin, of some Middle Eastern or Asian descent. But who has time to ask after such trivialities as background? He blazes in and begins the performance, and Nancy—the Judy to his Punch, the Lucy to his Desi, the cream to his coffee—giving it back every step of the way.
First, down come the clothes and there is Nancy’s body in its glory, stripped to the hips. Now, I’m not a prudish sort, but from the unconcerned way in which she peeled off her kit you’d think her profession involved a pole or the transportation of chicken wings from kitchen to salivating male maws. I guess she’s used to it. She didn’t seem impressed. He, on the other hand, lit up. Not in a yucky way, but in the way of an artist unveiling his greatest work of art—behold, Nancy!
Like the cartoon painter, holding out his thumb to measure his progress, he stood back to take her in, stepped forward to touch, prod, palpate, and even just to elucidate. It was the longest, by far, that I’ve ever been in a room with a half-naked person and three dressed people having a conversation as if, you know, it just happened every single day of our lives like that. Of course, I was the only one there for whom it doesn’t. So, I mostly kept my big mouth shut and tried to take it all in.
First, there was the issue at hand. The Soup du Jour was the “divot,” as Nancy had come to call a thumbprint-sized indentation of her upper-right, newly reconstructed breast that had just drooped into existence in the past 24 hours, along with some new and concerning pain. This was the exact site of the infection that had so bedeviled her and she was worried it was all coming back.
Right off the bat, with the most self-assured manner imaginable (imagine Justin Timberlake meets Arnold Schwarzenegger with just a soupcon of Karl Lagerfeld), Dr S announces that this is nothing to worry about, there is no infection present, and that everything looks amazing. This indentation can be filled with injected fat, or they could go back in and fix it in another surgery.
Is he serious? Another surgery. He’s blasé. She is too. The explanation for it, he says, is simple. One of her ribs had to be carved out to allow a blood vessel to pass through, to supply her new tissue. I shudder at the carving motion he makes in his finger, showing how the rib was sliced into with a crescent moon. Again, this registers almost zero with Nancy & Amy and I keep my yapper zipped.
Now, in a regular doctor’s visit, Nancy would cover up as soon as possible, he would busy himself with scribbling something and mumble his way out of the room. You know how it goes. Right away, however, and Nancy seems to understand his need to do this, he begins to survey “the field,” as it were. Nancy has a hip-to-hip incision with two drains on either end. This is where The Dr. S’es harvested the fat she had so obligingly grown for them to build her new breasts.
He sways over to the paper towel roll on the wall, whips out a square of paper, takes out a Sharpie and begins to diagram the procedure. Nancy is rapt and I figure she knows what he’s talking about. Later, we both confirm that we were lost in all the medical jargon. I’m confident that Dr. S has no idea what’s going on with his audience and is even less interested. He continues on, diagramming, explaining, gesticulating. Finally he announces, “Now I do not even give this lecture to other surgeons!” Nancy, Amy, and I break out in a round of (bewildered) applause.
Unfortunately for Nancy and, one would think, the future of all mankind (given the intensity of his passion around it), two weeks post-surgery Nancy still hasn’t lost every single nubbin of extra fat globules from her hips beyond the incision. This cannot stand!
I can fix this! he quips, gesturing dismissively to the offending blobs. “We call these dog ears.” I put this in quotes so that you will understand that Yes, He Actually Said That. Nancy is NAKED, SCARRED, RECOVERING… but, dog ears. THIS is our priority. My mouth snapped open and didn’t close for several minutes. He wasn’t done. And this, he sweeps his hand up her side a bit–not touching her, but seemingly carving into her–“You have no waist.” Again, Yes. He Said That Too.
I don’t even think I had time to be shocked. Or… you know it was just one of those situations, like walking into a market in Marrakesh, where you just have to let it all wash over you and vow to try to remember all the sights and sounds later.
Of course, Nancy is still Nancy, folks. If anything This Cancer Journey (insert Lifetime movie music here) has only hewn her into more of what she always was—a tough cookie, and sweet to boot. I can’t remember exactly what she said, but it was something along the lines of, “Hold up there, buddy!” Amy, Nancy’s constant, devoted, caring, and almost superhumanly nurturing medi-buddy, also reacted. They’re used to this type of onslaught of useful (no infection) and uncalled for (dog ears? really, dude?) information spilling forth at a clip.
“I have a waist! What are you talking about?”
“Because I gave you one, you see. You didn’t have one before.”
Now look. Women argue with men. Wives argue with husbands. Friends argue with friends. But until you’ve witnessed the debate of a beautiful and self-possessed naked woman and the plastic surgeon who feels more of a right to claim her beauty for himself than her husband, herself, and, as far as I could tell, even God Almighty could take credit for, then you have been spared the edges of a couple of very sharp dueling scalpels, let me assure you.
Give and get, back and forth, round and round they go. He asserting, she parrying, she wryly pointing out his clear social deficits, he roundly ignoring these helpful hints by turning, again and again, to the centrality of his craft. Indeed, isn’t that why we’re all here? Because Nancy is the canvas and he its master?
But. No. No, indeed. Because Nancy is no kind of plastic surgery bunny. She is a survivor. A WARRIOR, really. I’m not really a pink ribbon type. I’m one of those people who says things like, “Where’s my Fun Run?” and other such obnoxious, self-centered garbage. I enjoy provoking and being contrary and I do not enjoy, any more than Nancy does, coddling and cooing over every emotional need. But Nancy? She is something else. She has kicked cancer, infection, and reconstruction in its big fat fanny.
Before you know it (and not before I’ve snapped a series of pretty hilarious and totally covert photos of Dr. S on my iPhone), we’re wrapping up the burlesque portion of the program and transitioning into the grotesque. We troop into his office–he seems completely informal and unconcerned about this invasion of his personal space, basically totally unlike every other fancy pants specialist I’ve ever been around–to behold his treasure trove of photos of Nancy’s progress over time. At first I think there is some point to this, that it is part of a regular office visit and part of Nancy’s treatment. As he clicks through the photos and he points and she points and he asserts and she parries I realize, oh, no, I see. This is all just part of the performance art piece known as Nancy Visits Dr. S Again that they both, clearly, enjoy and thrive upon. They bring out the best in each other, and this is the best of the best, folks. Gladiator Wars.
Does she have a waist? There it is! she points. Uch, he scoffs. Me, mouth agape, hanging back. This goes on a really long time. Her breasts used to be “boxy” and now they are so much better. Eventually he will build her a nipple, its color to be added by tattoo. He goes out onto the Internet to show us how natural this result can look on other finished reconstructed patients of other doctors who, I guess, probably similarly after their Cancer Journeys, found themselves more interested in opening minds and hearts than covering up. Bless them and their candor. My heart peels open. My mind rewires.
The body is not the vessel; it is less, even, than that. It is just the sack of skin we carry around our hearts in, the perch for our big juicy brains, the tentacles we reach out to each other with. We can do with it what we will, as it will try to do back to us. It is a battle of the wills between the spirit and the cell, between love and pain, between courage and flesh.
Nancy is winning this battle and now that I have seen just how gracefully, and forcefully, and what the anatomy of her support system is like, I know how. I have limitations in life, I think. Somehow I would like to be part of this world that Nancy supports and that supports her back, but so far I’m not sure I’m equal to it. I’m a writer, a feeler, and kind of a weirdo. I don’t know how much I have to add. I don’t really do dishes or make beds—-I will, but you have to remind me every time. I don’t “take care of things,” so how can I “take care” of Nancy? Maybe you feel similarly confused about how to play a role in Nancy’s recovery process.
What I learned this weekend, though, is that Nancy takes care of her own dang self and thank you very much. But, she doesn’t mind a little company along the way.
$82,996.75 later…
Posted: March 18, 2011 Filed under: breast cancer, Surgery | Tags: anesthesia, breast cancer, cancer battle, cancer diagnosis, hospital, ICU, morphine, pathology, plastic surgery, reconstruction 11 CommentsAccording to the latest hospital bill, that’s how much my reconstruction cost. Well, at least phase 1 of reconstruction. More phases to come, but let’s not even think about that now; I would hate to stroke out this close to happy hour on the last Friday of spring break.
Here’s the breakdown, in case you’re curious; please note the absence of any fees for the surgeons. I can’t even begin to imagine how massive those costs are, so let’s say for now that the Drs S did an amazing job and I couldn’t put a price on their services if I tried.
ICU Surgical: $9,312.00
Radiology (don’t recall any of that; must have been asleep): $359.00
Medical Surgical Supplies (nice & vague, huh?): $18,117.00
Laboratory: $12,785.00
Pharmacy: $4,306.50
OR Services: $22,550.50
Anesthesia: $9,220.25
Intermediate Care: $2,586.00
Respiratory Services: $147.50
Pathology Lab: $3,607.00
And finally, the most puzzling charge of all:
Patient Convenience: $5.50
WTH?? If anyone knows what “patient convenience” is, and why it costs $5.50, please do tell. I can assure you there were precious few things about that procedure that were actually convenient.
I would have expected my pharmacy fee to be much higher. Maybe as a repeat customer, I get a discount on morphine.
It’s never over
Posted: March 16, 2011 Filed under: breast cancer | Tags: biopsy, blog, cancer battle, cancer diagnosis, CT scan, fat lady sings, finish line, living, MRI, PET scan, recovery, surgery, ultrasound 7 CommentsIf it’s not over until the fat lady sings, I would like to know what time she’s scheduled to take the stage. What’s that — there is no schedule? The fat lady sings when she’s good & ready and not one minute before? She is a diva. 
The idea of all of “this” being over is a recurring one. By “this” of course I mean cancer and all its dangling, hangey-on-y ways of lingering and permeating myriads aspects of life. I was reminded of this (because cancer and its many tentacles are never far from my mind), while reading one of my new blog friend’s blogs. His wife just had a mastectomy in northern California, and he posted on his blog to tell all of her friends & followers that the surgery was over. He actually used the phrase “it’s all over” and then chuckled at and corrected himself, knowing full good and well that they have miles to go before they sleep, as Robert Frost so eloquently wrote in “Stopping by Woods on a Snowy Evening.”
Oh, how I love that poem. Robert Frost was a total stud. The imagery he creates, seemingly effortlessly, resonates to this day. I’m totally in love with the image in my head of his horse, which he carefully crafts with such an economy of words. I can see his horse’s big, gentle eyes, beseeching his master and wondering what in tarnation the pair of them are doing hanging out in the woods on a cold, dark night. I can almost hear his harness bells’ jingle, and I’m swooning over the phrase “easy wind and downy flake.” Love it.
While some first-rate poetry is a nice distraction, the subject remains. The idea of “being done,” or “it being over,” doesn’t really apply to cancer. As I pondered Paul’s blog post I realized this truism, and even though I’m a rookie in the “cancer journey” I’ve learned a lot and I know this to be true: it’s never over.
Here’s the thing: the “cancer journey” is long. It used to be the road less traveled, to quote Mr Frost again, yet nowadays is more and more common. Too common, as every day the numbers of people diagnosed continue to grow. For breast cancer alone, the chances of getting it have risen from 1 in 20 in 1964 to 1 in 8 today. In less than 50 years, our chances of contracting this damned disease have leapfrogged considerably. Which means more and more people will find themselves on a “cancer journey,” and I wouldn’t be surprised if those numbers continue rising.
Another things I’ve learned on my “cancer journey” is that someone keeps moving the finish line. I’ve only been at this for 10 months, yet have seen my finish line recede, sidewind, and fade into the distance. It starts even before diagnosis, with the testing that’s done to determine if we do indeed have a problem. Get through those tests, which in my case were a mammogram, an ultrasound or two, and a couple of biopsies. Then there’s the actual diagnosis, and getting through that becomes an emotional obstacle course. Following the diagnosis are lots of research, soul-searching, and decisions. But even when those are through, the real work is only just beginning. After the big decisions come still more testing (MRI, CT scan, PET scan, blood work, another biopsy), and that’s just to get to the point of having surgery. Get through surgery, then through recovery, and just when I think I may be getting “there” I realize that even after recovery, I gotta learn about re-living, which is kinda different when “normal” has flown the coop and there’s a new status quo involved. You might think that finding the new normal would be the end, but guess what? now there’s the maintenance and screening. If you’re the kind of person who makes a list and takes the necessary steps to reach the conclusion, you’re screwed, because there is no end. I can’t even see the goalposts anymore.
I’ve learned this much on my “cancer journey.” I’m trying to stop looking for the finish line, to avoid squinting for the goalposts, somewhere off in the distance. Since it’s never truly over, I’m gonna just keep on truckin.’
Milestones
Posted: March 15, 2011 Filed under: breast cancer | Tags: breast cancer, cancer battle, cancer diagnosis, Duke, girls' trip, hospital, infection, Lake Tahoe, Little League, mastectomy, milestones, recovery, Salisbury Beach, state baseball championship, stress, survivor, Tyler, wound vacuum 8 Comments
I just realized that Sunday was 10 months exactly since my mastectomy. And tomorrow will be 2 weeks exactly since reconstruction. I’m trying hard not to think about the fact that exactly 3 weeks after the mastectomy came the infection, which landed me back in the hospital just as I was getting my life back, and ended up costing me 23 days of incarceration (hospitalization); 3 vacations (Duke girls’ trip to Lake Tahoe, to Tyler for Payton’s All Star team’s state championship, and our annual visit to Boston and Salisbury Beach); 3 more surgeries; 10 days of twice-daily IV antibiotic infusions at home; and introduction to and hatred of Sucky, the wound vacuum. All in one summer. I’m sure that nasty infection cost me more that what’s listed, but those are the highlights.
I’m trying, really trying, not to think that a catastrophe is coming. I’m trying not to wait for the other shoe to drop, for the bottom to fall out, and the walls to cave in on this recovery. It’s a fragile peace. Very fragile.
Two mantras run through my head: It’s Temporary, and Don’t Borrow Trouble.
The first comes from Jenny, my survivor-sister mentor who has walked this walk, and then some. Her kids were 7, 5, and 1 year old when she was diagnosed, and like me, her case was anything but textbook. Hers was way worse than mine, and we veterans do like to compare and contrast. But she not only survived, she thrived, and she’s a shining example for me every single day. Now that I’m getting closer to being “done” with this “cancer journey” I appreciate her example even more, because she’s my tour guide for L.A.C.: Life After Cancer.
The second mantra comes from guest blogger and night nurse Amy Hoover, and along with her charging me $10 for being difficult, she reminds me to avoid looking for the bogeyman. Ignore him, assume he’s moved on. I suspect all survivors have a little bit of pessimism in them, no matter how chipper they seem. Yes, I’m glad to have been one of the lucky ones, who found it early and can bask in the security of single-digit recurrence rates. And yes, I do try to look on the bright side, count my blessings, and walk on the sunny side of the street (as my mama used to say). In general, my side is blindingly bright, my blessings are innumerable, and I need SPF 70 for the powerful rays on my side of the street. But the thoughts are still there. Sometimes.
Sometimes thoughts of “what if?” fight their way to the surface and take giant gulps of pessimistic-filled air. Those gulps sustain those thoughts as they traverse my grey matter and circumvent the rational side of my brain that tells them to hush up, quiet down, and go away. The rational side of my brain fusses at those thoughts to beat it, get outta town, and quit plaguing me with doubt, worry, and fear. And usually, it works.
But sometimes, instead of celebrating the milestones and thinking about how far I’ve come, those thoughts prevail. Instead of holding my head high even though my back still isn’t completely straight from the giant incision on my belly, I cower a little. Just a little, because I absolutely despise cowering. But sometimes my irrational brain takes over and reminds me that there are no guarantees in life, and there certainly is no travel insurance on this “cancer journey.” I’m the poster child, after all, for doing everything right lifestyle-wise yet still being crapped upon by the giant cancer bird in the sky.
You know me, though, and I’m not about to let some giant bird or some niggling thoughts stop me from living my life. And living it out loud. Today I will celebrate being a 10-month survivor.
I’m over it
Posted: March 14, 2011 Filed under: breast cancer, kids, pets | Tags: bad mood, breast cancer, cancer battle, Carlsbad Caverns, dogs, family, grumpy, kids, national parks, recovery, roadtrip. day camp, Sports Center, spring break, Stoli volka, Van Horn Texas, Wizards of Waverly Place 6 CommentsYesterday was a bad day, but just for about half of the day. I was in a wicked bad mood, the cause of which remains unknown but the remedy of which is no surprise: a stiff drink in the company of good friends. I got some talking therapy from several sources, and with the assistance of some Stoli and tonic, all was right in my world once again.
It’s a good thing, because guest blogger and night nurse Amy H was going to charge me cash money
for my bad mood. You may recall her referring to her $10 surcharge while sitting with me in the ICU last week. It was the day after my big surgery and she was subjected to my ranting about the extreme heat and pounding headache. I ran up a tab that day, and added to it yesterday. She kindly reminded me that it’s ok to crash around in a foul mood for a little while, but then get over it and get on with it, and she sent me a picture of her policy, in writing, that hangs in her kitchen.
Point taken.
Today is going to be a good day. It will, it will, it will.
It’s gloomy outside with thunder threatening, but the birds are still singing and congregating around Macy’s feeder in one of the trees in our front yard. It’s spring break in these parts, so my offspring are fanning out in search of entertainment and a respite from the rigors of 3rd and 6th grades. Macy, the little zookeeper, is going to day camp at the Lone Star Pet Lodge, which Trevor refers to as the Last Resort Pet Resort in a funny malapropism.
Macy will be tending to the animals whose owners checked them into the resort while they’re off on spring break adventures. We’re not sure exactly what her duties will be, but it sounds like an ingenious plan on the kennel owners’ part to both extort child labor and turn a profit. We pay them for our kid to do their work. How crazy is that? Crazier still is that I wouldn’t be a bit surprised if Macy came home a part-owner of that place. She was definitely in her element when we walked in; we were greeted by a miniature Yorkie at the reception desk, and for the first time ever, Macy didn’t hesitate when walking into a camp. She didn’t hesitate, and she didn’t look back to tell me good-bye. Yep, she’s in her element.
Payton’s spring break adventure is of the roadtrip variety. My firstborn has a taste for the great outdoors and a longing to see some of our fine national parks. Sadly, he missed the great cosmic birth-order assignment that might have landed him in a camping and hunting type family, and ended up with a less-rustic and more beach-oriented family. Lucky for him, there’s Ed, our nature-loving BFF. He’s a fan of the roadtrip and is well-versed in all things national park, so he and Payton hatched a plan to drive to Carlsbad Caverns in the neighboring state of New Mexico. Payton and Ed will be on the road all day today en route to their base camp in Van Horn, TX, which is about 10 hours from here but close enough to Carlsbad to visit the caves. Payton is looking forward to the “guy’s trip,” seeing the sites and splendor of West Texas, exploring Carlsbad’s 117 caves, and consuming more junk food than his mama allows. With him gone, I don’t know what I’ll do without my daily infusion of Sports Center, but I’ll try to muddle through. My prediction: since Macy has exclusive rights to the TV, there will be a Wizards of Waverly Place marathon going on when she’s not at camp.
It’s definitely going to be a good day.
Cranky, irritable, and just plain bitchy
Posted: March 13, 2011 Filed under: breast cancer, cancer fatigue | Tags: bad day, bitchy, blog, bloody mary, breast cancer, cancer battle, cancer diagnosis, champagne, crazy, hospital, infection, intense emotions, invitation-only blog, mastectomy, microsurgery, mood swings, plastic surgery, post-mastectomy, post-op, privacy, reconstruction, recovery, Shock Top, stress, vodka tonic 13 CommentsThat’s how I feel today. Don’t say I didn’t warn you.
If you’re not in the mood to read something scathing, if you’re feeling a little frail today, or simply don’t like bitchin’ & moanin’ then I suggest you move on, because I have a powerful need to get it out. Bleeeeeeeeeeeeeh.
Don’t know what set this off, and in my current state of utter bitchiness, I don’t really care. I’m just feeling pissy. Been fighting it since I woke up this morning, and am only 4 hours into it, so it’s gonna be a long day. I’m not too proud to call for help in the way of a bloody mary followed by a bottle of champagne followed by a Shock Top or two followed by an extra-tall vodka tonic with extra lime. Yeah, yeah, yeah, I know that alcohol isn’t the answer, and in many cases actually makes the problem worse, but today I don’t really care, and if you want to lecture me about the dangers of overindulging or how alcohol consumption is tied to increased rates of cancer recurrence, don’t bother. I already know that. But some days it just doesn’t matter.
Today is definitely one of those days.
The straw involved in this particular breaking of camels’ backs came when I decided to spend a little time mindlessly surfing the blog-o-sphere this a.m. in search of humor, inspiration, and distraction from my wickedly bad mood. There are a lot of good blogs out there, and if I ever get out of this funk, I plan to create a blogroll on my blog’s homepage, to share some of the greatness I’ve found. And I will do that. Y’all know me, once I set my mind to something, I do it. ‘Nuff said. But for now, I am waylayed, stymied, stopped in my tracks in my pursuit of a mood-elevating stint on the ‘Net.
Why? Because in the span of 10 minutes I came across 2 blogs that tell me I have to be invited to read before I can even click one single time to see if it’s a blog that appeals to me. WTH??? I have to be invited to access a blog I don’t even know if I’m going to like, much less return to or perhaps follow regularly? WTH???
Ok, on a normal day (whatever the hell that is), I might come across an “invitation only” blog and think, hmmm, that’s interesting, I wonder why it’s configured that way? I’m pretty new to the blogging world, and there’s a lot I don’t know about the wide and wonderful world of blogs. On a normal day, I might wonder: Is this invitation-only blog’s readership so huge that they have to separate the wheat from the chaff? Does the blog’s author feel particularly strong about privacy, as opposed to airing her dirty laundry, the way I do in my little blog? Is she just snotty and isolating in general but in particular toward other BC survivors who are trying to muddle along in this wretched “cancer journey” and seeking solace or answers from those sister souls who’ve been there before?
Maybe that blog author is just a bitch.
This blog author certainly is bitch-y. But I don’t think I’m a bitch. Maybe I am, but today, who cares? I don’t really think that other blog author is, either, although I can’t say for sure since her stupid blog is by invitation only. Screw her, I don’t want to read her stupid blog anyway. I’m gonna pack up my flaming bad mood and leave her holier-than-thou protected blogsite. Bitch.
The post-op instructions that I brought home from the hospital mention something about mood swings and periods of intense emotions. Apparently it’s all part of the “cancer journey” and in particular, the recovery from the major surgery required to try and put the pieces back together after a firestorm of mutated cells banded together to create some bastard tumors that burst through my milk ducts and invaded my system. Rude.
Maybe this is the mood-swing-and-intense-emotion portion of my recovery. Maybe this is the culmination of the hormone frenzy that goes on in my tired, taxed, put-upon body every single day, and today the frenzy got the best of me. Maybe this is totally normal for those of us in the midst of a “cancer journey.” Maybe this is just an ordinary, run-of-the-mill bad day.
Maybe it’s all of the above. One thing I do know for sure is that I am sick, really sick, supremely sick of all of this. I’m not a good patient on a good day, and I’m a hellabad patient on a bad day. Oh how I am sick of all this. Sick of the pain, yet leery of the pain meds. Sick of the drains yet aware of their necessity. Sick of the right drain leaking yet too pissed off to attend to it. Sick of the pile of dirty clothes with patches of bloody spots from the damn drain leaking, yet not at all motivated to start the laundry. Sick of the fact that I need to start the laundry, yet still haven’t been cleared to do any chores. Sick of chores needing to be done while I’m not cleared to do them, yet unwilling to seek help. Sick of having to think so hard about what to wear because of incisions and drains, yet unwilling to stay in my jammies another day. Sick of how hard it currently is to do the basic everyday things (like washing my face), yet not satisfied with the “it’s temporary” mantra that usually calms me. Sick of wondering if raising my arm high enough to reach a glass is the motion that will tear the micro-stitches and disrupt the healing of the micro-surgery, yet thirsty enough to reach anyway. Sick of worrying if I’m doing too much or being too still, yet too lazy to find the answer. And I’m sick–really sick–of sleeping on my back. I’m a side-sleeper but I have to sleep on my back, yet again, because I can’t lay on my incisions. Dammit to hell, I can’t even get comfortable at bedtime.
I’m 11 days into this recovery, and while my rational self knows that 11 days isn’t long enough to heal, I’m impatient and fidgety and ready to move on. But then I realize that when it comes to moving on, I don’t really know what that means. Baby steps aren’t my style. I’m more apt to pitch headlong and headstrong into something and just get ‘er done. Only, in this case, I don’t know how to get ‘er done. Have no clue. I’ve been on this “cancer journey” so long that I don’t exactly remember how to get ‘er done. Don’t even know what it is I’m supposed to be getting done.
All I know is that I’m cranky, irritable, and just plain bitchy today.
E Roosevelt said it best
Posted: March 10, 2011 Filed under: breast cancer | Tags: American Dream, breast cancer, cancer battle, cancer diagnosis, cancer sucks, DIEP, Eleanor Roosevelt, family, famous quotes, ICU, mastectomy, recovery, survivor 5 Comments“You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I lived through this horror. I can take the next thing that comes along.’ You must do the thing you think you cannot do.” — Eleanor Roosevelt
Well, I did indeed live through the horror (or horrors, if we’re counting the previous surgeries, procedures, and nastiness), so I guess I can indeed take the next thing that comes along.
That next thing better be something good.
It’s been a long road, and while a lot of people have even longer and more pot-hole-filled roads, I’m thinking only about mine right now. I’m still recovering and can be selfish like that. I won’t ride that wave too long, or play that card too often, but for today, I’m thinking about my road and no one else’s.
I really like the quote above from Eleanor Roosevelt, and thank Susan Christopherson for passing it along to me in the early days of my “cancer journey.” In those early days, I had no idea that the diagnosis and mastectomy were going to be the easy parts, that a nasty infection would make those previous experiences seem like a walk in through a rainbow-infused meadow with my pet unicorn. Ha!
Another quote of Ms Roosevelt’s that’s always been a favorite of mine is “A woman is like a tea bag. You never know how strong she is until she gets into hot water.” True dat.
I’ve had a lot of comments about my fearless attitude, and some people have kindly suggested that my sunny outlook has helped propel me through this “cancer journey” without much trouble. If you want to know how I do it, the answer is: I don’t know, it’s just what you do.
I grew up with the “it’s just what you do” principle, and maybe it’s like freckles or pigeon toes–you either got it or ya don’t.
My parents did instill that principle, and they did a good job, so it took. I certainly don’t wake up every morning with cartoon birds singing out my window and little woodland creatures bringing me my robe & slippers (although that would be pretty cool). If they could bring me a skinny latte, that would be even better.
I suppose there are two ways to face a horrifying situation: head-on, like Ms. Roosevelt suggests, or with your head buried in the sand. I’m a head-on kind of girl, and the head-in-the-sand approach has never worked for me. I kinda admire the people who can do that, though, because it seems a lot easier. But here’s the thing: no matter how you face a scary situation, it’s still scary.
Cancer didn’t make me brave. I don’t think it’s a gift (as I’ve written about before, and will continue to rant about at any given time, so get used to it!). Good things can come from a bad situation, but the bad situation does not magically become a good thing.
The truth of the matter is that cancer sucks. Whether it’s an early diagnosis and best-case outcome or late-stage and aggressive, it just sucks. There are untold ways in which it sucks. And there are innumerable ways in which it affects your life and body. For me the scariest and suckiest thing about cancer is that once you have it, you can do everything right and face everything head-on with no guarantee that it will all work out ok. That’s just not right. Our society is based on the idea that if you work hard, you will propser. The American Dream, right? Well, cancer doesn’t subscribe to that idea. It’s random, and vicious, and unfair.
But guess what? We don’t have to fear it. Yes, it is one of the worst things that can happen. Being diagnosed (with no family history) at a (relatively) young age was a serious sucker-punch. My world has been topsy-turvy for the last 10 months. But as my sweet friend and survivor sister Jenny reminds me, it’s temporary. In fact, she was kind enough to make me a poster right before my reconstruction last week to reiterate that idea. I wanted to take it to the hospital with me, but the extreme heat of the ICU room would have melted the glue dots and cute sparkly stickers. 
Jenny has reminded me from day one of my “cancer journey” that it is temporary, which means I can endure it. I can get through it. Some days I’ve questioned that, and Jenny has texted me a simple message: it’s temporary. Knowing that removes some of the fear and shifts that balance of power from cancer back to me, where it belongs.
