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.
Just another day in paradise
Posted: March 22, 2011 Filed under: baseball, breast cancer | Tags: hospital, impatient patientLittle League, paradise, reconstruction, recovery, Super Girl, Vueve Cliquot 8 CommentsTo me, paradise looks something like this: 
Insert a comfy chaise lounge and a pitcher of perfectly mixed margaritas or a bottle of Vueve Cliquot, and I’m good. Add a compelling novel I’m really good.
I can’t conjure up a photo that shows the opposite of my version of paradise, but whatever it is, I’m smack-dab in the middle. Instead of sitting beachside on the chaise, staring out at a peaceful blue sea and feeling the warm rays of the sun on my skin, I’m still in my jammies, back in bed, feeling rotten with no end in sight. Not complaining, just explaining.
This is the portion of the program in which I make a quick mental run-down of all the things that are going right these days. The list is shorter than I’d like, but my expectations are high, and it’s good to have a little perspective.
Sadly, once my blessings have been counted and perspective delivered, the realization of my situation sinks in. Sure, it’s one more week of convalescence out of my entire life. One week isn’t much, right? But the days are long, and the frustrations grow with all the things I still can’t do. Add to that the fact that I still have the drains, when I really, really, really thought I’d get at least one of them pulled yesterday, and I’m blue. Knowing that I will have the drains for yet another week makes me bluer still.
It’s my own damn fault for setting the bar so high, for having the audacity to expect to be nearly well by the 3rd week. I was fully prepared to dedicate two full weeks to feeling crummy, walking hunched-over, aching all over, and feeling like a full-blown invalid. I could give up my independence and my car keys for two weeks, no problem. Those expectations were reasonable. The DIEP surgery was intense, but I was ok with that.
But then I snuck my Super Girl cape on over my hospital gown. After the agony of getting in and out of bed the first few times passed, I spread that cape across my shoulders and pulled it tight around the 17-inch-long scar on my belly (yes, I measured it and no I’m not exaggerating it. Those of you who have seen it know. And I apologize if your retinas were burned by the reality of my gutting).
My cape and I powered through the requisite hospital stay, and I got home a few days early. Once home, the progress rolled on and I was on the mend. This was do-able. This wasn’t so bad. Recovery was within my grasp. Every day got a little bit better, and I began to think the worst of it was behind me.
I packed up my cape, thinking I no longer needed superpowers and that I could return to “normal.”
Super Girl is not known for her brains.
That fast-tracked recovery came to a screeching halt with the appearance of the divot in the newly created right breast. This was troublesome because it was in the same spot as the post-mastectomy infection, aka my arch nemesis, mycobacterium fortuitum. Oh how I despise that bacteria. The only good thing about it has been the education it has forced me to undergo, and the addition of words like nosocomial and gram-positive will surely help my Scrabble game. The divot was followed by a fever, then hardening in the previously soft newly created right breast, and rounded out by some intense pain in the area around the remaining right drain.
In other words, paradise lost.
It has been widely reported that I’m a very impatient patient. These reports are true. I’m no good at convalescing and have no patience for the slow pace and endless days of non-productivity. The list of things I’m not getting done is long, very long. I try not to think about the process of digging out from under this period of doing nothing; that’s way too depressing. I don’t even look at the calendar anymore because there’s nothing on it but doctor’s appointments, and I don’t need the reminder of all the things I’m missing. My tennis team and Payton’s Little League team both forge on through their seasons without me. I haven’t seen a baseball game yet, and even though my poor boy is wearing the dreaded Yankees uniform this season, I’d still like to see him take the field, step up to the plate, and grace my favorite spectator sport with his presence. I would really like to be just another parent at just another game, bum aching from the metal bleachers. I miss the sights and sounds of the ballpark, and in my current state, there’s no telling when I’ll make it there. Opening Day ceremonies are Saturday, and my little boy gets to march with his All Star team from this past summer, with their Sectional and District champion banners. I missed the entire summer of baseball because of the post-mastectomy infection, and here we are in the midst of another season, and I’m still on the DL.
One step forward, two steps back.
Maybe I’d better unpack that cape. I think I’m going to need it. 
Update on the jerk
Posted: March 21, 2011 Filed under: breast cancer | Tags: Antibiotics, culture, Gram stain, infection, needle aspiration, pseudomona, Vancomycin 5 CommentsAmy says I need to post an update, and she’s always right, so here I am. Saw Dr Spiegel this a.m. and she’s not overly concerned with the fever, the firmness, the divot or the discomfort down my right side from the faulty drain. The right drain does indeed seem to be faulty, and she supports the unpopular (with me, anyway) opinion that the left drain is compensating for the right. Both drains are staying at least another week. Boo hiss. I wanted to start crying right then & there, but I’m way too proud for that.
She did culture the drain fluid and is looking for answers to my conundrum. She suspects a pseudomona and we hope to know for sure soon. She dug around on my new right breast A LOT (and I do mean dug, as in with a sharp object in hand), looking for fluid to collect and culture. No fluid to be found, even after she opened up the suture line AND tried to aspirate with a very long needle.
No fluid is good news but the very long needle was bad. I told the doc it would be a good day for a Xanax but I didn’t have one on me, not even in my “bag of tricks” as Amy calls it. No, since I’m still carting around these dumb drains, I have my little bitty sling bag for a purse instead of my real purse, which happens to be fully stocked. Grr.
Dr Spiegel suggested I pop into the office of Dr Grimes, my infectious disease guru, since he’s in the same building. He was at another hospital but we talked to his nurse Rhonda. She took a lot of notes and said she’ll get in touch with him and they will get back to me today sometime. Absent the pathology report, we’re in a holding pattern. Dr Spiegel and I talked about Vanocmycin, the wonder antibiotic that has worked so well on me in the past. Problem is, it needs to be administered via IV, either in the hospital or through home health, and Dr Spiegel doesn’t think that’s necessary just yet. She did suggest adding a vanco-like oral drug to my current antibiotics, but Dr Grimes’s nurse Rhonda didn’t think that was a good idea. She said it wouldn’t add more protection and would make me feel sick. Guess we need to wait and see what we’re dealing with.
So the good news is this: I didn’t get admitted to the hospital. The lack of fluid means the infection, if it’s there, hasn’t set up shop to the extent that it had last time. It’s possible that the pseudomona is preying on my already-fragile but on-the-mend body and causing some havoc with the drain sites but not revving up the original mycobacterium. Those are all good.
I’m also healed up really well, considering what a heinous surgery it was. So healed, in fact, that Dr Spiegel couldn’t pry the suture line apart (hence the big needle). She and Nurse Sonia both seemed unusually pleased at how well I’m healing. So why do I feel so crappy?
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.
Mr Yeats
Posted: March 17, 2011 Filed under: kids, literature | Tags: Caldecott medal, children's books, Colonel Sanders, Maude Gonne, Maurice Sendak, poems, poetry, St Paddy, St Patricks Day, unrequited love, wild rumpus, William Butler Yeats 2 CommentsI love me some William Butler Yeats, and what better day than St Paddy’s Day to read a little verse by Ireland’s best? If you’re not familiar with Mr Yeats, today is your lucky day. Keep reading; below are my two all-time favorite poems of his. I love, love, love them both. If you don’t have any Yeats in your collection, click here and order some today. I know, I’m bossy but really it’s for your own good and you will probably thank me later.
But first, a little background info: Yeats was born June 13, 1865 (a fellow Gemini, and likely half-crazy like the rest of us twins). His dad was a painter, and Yeats was schooled in art but much preferred poetry, and broke with family tradition to pursue his craft. I’m glad he did.
He was quite a handsome guy, but wasn’t especially lucky in love. While hard to live that way, I suppose it provided much fodder for his written word. This is my favorite photo of him because of the messy hair and trendy glasses; he could totally pull that look off today, as we speak. I’m not so sure about the Colonel Sanders suit, though. That’s taking it a bit far.
I’m not much of a romantic, and am not very sentimental either (but not quite cold and heartless), but the sweetness of “When You Are Old” gets me every time. I suspect he wrote it about his true love, Maude Gonne (who, by the way, was not his wife; he asked several times but she refused, and they both married other people). The theme of unrequited love is there, among the deep shadows of her eyes and her “changing face.” Now that I too am an old lady with under-eye shadows and a changing (i.e., not so youthful) face, the message of this poem is even more powerful.
The first time I read “The Stolen Child,” I had to sit down and take it all in. It still has that effect on me. I’m already sitting, so I’m good now, but it does move me. I didn’t have kids at the time, was a carefree college girl, and motherhood seemed a very distant destination on that particular world tour. Now that motherhood is my permanent stop, the imagery of the child being lured away “to the waters and the wild, with a faery hand in hand” seems scary and cruel, yet still magical and tempting in its prose. It reminds me a bit of the
children’s classic Where the Wild Things Are, by Maurice Sendak, whose brilliance is not something I can do justice to in this space, so I will defer (for now). Again, if you’re not familiar with Where the Wild Things Are, click here and order it today. And so before I get sidetracked and start rambling about how much I love all things Sendak, “Let the wild rumpus start!”
WHEN YOU ARE OLD
When you are old and grey and full of sleep,
And nodding by the fire, take down this book,
And slowly read, and dream of the soft look
Your eyes had once, and of their shadows deep;
How many loved your moments of glad grace,
And loved your beauty with love false or true,
But one man loved the pilgrim soul in you,
And loved the sorrows of your changing face;
And bending down beside the glowing bars,
Murmur, a little sadly, how Love fled
And paced upon the mountains overhead
And hid his face amid a crowd of stars.
THE STOLEN CHILD
Where dips the rocky highland
Of Sleuth Wood in the lake,
There lies a leafy island
Where flapping herons wake
The drowsy water-rats;
There we’ve hid our faery vats,
Full of berries
And of reddest stolen cherries.
Come away, O human child!
To the waters and the wild
With a faery, hand in hand,
For the world’s more full of weeping than you
can understand.
Where the wave of moonlight glosses
The dim grey sands with light,
Far off by furthest Rosses
We foot it all the night,
Weaving olden dances,
Mingling hands and mingling glances
Till the moon has taken flight;
To and fro we leap
And chase the frothy bubbles,
While the world is full of troubles
And is anxious in its sleep.
Come away, O human child!
To the waters and the wild
With a faery, hand in hand,
For the world’s more full of weeping than you
can understand.
Where the wandering water gushes
From the hills above Glen-Car,.
In pools among the rushes
That scarce could bathe a star,
We seek for slumbering trout
And whispering in their ears
Give them unquiet dreams;
Leaning softly out
From ferns that drop their tears
Over the young streams.
Come away, O human child!
To to waters and the wild
With a faery, hand in hand,
For to world’s more full of weeping than you
can understand.
Away with us he’s going,
The solemn-eyed:
He’ll hear no more the lowing
Of the calves on the warm hillside
Or the kettle on the hob
Sing peace into his breast,
Or see the brown mice bob
Round and round the oatmeal-chest.
For be comes, the human child,
To the waters and the wild
With a faery, hand in hand,
from a world more full of weeping than you.
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.’
Drains, drains go away
Posted: March 15, 2011 Filed under: Uncategorized 3 CommentsMy formerly favorite PA Jenn did not remove my last 2 drains today.
😦
I didn’t expect her to, because they’re still pumping out enough fluid to warrant a longer stay. But I still wanted her to. I kinda wish she’d have said, yeah the volume is high but let me wave my magic wand and fix that.
No wand today.
She also said I need one more week of taking it easy, of trying not to lift my arms, and I’m still banned from chores. While most people would love a doctor’s note to get out of doing chores, that’s not how I roll.
So I’m still grounded, and drain #3 and #6 remain, attached at the hip (literally), keeping me tethered and wardrobe-challenged, but free of complications like seromas. Guess I can’t complain too much.
Jenn did remove the stitches from my belly button, which is a relief. Not because they hurt, but they were long enough to poke through my shirt, which was kind of creepy. Everything else appears to be healing nicely, so the drains will keep draining, and I’ll keep exercising my patience. Like Dory from Finding Nemo says, Just keep swimming, just keep swimming.
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.
