This is Kayte, not Trevor

Hi 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…

According 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

If 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

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

Yesterday 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

That’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.


Round and round

Sometimes I leave the doctor’s office in need of a drink, and sometimes I leave there in need of a nap. Sometimes, I leave there needing both.

Yesterday was one of those “both” kind of days. It was my first visit to his office since the big surgery, and when I walked in the door, his nurse gasped, I can’t believe how well you’re walking! I told her the same thing I told my tennis teammates when I went to watch their match Wednesday: it’s been more than a week since the surgery; I’m done.

If only.

I’m wardrobe-challenged again, like I was post-mastectomy. While it seems like an eternity ago that I was scrounging through my closet after the mastectomy to find something, anything, to wear, it’s all coming back to me now. How complacent, how cocky I have been in recent months, thinking I can just pull any old thing on and get out the door. Now it’s once again a carefully orchestrated project that involves lots of shuffling, digging, flipping, re-hanging, and cursing. This time, though, the challenge is because the remaining drains are at the super-long incision on my belly. One drain on each hip, like an unruly set of twins. I’m starting to despise those twins. I got a mild scolding from Jenn (Dr Spiegel’s PA) when I saw her Tuesday because I was wearing jeans, and they don’t want anything to rub on that gigantic tummy incision. I may just start wearing my pajamas everywhere until that bad boy heals. Or maybe I’ll wear whatever I want and send the same message that Shia LaBeouf sent. Seemed to work well for him.

The first thing the good doctor noticed when he graced my exam room was that I have several bruises on my leg. I got him good, though, by telling him they were from playing tennis. The look on his face was priceless. Oh how I wish I had a freeze frame of that look. That moment between what he thought (she’s been playing!) and reality (no way she could have played already, it’s only 10 days post-op) shines in my memory as one of my favorite moments.

Every visit to my doc’s office results in innumerable nuggets of wackiness. First runner-up for nugget of the day was when his nurse  said she thought my new chest looked really good. I said, yeah, if you’re into that sort of thing. What I meant was, if you’re into a mostly cleaned-up mess, a partially cleared train wreck, and that the docs did a great job with the concaved, ET-looking chest I ended up with after the infection. Compared to that fresh hell, the new, improved version is pretty amazing. And as a testament to the skill and artistry of the surgeons, yes, it’s great.

The highlight of yesterday’s visit came when the good doctor examined my tummy incision and took a look at my lower half. Remember how he thought I needed to gain a bunch of weight to provide the building material for the new girls? And how even after I gained several pounds, he was still convinced it wasn’t enough? Well now that the dye has been cast and the pounds that weren’t reallocated have stuck, he’s not happy with the extra bit that settled on my hips, and says, and I quote, “We need to suck that right out. We need to get rid of that. I’m going to suck that right out so it is gone.” I swear, There is no pleasing that man.


The Tennis Partner

After reading Cutting For Stone, I was hungry for more from author Abraham Verghese. Wow, was this a great book. Like some of my other all-time favorite reads, it took me a while to get into this one, but once I did, I was so well rewarded. I felt a little bereft when it ended, another sign of a great book. The characters were so richly drawn, they truly seemed like real people, and I was sad to think I wouldn’t know what happened to them for the rest of their “lives.”

I’m not crazy; this happens with good books, and I’ve heard other people say the same thing so I know I’m not crazy. At least not in this case.

I searched in vain for more books by Abraham Verghese and although he’s written prolifically for such esteemed magazines as The New Yorker and The Atlantic Monthly, he doesn’t have dozens of novels at the ready for voracious readers. He has written a book called The Tennis Partner, however, which I quickly scooped up on amazon.com. 

Verghese is an infectious disease doctor and has been a professor of medicine at Harvard and Stanford, in addition to being a bestselling author. The Tennis Partner tells the story of Verghese’s friendship in El Paso, TX, with David, a medical student who is a recovering drug addict. Their friendship grows amid a shared love for tennis, and they both find the game to be “an island of order in the midst of personal chaos;” in Verghese’s case, his crumbling marriage, and in David’s case, his drug addiction.

One of the things I love so much about Verghese’s writing is his innate ability to describe a scene in such a way that makes it familiar and easy to visualize. For instance, when writing about moving to El Paso, Verghese says “This is the great promise of moving: that if you fold your life into a U-Haul truck and put it on the road, you will be given a clean plate with which to approach the buffet.”

Beautiful prose. Simple and clean, yet so on-the-money descriptive.

It’s a great story, not just because of the tennis. Both men were struggling with different things in their lives, yet tennis became the equalizer. Verghese says, “In the way we controlled the movement of a yellow ball in space, we were imposing order on a world that was fickle and capricious. Each ball that we put into play, for as long as it went back and forth between us, felt like a charm to be added to a necklace full of spells, talismans, and fetishes, which one day add up to an Aaron’s rod, an Aladdin’s lamp, a magic carpet. Each time we played, this feeling of restoring order, of mastery, was awakened.”

I get that. Wow, do I get that. One of the reasons I wanted to get back to playing tennis as soon as I could post-mastectomy was to impose order on a disorderly life. And guess what? 9 days post-reconstruction, I already can’t wait to get out on the court and put this mess in order.

One line in the book has really stuck with me, and I carry it with me in my game. David and Abraham are battling it out on the court, David being the more experienced and younger (read: more spry, less creaky, and speedier) player. He always manages to best Abraham, and after yet another victory explained his winning strategy. It’s very simple. “Remember, the one with the fewest errors wins.”

True, so true, and not just in tennis.

I love tennis, and I’m fascinated by how the human body works. I’ve written about this before, and now that my latest surgery is in the rear-view window, I’m again impressed with and amazed by how our bodies react and heal.

I’m also fascinated by doctors. Surgeons, especially. Not in the “reverence for the white coat” aspect of previous generations, nor because of the fact that they perform a very difficult job. There are lots of hard jobs out there, and I’m sure there are plenty of things other professions require that docs wouldn’t handle well.

It’s more a fascination with what makes them tick and how their minds work. I always want to ask my specialists, why did you choose oncology? why did you choose plastic surgery? I’m overly curious (some would say nosey) about the minutia of their jobs: how many patients call them after-hours? how long does it take to repay med school loans? what do you do to unwind and feel like a regular person? I mean, after say, a 7-hour surgery in which they restore order to a hellacious mess of a chest wall, do they wash up, drive home in traffic, pop a beer and veg out? Or do they refrain from drinking, even after a long day, because they can be called into surgery at any moment?

Verghese writes quite eloquently about the physician as a regular person and of medical humanism. He’s an old-fashioned doctor in a modern world, and he teaches new-fangled doctors his ritualistic bedside observations. He believes medicine is a passionate and romantic pursuit, not just a science.

Kinda reminds me of my own infectious disease doc telling me that in my case, because of the post-surgery infection, he was practicing the art more than the science of medicine.  A lovely thought after months of exams, tests, and hospitalizations that had left me feeling like a piece of meat. Not Grade A meat, either.

As I prepared for my most recent surgery, I remembered a lengthy but compelling passage from The Tennis Partner. Even though my pre-surgery to-do list was a mile long, I found myself flipping through the book to find this passage. I wanted to re-read it, as if absorbing these words into my brain would somehow transfer into the surgeons’ hands as they cut me open and tried to repair the damage that had been done. It took a few minutes, but I found it.

Verghese was treating a young woman in El Paso with mysterious symptoms and no clear diagnosis. He writes about how as he entered her hospital room,  he was looking for more than just physical manifestations of an illness:

I was attentive to the aura of the room, vigilant for her icons — a doll, rabbit-ear slippers, a prayer card, her own nightgown. I inhaled discreetly so that her scents, all the eructations and effluvia that were hers, the redolence that night spell the name of the disease lurking below, could land on the free nerve endings of my olfactory nerve. Smells registered in a primitive part of the brain, the ancient limbic system. I liked to think that from there they echoed and led me to think “typhoid” or “rheumatic fever” without ever being able to explain why. If the diagnosis eluded us in the first few days, her chart would thicken as pages of computer printouts bearing witness to the blood urea, the serum creatinine, the liver enzymes, and other soundings accumulated. But no computer could make the mind-pictures I could form if given the right clues: a liver hobnailed by cirrhosis; a spleen swollen like a giant and angry thumb from mononucleosis; a smooth-walled cavity in the lung apex within which a fungus ball clatters like a bead in a baby’s rattle.”

I love the “eructations and effluvia” especially. That’s some good alliteration.

I also really identify with the patient, and know that I too have a chart that has thickened with computer print-outs and such. Not that it’s a contest, but I bet my chart is thicker than hers.


E Roosevelt said it best

“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.


1 week ago today…

I was out cold in the OR, having unspeakably nasty things done to my body to restore the damage wreaked by the post-mastectomy infection. Whew!

The first couple of days of week 1 are pretty hazy, thanks to my BFF morphine. Love that stuff. But my BFF knows its proper place, and we have short but infrequent get-togethers. This time around, my BFF gave me a terrible headache, which was quite rude, so I bid adieu to the pain pump as fast as I could.

Let’s start from the beginning. Or as much of it as I can remember. Readers, feel free to chime in when you notice I’ve left something out. We got to the Medical Center on time (6 a.m.) and I got right into my pre-surgery room. My beautiful gown and compression stockings were waiting for me, but I waited until the very last minute to don them. After some precursory steps, like accessing my port for the administration of the really gooood drugs, a gaggle of white coats entered the room.

Dr Spiegel led the way, with her PA Jenn next, followed by their resident, Dr McNight, then my favorite plastic surgeon. He was the only guy in the room. Yahoo, girl power! He had a cool wooden box in his hand and when I asked if it was a present for me he gave me one of his looks. Someday he’ll appreciate my humor. Inside the box was not a present, but his loupes, which sadly he didn’t offer to model. I’d love to see him in a pair of goofy glasses.

Dr Spiegel and Jenn started marking my belly and I’m so mad I didn’t think to take a photo because it was cool. They used a blue sharpie for arteries, a red sharpie for blood vessels, and a black sharpie for incision lines. Lots of arrows and lines later, there was a roadmap of sorts. Very cool. At one point, Dr Spiegel wasn’t happy with an incision mark so she had Dr McNight scrub it off my belly with alcohol and re-do it with the black marker.

After that it was time to head to the OR, and they must have given me a cocktail in the pre-surgery room, because I don’t recall anything after the sharpie party. When I woke up, some 8 hours later, I felt pretty good…but it was because I was wrapped in the loving embrace of some big-time anesthesia. Dr Ashmore, my hand-picked anesthesiologist, did a fantastic job of putting me to sleep, and more importantly, waking me back up. It was good and restful.

I’m not too sure about whether I was in a recovery room or went straight to the ICU, but once I got to ICU I recall that it was HOT. And I’m a Texas girl, so I know about some heat. The docs had warned me that the room would be warm, to help my newly transplanted blood vessels learn to regulate themselves in their new northern home. But wow, was it hot. Between the high temp, the two heaters, and the squeezing of the compression hose, I was roasting. I tried to be nice about it, and I think I only lost it once, when I begged one of the ICU nurses, probably Carol, to please please please just crack the door and let some AC in. Just for a second. She declined my request.

I spent the night in ICU, but thankfully the flaps, aka former belly skin & fat that were magically transformed into breasts, behaved and there was no drama (other than me begging Carol to crack the door, turn down one heater, turn up the thermostat or bring me a gallon-sized frozen margarita). The flaps had to be checked every hour, yes every hour, with a hand-held doppler. There were (until yesterday) some wires stitched on top of my chest that somehow transmitted audible sound of the blood rushing through my newly transplanted blood vessels through the doppler. It sounded a lot like a fetal heart monitor. And we heard it a lot. My flaps were cooperative, and the nurses were able to hear the blood rushing almost instantly after putting the doppler onto my chest. One nurse told me that sometimes it took 20 minutes to find the sound. I started to panic after a few seconds of not hearing it, so can’t imagine the size margarita I would need if it took 20 minutes to register.

The ICU room had a wall of windows with mini blinds, and the nurse was right outside the door at a desk looking into my room if not attending to her one other patient. Some people might think that would make you feel very safe and catered to, but it made it hard to sneak anything by her because she was always watching. If she wasn’t watching, somebody else was walking by. It was a constant parade of doctors, residents, nurses, PCAs and other people peeping into my room.

I got released from ICU after some really delicious jello and a contraband peanut butter & jelly sandwich (liquid diet…pffft) into a regular room on the 8th floor of Dunn Tower. Lovely view out the window of the heart of the Texas Medical Center, and more importantly, no heaters. It wasn’t exactly chilly in the new room, but so much better than the ICU room. Nevertheless, I did beg to have the tight, scratchy, hot compression stockings removed. Those nurses were not swayed by my shameless begging.

Apparently the docs were pretty pleased with their handiwork, and if you missed Trevor’s and Amy’s guest blogs while I was too loopy to post, go back and take a peek. Long story short, the flaps were cooperating, the morphine headache abated, some regular food arrived, and life rolled on. At some point they moved the flap checks to every two hours instead of hourly, which was mighty nice. It’s amazing how your perspective changes in a situation like that. After umpteen hours with no food, a simple PB&J was a delicacy. After being awake most of the night, a short cat-nap seemed a decadent luxury.

I’m sure I said some goofy stuff and probably offended someone at some point with my off-color humor. Apparently I channeled my mom, too, telling my friend Laura who works at Methodist and who visited me several times a day, “Thanks for dropping by.” Every time she came by. I was just being mannerly and didn’t realize I’d seen her a few hours previous.

There are conflicting reports on how the turf war between the Drs S played out. All parties are being quite cagey on the details of who did what part of the surgery, and like a good murder mystery, we may never know who real killer was. I have my suspicion, but even asking point-blank hasn’t garnered an answer, so we may have to label that information “permanently classified.”

I did get to skate out of the hospital a few days ahead of schedule, and even though I received impeccable care, I couldn’t wait to get out of there. Coming home is always sweet, but never as sweet as when I’m leaving a hospital room.

I have more mobility than I did after the mastectomy, but not as much as I’d like. The first few times I had to get up without using my arms but relying on my legs and abs, the hip-to-hip incision on my tummy protested mightily. But it got better every time, and now I do it almost without thinking about it. Almost. I still can’t walk completely upright because the incision is still very tight, but I’m not quite the Quasimodo I was in the hospital. I get a bit straighter every day.

I came home with 6 JP drains this time, and had to upgrade my VB sling bag to a bigger VB bag that could accommodate the drain party. I knew from last time around that 4 drains fit nicely, with a little extra room for my Blistex, some folding money, and a teeny ziplock bag of pills, should they be necessary. Six drains would have burst my handy little bag right open. Wonder how many drains this lady is toting in her VB bags?

I had my first real shower today, not counting the seated variety the hospital offers. Again, it’s the little things we take for granted. I’m down to just 2 drains and back to my sling bag, thanks to Jenn removing the 4 drains up top yesterday. She gave me a good report; everything looks good and is healing nicely. 

While I feel a whole lot better and am ready to get back to normal, my handlers think one week post-op is a bit premature to jump right back into the day-in, day-out routine. I am trying to take it easy. I’m resigned to the fact that I’m back to one outing a day for a while, and sadly, a doctor’s appointment counts as an outing. Yesterday I had a small entourage escort me to see Jenn, and we had a bite of lunch (sans margaritas) beforehand. The handlers insisted on snapping a photo of this maiden voyage, and there was some talk of me earning a margarita for every device I had removed at the subsequent appointment. Between the two doppler wires and the 4 JP drains, somebody owes me 6 margaritas. No salt.

Although I complain about going to the med center, there’s always something interesting to see along the way. Getting out of the suburbs is a good thing, and there’s a whole ‘nother way of life in this big city of ours. Last time I was at the med center for some testing, I saw this car and had to take a picture, to show Macy. I knew this car would appeal to her:

She loved the polka dots and said she’d like to have that car, then she saw the back and said forget it. Fickle.

Yesterday on the way home from the med center, I saw this:

and had to snap a picture. Yes, it is a zebra car, complete with a long tail. Gotta love the big city.