Sunday, September 7, 2008
The Chemo 3 pain in the butt came out of left field. I am 35 years old-- just turned-- and my upper wisdom teeth decided to make their debut at precisely this moment. Mouth sores, as you know, are common chemo side effects, and the chemo slows the rate of regeneration of cells in places where cells regenerate frequently (hair, lining of digestive tract, mouth). So when my upper left wisdom tooth poked through, it lifted off a big ol' dangly piece of skin that proceded to swell and hurt and then stabbed right into my inner cheek creating an ulcer.
A visit to the dentist ensued. Bless the dentist's heart, his technician walked me straight over to a neighboring oral surgeon. We discussed extraction. I looked him right in the eye and told him I would do anything, ANY. THING. to avoid yanking this puppy when I was going through chemo. Even best case scenario, the oral surgeon was only willing to yank it on the MORNING OF MY NEXT CHEMO (Friday, Sept 5). That would have left me recovering from wisdom tooth yanking and chemo all by my lonesome this weekend. Unacceptable. I made big huge puppy dog eyes at him. (Easier now that my saucer eyes are so much more visible-- oh, and by the way, my big ol saucer eyes may be a sign that I have thyroid disease. More on that later.)
Oral surgeon dabbed this magic medicine on my ulcer and my dangly gum and then told me to go to a compounding pharmacy and get some. It's called Benzoin Compound Tincture, and it's very hard to find. But it is very, very good stuff. My buffet of oral hygeine keeps expanding.
The Benzoin worked enough to keep me from being too miserable, although I spent the bulk of the remainder of Chemo three with a the left side of my face feeling swollen and throbbing. And by the time the days before Chemo 4 arrived, the ulcer had healed and the dangly bit had lost its swelling and there was no way I was letting anyone near my wisdom tooth.
But Chemo 3 ended up kind of blech above and beyond the oral issues. I had any number of days of feeling draggy and tired. These would be the "cumulative effects" I have heard so much about. I've been going to school daily for a couple hours a day, and one day I had to take to the teacher's lounge couch because I was pretty sure I was going to either pass out or puke. (I did neither, but it was a close call).
So, the verdict for Chemo 3-- it was the best one (so far) insofar as return to normalcy is concerned. I was back on my feet faster than any of the previous times. But it was probably the worst when it comes to longer-term recovery. I feel like I slide pretty far back around halfway through the three week cycle. I can't believe all I was able to do in the first week and how inconsistent these cycles have been.
Saturday, August 30, 2008
I lived through seven weeks of evacuation during Katrina, heartsick and frail with grief. I can't imagine what it would have been like if I were, at that time, battling cancer. What would it have been like to be displaced not just from my home, but also from my doctors and my treatments? How would my recovery have been effected if I were torn apart by the stress of evacuation and loss?
My heart goes out to everyone on the Gulf Coast. I wish them safe travels and a safe and speedy return to normalcy. And I feel so lucky, again, but so sad.
Friday, August 22, 2008
Anyone who thinks that second chances are precious, are rare, just hasn’t mastered the fine art of ducking out on things. I feel like I’ve had ample opportunity to reinvent myself throughout my life—new schools in childhood, new cities as an adult, college, career, divorce—and every time I’ve ended up tossed around, tumbled dry, and out the same imperfect soul. I’m not saying that Incarnation Number One of me was right from the very start; I’m suggesting that change isn’t my forte.
And “second chance” sounds so nigh-fatal, as though I wrested my fate as it dangled from the Scythe—Phew! That was a close one!
Okay, I don’t like to admit it, but in some senses that’s a little true. It’s just not true in that “right in the nick of time” sense. There was wiggle room, albeit not room for a big ol’ wiggle; my doctors weren’t gasping for breath and wiping their brows after my surgery—no high fives all around for defusing the C-bomb just before the ticker ran out.
Given my track record, this is better than a second chance, really. Having breast cancer carries with it not a clean slate, but one marked with a prescribed message.
Having breast cancer is like my 9/11. In the months following 9/11, everyone suddenly loved the United States. We were flooded in sentiment and affection. It didn’t matter what we were like on September 10; no one cared about that on September 12.
(You don’t have to agree with my politics to understand the analogy, but it helps).
I haven’t been offered a second chance with my diagnosis. It’s more like redemption, of a sort. I am awash in admiration and good will. There is this persona lingering in the periphery, a costume I could slip into if I wish.
Just two days after I shaved my head, a woman stopped me on the street to tell me how brave I am. And even though I’m only halfway through chemo so far, if I had a dime for every moment like that I’d have more than enough to buy a pack of cigarettes (A little dark cancer humor there). I am unwaveringly floored by the kind sentiments of strangers, but I’m no longer shocked speechless when someone says, “You go, girl!” when I walk by. When asked who her hero was on a college questionnaire, a student wrote that I was the bravest person she knew. “You’re gorgeous bald,” said a co-worker with whom I’d never shared a conversation before, “And you have to know that you’re sending such a powerful message to the girls you teach.” In the first four days back at work, I was given every compliment in the book by every manner of coworker—those who like me, those who didn’t, and those that never gave me a passing thought before. There are people praying for me that I’ve never met and probably never will. Even the grumpy guy who hadn’t spoken to me since last September shot me a smile in the hallway.
The post-cancer me is like the United States on September 12, 2001.
But this is not a second chance, not a blank slate. It’s a tremendous opportunity. Suddenly everyone thinks the world of me; where before was indifference is now admiration, where was dislike is now forgiveness. In everyone’s eyes I am a far better person than I was before cancer, and I didn’t have to do anything to earn it except keep showing up
But what did we do in the months following 9/11? And what did we do with all that love and goodwill? We squandered it. We blew it. We took advantage of the fact that the world felt sorry for us and used it as license to do unspeakable things. We blew it, post-9/11, or rather our government blew it for us. Imagine what the world would be like right now, if we’d spent the past seven years using our good stead with the world community to combat disease and poverty and environmental degradation. Imagine if we’d combined all the trillions of dollars we’ve poured into this ill-conceived war with all the support that was initially offered to us by the world community after the terrorist attacks. Our government turned away from perhaps the greatest diplomatic opportunity ever offered to this country.
I don’t want to be that same ninny. I don’t want to look back on this period in my life five years from now and think, “if I only had that same break again.” Please, God, I don’t want this same break again.
Can I be wiser than my government? Yes, I think I can.
Wednesday, August 20, 2008
Here I am on Day 7 of this cycle, and I've spent the past two days living my life at about 80% of my pre-chemo capacity. I've been up early, working a full day, coming home, and getting things done. Yesterday, I pretty much resumed my usual diet. I even had a glass of wine. This time around I had minor problems with diahrrea, but no problems with constipation even though I only took very minor preventative measures. My mouth is sore and that just started yesterday, so that may get worse. It's been fantastic, to be honest. If I could bottle this and sell it to other chemo patients, I'd be a zillionaire. I'm not discounting the fact that on days 1-4, I felt pretty crappy, but this kind of rebound is pretty remarkable, in my opinion.
(That being said, I have met people who said that they felt virtually no negative effects from chemo at all. I suspect that those people, like this most recent incarnation of Big Foot, are actually 96% possum.)
I do have a new symptom: minor numbness or tingling in my hands and feet. Right now it's not a big issue. When I sit or lie still for a while, I get a little coldness or pins and needles action. My RPN says that this symptom may be cumulative and (shudder) may lead to problems with my fingernails and toenails. So far, it's just annoying. Especially in the middle of "beginning of the school year" meetings.
A second symptom that I've yet to address has been acne. I've always had problems with my complexion. I used to joke (not funny) that it sucked to be divorced, childless, with grey hairs AND acne. But this is not the garden variety acne. And it's particularly upsetting because I'm, well, BALD. My face is HUGE. It goes away around halfway through the cycle, but it's a wicked indignity during the first week and change.
The day of chemo three, I had my first pre-chemo expansion (expansion #2 overall) of 60ccs per breast. Because of the horrible pain I'd been having, I hadn't been expanded for-- I'm guessing here-- around six or so weeks. At the end of the chemo 2 cycle, I started to actually feel ok, painwise, for the first time since my surgery. Again, no rhyme or reason-- but I wasn't going to look a gift horse in the mouth.
Despite my fears, the expansion went well, and I now have wee tiny little boobettes. I'd say that, misshapen though they are, the boobettes are as big as my mom's teeny, weeny A-cups. It doesn't do much for me, figurewise; I guess I do look a little less concave from my shoulders to my belly, and that helps.
One of the biggest complaints I had this round, though, was pain (again) during days 1-4. I have found this to be true every cycle-- that there's something in the chemo or in the 'roids that they make you take that causes the surgical site to hurt like a sonovabitch all over again. This time the pain was particularly pronounced; I imagine that was because of the expansion.
Also on the plastic surgery front, because I'm a teacher and would like to do as little harm as possible to my schedule (more on my teaching trials later), the PA at the plastic surgeon's office went ahead and scheduled my "swap out" surgery for December 17. December is a busy time for them and Dr. T is taking an extended vacation... and, I think the PA wanted to give me a light at the end of the tunnel. This is all tentative, of course, but it IS a light at the end of the tunnel.
I have yet to decide how far I want to go with the girls' expansion. For any number of reasons, I want to keep them small. But moreso than hair, when I see a woman with nice breasts, I get a little jealous. I definitely miss my girls way more than I miss my hair.
That's pretty much all the news on the physical side of things. Either later today or soon I'll update with more personal/work/emotional related stuff. I've not been as diligent with this blog as I would like to be. Ideally, I would have liked to have blogged every day even if it was just to say "Feel like shit." On the positive side, I've been keeping myself busy-- hence not making time to blog. On the negative side, I've been hiding out a bit from this process. If I don't write about it, I'm not thinking about it. Well, of course I'm thinking about it, but writing about it is PROOF that I'm thinking about it. Sigh.
Wednesday, August 6, 2008
This time around mouth soreness was more of an issue than it had been the first cycle. Some effects of chemo are supposed to be cumulative and I sure hope that's not one of them. If it is, I won't be able to eat by October.
That being said, I've been "less good" to myself in some ways during this cycle. It may be a ridiculous thing to say, but taking care of yourself takes a lot of thought and effort. My lifestyle choices pre-cancer were haphazard at best-- lazy choices, really. I gave little thought to what I put into and what I did with my body on a daily basis. During my first cycle, I had more supervision and more help-- foodwise especially. Left to my own devices, I lean toward making the lazy choices again.
In other ways, I've been "more good" to myself, especially when it comes to resuming a more active and engaged life sooner after chemo. I was on a plane on my way to my last-ditch summer vacation/family visit on Day 6 (I didn't get there til Day 7 due to flight delays caused by Our Fair President landing his crazy ass in Cleveland right when I was supposed to switch planes. And I spent Night 6 in a hotel paying a little for perhaps being too "up and at-'em" a little too soon). By Day 8, I was walking extensively. And by Day 9, I was eating relatively regularly. On Day 10, I even had a glass of white wine.
Today I am almost myself. A little more worn down, but feeling pretty good.
Sunday, August 3, 2008
Update 8/6/08: Thank you Christina Applegate for bringing young breast cancer into the mainstream media's view. Here's a quote from CNN.com :
Only 4% of women diagnosed with breast cancer every year in the United
States are under 40, but that still represents 8,000 women, she says. “If a
woman finds a lump, she still needs to go to a doctor and not be told, ‘You’re
too young to have breast cancer.’”
Thursday, July 24, 2008
But here's a list of stuff that I suffered through and realizations that I had during the three week cycle with chemo 1.
- Constipation/Diarrhea Cycle of Horror (with an occasional visit from Puke Evil): This was my biggest problem and the one most hard to determine whether it was primarily chemo or primarily painkillers. This began on around Day 3 where I was backed up and had been since before Chemo. Then I began to have intestinal cramps like you would have if you were going to have diarrhea, but there was no exit room for said poo. (The levees of my constipation held back the flood of the liquid crap). Despite taking the maximum dose of Senna daily and eventual Milk of Mag, I finally called the doctor in misery after hours on Saturday and was told to try the Magnesium Citrate. Unfortunately we only had the cherry flavor. After two doses of that, all hell broke lose in my body and I was pooing and puking, often simultaneously (thank goodness my tub is within barfing distance of my toilet. I'm sorry for the horrible imagery) for the better part of 14 hours. The situation finally resolved mostly somewhere in the neighborhood of the first Sunday.
- Regular bouts of diarrhea plagued me for most of Week 1 and kept me largely housebound because the bouts would come out of nowhere and be unmanageable. One afternoon midWeek1 I went to a coffee shop and had to come home in total panic because I just couldn't stop pooing.
- Hair loss: Head hair started going on Saturday, so we shaved it immediately. I may have jumped the gun a bit, as most of it is stubbly growing back. But, as untraumatized as I was about being bald, LOSING the hair made me sick to my stomach, so I would rather jump the gun than be constantly sick. Then of course, there was the Week 2 losing of my lady hair. I shaved the rest of that off pronto.
- Mouth sores: bothered me Week 1 and Week 3. A friend of mine whose husband is an orthodontist prescribed "Magic Mouthwash" that is a compound of pain killers and anti fungal stuff and all kinds of mouth health goodness. It helps. Big time.
- Weight Loss and Lack of Appetite: Week 1, especially Days 2-5, food did not sound good to me at all. It wasn't til Day 4 (I consider Chemo Day, day 1) that I finally said F*** it, and just started eating any ol' thing that appealed to me (as opposed to the veggies, protein, etc that I should have been eating). And frankly, I discovered that when the eating cards are down and you just can't stomach the good-for-you solutions, those foods that were comfort foods to you before chemo will often be comfort foods to you after chemo. I got most of my calories during Week 2 from spaghetti with Ragu and chicken ramen noodles with frozen broccoli. I just couldn't stomach yogurts and salads and healthy options. I went from 118 to 115 to 117 during the three weeks.
- Wacko Sleep Schedules: I've been staying up til 3 or so every night. Some of it is that I no longer associate sleep with comfort because of the difficulties associated with having my implant spacers. Some is the drugs.
- Acne: First couple of days, I had some nasty acne on my chin. I've always had bad skin, but this seemed quite obviously tied to the chemo and disappeared after Week 1.
- Exhaustion and general blahs: Emotions up and down. Lethargy which is no doubt tied to depression. Walking to the local movie theater and back kind of winds me.
That's all I can think of now. Hopefully, as I said, I will have a much better sense of things after this next cycle.
Friday, July 18, 2008
That's f-ed up.
I shaved my head a few weeks ago to beat the whole "falling out in clumps" thing. Fine. Good. I'm getting used to that.
But I just went to the loo and discovered that my hair "down there" is... well, falling out in clumps.
Whoa. Snap. That's f-ed up.
FRANKFORT, Ky. — Women working on the backside of Kentucky’s horse tracks will get breast cancer screenings under an initiative launched today by First Lady Jane Beshear. The “Horses and Hope” initiative also will raise money for research and outreach programs and sponsor breast cancer race days at Kentucky’s tracks to promote awareness.
Thursday, July 17, 2008
For lack of a better term, I’ll call it “lifestyle overhaul.”
There’s this thing on Facebook called “superlatives.” I’m a Facebook novice by choice. It’s exactly the kind of thing that I could get carried away with, and because of that, I have opted to just dabble to a tiny degree. But today, I accessed the Superlatives function—a program that lets you “nominate” your friends for all sorts of stupid, high school yearbook superlatives-- and realized that Jas had named me “most likely to party like a rockstar.”
It’s a backhanded compliment, to be sure.
Before cancer, I deserved that epigraph. I did, admittedly, drink to a degree that did, at times, cause concern both to me and to those that I love. I have no doubt that my lifestyle choices, pre-cancer, altered relationships perhaps even to destructive degrees. Hindsight—if I were to dwell on it long enough, which I won’t because I don’t need any more grief these days—might even tell me that I might still be romantically involved with Jason if my lifestyle choices had been different along the way.
The connection between breast cancer and drinking has been the subject of research. But the connection between smoking and cancer is fairly incontrovertible. And I smoked like a California wildfire from age 18 on. That’s more than half my life.
As the daughter of a victim of cancer—a man who died at age 27 from the disease—one would think I would “know better.” But I was also the daughter of a chain smoking mother, a woman who to this day balks at the idea of spending more than “scarf down your food time” at a restaurant where smoking isn’t allowed.
Quitting smoking has been a battle, but it is one that I am winning.
I wish I could say that I’ve won. I quit cold turkey—whammo! Done—after my surgery. At Bonnaroo, I gave in to my devils and allowed myself a single pack (as comparison, let it be known that I went through more than five packs at Bonnaroo the year before). And since then—more than a month now—I’ve been so good. But it doesn’t mean that I have “beat it.”
I went out for a beer (two to be fair) with a friend of mine tonight. It was gorgeous and hot and we sat outside and everywhere everyone was smoking, and I wanted to smoke SO BADLY. A few weeks ago, Jas and I went to a hookah bar for the first time, and my head suddenly became electric—hookah!?! Could I indulge my neediness that way? Is smoking a hookah as bad for you as smoking a cigarette?? I did my research only to find that the jury is still mostly out on that one.
It gets so bad sometimes that I think I would smoke a rolled-up paper towel just to go through the goddamned motions of holding something burning in my hand and drawing the smoke into my lungs.
There’s a woman in my neighborhood who, six months ago, went through the exact same breast cancer ordeal that I am going through now. And, like me, she was/is a chain smoker. Her doctors would not perform the reconstructive surgery on her until she quit smoking… which she did not, and could not. She did, just a few weeks ago, finally get her doctors to relent, but she’s still smoking. I’m not sure why my doctors allowed me to do the whole shebang. I told them I’d quit, but why did they take my word?
J’s dad had colon cancer—it was, and still is, a huge deal, for a while we didn’t think he’d make it—and his response was basically, “Smoking probably did this to me. The worst happened. I might as well not bother stopping now.” Likewise, his mom—younger than my Ma—had a heart attack a few years ago, and she stopped for a little while but is smoking again.
So, J has been really cynical about me and my “lifestyle overhaul.” And perhaps that’s how I’ve been able to go Cold Turkey; I have something to prove to him: that cancer smartened me up, that I’ve learned my lesson the very hardest fucking way possible.
Do I blame my cancer on smoking? It would have been easier to say no if my genetics tests had proven that I was predisposed to cancer. But they didn’t. My great grandmother died a smoker in her 90’s. My 58 year old mom started smoking in her teens and has never suffered consequences thus far. It’s so common to read stories of men and women living well into the triple digits smoking and drinking to rock star degrees.
I did, however, meet a woman in her sixties with lung cancer the other day at a “Look Good; Feel Better” event sponsored by the American Cancer Society. She’d just finished up a round of radiation because the cancer had spread to her brain. And when you meet someone with lung cancer, it’s hard NOT to understand what a boneheaded move smoking really is.
Louisville—Kentucky in general, actually—has one of the highest smoking rates in the country. Last summer, around this time, the city passed a smoking ban that caused a huge amount of controversy. Despite my status as a human chimney, I never really begrudged the move. I always knew, in my heart of hearts, that it was the right-ish thing to do (then, as I do now—believe it or not—I’ve always thought the BEST move was to force bars and restaurants to declare themselves “smoking” or “non-smoking” and leave it up to the fickle hand of the free market to do its fingery duty). Even in the dead of winter, I didn’t sulk when I had to take my dirty friend outside.
But one of the things that bugs me most is the number of kids who smoke in this city. I am only guessing here, but I am pretty sure that Louisville has a greater number of teen smokers than New Orleans did. I remember this time last year walking down to Starbucks and encountering a couple of students that I had taught, both of whom were smoking. They were well within their legal rights—clearly 18—and weirdly unembarrassed and willing to hold a conversation with me, cigarettes in hand.
I’ve always hidden the fact that I was a smoker from my students, and since moving to Louisville, I hid it from my colleagues as well, for the most part. It was April or so of THIS year that I ever smoked in front of a colleague (the same one I had beers with tonight), and it wasn’t until a Derby Party this year—the weekend before my biopsy—that I smoked around more than one colleague (two to be exact). After I was diagnosed, I mentioned my smoking to a colleague that I would say that I am VERY close to and she said, “I had NO idea you were a smoker; you never smell of smoke.”
I don’t remember exactly when I started smoking WITH my mother. It was definitely when I was still in college. I even smoked around my maternal grandparents in my early 20’s. But, in hindsight, what SHOULD have been my guide was the fact that I NEVER, EVER felt comfortable enough to smoke around my paternal grandmother—the mother of my father who died of cancer.
I was always too ashamed of the habit to smoke around her. This despite the fact that, ever since I was a child, the ONLY person who has ever been allowed to smoke in my grandmother’s house was my mom. Ma had an ashtray that lived in my grandmother’s dishtowel drawer. When we came to visit, the ashtray came out, and, even at the dinner table, Ma was allowed to light up. I’m not saying that my grandmother approved—but she accepted.
To my aunts and uncles who smoked (and still do), my mom’s status as “accepted smoker” made her a legend in the family. It’s been so long since I’ve been to my grandmother’s house WITH my mother, that I don’t know if this status still holds—I doubt that it does. But most of my aunts and uncles still hide their smoking from my grandmother—and during extended visits, they sneak out to various hiding places to indulge—places that I’ve learned and shared in my adulthood.
Retrospect on my lifestyle choices leaves me wondering and sad. The brother of my father who always seemed to be most touched by Dad’s death smokes and always has. Ma, who lost her husband to cancer, whose dad suffered terribly from emphysema and smoking-related heart ailments, and now has a daughter that is trying to kick cancer’s (and smoking’s) ass, still smokes.
Maybe Ma’ll be like my great grandmother; I suppose that was the gamble that I signed on to. I do know that my smoking was one of the many “make or break” issues in my romantic relationship with Jason, and I always postponed the “make” part of that, assuring him that “someday” would come soon.
Again, wondering and sad. And, frankly, absurdly, addictedly, wishing that there was a comparable bad habit that I could embrace without suffering the same shame and running the same risk.
(Many of my friends would answer: POT! Again, absurd to think that somehow me being a pot smoker might have been more acceptable to people around me than being a cigarette smoker.)
Wednesday, July 16, 2008
Permission to skip self-exams a relief for some, perplexing for others
Seriously?? Perplexing-- HELL YEAH.
Just a little FYI, this 34 year old woman who was as lumpy as they come and who did discover her malignant tumor by her own little self would strongly recommend that you completely ignore this as total and complete poppycock.
According to a review by the Cochrane Collaboration, an international
organization that evaluates medical research, there’s no evidence that
self-exams actually reduce breast cancer deaths. In fact, the often-recommended
monthly chore may even do more harm than good, according to the group’s analysis
of a pair of studies of nearly 400,000 Chinese and Russian women...
...The issue is complicated, acknowledges Dr. David B. Thomas, breast cancer epidemiologist at Seattle’s Fred Hutchinson Cancer Research Center and professor of epidemiology at the University of Washington.
...“The price you pay for doing more thorough breast exams is you’re going to find more benign lesions and that will result in unnecessary surgical procedures,” he says.
...“Women in their 20s and 30s rarely get breast cancer,” he says. “But they do have a lot more benign lumps and bumps. It’s not worth emphasizing breast self-exams for women at this age.”
Tuesday, July 15, 2008
Wig shopping wasn't traumatic so much as just uncomfortable. I did buy a very sassy, very "Young Bonnie Raitt" stawberry blonde number, but I can't imagine where I will wear it. None of the wigs looked like "me." In varying degrees they all struck a very Barbie note; whose hair, in real life, is that shiny, that nuanced of shade, that healthy and swingy?
That's me with the penguin over there. I'm lucky to have been blessed (as someone just said in email) "good cheekbones," big eyes, and a pleasingly shaped head. For the most part, I've been rocking the bald look with a pretty good attitude.
What's unnerved me to a certain extent is the amount of attention that I attract.
Here's something interesting (pardon me for working through this post as I write, I'm suddenly not sure where to go with this): When I started writing this entry, I was working on the assumption that I attracted so much attention because I am bald AND I have/had cancer. I DO, I admit, definitely cut a very "Cancer Girl" figure-- I'm short, my booblessness makes me look a little scrawny, and when my make up wears down I can be pretty pale. But the question remains: if I saw a bald woman walking down the street, would I assume she had cancer?
Honestly, only one person whose attention I've attracted has directly referenced cancer. On Sunday, I went to the movie theater and a good-looking black guy told me to "Hang tough, girl." Twice. Once on the way in. Once on the way out. The first time rattled me, brought tears to my eyes. The second time it made me laugh.
Actually, that's not true. Last weekend at IKEA, an older woman in a wheelchair caught my attention by saying "Excuse me, lady" and then she yanked off her baseball hat to reveal a kindred bald pate. I didn't know what to say. It does seem apt to acknowledge my sisterhood with these women, but what's the appropriate greeting? We should have some sort of Cancer Code. Like witches (or Wiccans if you prefer) say "Blessed be" as a greeting. Maybe I should start a movement. Maybe our code should be "Hang Tough, girl." (I find the whole "Hang Tough" thing immoderately amusing because of the current revival of the New Kids on the Block. Did anyone really miss them?)
Anyway, every other person who has said "You look great" to me, or some variation thereof, may have meant just that. My local Starbucks barrista went so far as to ask me what inspired the "fashion statement." Maybe with more practice, I will come up with a more couth answer than "Uhhhh... cancer? Chemo? Uh, I had to shave it because I had uhhh... cancer." Dude took it totally in stride. "Cancer. Fashion. Fashion. Cancer. Whatever. You look great."
So maybe it's only in my head that I am attracting attention because I am Cancer Girl and that makes me uncomfortable. I'm weirded out in my noggin by the sense that there's pity being whiffed in my general direction. But maybe I should start thinking of it as "I'm attracting attention because I look great, and that's fantastic."
Honestly, once upon a time, on the day here and there when I attracted attention because I was cute and I had a HUGE RACK, I rather appreciated the compliment inherent in the attention. (I know I part ways with most feminists on this, but I guess it never happened enough or in a crude enough way to ever really strike me as "objectification.")
And some of my favorite people have been bald. Sinead O'Connor is a fracking nutcase, but she's always been gorgeous. Until today, I'd somehow forgot that the greatest female action hero in history-- Ripley from Aliens-- was bald in #3. Natalie Portman was bald in V for Vendetta (which I've yet to say). She's not only beautiful, but smart too. She even said at the time that she wished she could keep her bald head. There's a great gallery of "Eight Women Who Look Better Bald Than Britney [Spears]" here.
Truth is, though, I would put Big Money on a bet that the moment I step off the plane in New England to visit my mother, if I am not sporting a wig, she'll offer to take me to a wig store. When I called my mom and told her I shaved my head, she said, "Why on earth would you do that?" Again, not very good with the snappy comebacks: "Uh... started to fall out. Couldn't handle it. Freaked out." Her response: "I bet you look like a dyke."
And that's where so many people are when it comes to hair. If you're bald, you're either Cancer Girl or a lesbian (and not the glamorous kind--the gender bending, threatening kind) or wanting to draw some sort of attention to yourself for a personal or politcal reason. And although my mother would keel over if I were a lesbian (she's not a bigot-- I don't mean to make her sound bad; she's just of a certain age), I think the latter would be the worst for my mother. We're New Englanders. You just don't make a S-P-E-C-T-A-C-L-E out of yourself if you can do anything to help it.
And I can do something to help not make a spectacle out of myself. I could wear a wig. But I don't think I will. Because I look great.
Friday, July 4, 2008
Yesterday's appointment-- the day before a holiday-- took around 6 hours and we were the last ones out of there. Jas stayed with me practically the whole time, especially after hearing the long list of possible side effects that included things like "the feeling that you might poo in your pants." I'm not kidding.
Luckily none of those came to pass. It was, for the most part, boring and uneventful. And that's a seriously good thing. The nurses were lovely and paid lots of attention to me, despite the fact that my lengthy appointment encroached on their long weekend.
The hook up to the port was no fun, but not worth the $35 I found out the pain prevention creme costs. I can cowboy up for the pricks.
Mostly it was just a lot of super groggy time wasting. If I hadn't been so afraid of pooping my pants, I would have slept through most of it.
And that, honestly, remained a problem for most of the day-- the fear of falling asleep only to wake to classic chemo symptoms had me so afraid that I didn't go to bed til 3am. Most of the evening, I ate steadily (just in case I couldn't today) and was super groggy and stupid feeling. A little stumbly and my joints ached.
That's about it. Not fun, but not horrible. I'll let you know how it goes day by day.
Friday, June 27, 2008
Fun Fact of the Day: Did you know that the US Conference of Mayors recently recognized Louisville as America's "most livable" large city? Totally deserved. Except in mid-February when it's &%$&^ cold and %&&$#!! grey and &%$%!! gloomy...
Anyway, chemo starts on July 3, and I'm getting my chemo port placed on July 1. (yes, Megan and Jana, I finally decided that I should get a port... I'm still VERY, VERY uncool with the idea of one more foreign object in my body, but I'm trying to tap into my inner science fiction fan to try to reimagine it as a "neat thing.")
I've been told that chemo means one crappy week followed by two good weeks, so I am going to try to do some traveling during those two "good weeks" this summer. I'd like to hit NOLA and New England, at least, so those of you in those locales, please drop me a note and let me know any BAD dates to visit in July and August.
And yesterday had a full FOOT of hair cut off... I should have done it a long damned time ago. It's pretty cute!
love to you all,
Thursday, June 26, 2008
Jason just came into the kitchen and stuffed a Red Sox cap on my head and gingerly tucked all the hair that he could under the cap. He's trying to show me that I will be "cute" bald. That's because I sent him a link to Bald is Beautiful, the website of an ovarian cancer survivor (and fellow Columbia grad-- though she went to Barnard) who decided that she was so gorgeous bald that she became a bald model and a cancer activist. (I'm oversimplifying-- check out the blog)
It's been a dreadful couple of weeks. Pretty much since Bonnaroo I've been very blah, mostly because I am in constant unrelenting pain. It's like someone is nailing nails into my non-existant breasts all of the time. It was so bad this week that my plastic surgeon refused to "inflate" me. He says he hasn't seen this much pain this far along in a long time. And sometimes I wonder if he thinks I'm full of crap. But I'm on a steady diet of Advil, Darvocet, and Valium at all times. Not too good for the noggin. Perhaps this is a preview of what chemo brain will feel like.
The big news is that chemo starts a week from today-- July 3. And Tuesday, July 1, I have to have surgery to put a port in. For some reason the whole port thing has me absolutely berzerk. I do NOT want to do this, but everyone swears that chemo will be too hard on my veins. When I got home from that dr. appointment-- the one informing me of the port stuff-- I had a total sobbing meltdown.
Jason has been doing a good job keeping me busy. He'll be gone one week in July and the entire month of August (including our shared birthday weekend, which burns my butt). Sunday we went to a Louisville Bats game (they won). Yesterday we went to Waterfront Wednesday, a free outdoor concert featuring Celtic band the Elders and a performance by Sonny Landreth.
Students have started to swing by. One brought me dinner on Saturday and three kids came for an impromptu visit that lasted nearly three hours on Tuesday.
On Tuesday too I had lunch with the "breast cancer girls" who basically assured me that most of what I am feeling and experiencing is 100% normal. But more importantly, it was super important to spend time with women who have come out on the other side of this and are beautiful, happy, and vibrant.
Another setback has been that insurance won't cover anything related to my fertility issues. So if chemo sends me into early menopause, that's all she wrote when it comes to spawn of my own creation. I'm pretty much at peace with it, but that was certainly the source of another meltdown around a week ago.
I do find it a bit ironic (am I using that word in the right way or in the Alanis Morrisette way?) that I've always been totally squeamed-out by the idea of breast feeding. The idea of a wee one latching onto your boob and slurping away always made me go "ew." (Although the idea of Johnny Depp doing the same thing has never made me go "ew." Quite the opposite.) Well, that's now out of the question.
AND back when I was pregnant, I was totally happy-happy-joy-joy about the whole thing EXCEPT about the idea of actual childbirth, whether it be natural or C-section. Just ten weeks or so into my pregnancy and I was already having panic attacks about the act of birthing. Of course, back then that fear disappeared tragically. But now I may never even have the option of experiencing that fear again. (Don't worry, it will be replaced by new fears: the fear of adoption agencies taking a look at my lifestyle, my credit rating, my health... the fear that my foster kid would be better off with a mommy AND a daddy or a mommy AND another mommy or a daddy AND another daddy...)
Since I got home from Bonnaroo, I've literally "powered down." It's been me on my back on the couch all day every day. The decision to do Bonnaroo this year ended up being awesome for the soul and terrible for the body.
The festival does an excellent job providing access for people who are mobility impaired. Our campsite was just a two minute walk from the main gate, I never had to wait in line, and if I'd wanted to, I could have sat in special access seats for just about every show. We borrowed an air mattress from a friend and that turned out to be even more comfortable than my own bed.
All that being said... by the time I got home my body felt as bad as it did the first few days after surgery and I've spent this whole week clawing my way back to where I was before I went to Bonnaroo.
Worth it? You know, it was worth it for four whole days of NOT being "Cancer Girl" alone. Add to that Willie Nelson, Pearl Jam, the Swell Season, Chris Rock, Ben Folds, Drive by Truckers, literally the best line-up of bluegrass artists the country has to offer, and like 100 more artists... it was worth it. I keep having to remind myself of that.
So, the pain drugs are still getting in the way of my ability to read (or "understand," I should say... I can read just fine). But two brilliant friends of mine sent me the DVDs of seasons one and two of Battlestar Galactica, and now I am a fracking addict! I find myself rationing... "No, Chip, SIX episodes is too much for one day." Holy cow. That's some good tv.
Unfortunately I've entered the "expansion" stage of my reconstruction, so weekly I go to the plastic surgeon and he (lovingly) injects 60ccs of saline into each of the footballs in my chest. Each expansion gives me a half a cup size and renewed soreness and pain as my muscles stretch. And as I check out my Franken-boobs and consider the prospect of more weeks of soreness, I can't help but wonder if I couldn't be perfectly happy going through the rest of my life as an A-cup. After all, my Ma has always been an A cup and she seems perfectly happy. Of course.... she's a crazy cat lady who probably hasn't had sex since the 1970's... but, she's happy.
(Back when I was a kid, in the sports section of the New London Day there were ads for strip clubs, and I remember there was one performer who used to swing into town regularly. Her name was "Busty Heart" and her measurements were advertised as, like, triple G or something. I wonder what Dr. Thornton would say if I went into his office and said, "You know, I think I'd like to keep going til I'm a triple G.")
(OMG! Busty Heart has a wikipedia page!!! http://en.wikipedia.org/wiki/Busty_Heart She is 46H-22-36. Well, bless her heart.)
Speaking of "bless her heart," I went to have a pre-chemo echocardiogram on Tuesday. That's an ultrasound of your heart. And apparently the lab tech didn't read my chart or something before she started on me because when she undid my hospital gown and saw the Franken-boobs, she GASPED, dropped my gown, and said, "Oh my god!" Totally understandable, and I was totally not offended, but it was a little bit unsettling. What was MORE unsettling was the fact that she ended up calling another lab tech to actually do the echocardiogram because she was afraid of hurting me... but she stuck around and chatted with me and when she found out I was unmarried, single, childless, and DIDN'T OWN A DOG, she started to WEEP!!!!
Bless her heart.
For my research-minded/science-geek pals, right now my planned chemo is a combo of taxotere and paraplatin for 6 months and a year of herceptin. (Last week, I thought it was called herpecin, and was totally confounded when I googled it and found it to be a treatment for herpes. I was like, "HERPES? Is there something they're not telling me??")
Anyway, that's all the news that's fit to print. Congrats to the Celtics. And congrats to Jamie Lynn Spears for not giving her kid too much of a stripper name.
And I send super special love to my Wisconsin support.
love to you all,
Hrumph. I've started this email a dozen different ways, but none of them sounded quite right. So, I'll just jump to the point.
The oncologist trip yielded the first "bad" news I've had for a while. While I'm hunky dory and healing well and feeling much better than I ever thought I would at this point, it turns out that the tumor was much more agressive than the doctors initially thought. And that means I'm looking at a pretty aggressive round of chemo to come.
I don't have much in the way of details; my brain kind of turned to oatmeal when the word "aggressive" came out of Dr. Williams' mouth. I have another appt with the oncologist in two weeks to tell him what I've decided. But the recommendation is 6 mos of chemo-- once every three weeks-- and a year of hormone therapy. I have at least four weeks before I can start the chemo, and I may delay it a bit longer so I can travel and soak up some summer fun before I have to dig in and deal with it.
Ma was devastated. I had to take her to the airport right after the appt, and I felt so, so bad putting her on a plane in that state. I think we were both pretty convinced that I might escape chemo totally-- or at least qualify for some weeny chemo. I'm pretty shaken up, too, but I just need some time to get used to the idea.
Anyway, now that I am up and running at around 75% of my usual self (I'm even driving now!), my priority is to have the best summer that I possibly can. So, with that in mind, I've decided to go to the Bonnaroo Music Festival this weekend. Jason and I got tickets back in March, and as soon as I was diagnosed I basically wrote off the possibility of going. But Jason has assured me that all I have to do is go and have fun, and he'll take care of everything else. (When else am I going to get to go camping and have someone else do all the crap work like setting up tents and whatnot? It's like having my own sherpa!)
So, that's the news. Not as good as all the other post-surgical news. But, you know, I just have to take it all in babysteps.
Hope all of you are well.
Lots of love.xoMRC
And tomorrow is the next and last Big News day for a while. Tomorrow I meet with the oncologist to find out what he thinks about chemo. I'll drop you a note to let you know how it goes. Ma's heading home tomorrow, and by next week my time is finally my own and I will start getting back to y'all on an individual basis. Between my sheer exhaustion and the constant company, I've found it impossible to establish anything resembling a routine.
But again, thank you all from the bottom of my heart for all the love and support. Continue with the crossed fingers.
Lots of love,MRC
Sorry for how long it's taken me to get online. Figures, for this rabid writer/reader that the ranges of motion most effected by the surgery has been those most required by acts like typing or reading. I'm still struggling to hold a book open, and this email will still have to be short.
Today was my first post-operative dr appointment, so I have a lot of good news to share. The report whose name I forget (I keep wanting to call it the "toxology report" and that's because I've been watching too much HOUSE/Law & Order/etc... ) came back to say that (a) they are 100% sure there was no cancer in my sentinal lymph node (b) there was no detectible cancer in the right breast and (c) the tumor was .3 cm smaller than it appeared to be at the time of surgery. And all together that means my cancer was Stage One. Dr. DeWeese said it was the "best possible news" given the circumstace.
Chemo, he says, is not off the table, though. I will have an appointment with an oncologist soon to talk about life expentancies and rate of recurrance. But it looks good. It's very exciting news. And it's truly unexpected, insofar as I'm concerned. I feared the worst (what with my rock star lifestyle and all, ha ha).
The recovery process has both been way better than I expected and way, way worse than I expected. The first few days were WAY better than I expected. I was pretty well convinced I'd bounce back in record time. It wasn't until I got home from the hospital that things got really bad pain-wise. While I make small improvements every day ("Yay, today I can flush the toilet on my own!" "Yay, today I can get from standing to sitting!!"), it just doesn't seem like enough to me. I woke up this morning and burst into tears. I'm just sick of being in pain and sick of being a patient. When I told my doctor all this he basically said I was being too impatient. I could expect a week to ten days more before I feel better.
People have been awesome. My mother is pretty much convinced that I'm the most beloved teacher at my school based on the volume of cards, flowers, and food I've received. Every day a different teacher shows up with a whole bag of dinner. Ma has bent over backwards. Jason is home now and has been excellent about listening to me and helping me out.
Truth be told, I've been so preoccupied with the pain and my limitations that I've not started processing the more emotional elements of the surgery to any great degree. Over the past few days I have gotten out of the house a couple of times and my greatest self consiousness has been with the stoop of my walk and with the two grenade-sized surgical drains hanging at my waist (basically I have two muumuu type dresses and that's all I can wear until I get rid of these drains. It doesn't help that it's pushing 90).
Anyway, thank you so much for your love and concern. I feel very lucky right now despite my sour mood. I'm sorry I've been so quiet. Hopefully things will start heading back to normal-ish in the next few days.
In a half an hour I can't eat or drink anything, so I am headed to bed. My mom arrived this morning (after an overnight weather-related delay-- I felt so awful, she was SO sad) and my uncle Tim arrived this afternoon. They are such great sources of support.
I'm sorry that I haven't gotten back to all of you lately. But I will be at Norton Suburban Hospital here in Louisville. And if you want to check up on my you're welcome to call my mom. Hopefully I will be in the hospital for two days or so, but it may be a few days before I am able to (or feel like) answering my own phone.Send me good vibes.
Love you all.
Monday, June 9, 2008
It's been eleven days since the surgery and while I am still in a great deal of pain sometimes and my range of motion remains limited, I am pretty much back on my feet. I have a lot to catch you up on (although, thus far, no one has read this blog), so that will take some time.
The short story is this. The surgery was nothing like I thought it would be. I think that's thanks at least in part to the fact that I was so medicated by the time they prepped me for surgery that Hunter S. Thompson would have been proud.
If you remember, my greatest fear was the anesthesia. I must have mentioned that to someone at some point because I have zero recollection of being put under. None. Total blackout. I have little recollection of much after the nurse gave me what she called a "martini" (or two or three-- I seem to remember her adding more and more to my iv). And I have little to no recollection of waking up from the surgery. I just tonight found out that I pitched a fit with my patient navigator about not having my glasses. Long story which I'll try to fill in later. Seriously, the fam dropped the ball on that one.
The other big fear was the fact that I would wake up and get The News. Again, I don't remember much of this except not being able to articulate the question when I awoke. But in the end the answer was ringingly positive. The sentinal node tested clear. The cancer had not spread.
And the first couple of days-- the hospital/morphine days-- were way better than I thought they would be. Despite the fact that I barely slept in the hospital, everything else seemed really hunky dory. It might have been the dope. It might have been the euphoria of the good news when I had anticipated bad news. But I seriously felt as though recovery was going to be a piece of cake. My range of motion seemed good. I was reasonably comfortable (drugs).
It wasn't until I got home that things went to shit. I became stiff and every movement became an effort. I couldn't switch positions without help (you don't realize how dependant you are on your arms when it comes to leverage). I could only sleep, as though in a coffin, on my back, arms propped up, unmoving. I woke every four hours, max. I was peeing constantly and never pooping-- the constipation got so bad that on Sunday after the surgery, I OD-ed on laxitives and suffered the gut mangling consequences for two days. Every inch of my body hurt-- what didn't hurt from the surgery hurt from the awkward and unnatural positions in which I had to sit and lie.
By the sixth day after the surgery (thankfully, the day I had my first post-op dr's appointment), I was a weepy, angry, despondent mess. It seemed as though nothing was getting better, especially when I would wake up in the morning a mess of aches, painkillers worn off, still exhausted. After the highs in the hospital, the unanticipated depths of the lows when I went home made me feel as though something had to have gone terribly wrong.
And of course, the doctor said that everything looked as good as it should look. I was healing beautiful. The pain was to be expected. I might consider amping up the painkillers. Otherwise, I was just plain ol' being impatient.
More good news from the doctor. There was no cancer in the right breast. The tumor in the left breast was 1.7cm, and that's .3cm smaller than they thought it was from the ultrasound. The final analysis of the sentinal node says that it was, indeed, 100% clear (Megan-- the cancer survivor I met just before my surgery-- had her sentinal node test clear during her surgery and then unclear in the final analysis-- horrors).
And so all of this means that the girls and I were Stage One. We caught it early. All those piles of bad thoughts pre-surgery were just wrong. All that dread that I felt about my rock star lifestyle-- the heavy drinking, the more than 15 years of smoking, the lack of exercise, the taking of my body for granted-- all that certainty that this was PAYBACK-- well, it just goes to show you that I am one hell of a lucky S.O.B., now doesn't it?
I guess saying that I "dodged the bullet" is a bit like the broadcasters saying that New Orleans "dodged the bullet" after Katrina. Sure, NOLA DIDN'T get hit by the Big One. The Big One would have wiped out the whole city. But it was still devestation in grand scale. And I mean, Stage One is kind of a blessing in the larger scheme of things. But... it's still cancer. And I still lost the girls.
Wednesday, May 28, 2008
It's clockwork, folks. I can only hope that that doesn't mean tomorrow will be a bad day.
Got a phone call tonight after 9pm from Mom. Hysterical. Hyperventilaing. Her plane missed the connection in Cleveland and she's stuck there for the night.
Immediately my spidey-sense care-for-others thing kicks in, and I cry with her on the phone but I also realize that it's more about her than about me.
Still, that news coupled with the fact that my dryer decided to break down today in the middle of drying the sheets I bought for her bed...
I don't mean to be melodramatic, but still. Two pieces of frustrating and bad news in three hours?
Sunday, May 25, 2008
Yesterday was my appointment with Glamour Shots. Probably, in the end, an enormous waste of money (what a racket that is! I had a coupon but still dropped some serious cash to order three 8X10's. Normally each photo you order is $60). The women there were very sympathetic and did seem to "hear" me when I stressed that the photos should "look like me, only better." I did engage in some serious eye-rolling when they whipped out the rose petals and sunglasses. But in the end, the hair and makeup person did a great job, and I found three nice pictures out of the several dozen that they took. The photo service will "glamourize" the photos with some serious airbrushing, but I couldn't get over the fact that even all made-up and gorgeous, I looked tired and old.
And if I hadn't been in a funk up til that point (and I was already calf-deep in the funk), that certainly sent me on a spiral downward.
I didn't really recover until this morning, and even then I don't know what put me back in a saner frame of mind. I guess being productive helps (I tend to make things a zillion times worse when I am blue by becoming a lazy lard-ass and then feeling even worse about myself for being such a slug). I graded around 30 papers this morning, probably more generously than normal. Then I headed out to the Kentucky Flea Market, which was, in the end, a fun goofy time. Swung by Borders and picked up a gift for a departing colleague and Lowes for some paint. Then passed by the house, picked up some cds that I'd loaded onto the iPod and brought them to Half-Priced Books, where I traded them for $20 and five bargain hardcover mysteries.
Then back to Quills. And here I am.
In retrospect, I didn't really get much of substance done today, but at least it kept me out of my own brain for most of the day.
There's a lesson to be learned here. Something about "it doesn't matter how much you think about shit... yadda yadda." Or something about "idle hands... yadda yadda." Mostly, "don't give into the dark side." Or something like that. Because let me tell you, I've been leasing to own in the dark side for the past eighteen days. And that ain't good.
It's also been very not good for me to be alone all this time. I swore up and down to Jason and to Ma that I would be A-OK for six days on my own. Not entirely true. Not entirely untrue either. I just should have been more proactive about finding someone to have fun with this weekend, rather than wallow 24/7 da solo.
Friday, May 23, 2008
Otherwise, it's been a rough few days. It's just not getting any better and it's probably not going to get any better for a while. Ups and downs. Today my biopsy site began to hurt so bad that I called the doctor to make sure it was normal (it is). Way to have a delayed reaction, body! It's more psychologically painful than it is physically painful. It sucks to walk around with your breast hurting. And I swear the lump is getting bigger. I doubt it is, but it sure feels like it. I don't have to grope around anymore to find it; I can just hone in like a missile.
Today was the last day of school and the last day of work for me. Both a blessing and a curse. As much as I don't feel particularly connected to the school in the way that I was to my school in New Orleans, it's hard to be exacting myself from the community at a time like this. Knowing that after tonight (an end of the year party), I'm pretty much alone.
Much has been said about people wanting to visit and bring me food and whatnot. It's so nice that people even think that way, but I'm a terrible cynic. I gave everyone Ma's phone number and let them know that she'd be my PR agent for the first week or so.
I have been in touch via email with two young women who are breast cancer survivors and we're trying to hook up for lunch or coffee on Tuesday. I am totally looking forward to meeting them. It will be so nice to have that perspective.
I've also done something potentially very weird. I've made an appointment tomorrow at Glamour Shots to have a portrait done. Is that morbid and gross? I just haven't had a nice picture of me taken since my wedding, really (that was 9 years ago). I just want to have a record of the "now" me. A good one. Maybe not morbid and gross. Maybe just corny and naive.
One of the "nice" things about all of this is that it has put me back in closer touch with some long lost friends. And speaking of corny, but sometimes old friends really are the best. Got a great response from one of my college roommates saying, "This may be weird to say, but you're going to be GORGEOUS bald with your big Sinead [O'Conner] eyes!" That email may have been the highlight of my day.
Wednesday, May 21, 2008
Bless his heart, Jason stuck around long enough to help me finish painting the living room. He'd hoped to hit the road around 1 or 2 pm, but he ended up leaving around 7pm.
The parting was painful on my part-- perhaps on both of our parts.
I don't want to go through this without him. But I have to. Again, I don't want to talk about it right now.
Tuesday, May 20, 2008
Today was a grim day in the world of politics and cancer. As a former New Englander from a family that's been New Englanders since they arrived in this country, I am a card-carrying member of the Kennedy Fan Club. And dear old Ted was diagnosed as having a (so says the media) an inoperable malignant brain tumor today. Be well, sir.
Also today, President Carter's chief of staff, Hamilton Jordan, succumbed to a twenty year battle with cancer during which he endured more than three different types of cancer.
My Obama vote didn't do much good. Part of me wishes I'd just voted for Edwards. But I'll keep the faith.
I'm a political junkie, so presidential politics have been on my brain since the candidates first stepped onto the playing field (seemingly years ago). But since my diagnosis, I have to admit that my thoughts have taken a more fatalistic turn. When imagining worst case scenarios for myself, I find myself musing about how willing I would be to fight to live if we ended up facing four more years of a Republican president. Mawkish, perhaps. But I do go there.
It's been a relatively lousy couple of days. I'm not really sure what counts as "meltdowns." Did the fact that yesterday I couldn't get a dentist appointment, got off the phone, and bawled count as a meltdown? It was only tangentally related-- I feel like anything I can do to be "clean" when I have surgery will help me fight against the possibility of infection.
Does the fact that I'm already having (minor right now) insurance woes and cried because I got frustrated with that count as a meltdown?
I guess the biggest news right now is that, unbidden, my uncle/godfather is coming down from Massachussetts for my surgery. I was not consulted. I still haven't been consulted. My aunt called my mother and told her that my uncle had made a reservation.
I am weirded out, and perhaps weirded out most because there's a weird (that word again) little quirk in me that feels somehow like this is an honor. I'm not close to him, although I consider him-- now that I have lost both of my grandfathers-- in a fatherly sort of way. He is my father's eldest surviving brother, and when Dad was alive, they were best friends. Went to college together, played hockey together, pledged the same frat. He has three (gorgeous, perfect) daughters of his own. He's also a very important businessman whose family bemoans the fact that he works too much. It's hard to imagine him asking for time off (does he even have to ask?) to be with his niece during her mastectomy.
My mother thought I would be upset at the news that he was coming because of my neurotic need for privacy. But I never even thought to be upset. I'm happy for her; she shouldn't have to be alone during this. And, I guess I see this as his tremendously generous effort to be my father's surrogate during this difficult time.
These past few days when things have felt very dark, I've become worried about my ability to cope with the aftermath of this. But I don't think I want to talk about it right now.
Today I purchased two post-op mastectomy camisoles meant to comfortably hold my drains (the word makes me want to hurl) and replace, I suppose, my psychological need for a bra. They both also include little breast pillows to tuck into the shelf bra, so I can approximate a figure after my surgery.
Speaking of which, last night, for the first time, I dreamt about it. I dreamed that I had the operation and was leaving the hospital and it didn't hurt and I already had tiny little breasts. Generous A-cups maybe. I put my hands over my breasts, and they were hard, but they were breasts. And I thought, what's the point of doing any more reconstruction? I can live with these. Overall, a good dream.
I'm working on a handbook, mostly for my mother, with the nuts and bolts of directions to local grocery stores and passwords for my home wifi. But I'm also including a list of desires. Things like: "At least for a while following the operation, I hope to approximate a very healthy diet. I expect my sedentary recovery will negatively impact my weight. Without the blessing of my ample bosoms to offset the rest of my voluptuous figure, I expect that I might appear a bit chunky after surgery. I'd like to lose weight if anything."
Sunday, May 18, 2008
She emailed me her flight plan this morning and she reserved for 14 days. Again, trying very hard to balance her needs and my needs. I thought 10 days was a fair balance. What do I say now?
The public-ness of my cancer is getting a little exhausting. Colleagues I don't even know ask me about my surgery. I'm getting emails from parents of students I've never taught. I'm grateful. Really. I don't want to sound like a shit who's worn out by all her well-wishers. It's just contrary to my nature. I have a well-earned reputation among my friends and family as being a person who hibernates when things in my life turn ugly.
I have no doubt that I have actually lost friends because of my solitary nature. Certainly during my divorce I turned away nearly every offer of help and solace that I was offered. I was embarrassed. (And believe me, that's a story for a whole 'nother blog) And that kind of pain is pain I would much, much rather sit on and let hatch into whatever ugly thing it was going to turn into.
But I find myself having to re-wire my brain to handle this.
There's a lot of re-wiring going on.
As I worked on "coming down" from my prom meltdown, I realized that I had only just begun to think of the larger, long term consequences of even a best-case scenario. Best case scenario being that I have the mastectomy, they test my lymph nodes and discover that it hasn't spread, and by some good grace they also decide to forgo chemo and radiation. Breasts gone, but otherwise only the reconstruction process to face. (Let's all pause for a moment to give a little cheer for best case scenarios)
Best case scenario, I'll never breastfeed a child. Okay. I can handle that. Truth be told, I've always been weired out by the idea of breastfeeding. Still, though, we all know now that breastfeeding is the way to go. Any future child of mine will not have the many advantages that breastfeeding offers. I wasn't breastfed.
Best case scenario, I'll never have sex with the girls again. In fact, I'll never find sexual pleasure from my breasts again. I'm still processing this. This, to me, seems like the best case scenario's greatest tragedy. And, I have a feeling, that as I lie in my hospital bed waiting for the surgery, I expect that this will be one of the things most on my mind. Truth be told, this thought has all the makings of Meltdown #2. I'm just not there yet. It's still just a ghost in the periphery.
But let's put that thought aside for now.
So, Jason leaves town on Wednesday. That means a whole week almost of me alone with the girls and my thoughts. He pressed me to have my mother come early (and in retrospect, if I'd pushed for that, maybe I wouldn't be looking at 12 days post-surgery with Ma). He said, "You may not realize it, but I've been subtly trying to keep you busy." I had realized it. This is his busiest time of year and yet he's been pushing for outings and projects. Today we repainted the front porch; and while the porch needed repainting, it's way low on the list of things we need to do around the humble abode.
Impending hospitalization and knowledge that it could be a month before I'm able to really "work" again is a good kick in the keister insofar as getting stuff done is concerned. This weekend not only did we repaint the porch floor and the front door, we planted my vegetable garden, weeded extensively; I cleaned out my car and got him a new battery. I've been better about cleaning up after myself and doing laundry and dishes.
I worry about keeping myself occupied during my recovery. Even when I go to bed at night, I dwell on the fact that I sleep best on my stomach or my side and that will be impossible for a while. Will I be able to hold a book? All I want to do is read. The crazy geek that I am, I thought that this might be a perfect time to learn a new language, and my first thought was that I've always wanted to learn sign language, but will it hurt too much to use my hands and arms in that way? I'm a huge TV fan, but recently our sattelite has decided that it can't "see" over a tree that grew gigantic during the spring. No local networks for us now. So I figure I can rent seasons of TV shows that I've missed, but what's really worth watching? So far all I've decided upon is Battlestar Galactica.
It's nice to dwell on minutia like that every once in a while. Better than thinking about sex without my breasts or whether or not chemo will fuck with my already questionable fertility. Or facing surgery without Jason to hold my hand. Or whether or not the fact that I've had weird cramps in my gut is a sign that the cancer has spread. Or that one in ten women have to have their breast expanders removed and reconstruction postponed because of infection. Or that I will most definitely not be able to use my ticket to Bonnaroo this year. Or that in the heat of June, I'll have to wear clothing that conceals the drain bulbs from my surgery. Or that I will not be able to weed and care for the garden of tomatos and peppers and peas that I just planted. Or that I will not be well enough to be able to use the $2300 grant that I received from my school this year. Or that I may have to have chemo and will lose the hair it took me three years to grow and that I may have a funny-looking head and will not be able to pull of the Sinead O'Connor badass cool look that I like to pretend I'll be able to pull off. I don't want to wear a wig. I want to be bald and beautiful if I have to. That's a big issue for me.
Sigh. Great thought process to have before I go to bed.
Severity: Relatively minor (in the grand scheme of things, I imagine they could get much, much worse)
Circumstance: Getting ready to chaperone the school prom
Narrative: Last night was the school prom. One bitch of being scheduled for surgery in a couple of weeks, rather than next week as I had hoped, is that I don't really have any excuse to get out of some of the more tedious end-of-the-year hoopla at school. I could, I'm sure, whip out the Cancer Card, activate my doe eyes, and plead stress and chaos. But that's just not my style. (Tempting, oh yes tempting, though it is).
7:30pm rolled around to find me in my underwear, in my bedroom, surrounded by a pile of dresses like shed snakeskins. Jason passed by the door and peered in. "Whatcha doin', Boog?"
I can't remember what I said. Something snippy. I put on another dress, looked at myself in the mirror and stripped it off again. (Jason is my roommate, my best friend, but he was my boyfriend for many years; modesty is not an issue.)
"You seem upset," he said. I agreed. He asked why, and I asked him if he really wanted to know.
A little side note here: next to my mother, there is no one closer to me than Jason. In some ways, Jason knows me-- the current, 34 year old me-- better than even my mother. Next week, we will have known each other for six years now. Next month, we will have lived together for five years. He's been through my divorce (long-distance), our miscarriage, Katrina, the death of my grandmother, the uprooting from New Orleans... and now this.
But this is different. This is the first crisis we've faced together since we've been decidedly broken up (although, in spirit, we were broken up during Katrina, my grandmother's death, and our move). At my appointment with the surgeon, when the doctor asked us if we were dating, I said "he's my ex, but we're still best friends." Jason ammended it by saing, "But I'm really her Louisville family."
Anyway, I just thought I'd clear that up. I'm sure it only muddies the waters. The point is, I guess, that Jason has the dubious distinction of bearing the brunt of all of this. And sometimes I feel like I should swallow more than I do; I always strive to give him the choice of hearing the raw truth. And almost always, he wants to hear it. He's been the one all along who's been mad at me when I get mad at myself for being sad.
So, I said, "Do you really want to know the truth?" He said, "Of course."
And I started to cry. "I realize now that this will probably be the last time I dress up with my own boobs."
And Jason, bless his heart, stood in the doorway agape as I threw on the most modest dress I owned, and pushed past him toward the bathroom. I dried my wet hair in the bathroom, sobbing.
We never talked about it again. And by the time my hair (my long hair, hair I may sacrifice to chemo, hair that's longer now than it has been since I was a child) was dry, I'd gathered myself enough to put on makeup and finish my pre-prom ablutions. I do know, however, that he didn't leave my room for a good five minutes after I'd brushed by him.
The folks at Gilda's Club operate under the assumption that when someone has cancer, then everyone around them is sick too. Yes, of course.
Friday, May 16, 2008
I found out today that my surgery will be on the 29th. 13 days and counting...
Sorry, I know I told a lot of you that I would get back to you on Wednesday. I thought I'd have concrete info on Wednesday, but it took until today for them to schedule my surgery. Surgery is May 29, and we're looking at a bilateral mastectomy with simultanious reconstruction. I won't know about chemo or radiation or what stage it is or whether it has spread or... any of the really juicy stuff until after the surgery. All I know right now is that the girls have to go.
My plastic surgeon is a total dream; I couldn't have asked for a better match for my personality. Can you imagine how much it would suck to have a plastic surgeon like Dr. Spock or Doc on the Love Boat or Dr. Phil? I was seriously expecting to have to shop around for a surgeon who wasn't creepy or old or leery. Blech. But Dr. Thornton is cute (really cute) and very funny; it's almost easy to forget that he's rich and successful because women (and some men) are insecure about their bodies. (turns out insurance companies pay drs, like, practically nothing to reconstruct breasts, but a cosmetic boob job costs $8K at least... so much injustice!)
But the meeting itself, the idea of the process? Whoa. It's gross and complicated and I won't look like I want to look for more than a year. Probably more like 18 months. Wow. And it's TWO surgeries to rebuild the girls-- one to put in the expanders and one a few months later to put in the actual inplants.
I hate blood. I hate hospitals. I hate knives and needles. I am seriously, seriously squeamish. And the one and only time I've ever been under anethesia, I nearly had a heart attack anticipating it. They had to sedate me before anethestizing me. When the dude told me to "count backwards from ten," I said, "NO!" I know this sounds very weird but the thing I'm scared most of right now-- having to be under anesthesia TWICE!! Weird huh? I'm horrified by the idea.
Anyway, I'll send a better update later. It's Friday. Time to play.
Okay, Mastectomy Fun Poll of the Day: If YOU had only two weeks left with your boobs, what would you do with them? :)
(Uh, Bernard... you can improvise!)
Thanks again for all your love and support!!
More Cancer Patients Choosing Mastectomies: "In the Mayo Clinic study, about 45 percent of breast cancer patients chose mastectomies in 1997. That declined to only 30 percent in 2003, then started to rise. By 2006, 43 percent were opting for the more radical treatment. The rise coincided with wider use in the clinic of MRI, or magnetic resonance imaging. Studies show it can detect far more breast abnormalities than ordinary mammograms but it also gives a lot of false alarms."
I was advised not to bother with the MRI-- it would just turn up more "clutter."
Enough already, MSNBC! Give me more stories about Ellen DeGeneres & Portia de Rossi's upcoming nuptuals or the split between Kate and Owen and/or Tony and Jessica!
Kidding. But still...
Drug Combo May Help Breast Cancer Patients: "A combination of two new-generation cancer drugs modestly delayed the time it took for cancer to worsen in a study of 300 women with very advanced disease who had stopped responding to other treatments. It was the first test of these two highly targeted drugs, Herceptin and Tykerb. Both aim at a protein called HER-2/neu that is made in abnormally large quantities in about one-fourth of all breast cancers. Herceptin blocks the protein on the cell's surface; Tykerb does it inside the cell."
It's enough to make you wonder whether or not someone at MSNBC is living with breast cancer or with living around breast cancer.
Thursday, May 15, 2008
The doctors have been awesome. The nurses have been wonderful. But the scheduling people? Holy crap!
A woman actually said to me, "You're anxious? Really? All women with breast cancer are anxious."
Thanks lady. Seriously. I would have appreciated it more if you'd just been honest and said, "BFD. Like I give a shit."
Tuesday, May 13, 2008
Excercising as teen may stave off breast cancer: "Women who were physically active as teens and young adults were 23 percent less likely to develop premenopausal breast cancer than women who grew up sedentary, researchers report Wednesday in the Journal of the National Cancer Institute. The biggest impact was regular exercise from ages 12 to 22"
I definitely had that covered at least until 18 or so.
Breast fed women have lower risk of breast cancer. : "New research has found that women who were breast-fed as infants may be at lower risk of breast cancer than those who were not breast fed. However, there appears to be no difference in breast cancer risk in first-born children, regardless of whether or not they were breast-fed. "
Well, I am a first, and only, child, but I was not breast fed. So...
Let me tell you this, if you have to face a crisis while being a teacher, you can't go wrong facing it with the class of 2009. These kids have been so good, better even then some of the faculty. Pictures of grace and support. It was so tough to tell them, but it's really nice to be able to stand in front of them knowing that there aren't any secrets and that they have my back in some way. I've gotten some wonderful emails from kids. Two girls are trying to get together a "bring Ms. C something every week this summer" chain. They've promised to email. Some have promised to pray for me. There's this weird unmeasurable level of nobility in a seventeen year old boy (for example) who comes to you after class to say, "You're a very strong woman. I'll be thinking of you and I know you'll be okay."
Just this week, the LEO published an article about these kids and their trip to New Orleans to help out with Habitat. And I was quoted, talking about my former New Orleans students, as saying that teenagers are much more brave and resilient than adults. And I mean it.
People have been crawling out of the woodwork with messages of support and promises of help. I've often felt very alone, especially after I moved here away from a tremendous support system in New Orleans. Middle school teachers I've barely ever talked to have made the trip to my classroom just to make sure that I "have a plan." A fellow teacher asked her church of 350 people to pray for me daily. A writer I've only met once or twice emailed me with a detailed account of her bilateral mastectomy and what I can expect from various treatments.
It's weird to be given so much attention.
To some extent, I've invited it without really meaning to. It was me who decided that I needed to be 100% honest with the kids. I was told that I could just say that I am "having surgery." But I opted for honesty for a number of reasons, not the least of which because I will return (God willing) in the fall altered in a fairly significant way. And the potential for chemo is there, so I may be losing my hair. It seemed a disservice to the kids to keep this to myself; I didn't want them to feel like I couldn't trust them with something this big. One of my kids emailed me and said that my honesty made them feel very "special." And that's a nice by-product.
I wanted too to avoid speculation. If I come back boob-less and bald, people will know and wonder why I didn't say anything. Even if I get to keep my locks, boob-less would be pretty obvious in my case. Kids can be weird about stuff like that.
Tonight Jas and I are going to a Louisville Bats game. We'd already planned to go today before we found out that May 13 is Livestrong Day at the park. You gotta love that. After we found out, Jas asked if I'd rather go on Thursday, but seriously if you're going to have cancer, you might as well join the club right away. And it's not like it's going to be a "reminder"-- I'm in this all the way every moment of every day.
Speaking of which, last night I was able to get some Xanax from my doctor and enjoyed the first good sleep in a long time. Yesterday I was wiped out both from lack of sleep and the emotional drain of telling the kids, and I don't know what I would have done if I had had to suffer another sleepless night.
That's the worst-- the sleeplessness. Lying awake, listening to your body. Every bit of indigestion and every weird twinge is suddenly a sign that the cancer has spread, that you're dying and there's nothing anyone will be able to do for you.
I talked to my grandmother last night. She was brief and measured and it was by far the hardest conversation I've had even though it lasted just 10 minutes or so. "You'll be fine," she kept saying, "because you HAVE to be fine, right?" Right, I said. Yes, of course. I have to be fine.
Today, I got a phone message from one of my uncles, one of my dad's four brothers. That message seriously f-ed me up. I think he may have called me once before, maybe twice, in my lifetime. I seem to remember a message left during either my divorce or my miscarriage. But this one was shattering-- the choke in his voice, the repetition of how much he's thinking of me. Out of all of my family, he's the one who has most overtly carried my dad's death with him; he's always been someone I thought might have been a totally different person had my dad not died. (Although we all would have been totally different people had my dad not died-- most decidedly me.) Something else to carry with me. The knowledge that this is an echo of my dad that reverberates for a lot of people.
I told my boss today that it's almost easier that this is hard on the people around me. Being strong for them gives me something to do.
Tomorrow is the big day with the plastic surgeon and the day I schedule my surgery. Even though my appointment is in the morning, I'm taking the day off.
Sunday, May 11, 2008
On October 1, 1976, my father died of cancer. I was three.
He was first diagnosed with Hodgkin's Disease when he was a senior in high school, 17 years old. He fought it, skipped the first year of college, and went into remission. He met my mom in college and married her in 1972. I was born on his 25th birthday. By that time, he was out of remission. There had been talk that he might not live to see me born. He did, of course. Ma or my grandmother-- someone-- always tells me that my mom went into labor on August 30 and he begged her to hold on until the 31st so I would be the best birthday present ever.
Ma hung on. And he hung on for three years. We celebrated our last shared birthday together in his hospital room. Our shared birthday cake had hockey and golf figures on his side and a dollhouse desk and chair on my side-- I was to enter day care soon, and I was smart.
I'm sure I'll be thinking a lot about him as I go through this, but the thoughts that finally came into focus a few minutes ago are these:
1) He was 17 when he was first diagnosed. When he came out of remission, he was married and his wife was pregnant. I've always admired his bravery. I owe it to him to be as brave.
2) My mother lost her husband to cancer. She never remarried. And now her only child has cancer. I can't imagine how that must feel. From this point forth, I need to carry that with me and understand what a horror this must be.
3) As of this morning, my mother had not yet told my grandmother-- my father's mother and my only living grandparent. When I asked her about it today, it didn't strike me how hard this would be for my grandmother to hear. I need to carry that with me too.
Last night, in an attempt to finally get a good night's sleep, I took an OTC sleeping pill and crashed until after noon. We had "stuff" to do today, but it didn't get done. Before we knew it, it was pushing five, and we were supposed to be in Indiana for "our" niece's 2nd birthday. She's Jason's niece, really. I first met the family six years ago at her brother's first birthday. And although Jas and I haven't been a couple for a very long time, I'm still sort of family. The kids call me Aunt MeMe.
Anyway, I guess it's just as hard NOT to talk about what's going on with me as it is to talk about what's going on with me. No one mentioned anything about my situation while I was there. I don't blame them. I probably would have done the same thing. But it still felt weird. Jas's brother in law asked me when my school year was ending, if I was happy to have it over, if I was looking forward to the summer?... and I just didn't know what to say. I just shrugged, said, "Sort of," and left the kitchen.
Talked to Ma for a little while this afternoon. This morning she spent about an hour on the phone talking to a co-worker who'd also had a double mastectomy around 4 years ago. Turns out she tested positive for the genetic predisposition. This woman also opted for simultanious reconstruction, but her plastic surgeon took fat from her stomach to rebuild the Girls.
I wonder why I was not offered this possibility. I do know that her friend was and is overweight. Perhaps I don't have enough extra fat? It's definitely something I'll ask the plastic surgeon. I read up on it a bit, and it makes for a longer surgery, a longer recovery, but also offers fewer future risks associated with inplants. Perhaps my surgeon assumed I would want to go back to having E-cups. That's not my plan, and I'm pretty sure I don't have enough fat on my body to rebuild E-cups. But A's or B's? Maybe.
Otherwise, it was pretty much your run of the mill day here. Sent a few email thank yous to people who have offered support. Had a fantastic time playing with the kids (mostly my niece, as my nephew was rapt by a NASCAR race).
I guess the only other big thing is that my mom is now totally on board with the bilateral mastectomy. I thought if anyone would talk me out of it, it would be her. And yes, I suppose I have been hoping someone WOULD talk me out of it. I told her about my thoughts about the nipple tattoo, told her that I was thinking that the best tattoo would be those silhouettes of naked chicks you see on truck mudflaps. She said, "It's nice you have a sense of humor about it." But her tone said, "don't you dare!"
Crying jag? Check. On the way home from Indiana. And I racked up another last night before I went to bed. So, we're averaging one a day. Maybe tomorrow's goal should be to skip the crying jag entirely.