Thursday, July 24, 2008

Chemo 1 recap

I was too bloody miserable post chemo #1 to really keep a good eye cast on my symptoms, even though it had been my intention to log each one. But as I mentioned before, post-chemo #1 was complicated by disastrous side-effects from my painkillers. It's very, very hard to say where chemo kickback ended and painkiller evilness began.

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.

Good news everyone!

This is me not looking as happy as I should after finding out that my treatments have been REDUCED from 8 to 6. That means, as of today, I am 1/3 of the way through. (I'm actually about 3/4 to being 1/3 of the way through). Very exciting.

Friday, July 18, 2008

Booby Prize: Whoa!


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.


In the News (Local): First Lady launches Breast Cancer Initiative

Good job!

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

Cold Turkey

I realize now that I’ve neglected to address one of the more difficult aspects of my “cancer journey” (as Gilda’s Club calls it) in this blog. And that’s because, for some reason, it carries a huge helping of shame along with it.

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.

Lifestyle overhaul.

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

In The News: WTF?

Ladies, give your breasts a rest, research says
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

Hanging Bald

Jason says that maybe bald is the new me. After going wig shopping today, I'm pretty convinced that bald is the new me at least for the next eight months or so.

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

Chemo Session #1, Day of Chemo

Well, I'm halfway into Day 2 of Chemo 1, but I'm reluctant to report as my condition seems to change from hour to hour. But here's what I can tell you about yesterday.

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.