Chemo 3/Chemo 4-- it's all running together a bit

So just a couple of days after my Chemo 3 update (Aug 20), shit hit the fan. Not BIG shit. This is not a boo-hoo from me. But I think I have discovered one hard and fast rule about chemo: never get smug about feeling better than you think you should.

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.

My Own Private Terrorist Attack

A number of people have asked me if I feel like having breast cancer has given me a “second chance” at life. And certainly the “second chance” theme infiltrates so much of the literature about surviving cancer. It may just be a matter of semantics, but the very phrase “second chance” makes me quail. This may be, at least in part, because I’ve done a lousy job with all the second chances I’ve had in my life.

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.

Chemo Session Three Update

I've stopped trying to figure out the rhyme and reason of chemo. So much seems so arbitrary to me.

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.

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.

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.)

One Month, Two Days. Stage One.

And voila! Now you see them, now you don't.

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.