Official diagnosis

Posted: February 1, 2011 | Author: | Filed under: breast cancer | Tags: , , , , , , , , | 4 Comments

While looking through my paperwork from Dr Spiegel and mapping out the next month of pre-op stuff I have to do, I found something that made me laugh out loud.

I hope you find it funny, too.

If you don’t, there’s something really wrong with you.

This is the orders for the EKG and labwork I have to get done before my reconstruction. 

The handwriting is kinda hard to read, and the picture is pretty fuzzy, but if you look closely you’ll see that for Diagnosis, it says “absence of breasts.”

Other than laughing hysterically, I don’t know how to respond to that.

Mommy calling cards

Posted: January 29, 2011 | Author: | Filed under: breast cancer, kids | Tags: , , , , , , , , , | 12 Comments

I’ll admit it right here, live on the web, in front of however many people are reading my blog today: I’m not 100%  into the whole suburban mommy thing. Thankfully, my kids are old enough now to (A) be in school all day Monday through Friday, (B) no longer need constant supervision, and (C) no longer follow me into the bathroom. Don’t get me wrong, I love and adore my kids, and I think parenthood is a noble and under-appreciated profession, but child-rearing isn’t my whole life, and I like to have some time away from my kids every day.

My favorite thing in the world is to be home alone. I know, I really should set my sights higher.

I crave peace & quiet. I get overstimulated like a small child when there’s too much noise, too many voices, or too many electronic devices running at the same time. I have been known to go to my room for a self-imposed time-out during times of chaos. Which is pretty much every day at my house. I’d like to blame it on the stress in my life from the whole cancer thing, but the truth is, I’d be that way if the words “malignant tumor” weren’t part of my life.

Like many suburbs of big cities, ours is a bubble. Everyone around here is affluent, successful, talented, well-educated and better-than-average looking with kids who are nothing if not gifted and talented. A gas-guzzling SUV is de riguer. A minivan works, too, but sedans, not so much. Nobody cleans their own house (except for me, because I’ve never been comfortable having “the maid” in my house when she and I both know perfectly well that there’s no reason I can’t mop my own floor), and everyone is overscheduled and overworked with overprocessed hair (myself included; I seriously have no idea what my real haircolor is but I know that it gets darker all the time).

Since I’ve never seen an episode of Desperate Housewives, I can’t say that my little bubble is similar to or different from from Wysteria Lane, but some of the stuff I see around here makes me think, you couldn’t write a more outlandish script if you tried.

Like the mother of the first-grader who’s in the principal’s office multiple times a week (the kid, not the mother) for bad behavior who asked the teacher to please call her (the mother) next time the kid was about to be sent to the principal, so she (the mother) could come pick the kid up from school. Apparently the mother “feels bad” for her child because his life is so rough, and it’s not his fault he has such bad behavior, he just doesn’t like to go to bed at night so he stays up until he passes out in front of the TV at 1 a.m. Every night.

True story.

Or the principal who nixed plans to have a fundraiser to benefit the family of a child with cancer–a child who had been attending that school until too sick to come anymore–because it might hurt the feelings of kids who don’t have cancer.

Another true story.

Now, don’t assume that all this goes on at my kids’ schools, because I know people in other neighborhoods whose kids attend other schools. And I wouldn’t rat out my own kids’ schools (unless it was a really, really good story). Suffice to say that these are examples meant to convey a sense of an overall picture.

I did camp out — literally, as in spend the night in the parking lot — to ensure that my kids got a spot in preschool, but not because it was the preschool to attend, but because it was the only one with an opening, and I really, really wanted to hand my toddler off to someone qualified for a few hours a week. And yes, I did willingly buy a plane ticket and fly in from North Carolina to camp out at that very preschool (and waited in the cold rain) before we moved back, to make sure Macy had a spot at the same preschool Payton had attended before we moved away.

But I was never really one of those mothers. I looked like the other suburban mommies, I did indeed quit my job and surrender my paycheck to raise my kids, I do drive a gas-guzzling SUV, and I pay a ridiculous amount of money for organic milk to avoid those pesky hormones & antibiotics that my generation consumed.

My kids just aren’t my whole world. They are a big part of it, and if there was a pie chart depicting the parts of my life, the part labeled “kids” would be the biggest. By far. But there would also be a part of the pie for tennis, book club, cooking club, and friends; in other words, I have other interests outside of my progeny.

So imagine how hard I laughed when one of the pop-up ads on my web browser was hawking “Mommy calling cards.”

Have you seen these?

If you have a set, you  might want to stop reading now, because I’m fixin’ to rip on them pretty hard.

It’s not bad enough that this poor woman, and apparently lots of other women, identifies herself as Lillian’s mom and Matthew’s wife, but the card itself screams MOMMOMMOMMOMMOMMOMMOM all down the side. That MOMMOMMOMMOM screaming is the reason I need to hand my kids over to someone else and take time-outs, and now the mommy calling card is not only endorsing but promoting it?

How about this one? Really cute design, I will admit; I really like the smiling fish and the cool blue color, but my first thought was, since when did we get to the point of having to hand someone a card and beg them to be our friend?

Am I making too much of this? Because it seems pretty ridiculous to me.

A quick Internet search turns up all kinds of options for mommy calling cards. Tons of cute designs and fun colors. And I am a sucker for good stationery. I adore heavy cardstock, genuinely appreciate embossed invitations, and have no problem spending good money on paper goods.

But these seem crazy to me.  Really crazy. 

This one not only identifies the breeder as Elizabeth & Gabriella’s mom but also has a convenient place to mark the dance card, as it were, and force the recipient to commit to a playdate right here! right now!

You can even have photo cards, to be sure the person you hand it to knows exactly what your kid looks like. Or in case you’re worried that your Olivia or Mackenna will be confused with the other one in her playgroup.

While I do admit that Lindsey Walters is a cute little girl who likely comes from a very nice family, I can’t for the life of me imagine myself seriously handing someone a card hawking my kid.

If Payton were to make make it to the Major League and had a baseball card, I would for sure hand those out to any and all interested parties, but that’s a long time in the future and a big uncertainty. Which is another thing that disqualifies me for Suburban Mommy of the Year; my pesky realistic impression of my kids’ abilities. Some of the baseball parents we’ve met at the fields seem a lot more confident than me that their kid will be the one that hits the big time. Even though the odds are a little sobering: as in about 1 in 200 players. So 0.45 percent of all boys playing high school ball. Not very many. Payton’s Little League has something like 800 kids total, from t-ball to majors. So 4 boys in the entire FCLL, but half the parents up there think there kid is the best thing since Ted Williams. Payton genuinely believes he’ll make it, despite the odds (and more importantly, despite his tendency to depend on his innate ability rather than work hard at honing his craft). And I encourage him wholeheartedly to go for it, pursue that dream and aim high. There’s nothing that would please me more than if it happened for him. But I also tell him to study hard and have a back-up plan, just in case it doesn’t work out.

Because some kind of cosmic force is indeed in effect right now, shortly after the Mommy calling card pop-up ad appeared, I came across a website that offers snarky versions, for the not-so-perfect moms. 

Like me.

Ok, I admit, this one is a little harsh, even for me.

Hush now, I know some of y’all think I’m the queen of harsh, that I invented snarkiness and that I live to mouth off.

That’s not entirely true.

This one is a little kinder. A little gentler. Yet gets the idea across.

I admit, I like the bumper stickers that say “My kid could beat up your honor roll student” or however they word it. I wouldn’t put one on my own vehicle, but I snicker every time I see one. Bad mommy.

Here’s the modern suburban mom’s version of Sophie’s Choice, conveniently laid out on a snarky card. Hee hee.

And I make no promises about little risk of mycobacterium.

One more thing to worry us

Posted: January 28, 2011 | Author: | Filed under: breast cancer | Tags: , , , , , , , , , , , , , , | 2 Comments

Because breast cancer survivors don’t have enough to worry about, now there’s this: the FDA reported that women with breast implants have a small but slightly increased risk of developing anaplastic large cell lymphoma (ALCL), a rare disease typically affecting 3 out of 100 million women.

While ALCL is rare, it seems that women with implants may have a “very small but increased risk of developing the disease in the scar capsule adjacent to the implant.” ALCL is a cancer involving cells of the immune system, which scars the fool out of me.  Scarier still is that this immune system cancer can appear anywhere in the body. ALCL is not breast cancer, but it can show up there, or anywhere else. Thankfully it is very rare: 1 in 500,000 women a year in the United States, and it’s even more rare to develop ALCL in the breast (3 in 100 million). Whew!

And while all women with implants could be at risk, whether their implants are for reconstruction or recreation, for the purpose of this post, I’m going to focus on breast cancer survivors who have implants.

WTH???

Really?? After surviving breast cancer, enduring reconstruction and getting on with life, we also have to worry about this? You’d like to think (at least I would) that as a cancer survivor, you’ve suffered enough (I know I have). But apparently there’s no end to the the amount of suffering spewed by the dreaded cancer.

I’m so sick of cancer.

One of my bookclub buddies, herself an 11-year breast cancer survivor, just had to make a quick run to Alabama to visit her “surrogate mom” at the lake who appears to be losing her cancer battle.

My beloved aunt is recovering from surgery last week to remove part of a stage IV glioblastoma. I don’t even need to tell y’all how bad a stage IV glio is. Get well soon, Thea Sophia.

I saw a story on the Today Show about a 3-year-old girl who had a mastectomy (yes, you read that right, she was t-h-r-e-e years old) for a rare but early-striking form of breast cancer.

My tennis teammate and dear friend who endured diagnosis and a double mastectomy and has completed 5 of her 6 chemo treatments is battling hard, and she is an admirable warrior. This stupid disease has changed her body and robbed her of tennis for all these months. It’s forced her to live way outside of her comfort zone and to learn lessons she’d rather remain ignorant of, all the while still driving carpool, making dinner, overseeing homework, and keeping the household running. The battle has taken a lot out of her, but she still has a lot of fight left in her. And she looks amazingly beautiful in her sassy headscarf. Chemo may have taken her hair and has tried to commandeer her brain, but it can’t take away her smile and her fortitude.

I miss my mom every single day, and every single day I curse the wretched disease that took her life, too young and too soon. I could write all day and all night and not run out of things I miss about her. Stupid cancer.

Then there’s my own cancer battle.

I’m not a candidate for implants myself, since the post-mastectomy infection that snaked through my chest wall took its pound of flesh from the right side. I thought I was getting the short end of the stick by having to endure a much more complicated surgery and recovery than that required for implants. Perhaps I was wrong. Although who knows what the FDA will find as risky for breast cancer survivors who opt for different reconstruction methods. We can’t win for trying.

The good news is that I do indeed have a surgery date (gulp). My impatience, which I blogged about on Monday, paid off, so all those naysayers out there who were going to tell me that good things come to those who wait can shut it. Thank you.

Sonia, Dr Spiegel’s nurse, called me Tuesday morning to tell me that Dr Spiegel and Dr S had a meeting of the minds and found a date that works for both of them. Gulp.

It’s March 2nd.

Texas Independence Day. My cousin Ross’s birthday (hey, cuz). Also celebrating birthdays on that day: Dr Seuss, Sam Houston, and Reggie Bush. Oh, and my new boobs.

No less than what she deserves

Posted: January 27, 2011 | Author: | Filed under: breast cancer, kids | Tags: , , , , , , , , | 4 Comments

While packing Macy’s lunch this morning, I was picking the seeds out of each cube of watermelon (because that’s what gives meaning and adds fulfillment to my life as a suburban at-home mom).

I told her that it’s ok to eat watermelon seeds; that you won’t grow a watermelon in your belly. She used to believe that, when she was really little. Sometimes I miss those days.

Besides, the seeds of a seedless watermelon are so tiny they’re barely noticable. Not like the hefty black watermelon seeds of my childhood. I’d like to see kids these days try to have a seed-spitting contest with the new generation of seeds.

But back to the conversation with Macy.

She didn’t pause for even one second to ponder the incredible gift of fortune that is hers, simply by being born into a family whose matriarch set such a high standard of child-rearing and lunch-packing that her descendant (that’s me) is seriously picking seeds out of watermelon cubes at 6:45 a.m. on a Thursday. Nor did she remark upon the bounty of produce that is available in Texas in January. She knows not of seasonal fruits & veg.

She did not bow her head momentarily in thanks for the numerous gifts that are hers, just by chance and birthright.

She wanted to know one thing: if you did grow a watermelon in your belly, would you poop it out or barf it out?

Because I’m so busy picking seeds out of watermelon cubes and endlessly matching orphaned socks warm & fluffy from the dryer, I didn’t have time to go to med school or get an advanced degree in child psychology or pursue a curriculum of horticulture. So I don’t know the answer to her question. I’d guess both.

In an effort to instill my daily dose of guilt into my kids’ life, I told her it must be really great to have someone make your lunch every day. Breakfast, too, for that matter. I could get used to that. (Except, let’s be honest: I’m pretty picky and would likely end up re-doing it anyway, while trying to avoid making eye contact with the gift horse.)

I asked her this: when I’m old and gray and have no teeth, will you pick the seeds out of my watermelon for me?

She said: If you don’t have any teeth, how are you going to chew? Will I have to do that for you, too? Why not just get dentures?

Why not indeed. 

Blogging is like…

Posted: January 26, 2011 | Author: | Filed under: breast cancer | Tags: , , , , , , , , , , , , , , , , , | 1 Comment

Blogging is like having children…you don’t have to be very smart to do it.

I’m making this wildly judgmental statement based on the itty bitty amount of research I’ve done since becoming a blogger.

That tag, “blogger,” still sits a little uneasily with me. I don’t feel like a blogger, and most days I’m pretty sure that what I have to say isn’t particularly important or interesting to very many people. But once I was diagnosed with breast cancer at the tender age of 40, I realized that there were some people who wanted to keep up with the latest on my situation, and that it is completely impossible to convey such news without blanketing and broadcasting. Thus, a blog was born.

It started out as rudimentary thing on Caring Bridge and grew into this.  While this is certainly a step up from Caring Bridge, I still don’t consider myself a blogger. Not that I have blogger’s block (as evidenced by my rambling posts), nor do I suffer insecurity. I simply consider myself a small fish in a big pond. I recently had a little look-see on the blogging scene. Took a peek into what’s out there, and wow, there’s some bad writing, boring topics, and strange people. I’m still a small fish in a big pond, but hopefully this fish writes well about cool stuff and isn’t too strange.

The amount of stuff I don’t know about blogging is vast. It’s humbling and overwhelming but also ripe with potential. Sorta like life. And really a lot like tennis.

“Really a lot” is one of my favorite phrases. Makes me want to watch Broadcast News again (the movie, not Katie Couric).

That’s the kind of thing you can do with a blog — blab on & on about your personal favorites, or complain about things you hate the most.

Top of my list today of things I hate: science fair projects and inappropriate advertising.

Not together, necessarily. Although maybe some kid could do a science fair project on how inappropriate advertising affects people. That kid could start by watching Sports Center, as my kid does every day of his life, and see what kind of filth and scum pops up in 30-second bites around the real stories.

Just this morning, right after a nice human-interest story on James Harrison, the Pittsburgh Steeler who has been called “the most violent man in the most violent of games,” was an ad for the new Matthew Perry sitcom. The ad featured a woman complaining to Matthew Perry about losing her underwear in his apartment, or some such nonsense. It may be a great show, and maybe this is a riveting storyline, but does it really have to be on Sports Center at 8 a.m.? Can’t they just run another Viagra commercial instead?

Another inappropriate advertising incident (or IAI, for short) that comes to mind: while watching America’s Funniest Videos on ABC Family network, my kids’ retinas were burned by the commercial for the new Ashton Kucher-Natalie Portman movie about hooking up. I’m not going to pander to this media monster by adding a link; if you want more info about this utter waste of acting talent, you are on your own.

Looks like a triple scoop of wildly judgmental rants today.

Need I reiterate that this supposedly family-oriented program on a supposedly family-oriented network was rudely interrupted by a grossly inappropriate ad?

Probably not.

And yes, I did contact “ABC Family” to complain. I’m sure they are busy writing me an apology letter contained in a Hallmark card with a gift card to my favorite restaurant accompanied by a bouquet of flowers with a mylar balloon that says, “I’m sorry.”

Moving right along.

Science fair projects make the list because the 6th grade boy who lives in my house came home from school yesterday with some rude news: the science fair project he thought was optional is indeed very much required.

Cue the frantic scrambling and keep your ears peeled for the screeching to a halt of any carefully-laid plans for the evening. The timing of such everyday calamities never ceases to amaze me. Macy and I were just getting ready to clean out her leopard gecko Cinko’s tank, a project I had been putting off far too long. Just as we were gathering up cleaning supplies and girding ourselves for this task, the calamity du jour erupted on the scene.

It took 3 adults, a trip to Hobby Lobby, a pack of D batteries, and lots of beer to deal with the science fair project snafu, and that shamefaced boy was up way past his bedtime, but we got ‘er done. I can say with absolute certainty that his project would make a Tiger Mother shake her head scornfully at the lazy and slovenly habits of my kid, but that’s ok. Those Tiger Mothers freak me out a bit anyway. But if you feel the need, you can read all about it here: http://www.amazon.com/Battle-Hymn-Tiger-Mother-Chua/dp/1594202842/ref=sr_1_1?ie=UTF8&qid=1296051025&sr=8-1.

On second thought, that looks kinda messy, so try this instead.

I told you I’ve been studying up on blogs.

It does help to have an in-house IT guru (thanks, Trev).

I have a lot more to say about Tiger Mothers but will save that for another day. Because today’s topic is…

Um, I’m not really sure.

It started out as one thing but morphed into something else. That happens here a lot.

Oh yes, now I remember: things I hate.

Or was it things I’m wildly judgmental about things about which I’m wildly judgmental? (hey, this blog has some pretty nifty features.)

Or was it how stupid science fair projects are and how they should be banned outright from all the public and private school systems in the world?

I have no idea.

Patience, or lack thereof

Posted: January 25, 2011 | Author: | Filed under: breast cancer, drugs, infection | Tags: , , , , , , , , , , , , , , , | 7 Comments

Tammy, my lymphedema specialist who I love and adore and
look forward to visiting, asked me a simple question yesterday:
When’s your reconstruction? I told her that the two surgeons’
offices (Dr S and Dr Spiegel) are supposed to be coordinating their
schedules and issuing a surgery date this week. I told her this
Monday afternoon, which for all intents & purposes, is this
week. In fact, this conversation took place in the afternoon of
this week, therefore in the far reaches of said time period. I
thought it was perfectly reasonable to expect to hear back from
those docs with my surgery date. After all, they’ve had since
Thursday to work on it. That’s plenty of time. Giddyup. She laughed
at me for being impatient. Good thing I love
and adore her, or else that might have made me mad. She’s gotten to
know me well in the last several months, and we’ve become friends.
She has educated me on the human lymph system and has schooled me
on how to (hopefully) continue unleashing a wicked forehand
(repeatedly, with great force, and multiple times a week) without
ending up looking like the “after” picture in the lymphedema
textbook. She knows I’ve been to a second surgeon and have decided
to venture forth toward yet another surgery, and I thought she knew
that I’m a very impatient patient. I don’t even know why the word
patient, meaning a person who requires medical
care, has be a homophone to the word meaning “the bearing of pain
or difficulty with calmness.” And I might even quibble with that: I
can bear pain & difficulty with calm, I just want to get
through it fast. Anyone who’s been a patient knows it’s hard to be
patient. If you haven’t learned this first-hand, trust me. I know
of which I speak. Lots has been written about patience. Everyone
from Shakespeare to Guns ‘N Roses has addresses this fragile human
condition. My favorite allusion by the Bard to the patience
principle is in Othello: “How poor are they that have not patience!
What wound did ever heal but by degrees?” I feel like Shakespeare
has been peeping in my windows again. I could show him color photos
of a wound healing by degree (but won’t gross y’all out by posting
them here). I have a bar graph, too, showing the wound dimensions
and how they changed, by degree. I’m serious about the photos and
graph. Alexandre Dumas, perhaps the most famous French writer of
the 19th century, knew enough about patience to utter this: “All
human wisdom is summed up in two words — wait and hope.” I’m good
with the latter, not so much with the former. And if it takes
patience to gain wisdom, forget it; I’m out. Not that I’m
particularly impulsive, but once I make a decision and set my
course of action, I’m ready to get to it. Now, not later. Leo
Tolstoy wrote that “the two most powerful warriors are patience and
time.” Egads, I’m double-hosed. We’ve all heard time & time
again that patience is a virtue. I don’t quibble with this ancient
wisdom, I just don’t happen to possess that virtue. I’m sure Dr S
is still laughing at me begging him to let me go home from the
hospital the day after my mastectomy. I was ready to get outta
there and get on with my life. Not so fast, lady. Ben Franklin
wrote that “He that can have patience can have what he wants.” I
always though he was kind of a smart-ass. And why can’t I have what
I want without being patient? Where’s the Burger King motto in all
this? I want to have it my way, and my way is now. Right now. St.
Augustine was probably very patient. He too linked patience to
wisdom: “Patience is the companion of wisdom.” Whatever. I
understand all these ancient guys speaking about patience: the
world moved at a much slower pace back then. They’d probably flip
their wigs if they knew of the modern world and all its speediness.
Imagine those guys seeing a bullet train, or the Autobahn, or even
Loop 610 in Houston, and not even at rush hour. What about a
conveyor belt flanked by factory workers, producing goods from
digital watches to cars in a hurry? Or drive-through food or pizza
delivery? I don’t think any of the pizza chains offers “30 minutes
or it’s free” anymore, but still, when I order a pizza online, Papa
John has it ready in 2 shakes of a lamb’s tail. (such a cute little
expression, right?) The point is that these esteemed writers,
thinkers, and movers & shakers can blab all they want about
being patient, and I will listen (impatiently) and consider what
they say (as I rush off to do the next thing on my list). But I
still want it my way, which is now. 

Is there a Hallmark card for that?

Posted: January 24, 2011 | Author: | Filed under: breast cancer | Tags: , , , , , , , , , | 9 Comments

I ran into my OB-GYN yesterday. That’s always kind of weird. Remember when you were a kid, and you would see one of your teachers outside of school? Not in a Mary Kay Letourneau kind of way–that’s creepy–but maybe bump into them at a restaurant or the grocery store. It always struck me as strange to see them out & about in the real world, because they were so confined in my mind to the classroom.

It’s sort of the same thing running into one’s doctor out & about in the real world.

So there we were, playing tennis on a Sunday morning, and through the fence of the court I saw my OB-GYN walking toward the gym. I’ve seen her at the club before, sweating away on the step mill or the recumbent bike. We’ve exchanged pleasantries and then I’ve gone my way and left her to her workout.

But I haven’t seen her since she found the lump in my right breast in March that turned out to be malignant and led to me having a mastectomy and getting an infection and going through some crazy stuff on this “cancer journey” and changing my status from regular person to survivor. It was kind of important to me to say something to her.

But what to say?

What’s the right thing to say to the person who essentially introduces you to your cancer? Is there a Hallmark card for that? I’m guessing not.

After she wrote my orders for the mammogram in March, the scenario could have had 2 different outcomes: either the mammo comes back clear and she sees me at next year’s well-woman exam; or the mammo comes back scary and she refers me to a specialist.

I’ve had a mammo every year for the last 5 years, a bit ahead of the recommended guidelines. Not because I like tests or crave extra attention, but because my mom died of a reproductive cancer, so my OB-GYN, who is married to an MD Anderson oncologist, has always been  especially pro-active with me. To me, that’s a sign of a competent person: I didn’t have to say, hey since my mom died of uterine cancer, what extra steps do I need to take to ensure my health? I never had to ask because she was on top of it. 

Thank goodness she was.

When my mammo came back scary, she called and told me and referred me to Dr Dempsey for a biopsy. I love her for that, because Dr Dempsey was the exact-right, totally perfect surgeon for me.

From there, Dr Dempsey referred me to Dr S for plastics and Dr Darcourt for oncology, and my OB-GYN was out of the loop. She called me a couple of times after she got the pathology report from the biopsy to check on me and see if there was anything I needed, but I was knee-deep in researching this beast, having tests run, scheduling all my appointments and keeping my regular life going that I never called her back. Then the infection took hold, post-surgery, and my life was topsy-turvy, to say the least.

I did sit down after all the brouhaha to write her a note to say thank you for finding the lump and saving my life.  That’s just the way my mama raised me, to write a thank you note to someone who had extended you a kindness or given you a gift. I especially like the gift part, but the kindness part is good too. 

This one was a strange note to write, though, and I found myself at a loss for words. That doesn’t happen to me very often.  I don’t remember what I wrote but probably scratched out something along the lines of “thank you for finding the lump that saved my life.” Whatever the words were, they were a feeble attempt to convey a mountain of gratitude and I sure wish I had had just the right words to let her know that she really and truly has made a difference in my life. 

So when I saw her from the tennis court yesterday, I didn’t even think about it, I just hollered her name and ran toward her. We were right in the middle of  a game and not at a good stopping point, but this was important, so I didn’t care, and neither did my tennis friends.

She asked how I was and I told her the truth: I’m good.

I’m good.

There wasn’t much to say after that; we had covered the important stuff.

She said she was really glad to see me, and to see me playing tennis especially. I said, me too. I thought I would want to say so much more, but we really had covered the important stuff.

PTSD

Posted: January 21, 2011 | Author: | Filed under: breast cancer, cancer fatigue, drugs, infection | Tags: , , , , , , , , , , | 14 Comments

While brushing my teeth and inspecting the bevy of brown spots on my face (thanks, crazy hormones), I noticed something that made my heart pound, my stomach drop, and my blood run cold. 

Not to be overly dramatic here, but I was scared. Only for a second, but really and truly scared.

I saw a small dark spot on my jammies top, right near my personal “ground zero” or also known as my right chest wall, site and host of the Mycobacterium Olympics 2010.

My first, terrifying thought was that fluid had leaked from my skin at the site and soaked a spot on my shirt.

Not a good thought.

Turns out it was a small piece of fuzz from a red blanket, but it was in just the right location and was just enough darker than the pink jammie top to look like a wet spot.

It’s been 5 months since my last hospitalization for this wretched infection, yet it still has the power to scare the tar out of me and render me speechless, breathless & frantic for a moment at any given time. There has been (knock wood) absolutely no sign of said infection for those 5 glorious months, but it still freaks me out.

I’ve joked before about having PTSD — post-traumatic stress disorder. Now I’m thinking it’s no joke. Then I see this article, from the Telegraph online. Kismet? You betcha.

The article starts with a catchy lead (y’all know I’m a sucker for a good lead): “The debilitating disorder is often characterised by agitation, anxiety, depression, nightmares, flashbacks, and mood swings. It is more often associated with soldiers returning from battlefields who have been shell-shocked by their experiences.” 

Ok, I admit when I read it, I thought “flashbacks” meant “hot flashes” for some reason. Perhaps because I was suffering from one (hot flash, not flashback) at the moment I read that sentence, and my brain went a little wonky from it.

But here’s the important part: a new study (I also love new studies) has found that women diagnosed with breast cancer have an effect similar to PTSD. Researchers site the effect of diagnosis combined with all the unknowns (surgery? chemo? recurrence? etc) equaling a good chance of developing PTSD. They studied 331 women in a Greek hospital and found that 45 percent showed signs of PTSD. What they did not disclose, however, is how they came up with 331 as their sample size. Inquiring minds would like to know. That seems like an odd number to me, no pun intended. The findings were presented at the Impakt Breast Cancer Conference in Brussels. Now not only do I wonder about the 331 women, but also who in their right mind would spell the name of their conference incorrectly? Impakt? Really? Or is that how “Impact” is spelled in Brussels? Why doesn’t the article tell me these things???

Last year there was a similar study done on the possibility of PTSD in heart attack victims. Seems 1 in 6 heart attackers (16 percent of those studied) suffered from PTSD, while some 18 percent of them exhibited symptoms.

Those kinds of statistics confuse me. Does it mean that 16 percent of the total group studied had full-blown PTSD, while another 18 percent of the same group just had some symptoms? Regardless of the answer to that question, it’s interesting (to me, anyway) that the percentage of breast cancer patients suffering PTSD was so much higher than the percentage of heart attackers who suffered.

Anyhoo…

I’m not a researcher and am not involved in any groundbreaking studies, but I’d guess it’s not just breast cancer that renders its victims full of PTSD. What’s really scary is that women still show signs of  PTSD even if their “cancer journey” is complete, with successful treatment and remission of the dreaded disease.

Uh oh. So it’s not enough to accept the diagnosis, endure the surgeries and/or treatments, decide on reconstruction, and monitor our health ad nauseum. We also have to slay the disease, but live with the resulting monkey on our back.

Suck.

They also found that women still suffered PTSD and had a poorer quality of life three years after diagnosis and treatment.

Double suck.

I’m imagining fast-forwarding to 2013, when let’s assume for the sake of this argument my infection is a thing of the past and I’m cruising through life with new girls. Euphemistically speaking; I’m not ditching all my friends and finding new ones. I like ’em all too much to ditch ’em.

Let’s imagine that my “cancer journey” is complete in 2013, except I still take my daily Tamoxifen and see my oncologist every 3 months and get body scans quarterly. I am, for the most part, done. But I’m still going to have PTSD? And a crappier quality of life?

The researchers, from the Panteion University of Athens, warn that doctors should watch out for the signs of the condition when they are treating patients with breast cancer. Those Greek people are smart, gorgeous, and all-around awesome, and everyone on Earth would be wise to listen to and emulate them.

They warn: “Knowing that breast cancer patients are susceptible to PTSD, it might be necessary for the field of medicine to create a plan in assisting cancer patients that takes into account the entire spectrum of a patient’s experience with the illness.”

Emma Pennery, from the  British charity Breast Cancer Care, said: “The principle that women, and men, will have an ongoing risk of anxiety and depression following a diagnosis of breast cancer is well known, and there is a range of national guidance in the UK which covers the role of health care professionals in providing ongoing emotional support to patients. ”

I’m curious about that “range of national guidance” and wonder if it will make it across the pond. I certainly haven’t gotten any national guidance in all this. That said, if some form of it came my way, I’d probably scoff at the bloated, partisan jibber-jabber as something dressed up to look valuable but in reality is just an oily politician’s idea of pandering to me and those in my shoes.

But that’s probably just the PTSD talking.

drugs, drugs, and more drugs

Posted: January 20, 2011 | Author: | Filed under: breast cancer, drugs | Tags: , , , , , , , , | 5 Comments

So my doc asked me the other day if I’m still taking my antibiotics.

Really?

Did those words really come out of his mouth? Why, I oughtta…

Yes, I’m overly sensitive about this issue, because I hate the antibiotics so much. Love that they’re killing the infection, but hate them nonetheless.

Yes, I am still taking my antibiotics. Twice a day, every day. With no end in sight. I haven’t missed a dose, I say proudly, although no one seems to think this is a worthy feat. Sometimes people need a quick left jab, right to the kisser.

Not that I’m complaining. Really, I’m not. I’m glad that I have these drugs in my life. Who knows where I’d be (or whether I’d be here at all) without them. I’ve been on some form of antibiotics since May 13, with just one week off.

There was the precautionary IV dose during and after the mastectomy. Then an oral course at home for the first 10 days out of the hospital. Once I started feeling better, an additional course seemed superfluous. Wasn’t I healing like a rock star, even ahead of schedule in my typical impatient, over-achieving way?

Uh, yeah. So much for that.

Infection: enter stage right and become the star of the show.

Damned mycobaterium has become the bane of my existence. I hate it like I hate Sarah Palin. I wish she would have gotten the myco instead of me. Surely she could have picked it up in one of those mountain streams she claims to ford as she’s impaling innocent salmon. I’d like to see her be all cocky and try to “reload” in the midst of the myco.

But again, I digress.

That happens a lot.

I can’t blame it on “chemo brain,” but I’m going to blame it on “abx brain.” Surely the continual supply of Bactrim and Minocycline in my body all day every day for the last 169 days qualifies me for that small disability.

Yes, that’s right, I counted the days. I like to know just exactly how long I’ve been taking these two drugs, twice a day every day. I also take a dose of Florastor probiotic twice a day every day. The few times I’ve been lazy or resistant to shoving yet another pill down my throat and skipped it, I’ve been sorry. I owe a big debt of gratitude to Susan C. for recommending the Florastor, and if you’re they type who gets an upset tummy while on your week’s worth of Amoxicillin, you should take it too. I typically have a cast-iron stomach, but the 169 days of oral drugs combined with the myriad variations in the hospital, then shaken not stirred with the little bits of good drugs (e.g., Vicodin) thrown in for grins has given rise to a need for Florastor. 

Here’s the cast of characters now: the blushing beauty in the bi-colored pink is Minocycline. It’s a member of the tetracycline family, which a lot of people–mostly teens, I guess–take for acne. In fact, one of the many Walgreens pharmacists I’ve gotten to know asked me if I take it for acne. I chuckled and said no, why? And she said, “because your skin is really clear, so I thought it must be working.”  I may suffer from hot flashes, mood swings and brittle hair but by golly my skin is clear. I like that pharmacist a lot.

I’ve been trying to be very vigilant about taking my meds properly, rather than tossing them back and washing them down with a flute of champagne. Or two. Or three. Hypothetically speaking, that is. I’d never do that for real.

I’ve even read the literature that comes with the drugs from the pharmacy. Talk about a giant mess of C.Y.A. Take this little gem for the Minocycline: “Take this medicine with a full glass (8 oz/240 ml) of water” (not champagne?). I like the idea of 240 ml of bubbly. “DO NOT LIE DOWN for 30 minutes after taking this medicine.”

Well, I admit it’s been a while since I’ve read this info. Like 169 days, probably. And in my “abx brain” haze, I didn’t remember the DO NOT LIE DOWN part. Every night, I mean every single night, I gulp down the drugs with a sip or two of water, which is by my bedside, then I promptly LIE DOWN AND GO TO SLEEP. Oops. If my failure to NOT LIE DOWN means the Minocycline isn’t working, I’m going to be really mad.

This part of the Minocycline’s instructions is particularly vexing: “DO NOT TAKE THIS MEDICINE with food or milk unless otherwise directed. This medicine is sometimes taken with food or milk, however, certain medicines, food and milk may bind with Minocycline, preventing its full absorption.”

What’s a girl to do — take it with food or milk, or not? I don’t like instructions that include “sometimes.” I prefer black & white directions.

Here’s one part of the Minocycline instructions I can willfully and completely ignore, though: “THIS MEDICINE IS EXCRETED IN BREAST MILK. DO NOT BREAST-FEED while taking this medicine.” Ok, I won’t. I promise.

After you’ve finished laughing uproariously, as I did when I read this, let’s move on to the second antibiotic, Bactrim. This big guy is a member of the sulfameth family. Sadly it has none of the desirable characteristics of meth-derived drugs like increased energy, decreased appetite, effortless weight loss and eternal youth. 

It’s just a big, nasty, chalky pill.

Here’s a handy little graphic to show you just how big and just how nasty it is.

Twice a day, every day. For 169 days and counting.

It’s not without its humor, though. An excerpt from Bactrim’s monograph made me laugh again: “DO NOT STOP OR START any medicine without doctor or pharmacist approval. Inform your doctor of any other medical conditions including liver or kidney problems, blood problems, asthma, HIV, allergies, pregnancy or breast-feeding.”

Those last two made me chuckle, and I felt safe in crossing those off my list of things to worry about. Onward.

Bactrim, too, is picky about how you take it, and the monograph advises taking it not only with a full glass (8 oz) of water, but to also drink several additional glasses of water daily. No indication of how many ounces those glasses should be, though, and not a mention of milliliters to be found. Curious. I’m just glad it doesn’t yell at me to AVOID TAKING THIS MEDICINE WITH A FLUTE OF CHAMPAGNE. That would be depressing.

Here’s the best part of the nitty-gritty details of Bactrim, and I quote, “LONG-TERM OR REPEATED USE of this medicine may cause a second infection.”

Pardon me?

Did that really mention a second infection?

Excuse me while I go get some champagne.

Move over, cupcake

Posted: January 19, 2011 | Author: | Filed under: breast cancer, food | Tags: , , , , , , , , , , , | 2 Comments

So the latest food trend is (drumroll please). . . pie.

There’s a lady in Houston named Bella-Katherine Curtis who believes that nothing says love quite like a pie. The smell of a peach pie hot from the oven, made by mom’s or grandma’s hands, is a little slice of heaven, she said.

“There’s a joy knowing that someone made it just for you; someone loved you enough to make it,” said Curtis, owner of My Dee Dee’s Pie Shoppe. “It’s special. That’s what pies do. Cake is good but there’s something very special about pies.”

She’s right. And it’s about time pies got their day in the spotlight. Any monkey can make a cake from a mix and slap some canned frosting on it, but a homemade pie is special. Yes, you certainly can buy a crust and dump a can of gelatinous filling in it and call it done, but that’s not a real pie.

I grew up on homemade pie, and anyone who’s read this blog has heard me wax poetic about how great my mom’s pies were. Her coconut cream pie is the ultimate comfort food for me. Good day? Have some CC pie. Bad day? A piece of CC pie will make it better. Promotion? You earned a piece of CC pie. Car wreck? CC pie will help. 

Barb’s coconut cream pie was the real deal. Homemade crust (duh), made with flour, crisco, salt, and ice water. That woman could whip up and roll out a delicious pie crust faster than I could find the recipe in my cookbook.

The edges were always perfectly fluted, too. She said it was simple: just pinch the edge of the crust between your forefinger and thumb and presto! perfectly fluted.

I have perfectly good thumbs & forefingers, and I can certainly pinch crust between them, but mine never, ever looked like hers.

She made a lot of pies. Anytime she hosted a dinner party (which was often), the dessert would be pie. Anytime she went to a potluck, she’d bring a pie. Usually two. Any family gathering featured, you guessed it, Barb’s pie.

She gave me several pie-making lessons, and I did not excel. She would tell me to handle the dough lightly; too much or too firm and the crust wouldn’t be light & flaky. Frankly, I’d settle for light or flaky, without aspiring to both.

In her absence, I have tried to take over the pie-making. While I wouldn’t say it’s been an epic fail, it’s not been overwhelmingly successful, either. One Christmas Eve I attempted the old standard cherry pie. The crust was fussy that day, and the filling overflowed in the oven, so the finished product looked as if I’d dropped it from a tall building. If I hadn’t been so busy crying and cussing, I would have taken a picture, which I could then post here so everyone could laugh at me and that pitiful pie.

Curtis opened her pie shop in October 1992, rolling out 29 pies on her first day in business. Guess what? she sold them all. Today she’s known as “The Pie Lady.” My mom is smiling about that right now.

Anyone who knows anything about pie knows it’s all about the crust. Curtis says that crust is literally the pie’s foundation. Good pie bakers know that without a good crust, pie is a waste of calories.

“When you bake a pie you have to make a crust and take care of it,” said Curtis whose crust is her mother’s recipe. “Then, of course, you have a filling. There are many steps to pie, and it can make a big mess in the kitchen. It’s a lot more challenging than making a cake. It takes more work. But it’s worth it. A pie says more.”

She’s right. A pie does say more. It says, eat me now!!

But Curtis worries that old-fashioned pie baking might become a lost art. “In another generation it might be totally lost,” she said. “There are so few people out there who make scratch pies.”

I’m trying, Ms. Curtis, I’m trying.

Read about how much better she is than I at making pies here: http://www.chron.com/disp/story.mpl/life/food/7386674.html

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