Apropos

Posted: February 28, 2011 | Author: | Filed under: breast cancer, drugs, infection | Tags: , , , , , , , , , , , , , , , , , , , , , | 6 Comments

Two pieces of news today, all contained in one handy-dandy post. First, this comic made me laugh, even though it’s not applicable to me since I need both sides. Luckily, I don’t have to save up for one or both sides. Thanks to the Women’s Health and Cancer Rights Act of 1998, it’s covered.

So for those litigious souls out there who’ve pestered me to “make sure the doctor/hospital/insurance company/orderly/mammogram technician/parking booth attendant/janitor pays to clean up the mess that infection caused,” you can rest assured that I’m getting what’s owed me, so to speak.

Yes, people have actually said that to me. That I need to make sure somebody else pays for what happened to me.

Cha-ching.

If only it were that easy. Or if only I were that shallow, or had the energy to try and create a lawsuit, then all my troubles would be over.

As if.

I don’t hold anyone responsible for the post-surgery infection any more than I hold the sun responsible for rising each day. Some things just happen. Yes, I know there’s a scientific reason for the sun rising, something to do with the pull of the tides or the rotation of the Earth or some such phenomenon. But that’s not nearly as interesting or titillating as ambulance-chasing lawyers drumming up skeevy lawsuits.

If not for the Women’s Health and Cancer Rights Act, I’d be calling Jim Adler, the “Texas Hammer” real soon. The “tough, smart lawyer.” I bet he could get me top-dollar for my medical misfortune. But I’ll leave him alone for now and let him focus on the important cases, like the nasty 18-wheeler wrecks in the middle of the night.

Thanks to the WHCRA, a federal law says my insurance company has to pay for my reconstruction. The law refers to “mastectomy-related services,” which sounds a lot more exciting than it really is. Wonder if I can campaign to make mani-pedis part of the “mastectomy-related services.”

I first heard about the WHCRA while reading Promise Me, by Nancy Brinker. She’s Susan G. Komen’s little sister, who made the promise to her dying sister in 1981 that launched the global breast cancer awareness movement.

Thankfully, “breast cancer” is now a household term instead of a shameful secret, as it was in the past, and health insurance companies can’t deny the coverage required to fix the problems that breast cancer surgeries and treatment create. I could fill this entire screen with facts & figures, befores and afters, thens and nows, of breast cancer. But instead I’m thinking about the WHCRA.

Because of the WHCRA, I don’t have to worry about whether I can afford to clean up the mess that breast cancer (and its bad-news friend, the post-surgical infection) created. I don’t have to make a t-shirt that says “Will Work for Boobs” or wash dishes at Dr S’s house in exchange for my surgery. As if being diagnosed, going through surgery and dealing with the infection weren’t enough. I’m so glad I don’t have to sing for my supper as well.

The second piece of news is pretty important. Maybe not as important as the WHCRA, but only because that affects a whole lot of women, and this bit of news affects me and me only.

Today, Monday, February 28, 2011 is my 200th day of oral antibiotics.

Yes, you read that right: I have been on oral antibiotics, twice a day every day, for the last 200 days. Bactrim and Minocycline, also known as “these damn drugs,” have been my constant companions for 200 straight days.

I’m not great at math and am too old to waste time trying to get better at things that are useless, and for me, trying to get better at math is useless. It’s just not going to happen. I know I should believe I can fly, touch the sky, be whatever I want to be or some other such drivel as churned out by Mariah Carey and the like, but I don’t believe I can get better at math, and frankly, I really don’t want to get better at it. I’d much rather spend my limited time and energy on other stuff, like playing as much tennis as humanly possible.

But if I were better at math, I would be able to say what percentage of an entire year I’ve already spent on oral antibiotics. Oh, never mind; who cares. Let’s just suffice to say that 200 days is a really, really long time, and if you think otherwise, I don’t want to talk to you. Ever. Or at least until I get off these damn drugs.

If you want to know why I’ve been suffering this cruel & unusual punishment for so long, read this. I just can’t explain it again; I’m too exhausted from trying to do that math and figure the ratio of time spend on these damn drugs verses time not spent on them. Well, here’s the Cliffs Notes version of the story: I got an infection from the tissue expander on the right side after my bilateral mastectomy on May 13, 2010. The infection was (is?) tricky and was hard to diagnose, but we finally learned, in mid-August that it was a mycobacterium fortuitum, which is a wily little bugger that is insidious and hard to kill. The most powerful weapon against this bug is two different antibiotics taken twice a day for a very long time. Like forever.

200 days is a blip in the universe of long-term drug therapy. Every time I feel sorry for myself for still having to take these damn drugs, I remember my infectious disease docs chuckling softly and shaking their heads at my pitiful temper tantrum and infantile whining about why I still need to be on these damn drugs. They tsk-tsk me and handle me with the kid gloves I require of them, then sweetly remind me that many of their patients are on antibiotics for 2 years. 2 years. I’m no math genius, but I’m pretty sure that’s longer than 200 days.

Ok, so a little perspective is good, but still, I feel the need to mark the 200th day of twice-daily drug therapy. Judge me if you must, but consider this: there’s more to taking these damn drugs all this time than meets the eye. Think of the numerous trips to Walgreens to pick up said drugs, along with the other prescriptions I have to take, and the fact that none of them start on the same day, so one of them always needs to be refilled. Thank heavens my sweet oncologist added me to his personal pharmacist’s home delivery service, and now the FedEx man brings these damn drugs right to my front door, all at once. I’m sure they miss me at Walgreens.

There’s the sheer volume of pills I’ve swallowed. Twice a day every day for 200 days is a lot of pills. Again, I’m no math genius, but wow that’s a lot of pills.

There’s also the stress of remembering to take these damn drugs twice a day every day. It’s such a habit for me now that it will seem strange to not be doing it, when that day comes. Strange, but wonderful, too. I can’t wait. Actually, I can’t even think about it because I don’t want to consider how many days I will have been on these damn drugs by that time. But you know I’m going to be counting, right?

And then there’s the issue of what foods don’t mix with these damn drugs. Can’t eat dairy products for an hour before or two hours after I take these damn drugs, because dairy can inhibit the drugs’ absorption. If I’m going to go to the trouble to take these damn drugs, I certainly want them to get into my system and fight that mycobacterium.

And last but not least, there is the scorched earth tendency of the antibiotics to kill the good bacterium in my tummy, along with the bad bacteria elsewhere. I’ve gotten used to the near-constant morning sickness that comes with 200 days of these damn drugs, but I still dislike it. A lot. When the extreme nausea comes to call, no matter what I eat or don’t eat, whether an hour before or two hours after, I feel rotten. And don’t tell me your hard-luck story of how you had morning sickness every single day of your pregnancy, because at the end of that pregnancy, you got the best prize ever: a baby. Well, depends on the baby, I guess; some of them aren’t such prizes in the early days. Maybe the best prize ever is a puppy. To some people.

So by golly, I’m gonna celebrate having made it through 200 days of these damn drugs.

We highlight a president’s first 100 days in office, with either a favorable or scathing review of the job he’s done thus far. If our country can create a tradition based on a mere 3 months, I am well within my rights to celebrate having survived 200 days of these damn drugs. And since we all know it’s 200 days and counting, with nary an end in sight, I certainly will celebrate this milestone. Right now. Today.

I don’t know if it’s a nationwide tradition, but at my kids’ elementary school, they celebrate the 50th and the 100th days of school. Kindergarten especially makes a big deal out of these milestones, as well they should. Macy invited me to come to one of these celebrations and even talked me into wearing matching poodle skirts for the ’50s theme. And celebrate we did! A lot of those little kindergartners probably don’t know from one day to the next whether they’ll make it in the dog-eat-dog world of all-day school. No naps, no crying allowed, curriculum requirements that increase every year; it’s a jungle in there. That’s why they make a point to celebrate the milestones along the way, like the 50th and the 100th day. Why isn’t there a celebration for the 200th day of school, like there is for my 200th day of these damn drugs? Because the kids only go to school 180 days total each school year. So I’ve been on these damn drugs longer than the number of school days in an entire calendar year. Egads.

Ya know how we just watched the Super Bowl a few weeks ago? On February 6, to be exact. Well, on July 20th of last year, the media outlets that handle the infamous Super Bowl advertising spots were counting down 200 days until the big game. So in July, they’re thinking about selling ads during the Super Bowl, which won’t be played until February. End of July to first of February. 200 days. Curiously enough, on July 20th of last year, when the media hawkers began the countdown, I was in the hospital, for the second time post-mastectomy, with the infection.

Another significant stretch of 200 consecutive days of anything is the so-called 200 Days of Dread: a period from the spring of 1942 to November 3, 1942 in which Germany’s Afrika Korps under General Rommel marched toward the Suez Canal and Palestine, causing Jewish people there considerable and understandable stress. Not to minimize the significance of this event in World History, but yes, I’ve been on these damn drugs as long as the Afrika Korps threatened the Palestinian Jews.

And guess what? I haven’t missed a single dose of these damn drugs in all of the 200 days. Not one dose. Surely there’s a trophy for that.

This is too good to keep to myself

Posted: February 27, 2011 | Author: | Filed under: Uncategorized | Tags: , , , , , , , , , | 6 Comments

So it’s Sunday morning, I’ve got my coffee to quell a roaring headache (from the pollen and not the champagne that Mr Cremer pours with a heavy hand. I love a heavy pour). I should be pulling everything out of the pantry and organizing it (again) in a manner that will make it easy for the little people who live in my house to find exactly what they need the precise moment in which they need it, because I’m gonna be parked in a room at the med center for a while and unable to do their bidding.

Once I finish that, I need to gather up all the laundry in this house and wash, dry, hang/fold it all and return it to its original home in each recipient’s dresser and closet, then try to convince those recipients to wear the exact same clothes (turn ’em inside-out if you need to for variety) for the next 3 days so that when I leave the house for the hospital, the chore I really hate will remain completed for more than 2 hours.

I still need to put away the groceries I bought yesterday (I already put the perishables away, as soon as I got home, so don’t worry about spoiled milk and moldy cheese). Then I need to clean out the fridge and discard anything that won’t get eaten while I’m gone so it doesn’t confuse the folks who try to eke out a subsistence in my absence.

One of the big tasks hanging over my head is to sit down with the calendar and make a master schedule of all the events I will miss in the next little while, to ensure that the kids get where they need to be and that Trevor and my dad (who’s coming to help run herd on my little calves) know who’s coming and who’s going. Also need to take a peek and see what events are upcoming for which I need to stockpile, be it a birthday gift or card that needs to be readied.

Instead, I’m getting ready to go play tennis and scratching my head at one of the weirdest stories I’ve ever come across. No wonder I can’t get anything done; this is all-consuming.

If you missed this story on your local news, you must read it now. Thanks to Amy Hoover for calling my attention to what is by far the craziest story I’ve heard in a long, long time.

It will take you 30 seconds to read it, maybe a minute if you slow down to read thoroughly and fully digest all the details, unlike some of us who skim wildly to find the juiciest bits.

I don’t even know where to start with this one. I’m glad the story was so short, because there are so many points on which I’d love to wax poetic. But where to start?

Ok, I’ll start with the woman’s photo. My first thought was, I sure hope she was driving to the hair stylist’s because she needs to touch-up her color right away. Yikes! I haven’t seen roots like that since Macy pulled the world’s biggest tap root out of our flower garden last summer. I mean, that sucker was as tall as Macy. And now this woman’s roots rival that super weed.

Next: her ex-husband was in the passenger seat, as she’s driving to meet her boyfriend AND grooming herself for said meeting. Huh??? Presumably it was her car, since the ex was in the passenger seat, so why was he going, too? I could see it if he were dropping her off, but what in the world was he doing in the car? And more importantly, what was he going to do once she got to her boyfriend’s house? I’m assuming he knew what activity she was engaging in at the same time she was driving a car, so why didn’t he tell her to pull over and let him drive so she could finish her other task.

Moving on: she’d been busted the day before this insanity for DUI and driving without a license. So driving while shaving her nether-region is what she does while sober? Holy tequila shots, what does she do while drunk? That must be a whole ‘nother story. Probably much longer. And crazier.

And finally: the woman and her ex drove a half-mile after the crash and exchanged seats; ok, I can see how that makes sense in the mind of someone crazy enough to do what she was doing. But my question is: if the officer had witnessed a similarly insane situation, why on earth didn’t he share that one, too?

Now I’m really curious.

Turf wars

Posted: February 26, 2011 | Author: | Filed under: breast cancer | Tags: , , , , , , , , , , , , | 9 Comments

I wish I knew how to make this blog play music. I bet it can, since I’m pretty sure it’s smarter than I am, but I haven’t figured it out yet. I need a jazzy yet foreboding score to set the scene. Think Star Wars theme song combined with Indiana Jones theme Song with a little West Side Story mixed in.

I knew this was going to happen. I was partly dreading it, but a little curious too to see how it would play out. It played out, all right, and yesterday by 10:30 a.m. I was exhausted by it. Thanks to a beautiful bottle of Vueve Cliquot that Trevor presented at dinner last night, now I’m over it.

But it’s such a great story, I must share.

Those of you who’ve been along for the ride since this summer, when I was updating my trials & tribulations via Caring Bridge, know that I have an especially close relationship with my plastic surgeon. I’ve written a lot about the many ways I have tweaked him, and I hope to continue to do so here. In fact, I plan to. I will invent new ways to tweak him if they don’t present themselves organically, because I love him and really enjoy tweaking him. He likes it, too.  Trevor and I used to joke while endlessly waiting for Dr S during my multiple hospitalizations last summer that I would write a screenplay when this was all over entitled “Waiting for Dr S.” The title will be “The Tweaking of Dr S.” He always showed up, and he always brought his A-game to my bedside. I love that man.

I had great and ambitious ideas about transferring all my Caring Bridge posts over to this new, improved blogsite but it hasn’t happened. Yet. So for now, if you’re interested in reading (or re-reading) about the tweaking of Dr S, I’ve copied & pasted one of my faves at the end of this post.

As I’ve said before, surgeons and bedside manner don’t always go together. No peas & carrots there.

Because I don’t have enough on my plate or on my mind in the last few days before the big surgery, I had to go see Dr. S one last time. Personally, I though we had covered everything, and whatever we missed I certainly had covered with Dr Spiegel. But Dr S insisted I come back, one last time, to be extra sure everything is covered. I asked a simple question. I just wanted to know how he and Dr Spiegel are dividing up the work involved in this long, complicated surgery. Seems simple, right?

A little background: once we decided on the type of reconstruction surgery, Dr S referred me to Dr Spiegel. (Correction: once the post-mastectomy infection ruled out the easier option of tissue expanders to implants as my reconstruction, the option with which I was left was DIEP. Nitpicky? Perhaps, but I like full disclosure.) I did not want to go see Dr Spiegel. Nothing personal, I had just had it up to here with doctor’s visits, and I didn’t want to add another doc into my personal rotation. I’m 100 percent satisfied with the care I get from Dr S, and don’t feel the need for another doc. I was still under the mistaken idea that I could pretend to be a normal person in the interregnum between healing from the infection and reconstruction. Wrong! There is no “normal” anymore, so no interregnum.

I didn’t want to do it, but I did, and I have to admit, I’m glad I did, and Dr S was right. Yes, I said it: Dr S was right.

When Dr Spiegel told me that she and her assistant usually do the DIEP procedure themselves, but that Dr S was welcome to be involved, I got nervous. He doesn’t like to “be involved,” he likes to be in control; that’s why he’s so incredibly good at what he does.

It sounded so simple coming out of her mouth: She and Jenn usually handle the procedure but if another plastic surgeon refers a patient and wants to “be involved,” he is welcome.

I guess I envisioned two teams working together toward a common goal. Teamwork! Division of labor! Cooperation!

No, instead it might  be a little more animalistic than that. They are the dogs, and I am the soccer ball. Great.

Back to the simple question: Dr S didn’t quite answer me yesterday when I asked him exactly which part of the surgery he’ll be doing on Wednesday. See, Dr Spiegel may be a bit more experienced with microsurgery (the part of the DIEP procedure that involves harvesting blood vessels from my belly and reattaching them in my chest). This is presumably why he referred me to her. He is exceptionally good at the “artistic” side of plastic surgery, and I know beyond a shadow of a doubt that he will do a phenomenal job.

To me, finding out which surgeon is doing which part of the surgery is a perfectly normal thing. If I hired two laborers to do work in my home, I would ask which one would be doing which part of the job.

Dr S understandably didn’t want to disclose too much, but my guess is that Dr Spiegel do the blood vessel part, and he would do the transferring of skin and sculpting that skin into a nice rack. He also said that any revision surgery and all my follow-up visits would be with him. Ok by me.

 

There is no free lunch, dammit

Posted: February 25, 2011 | Author: | Filed under: breast cancer | Tags: , , , , , , , , , , , , , | 18 Comments

Some things just go together like peas & carrots, as Forrest Gump would say. Like idiot people & dumb comments. I’m still scratching my head about this one, but am putting it behind me and moving on. I’m trying, people, really trying, to smile sweetly and listen open-mindedly, but I don’t think I can stand it any longer. Do I really have to listen to one more person tell me how lucky I am to be getting “a free tummy tuck?” Reconstruction is serious business, people, and while I’m all for finding some good in a difficult situation, I AM NOT GETTING A FREE TUMMY TUCK. Yes, I realize I was shouting, and I apologize.

First of all, it’s not free. It comes with a whole slew of costs. While I may not be paying cash out of pocket, there are costs. Boy howdy are there costs. Any economist will tell you that even if something appears to be free, there is always a cost to the person or to society as a whole. I know this because I almost failed Economics in college and had sticky notes with econ principles taped all over my apartment that semester. (My near-failing grade had absolutely nothing to do with the fact that the class was taught by a wickedly cute TA who made it hard to concentrate. Yes, we flirted, then I was stupid enough to assert that I needed to earn my grade in the class and not coast on his goodwill and the fact that we drank beer together a few times at a seedy bar. True story. So stupid. The assertion, not the flirting.)

This “free” tummy tuck comes with a hip-t0-hip scar; 6 Jackson-Pratt drains, 5 nights in the hospital; 4 weeks of sleeping upright and in a chair; not being able to raise my arms for a week; a ban on lifting anything heavier than 5 lbs for a month; and no workouts for 6 weeks. Oh, and if you’re wondering how soon I will be able to get back out on the tennis court…don’t. Don’t wonder, don’t bring it up, don’t ask. Don’t even think about it. Don’t even speculate. Got it?

Can we talk about opportunity cost? Please, let’s talk about anything other than how long I’ll be on the DL for tennis. While I’m not paying actual money for this surgery, there’s plenty of opportunity cost, which means that to get one thing that we want, we usually have to give up another thing that we want. This is the idea behind the “no free lunch” adage. We could delve into economic efficiency, utilization of resources, societal costs, and other economic principles, but we don’t need to because (a) they’re pretty boring; (b) I never really learned them that well in the first place because of the prof crush & beer; and (c) all we really need to know is there’s no free lunch. Plus, I think I burned the textbook after that class was over. Bad, really bad.

Yes, I will come out of this surgery with a flatter stomach (something I could easily get from more time in the gym, BTW). And, as my cousin Susie said, I’ll be waking up to a nice present (new boobs). Both are true. But they’re not free. I reminded her, and will remind everyone who will listen, that I was pretty happy the way I was.

I don’t know where this place is or who these people are, but after all this talk of economics and surgery stuff, I want to go there. I might even stand in line for an “extreme” margarita. Don’t know what that entails, but I know I want one. Or two. Maybe I can even get a free lunch.

Pedey, aka Weasel Dog

Posted: February 24, 2011 | Author: | Filed under: breast cancer, kids, pets | Tags: , , , , , , , , , , , , , | 15 Comments

It’s been brought to my attention that I have written about Harry and Cinco the leopard gecko, but not Pedey, the other canine member of our household. Well, excuuuuuuse me.

Pedey, oh Pedey. I don’t even know where to start.

He’s a cutie, for sure. We weren’t planning on getting a puppy, not really. Not that day, anyway. IMHO, any day is a good day to bring home a new puppy, but not everyone subscribes to that point of view, so you gotta tread lightly.

Flashback to May 3, 2008. It was Payton’s 9th birthday. I went to Petsmart to pick up something for Harry and the Houston Humane Society was there with the mobile adoptions. I figured I’d scritch a few pups, get a dose of puppy breath, tickle a few fat bellies, and move on. Then I saw this: 

Oh. My. Gosh. I was smitten. That face! Those floppy ears! The speckled feet! The fat belly! The little white blaze down his nose! 

Did I mention that it was Payton’s actual birthday? 

And that I now really, really, really wanted a puppy?

And that I really, really, really wanted this puppy?

Long story short, Payton fell in love with Pedey (his mama taught him well), and we had to have him. Trevor, being the good sport that he always is, gave in, even though we already had one dog too many for him. Payton and I reasoned that Harry needed a dog, and since it was almost summer, the kids could help take care of this puppy.

Welcome to the family, little guy.

I think you’re going to like it here. We have a mentor for you named Harry. He’ll show you the ropes. He makes the mean face sometimes, especially when he has a chewie, but just ignore him.

We’ve got a best friend lined up already (Snoopy), a pool should you become a water dog, lots of toys & treats, and unlimited belly rubs.

It took us a while to come up with the right name for the new guy.

Since he was officially Payton’s dog, Payton got to have the final say. And he decided on Pedey, after his favorite Red Sox player, Dustin Pedroia. The dog is nothing like his namesake: he’s cowardly, lazy, and clumsy with a ball. But the name stuck.

He settled right into our life and weaseled his way into my heart. Let me state for the record that I’ve never had a small dog, and I’ll admit, I’ve never quite understood the appeal. Now before you carry-dog lovers out there go ballistic and send me death threats, let me be clear: I don’t dislike carry dogs or their owners. I’ve just never understood the benefits. 

Now I get it.

He was of course the cutest puppy ever. (I can say that because Maddy, the best dog in the universe, has gone on to her Great Reward, and because we adopted Harry at age 2 and never knew him as a puppy.)

He likes to snuggle more than rough-house. He would rather sleep than do just about anything else (preferably in my lap). 

We call him The King of Comfort, because he always manages to find the most comfy spot available. 

If he’s not fast asleep in a prime spot, he’s camped out under my desk chair. 

Sometimes his legs or tail peek out from underneath the chair, and sometimes he’s completely hidden and I forget he’s there until I scooch the chair back and accidentally scare him half to death.

Sometimes he gets in the chair, right behind me. When he was tiny, it worked out just fine. But now he’s a little too big for that, but he still tries it sometimes. 

He still manages to fit. Mostly.

He likes to make a nest when he finds a comfy spot for sleeping. He will either wedge himself tight in between pillows & cushions, or get himself wrapped up in blankets & comforters. He will also stay in bed until he’s good and ready to get up, instead of leaping up the instant my feet hit the floor, like Harry does.

We don’t know what kind of dog he is, besides lazy & shiftless. Beagle, maybe? He has short, coarse hair; very different from the labs’ hair I’m used to. He has a very wrinkly brow and often looks quite contemplative. It’s mostly for show, though, because he sure doesn’t seem very smart. 

He’s not all that well-trained, either, because he was so cute we were always holding him instead of schooling him to sit and stay. 

He never did learn to love to swim, like the other dogs do. He doesn’t really even like for his feet to get wet, hence the need to be in my lap as often as possible.

Dana Jennings, a wonderful writer for the New York Times said, “Good dogs – and most dogs are good dogs – are canine candles that briefly blaze and shine, illuminating our lives.” I’ve had 4 dogs in my adult life: Maddy, the best dog ever in the history of all dogs. So good, I still get teary when I think of her, several years after her death (and y’all know I’m not much of a crier). So good that the urn of her ashes is on a side table in my bedroom, her name engraved in a simple, beautiful script, the urn way too small to contain all the love and memories she provided. Then there was Lucy, who we got to keep Maddy company. Her canine candle was pretty dim, and there is no urn for her. Then came Harry, and now Pedey. A short but very full doggie history.

Pedey was so happy this past summer, when I was convalescing from surgery and multiple hospitalizations. I don’t usually lay around much, but I had to then. And he loved it. He was always right by my side or in my lap, sleeping away. We joked that we should have snuck him into the hospital, so he could have slept on my bed with me there.

Well, Pedey, rest up; in a few days, I’ll have some more down-time. Are you ready?

The to-do lists

Posted: February 23, 2011 | Author: | Filed under: breast cancer | Tags: , , , , , , , , , | 4 Comments

The title says lists, plural, because I’m a realist and have never figured out how to willfully deceive myself. Other people I have no problem willfully deceiving, but myself, not so much. I have a list of what I want to get done, and another for what I will probably get done.

The countdown is on to my surgery. Yikes. One week from today, I will be at the hospital. Yikes. Reconstruction is a much-anticipated thing for most breast cancer patients. It means getting your body back (in a new, sometimes improved form). It is voluntary and scheduled whereas a mastectomy is required and imminent. It is symbolic of having made it, having endured, having gotten through the worst part. It is also scary, for sure. I don’t recall being scared before the mastectomy in May. Maybe I was, but have blocked it out. Now that I’ve seen photos of other mastectomies and have a better understanding of how the procedure is actually performed I certainly could be scared, but being scared after the fact isn’t very effective.

I’m guessing I don’t recall being scared about that surgery because things moved very fast (3 weeks from diagnosis to being wheeled into the OR); I was wrapping my head around the fact that I had been diagnosed with cancer at the tender age of 40 and with two young kids at home; and there were a ton of things to do to prepare. Not just the battery of tests, but the nesting. That nesting really should be an Olympic sport. I know I’d have to beat out some OCD pregnant women, but I think I could bring home the gold. 

I’m not nesting this time around. I’d maybe only get the bronze. And it would probably be a bit of a pity vote. I just haven’t been putting in enough time flitting around the house, cleaning out closets, organizing the pantry and re-folding every blanket in the linen closet.

Since becoming a repeat customer at the hospital, I know what’s in store form me next week: the scratchy sheets, the one-size-fits-someone-giant gowns, the smell, the noise, the yucky food, the parade of nurses in & out of the room, the abundance of tape stuck to my body, the JP drains, the pain, the nausea, the lack of peace & quiet.

Ok, maybe I’m not scared but annoyed. I’m not so good at sitting still and being dependent. And I have a lot of that coming up. So I distract myself by making to-do lists. It makes me feel better. There’s something very satisfying about setting goals and crossing things off the list.

Things I want to accomplish before surgery:
(insert long list here)

Things I will actually get done: play a lot of tennis.

Now that’s a good list.

It’s not about the chest, stupid

Posted: February 22, 2011 | Author: | Filed under: breast cancer, cancer fatigue | Tags: , , , , , , , , , , , , | 4 Comments

Ugh, yet another reminder that my brain is filled to the brim with cancer ca-ca. I mentioned a few examples of the ca-ca recently, and here I am once again, consumed with it. The latest: while browsing on etsy, I came across a “store” called ETC Chest. My first thought was, hmmm, wonder what kind of breast cancer stuff they have in that “store.” Guess what kind of breast cancer stuff they have? NONE.

ETC Chest stands for “Embroidered Treasures and Crafts” Chests. It has nothing, nada, zilch to do with the human chest, flat or reconstructed.

Well, duh.

Reminds me of my second-favorite Far Side cartoon:

And because you’re probably curious, my all-time favorite Far Side cartoon is:

Thank you, Gary Larson.

This little exercise in idiocracy (I think I just made that word up; I like it. No, wait there was a movie by that title. Never mind.) reminds me of how pervasive the cancer fatigue can be. Lots has been written about how a cancer diagnosis wrecks your life, and even when the cancer is vanquished and you end up with the best-case outcome, it’s always there. The fear, the weariness, the unseen scars.

My blog friend Lauren writes an incredibly eloquent blog called After Five Years. I highly recommend you check it out if you’re curious about what it’s like to live with cancer. She recently wrote a post about going back for a mammogram and it so perfectly captured the fear, the anxiety, the all-around shittiness of living with cancer. I held my breath throughout the entire post, then was gasping and sputtering and although it was only 9:30 a.m., felt like I needed a nap.

Lauren is a lot farther along in the “cancer journey” than I am, and in fact I can’t even comprehend getting a mammogram right now. Of course, having no breasts, it would be a physical impossibility, but still. I’m not yet to the point of having the routine scans that every cancer survivor endures at regular intervals. The stress and anxiety of knowing that there’s a (hopfully) comprehensive sweep through your body to sniff out errant cells is all-encompassing. I can imagine people all over the world watching the calendar, knowing that an appointment is upcoming. The anxiety of waiting for the appointment time to approach is nothing compared to the feelings that course through one’s body during the actual scans (or blood tests, as the case may be), and even that is a drop in the bucket compared to the sheer terror of waiting for the results. Talk about PTSD. It’s a wonder each and every cancer survivor isn’t a raging alcoholic. Or seriously addicted to Twizzlers. I can see myself going down either path, maybe both. And I’m just getting started on this “cancer journey.”

Life goes on for survivors. That’s a beautiful thing, and it becomes all the more precious when a serious illness rudely interrupts your life. But it’s not easy. Cancer is a sneaky beast. It invades your body, and even when it’s caught early, small, and contained, it has a unique ability to rattle your cage, big time.

Can I get that overnighted, please?

Posted: February 19, 2011 | Author: | Filed under: baseball, breast cancer | Tags: , , , , , , , , , , , , , | 9 Comments

I like funny t-shirts. I like snarky, funny t-shirts even better. Or is it redundant to say “snarky” and “funny?” Are there people who don’t think snarky is funny? If so, I have no use for them. Trevor’s grandma, Petie, had a cute little needlepoint pillow on her couch in the sitting room of her Salisbury, North Carolina, home that says “If you don’t have anything nice to say, come sit by me.” I’ve always ascribed to that point of view.

I don’t have a picture of Petie’s pillow, but found this one by using the Google. Now I’m wondering why in the world I don’t own one of these pillows? It would make me smile every time I spied it. It’s the little things, people.

While looking for an image of that cute little pillow, I found this: 

For those of you who are uninitiated into all things Red Sox, that foxy number 46 is my boy crush, Jacoby Ellsbury. He now wears number 2 on his jersey, though looks no less foxy. That’s JD Drew crouched next to him, close enough to whisper in Ell’s ear (lucky bastard). I’m sure they were discussing some serious strategy, or maybe making fun of Dora (aka Alex Rodriguez) who is such a tool and deserves to be made fun of at every possible opportunity.

But I digress.

Here’s the real reason for today’s post (although it could easily become all about Ells. Last season was a long, dry boring one for me because Ells was hurt. Not just hurt, but rehabbing in Arizona, so not even in the dugout and available for close-ups or slow pans by the ever competent NESN camera guys. It was a long season indeed. But Ells is back and ready for action and hopefully lots of on-screen time.)

But seriously, back to the real reason for today’s post.

Look what I found.

Just what I’ve been looking for.

But wow, what bad luck to have found it so close to the Resurrection, instead of during the long months of walking around with a chest flat enough to play quarters on, with no explanation. Ok, that is some seriously bad sentence construction, but you get the drift. I’ve had a freakishly flat chest for a long time, and have longed for a shirt that tells the world that change is underfoot. Or, undershirt, as the case may be. I got that chance with my “cupcakes” shirt, but I can’t very well wear that every day. I hate doing laundry, and wearing my cupcakes shirt every day would require a lot more of that chore.

So I probably need the “under construction” shirt, too. Although, can someone please explain to me why the shirt is modeled by a guy???

Now that is just weird.

But I still want the shirt. Wonder how fast I can get it?

The Big Dig

Posted: February 18, 2011 | Author: | Filed under: breast cancer, infection | Tags: , , , , , , , , , , , , , , | 39 Comments

Yesterday was yet another trip to the medical center, for one last pre-op visit to Dr Spiegel before reconstruction. I really need to think of a catchy title for the surgery, something like Boston’s big construction project, the Big Dig. Come to think of it, there are some similarities between the Big Dig and my surgery: both relate to the Central Artery and Tunneling (in fact, the official name of the Big Dig is the CA/T Project). Both are complicated, involve lots of people, and take a mighty long time to complete. But unlike the Big Dig, which replaced the 6-lane elevated Central Artery (I-93) with  a 3.5-mile long underground tunnel, my surgery won’t cost $22 billion. Hopefully. My insurance company, which has been mighty nice so far, might just stroke out about that figure. 

The Big Dig sounded like a great idea and was intended to be a tremendous boon to an already kick-ass city. But mismanagement, scandal, and skyrocketing costs quickly dominated headlines, and my second-favorite city had a big mess on its hands. Congressman Barney Frank quipped, “Wouldn’t it be cheaper to raise the city than depress the artery?”

Say what you will about Barney, but that’s a good line.

But back to the update on the doctor visit. This was Trevor’s day to meet the lovely Dr Spiegel, her ultra-energetic PA, Jen, and her trusty nurse Sonia. My friend Laura, who is a nurse practitioner in the liver transplant unit at Methodist, met us there, too. Dr Spiegel wanted to brief my caregivers on what to expect post-surgery, and Laura kindly offered to help out. In her white coat and super-stylish glasses, she brought a nice element of professional gravitas to the occasion. She told Dr Spiegel that she’s done some match-making for me and picked out an anesthesiologist she likes and trusts, and Dr Spiegel agrees that Dr Ashmore is the guy for me. Laura and Sonia recognized each other right away, then she and Jen hugged and high-fived, happy to be collaborating on my case. It’s good to have connections.

The visit itself was pretty uneventful. I like uneventful at the doctor’s office. Dr Spiegel  went over a few basics with us but since we were pretty much up to speed on everything, there weren’t any new developments. I’m finished with all the pre-op testing (bloodwork, blood donation, x-rays, EKG, CT-scan), and just need to watch the video consultation on Dr Spiegel’s website to get a more detailed overview of the procedure. I’m not saying I’m scared to do that, but after watching a video on youtube of an actual surgery, on an actual person, I’m not in a big hurry. Ick.

The one topic we did need to cover, though, was the infection. I wanted to bring it up in a way that seemed breezy and conversational, as opposed to, “How the sam hell are you going to keep this bloody nightmare from recurring, lady?” I was pretty sure that wouldn’t go over too well.

I’m not the most diplomatic person, and I tend to say what I really think, even if it’s not pretty or may be hard to hear. It’s a blessing and a curse. Believe it or not, I actually do put a lot of thought into what I say and how I say things, but because I’m pretty direct, sometimes things come out a bit, um, harsher than I intend.

Sorta like, “Are you outta your mind??? You’re not really going to wear that are you?” or “Clearly that person has neither friends nor a mirror; why else would one go out in public looking like that???” as opposed to “Have you thought about what to wear?” Those kinds of niceties take a bit of work on my part. My instinct is to just blurt out whatever needs to be said, and let the chips fall where they may. We’re all grown-ups, right?

Right. Except I really don’t want to tick off the nice lady with the very sharp scalpels. That would be bad. So I fumbled around and probably sounded idiotic by saying, Um, so, uh, like, how worried do we need to be about the um, you know, infection? You know, like, um, during the uh, reconstruction?

She smiled knowingly, and if she’d been sitting closer might have patted my hand and said, there there.  She reminded me that my case isn’t exactly normal, and I tried not to tell her that “normal” is pejorative and listened to what she had to say.

She has a plan, of course, and it sounds like a good one. Usually, in cases of infection, she would wait to do reconstruction, to be sure the infection is truly gone. But in my case, which again is not normal, we need to get in there sooner rather than later and clean up the mess,  i.e., excise the damaged tissue and replace it with some new, fresh meat. And by meat I mean my own flesh. Fresh flesh. Yum.

The plan is to work on the infected side last, and she promised to take her time and wash it all out thoroughly with 6 liters of antibacterial solution. That’s way more than usual. She’ll have separate fields of instruments, and once the instruments touch the infected area, they’ll be classified as contaminated. Remember the scene in the movie ET at the end, when the little guy was dying, and the family home was a warren of plastic sheeting populated by feds in Haz-mat gear? I’m having visions of the Haz-mat suits. But hopefully no aliens. Although I do kinda like the polka-dotted kiddie pools in this scene.

So we’re on track, on schedule, and presumably ready to go. She estimates the surgery will last 8 hours, not 12-15 like I’d originally heard. Of course, we won’t know what we’re dealing with until she actually gets in there and starts cutting and scraping away, but I’m going to be optimistic.

Meanwhile, I’ll be thinking of a name for my own personal Big Dig (if you have ideas, send them em!), and can’t wait to post before and after pictures like this:

Except, I won’t make you look at the before pics, because they’re pretty gross, and that would just be mean.

Can somebody please shut off my brain?

Posted: February 17, 2011 | Author: | Filed under: breast cancer, kids | Tags: , , , , , , , , , , , , , | 8 Comments

For the last several nights I’ve been waking up in the middle of the night with questions to ask Dr Spiegel today about my upcoming reconstruction. I like how “upcoming reconstruction” sounds so formal and important, and perhaps a teeny bit ostentatious. As opposed to the reality of a terrifying, bloody mess. But I didn’t have it together enough to put a pad & pen by the bed to actually write the questions down, and now I can’t think of them (anyone have any suggestions? Lemme know. I know there’s stuff I’m supposed to be asking her about but can’t for the life of me find that stuff).

My brain must be working overtime, especially at night, when it should be resting and refueling so it’s ready to assist me with my two most basic tasks: impressing Payton with my trivia knowledge while we watch “Cash Cab,” and helping me answer questions from Macy like, “If a banana is a fruit, where are its seeds?”

I hate those kinds of questions. I really should know the answer. It’s there somewhere, deep in the recesses of my brain, but it’s buried by all this cancer ca-ca. If my brain were being depicted by a pie chart, there would be normal-sized pieces of pie for the kids, the home front, our schedules, tennis, world peace, and such. Then there would be a gigantic piece for cancer ca-ca. 

I hate that the cancer ca-ca takes up such a big piece of the pie. I like pie. But I don’t like this pie.  If only the pie chart were about pie, instead of all that other stuff. That would be a really good pie chart.

My Uncle Wilford (my mom’s older brother) used to say he liked two kinds of pie: hot and cold. Me too. And I hope Uncle Wilford is having a piece of both right now, at a beautifully set table on a puffy white cloud with his two sisters, my mom and Aunt Margie, sitting beside him. All the pie they can eat. And no pizza. Uncle Wilford said he didn’t like pizza because he was older than it. Funny guy. Miss him.

But back to the cancer ca-ca. It fills my brain stealthily, easily, and constantly. I’m usually pretty organized, but it infiltrates. I tend to keep a good handle on the various comings & goings of the members of this family, and rarely do I drop any of the balls I juggle on any given day. Not bragging, just saying. I’m usually up to whatever this life of mine throws at me.  But I’ve been dropping balls lately, and I don’t like it.

Macy was invited to a birthday party recently, and I forgot to add it to the calendar, and she missed the party. Oops. Then I looked right at the calendar to assess the day’s tasks but still forgot to take Payton to his weekly hitting lesson. Drat. Then there was the test I forgot to make sure Macy studied for, and she got a bad grade. She typically doesn’t get bad grades, so it was upsetting for her. Her teacher sent home the study sheet for the re-take, which Macy dutifully put on the fridge with a magnet. I saw it there but it never even registered in my brain, so we didn’t work on it. At all. And then, the re-take was upon us. Macy remembered as we were walking out the door to go to school. Damn, damn, damn. I dropped another ball. I was tempted to advise her to just tell her teacher it’s my fault, and that I’m too busy with all this cancer ca-ca. But I didn’t. I hung my head for a minute, cursed myself out under my breath, kicked a stray tennis ball on the garage floor, then reminded myself that it’s one test in the 3rd grade. Well, technically two tests, since she failed the first one and had to re-take it, but again, let’s stay on point here and recognize that it’s no big deal. I wrote her teacher and note and fessed up, told her it was my fault and that she & I both know that if it were solely up to Macy, she would have aced that test. Her teacher wrote back and said pfffft, don’t even worry about it; as you can tell from the attached progress report, one test isn’t going to bog her down. She will survive, and so will I.

Thank you, Mrs. Motal.

From the time I wrapped my head around this wretched diagnosis, I’ve been determined to do all that I can to ensure that cancer doesn’t become me, doesn’t define me, doesn’t defeat me. Cancer may win a skirmish here and there and may make me feel really crummy; it may open the door for a nasty infection that brought on another epic battle; it may deposit more grey hairs and new wrinkles; and it may cause me to miss a thing or two on the master schedule. Cancer will most certainly cause me some sleepless nights. But cancer will not defeat me. 

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