Cupcakes

Posted: January 23, 2012 | Author: | Filed under: breast cancer | Tags: , , , , , , , , , | 15 Comments

No, this post isn’t really about cupcakes. Sorry. It’s about a funny shirt and stupid people.

I wore this shirt to the gym on Friday and then to run errands afterward. I meant to write about it then but was busy being the hostess with the mostess and am just now getting to it. Anyhoo, the shirt:

My friend Jodie sent it to me in the midst of my cancer “journey” and I howled with laughter. I wore it proudly after my mastectomy and before reconstruction, when my chest was flat as a board and very conducive to easy reading. I wear it proudly now after reconstruction, and will continue washing it on delicate and hanging it to dry in hopes of prolonging its life.

I usually get a comment or a sly smile from my fellow gym rats when I wear this shirt, but Friday I encountered two older ladies who didn’t appreciate the humor. The first one looked at me and tsk-tsked then told her friend how inappropriate she thought it was to make light of such a serious situation. She wondered aloud why our club doesn’t have a strict dress code.

Really??

You know me, I couldn’t let it go. Just couldn’t turn the other cheek and walk away.

I said excuse me, I couldn’t help but overhear (not that she was trying to be discreet in her criticisms) what you said about my shirt. I’m curious what exactly about it bugs you? She replied that she thinks it’s disrespectful for people to be flippant when they know nothing of the disease.

Oh boy.

I pointed out as nicely as I could (which probably wasn’t really all that nice) that I do indeed know something of “the disease.” She looked a bit surprised when I told her that I myself had breast cancer and am proud to be a survivor. I like the fact that people in the gym who don’t know me see my shirt and realize that cancer survivors can get on with life. I’ve had several people tell me that seeing me at the gym is inspiring to them, and on days when they’re struggling through their workout, they see me hitting it hard and decide to step it up a bit. After all, if the girl who had cancer can do it, they can, too.

But Judgemental Lady didn’t see it that way, apparently. See, she thought there’s no way I could be a cancer survivor because I’m too young. Women my age don’t get breast cancer, she says.

Let’s just say that she got a bit more education on that topic than she might have wanted.

I informed her and her friend that according to the American Cancer Society, nearly 20,000 breast cancer diagnoses a year are delivered to women younger than 45. That my breast surgeon has performed bilateral mastectomies on women younger than me. That my OB-GYN — who diagnosed me — recently diagnosed a women who is 27 years old. That young women with breast cancer fight a different battle than their older counterparts, for many reasons: facing more aggressive cancers and lower survival rates, (hopefully) battling the beast for more years than we’ve been alive, a lack of effective screening for women under 40, being underrepresented in research, having young kids at home, dealing with fertility issues, enduring early menopause, and struggling with serious body-image issues being among the more egregious.

No charge for the lesson, lady.

I set her straight and went on about my business. While waiting in line to return a coat that was too small for Piper (yes, little piggies do need a coat, even in Houston), a lady told me she liked my shirt.

Oh, really? How refreshing.

She went on to ask if it was a fundraiser for cancer. I had to think about that for a minute, and while I was trying to figure out what in the sam hell she meant, she started blabbing about a bake sale her kid’s school did for cancer. She thought my shirt referred to a bake sale! Now that’s a new one.

I explained that no, it’s not a fundraiser and it’s not a bake sale, that I myself had breast cancer. She still looked puzzled, so I spelled it out for her: “cupcakes” is a euphemism for breasts, and mine “licked cancer” by defeating the wily beast that was laying siege to my body. I guess technically my cupcakes didn’t lick cancer, but my surgeons did by amputating said cupcakes, but that seemed like more detail than the conversation warranted. She smiled at me in the manner one would smile at a deranged lunatic on the loose and scooched her shopping cart back a little bit.

I don’t care what the general public thinks; I love my shirt and will continue to wear it proudly. Judgemental old ladies and bake-sale zealots be damned.

 

A sliding scale

Posted: November 28, 2011 | Author: | Filed under: breast cancer, cancer fatigue | Tags: , , , , , | 6 Comments

Words and images of battle are often ascribed to cancer.  Some cancerchicks take issue with that but I’m not one of them. Having written this blog — mostly about cancer — for the last year, I’ve come to realize that it’s hard to talk about a cancer battle without well, calling it a battle. I’m not even sure what else one would call it. “While undergoing treatment for breast cancer” seems rather cumbersome; “While undergoing treatment for breast cancer, I lost my mind, gained weight, and grappled with a whole new set of issues” doesn’t quite work, but “While battling breast cancer, I lost my mind, gained weight, and grappled with a whole new set of issues” is a bit more succinct. “During the time in which I was ridding my body of cancer” is pretty clumsy, but “During my fight against cancer” works quite well. I like efficiency, so the battle metaphor works for me.

One thing I don’t like about it, though, is the idea that those who “lost the battle” with cancer didn’t fight hard enough or were somehow at fault. Cancer is totally random, people. It strikes those who take excellent care of themselves as often as it strikes those who are not so careful with their health.  Survival depends on a lot of things, and sadly, sheer force of will is pretty low on the list. If survival were tied to will, my sweet mama would be alive and probably ringing me up on the phone right now to ask me if I’ve mastered the art of pie crust yet and to suggest that I let her little darlins, aka my children, have enormous ice cream sundaes for breakfast. She fought like hell and did every single thing her team of doctors at MD Anderson told her to do, no matter how tired she was or how crappy she felt. She endured more awful stuff than I like to remember. She wanted to live to see her little darlins grow up (and to hassle me about not giving them enough treats/presents/leeway/benefit of the doubt). She fought like hell, and waged a mighty battle, and was a tireless, non-complaining warrior. And yet, she still “lost.”

Cancer, and the battle one’s life becomes when diagnosed, is on my mind today, as it often is, but today even more so than usual. Another friend has been diagnosed, and my heart is so heavy. My thoughts return to her often, and I’ve felt just plain sick ever since I heard the terrible news. Cancer comes after people indiscriminately, and it seems to me it gets the good ones just as often as the mean ones. My newly diagnosed friend is most definitely one of the good ones. She deserves so much better than pancreatic cancer. How someone with such a sweet and gentle nature and such a giving heart can fall victim to such a merciless fate is beyond me. And yet, she begins her epic battle today.

I’m not naive enough to wish for a world free of cancer. But I do wish there was a sliding scale. If you’re going to get it, in all its ominous forms, why can’t the scope of the disease be equal to how nice a person you are? Why is it that “only the good die young,” as Billy Joel sagely points out? It’s just not fair for cancer to wage war on someone who is patient and kind when someone who’s vain and shallow gets a free pass. Or for cancer to creep up on someone who’s worked all his life and is ready to finally enjoy retirement, while someone who’s dishonest and rude escapes unscathed. I just hate that cancer pounds on the door of someone who’s trying to do all the right things, yet skips completely the person whose main concern is keeping up with and besting her neighbors. Where’s the sense in cancer claiming a delightful human being who would give you the shirt off her back, yet ignoring the not-so-delightful human being who is petty and small?

I’d like this system a lot better if there were a sliding scale.

6 years later…

Posted: October 13, 2011 | Author: | Filed under: breast cancer, kids | Tags: , , , , , , , , , , , , , , , , | 14 Comments

Today is National Metastatic Breast Cancer Awareness Day. Congress said so, and in making such a proclamation, let’s hope we get some action. Action beyond pink ribbons and promotional tie-ins like toilet paper and cups of yogurt. The estimate is that some 160,000 women are dealing with metastatic breast cancer, but I suspect the number is much higher. Metastatic means the cancer has spread. Stage IV. There is no Stage V. Every BC patient’s worst nightmare. Because being diagnosed at all, regardless of stage, isn’t nightmare enough.

I’ll save the mets post for another day, because there’s another commemoration taking place today, and I won’t be able to rest until I get this post out of my head.

Or so I thought.

I sat down at my computer to mark this important day, but I got nothing. I am stuck. The enormity of the topic overwhelms me. I want to write just the right thing, but in my quest for perfection I’m struck down, unable to convey the importance that screams to get out.

It’s not often that I’m at a loss for words, particularly on this little blog. I rarely have trouble thinking of what to write, and most days the topic guides me. Sometimes a topic pops into my head and I have an overwhelming urge to write. My fingers on the keyboard can hardly keep up with my thoughts as they tumble out of my head.

But today, I’ve got nothing.

And rather than make myself crazy on this day, this important yet heartbreaking day, I’m going to re-run the post from last year. I added a few more pictures, because this time last year I was brand-new to blogging and hadn’t quite figured out how to manage the images in my posts. But more importantly, I added a few more pictures because I need to remember what she looked like.

My heart is heavy as grief once again rears its ugly head and reminds me that she is gone, forever. 
It’s been exactly 5 years since my mom died. Lots of people have written about loss & grief, and most of them have done it more eloquently than I. If you knew her, you loved her. Plain & simple. She was one of those people. She never met a stranger and could talk to anyone. The stories are endless, and if I think really hard I can conjure up the sound of her laugh. I have to work hard to remember her voice, though, because her “sick” voice is the freshest one. I also have to think back to how she looked, pre-cancer, before the dreaded disease ravaged her body yet was unable to extinguish her effervescent personality.

My mom was an incredible cook. She grew up on a farm and lost her own mom at age 13, so she assumed more responsibility than a middle-schooler should. She taught me a lot in the kitchen, although I’ll never match her skill with pie crust. I try every year at Thanksgiving and Christmas, and end up exhausted, frustrated and having used a month’s worth of curse words. One year at Christmas she gave coupons for a homemade pie, and those were highly prized gifts for sure.

She was a “white” woman who married into a Greek family. “White” means anyone who’s not Greek. Sometimes the Greeks aren’t happy about “whites” joining a family, because they want their kids to marry other Greeks. My mom didn’t let that stop her. She ingratiated herself into the lives of the Greek women and learned their culinary secrets. It wasn’t long before she was the best cook in the bunch. Not bad for a “white” girl.

My sweet mama was the quintessential suburban at-home mom: PTA president, Girl Scout leader, queen of homemade Halloween costumes. She put a homemade meal on the table every night for dinner, and I was halfway through elementary school before I realized that the homemade cinnamon roll that was my lunchbox treat was a rarity.

She had a love of learning that I see echoed in my own kids. I’m sure she flourished at college, probably thrilled to be responsible only for herself for the first time in years. She was president of her sorority and got this fancy necklace to wear during her reign. The look of pure happiness on her face makes me smile all these years later. In her typical over-achieving way, she graduated college in 3 years, then became an English teacher before she became a mom. My whole childhood, she had us look up words in the dictionary to learn how to spell. I won the spelling bee in 4th grade, and to this day am proud of being a good speller. She instilled a love of words and reading that I’ll carry with me my entire life.

When Trevor graduated from business school in 2004, she was as proud of him as if he were her own child. In fact, once he married into her family, she considered him a son. Not a son-in-law, but a son. She was sick at the time this photo was taken, but hid it well. She didn’t want anything to interfere with his big day.

She had a lot of success in life, but her greatest achievement was being YaYa. She loved her grandbabies to the max, and when she knew she was losing her battle against cancer, she spoke of her sadness in not being able to watch them grow up. She’s missed out on a lot. But loss is a 2-way street, and the 4 kids who were lucky enough to have her as their YaYa, albeit way too briefly, have missed out as well. As each year passes, and her grandbabies grow up, they change and take on new interests and habits. She would have loved every minute of it. Something tells me she would have been quite adept at navigating whatever stage those little darlins are in.

Here they are on the day of her funeral.

Andrew was 8, Payton and his cousin Megan were 6, Macy was 3 when YaYa died. She was 67. Way too young, all the way around.

Life isn’t the same without her. While the pain of loss has lessened over the years, it’s still there, and I suspect it never goes away. No one in your life loves you the way a mother does. And no matter how old I become, I will always miss my mother’s love. Oliver Wendell Holmes said that “mothers carry the key of our souls in their bosoms.” That certainly was the case with my mom.

Milestones are hard when you’ve lost someone so dear. Every year, the week or so leading up to the anniversary of her death has been miserable. I find myself transported back to the time of  illness and all of the unpleasantness that entailed. Taking care of her was both the hardest thing ever and the greatest honor. I went into it knowing it would be hard, but having no idea how brutal. Balancing that with taking care of my young family was grueling, no doubt. But I wanted to come out of it with no regrets, and I’m happy to say that I did.

This year, however, was different. I wasn’t dreading the date. Maybe because I’ve got a lot on my mind and a lot on my plate. Maybe because as I get ever closer to regaining my “normal” life after my own cancer battle, I have a new perspective. Maybe I’m just getting absent-minded in my old age.

For a while after she died, I looked for her in crowds: at the grocery store, at a baseball game, at any random gathering. I knew, of course, that she wasn’t there. At least my rational brain knew that, but I looked anyway. I don’t know when it was that I stopped looking, but at some point, I started to see her. Not really her, but glimpses of people or expressions on faces that recalled her: the woman at the gym who looks a lot like her from the back. The resemblance in my niece to my mom’s photos as a child. My aunt’s hands, which look just like my mom’s.

This year, today, on the anniversary of her death, I wasn’t looking for her, but she was there. Today in my much-anticipated first tennis match since my mastectomy, my opponents’ names were Barbara and Ann. Guess what my mom’s name was? Yep, you got it — Barbara Ann.

Amy’s take

Posted: October 10, 2011 | Author: | Filed under: breast cancer | Tags: , , , | 7 Comments

Hi,

It’s Amy H this time.  Guest Blogger, yet again.

Now before you get all worried that something has struck Nancy down or she’s in a morphine haze, puking or both as is the usual case when I blog for her, let me tell you that she is doing just fine…thankyouverymuch!

I have the distinct and unique pleasure of accompanying Nancy on her visits to the famous (or infamous?) Dr. S.  Just very recently, one of “our” visits happened.  Nancy & I connected the day before just to handle logistics.  Here’s the texts so you know how we figure stuff out:

Me on the day before:  “S at 2right?  Lunch?”

Her: “Yes!!  What works for you?”

Me: “Amy p wants to do lunch. you want to pick me up at 1245 and go get that good salad at the brew house?”

Her: “Perfect. Amy P meeting us there?”

Me: “I’ll tell her to”

That’s the extent of our conversation until she rolled in at 12:45 to pick me up…..in the Fiat…just sayin’….but with no top down….I should have picked up on the mood….

Hey, how are you??

“HORRIBLE!!!!” and then Nancy launches into a tirade that you won’t believe about her morning.  I won’t go into details, but let’s just say that things didn’t work out the way they played out in Nancy’s head for that morning, and not because she had unrealistic expectations. THEN she gets a text meant to alert her to some bad business. It was a nudge of sorts, to ask “have you checked this out?”…. again, not going into details except to say that there was a certain “liberty” taken which shouldn’t have been taken….and it affected Nancy….  Let me add that it’s just one of those “times” for Nancy.  And I don’t mean “time of the month,” just one of those times where there seems to be no one who understands the “journey” that Nancy has been on.  She feels alone.  So, the little, everyday, bad times are just the tip of the iceberg.  And then her frustrations with the cancer “journey” make themselves known through the everyday occurrences of her life.  She does such a great job holding things together and then some everyday, seemingly miniscule inconvenience is like the prick of a pin on a balloon.  Just so you know, it’s not an overreaction, mind you, because each of these events is definitely cause for frustration, it’s just that these frustrations allow her the liberty to vent when she typically holds it together.  Does that make sense?

So, we meet Amy P. at lunch.  Anything to drink?

Nancy, “I’ll have a beer.”

Well, alrighty then, twist my arm, I wouldn’t want you to drink a beer all by your lonesome at lunch time.

Hey, we’re sort of in a hurry so we are going to order, too.

Nancy says, “I’m not hungry, I’m just going to go with my beer.”

Amy & I echo, “What? We could have cancelled lunch if you  had already eaten….”

Nancy emphatically replies, “NO!! I need this but I’m just not hungry!”  We had a great girls’ lunch — talking about things, some everyday, some not so everyday.  Most people would look at our easy banter from afar and not realize that at times we were discussing surgery, doctors, treatments at other times carpool, dinner prep AND Nancy’s horrible morning.

We say adios to Amy P. then we head over to see good ole Dr. S!  We are greeted, as usual by Marcy & Brenda, Dr. S’s employees who have become our friends over the past year or so.  Brenda is ready for us to come back to the exam room and calls “Mrs. Hicks?” with a casual smile and ushers us out of the waiting area.  Brenda only uses formalities when other patients are in the waiting room.

Nancy always scoffs at this address when Brenda does that saying, “Puh lease, Brenda, really? It’s Nancy!”

I point out, “Nancy, you know she only does that when there are other patients waiting. Brenda needs to keep up the professional appearances!” (As an aside to the Dr. S. camp blog readers, Brenda is always professional, as is Marcy.  It’s just nice knowing that there’s a familiarity that allows them to give Nancy the comfort of addressing her by her first name.)

Brenda hands Nancy the not-so-customary white paper gown.  What happened to the fancy blue paper gowns?  Things are slightly amiss.  Brenda turns to leave with a chuckle and a twinkle in her eye, knowing Nancy well and her need for the familiar in this still unfamiliar medical world.

Marcy walks in, really to say, “Hi” but with Nancy’s thick file in her arms as the excuse to peek in. “Hey, how are you?” We all exchange pleasantries that seem simple on appearance but truly are fraught with more meaning.  We’ve shared more than the burden of Nancy’s “cancer journey,” and the four of us relish these stolen moments to catch up on each other’s lives outside of Dr. S’s presence and all under pretext of the “patient’s visit.”  I write this so you know how most of the office visits to Nancy’s caregivers go.  They become her friends.  They are the fabric of her life now, too.  Not just mere staff.  She’s concerned about them, bakes cookies for them, inquires about their families, knows their birthdays.

In strides the good Dr. S.  “Hi, Nancy!  How are you?” he asks with a big smile. This is the 4th visit in a row that it is apparent he is in a VERY good mood!  Nancy has barely had time to let us get her into the paper gown–opening to the front.  Marcy quick steps back to the front desk and Brenda steps out of the way in the exam room. Good, he’s on time and we won’t be late for carpool.  He knows how much she hates to wait, and I certainly am glad we didn’t have to resort to slipping a note under the other exam-room door to tell him to hurry up, as we have been known to do.

Nancy replies to his greeting, “I am having a TERRIBLE, HORRIBLE, NO GOOD, VERY BAD DAY.”  (She really didn’t say that but he got the point.)

“Why, Naancee?  Why are you having a bad day?” (sorry, not sure how to put his accent in there.)

I intercept this one, “Well, such and such happened and then something else.”  I actually used the actual incidences.

Then Nancy interjected, “About that something else……” as she discussed in more detail the latest angst of the day.  It was a bad day, mind you.

Dr. S slipped into exam mode, eyeing Nancy’s reconstructed body with a critical gaze.  I am amazed at how Nancy’s body continues to heal.  It’s been 2 weeks since I’ve last seen her in all her glory and the “17 inch scar–and I’ve measured it!” looks like the crease that your underwear would make on your tummy if it was too tight.  Really amazing.

Dr. S. steps back, looks at this, palpates that, getting a figure on how he’s going to finish the masterpiece.  He mumbles to himself and has me hold a hand mirror so Nancy can peer at his intended adjustments. She didn’t even want to look, but we made her.

As an aside, he mentions that he has had “two messages from us.  One from you.” Indicating me. “And one from her.”Indicating Nancy.

“When did I message you?”

“You know, you were going to meet me in Denver!”

“Huh?”  Come to find out our good doctor has misinterpreted his messages.  Nancy and I are planning to attend one of his local conferences on the fat transfer process and he thought I was meeting him at his recent Denver conference.  Yeah, right.  I’m a stay at home mom.  I don’t have the time or the budget to be hopping around attending the fat transfer conferences of fancy schmancy plastic surgeons outside of the Houston area!  And besides, I’d only texted him that one time when he was in New Orleans and I had a restaurant recommendation for him–which he took my advice on, I might add….

He quickly changes gears, “So, Nancy, you know…about this bad day….”  He then goes in, and with the gentleness of a long-time friend, conveys to Nancy what I’ve long known are his feelings. “You know, I could not have done the work I’ve done, if you were the type of patient who didn’t do her work.  I have been able to stand by you KNOWING that you were going to do your homework and do what I asked you to when it comes down to what matters.  You have allowed me to do my best. You know, Nancy, this day is just a bad spot, and that situation is just a situation.  If you allow it to control you then you have ultimately lost control and that’s not the Nancy I know.”  He went on to wax philosophical about a situation with a former patient and also his insight on the infection that Nancy had.  But ultimately it was the highest compliment that he could have ever paid her.  I was struck by his gentleness, sincerity, kindness and, dare I say it? Love.

In the midst of this conversation he had been commenting on her skin and I agreed with his assessment.  Dr. S doesn’t think he’s going to have to cut  and stitch an area on her revision because Nancy’s skin is so resilient.  He will just make some adjustments internally and that’s it, no cuts necessary.  Her skin will adapt.  Nancy will adapt.

I look back and Nancy’s eyes give her feelings away.  All the talk about how good the newly constructed chest looks was too much. It was the tipping point in this already-terrible day. ‘YOUJUSTDONTUNDERSTAND!!!!’ these eyes are shouting, and nearly overflowing with the tears that are threatening. “That’s easy for you to say with you both sitting over there without all of THIS going on!”  indicating her body. She actually verbalizes this. It’s a statement and a challenge. She adds that if the shoe were on the other foot, and she was looking at Dr S’s masterpiece-quality work on someone else’s body — anybody’s body but hers — she too would say it looks great. But it’s her body, not someone else’s. And no matter how good the masterpiece is, it’s never going to be the same. She has had ENOUGH of this day!  I know enough to steer Dr. S’s attention from her so she can blink her tears away without him seeing her angst.

He finishes the conversation with another compliment about her resilience and strength and then tops it off with a decision on a final revision date.  Oh Happy Day!  A FINAL revision date!  Did he say final??

We wrap up the visit with some yada yada yada and signatures over surgery paperwork, scheduling our next visit—Marcy kindly penciling us in so we can make it out again next time for carpool.  Marcy confiding to us in a whisper after we inquired about her. Nancy making some smarty pants remark about how she’ll cry in front of Dr. S over her dead body.  I called her on that one, “Oh yeah?  You nearly did it today!”

“Could you tell?” she quickly inquired with concern.

“I could….but not him.”

On the way home I could not even convey to Nancy how she is so right.  We aren’t in her place.  We truly DON’T understand–even those of you on your own “cancer journey” can’t really understand her unique “journey.” I hate that she feels so alone at times, probably most of the time. But we are here.  Trevor, her kids, you, me, all of us.  Even Dr. S.  And we all love her.

Slacker mom

Posted: August 23, 2011 | Author: | Filed under: breast cancer, cancer fatigue, kids | Tags: , , , , , , , , | 7 Comments

That’s me. I admit it.

Yesterday was the first day of school, yet did I take one photo of my kids before they descended into the joys of another school year? Nope. Not even with my iPhone camera. How lazy & shiftless is that?

It occurred to me at some point last night that this will be the first year on record without a back-to-school photo, and I suppose I could have hauled Macy out of bed and pried Payton away from ESPN long enough to recreate a photo. But it would have been dark on the front step, where we always take the photo, and Macy would have had to change out of her jammies and back into her school clothes, which were no doubt in a heap on her bedroom floor. I had to admit defeat and accept that it wasn’t going to happen this year. A second-day-of-school photo seems too lame to contemplate, so this will be the year with no back-to-school photo. Macy’s entre into 4th grade and Payton’s into 7th will go unchronicled for time immemorial.

And yet, I think we will survive.

I’ll throw in a classic back-to-school photo, from Macy’s kindergarten and Payton’s 3rd grade year. That’ll do, right?

Chalk it up to cancer fatigue, or to pre-surgery jitters, or to me being a slacker mom. Either one. The reason isn’t all that important, really. The kids don’t really care if we have a photo, and I’m pretty much over it as well. I will state for the record, however, that Payton did indeed wear a Red Sox shirt for the first day of school, as has been his tradition since kindergarten. Some things never change. 

If you thought I was done with my slacker mom antics and were ready to forgive me, hang on. True, it’s been a rough ride. It’s been a long year, full of medical drama and pain & suffering. I feel perfectly comfortable saying I deserve a free pass from juggling all the balls, getting everything right, and catering to everyone’s individual  needs (ok, maybe that last one is going a bit far; I’m not much of a caterer).

However, life goes on and I’ve yet to find the slot into which I insert my free pass. I’m looking for something like the coupon slot at the grocery store self-checkout, but I haven’t found it. Also curiously absent is the “make it so” button — push the button and make it so, whatever “it” happens to be. In this case, it would be the back-to-school photo. I would push the “make it so button” and a photo would fall out of the sky, into my cupped hands. If only.

I certainly needed the “make it so” button last night, when Macy’s loose tooth came out just as she was getting into bed. She has been wiggling it for days, and it was hanging by a thread, or a root, or whatever loose teeth use to hang on. She emerged from her bedroom clutching a slightly bloody molar, grinning hugely and aquiver with anticipation about the upcoming visit from the Tooth Fairy.

Uh oh.

Slacker mom was not prepared for this. See, Macy and the Tooth Fairy have a “special bond” as she described through her tears this morning. The Tooth Fairy doesn’t just leave a few bucks or some loose change, like she does for most kids. Her Royal Dental Highness knows that Macy isn’t at all concerned with or motivated by money. She likes stuff. She’s funny and quirky and a bit outside of the box. And the Tooth Fairy is usually well-stocked. Lip gloss, a stuffed animal, a stationery set…things like that rock Macy’s world. The Tooth Fairy usually picks up such items throughout the year, as she’s running her errands and comes across something that she knows Macy would like. But the Tooth Fairy was ill-prepared this time. Even though she knew that tooth was loose, the light didn’t come on and make her think, hmmmm, I better make sure I have a nice prize for Macy when that tooth comes out.

So the Tooth Fairy was forced to resort to the lowest common denominator, and she left a $5 bill. Macy was not amused. See, she had written a note to the Tooth Fairy, which she always does, and asked for a unicorn Domo. I imagine the Tooth Fairy said WTF?? I know I did. I’m fairly certain that a unicorn Domo does not exist. Or it does, but only in Macy’s imagination. I guess it would be a cross-breed between a unicorn and Domo. Interesting. But not readily available, and certainly not at 9:30 at night.  

 

See my dilemma? I had no problem finding images of these guys on googleimages. I even found a t-shirt of Domo riding a unicorn, which I was all set to order pronto but it’s sold out online. Of course it is. Who wouldn’t want a t-shirt like this? 

If I find one for Macy, I may have to get one for me too.

I can see why the Tooth Fairy flubbed this one, big time. Some requests are too tricky and unique, even for the TF.

Macy wrote another note, which she expects the Tooth Fairy will collect tonight as she makes her rounds. The “special bond” between Macy and the Tooth Fairy is splintered, but not beyond repair. 

 

Abx, redux

Posted: August 18, 2011 | Author: | Filed under: breast cancer | Tags: , , , | 3 Comments

Antibiotics. The mere sight of that word makes my skin crawl and my stomach clench, but I have to be a big girl and take these damned drugs. Again. It’s for a short time this time, which is good, and for which I should be grateful.

Just like I should be grateful that I have enough sense to suggest a prophylactic antibiotic with yet another surgery on the horizon.

I should be grateful that I have comprehensive health insurance and can get 2 prescriptions filled for less than $10.

I should be grateful that even though my Walgreens around the corner had a fire and is closed for a month, there’s another store a few miles away that had my prescriptions ready.

I should be grateful that I have the means to also buy the $50 worth of probiotics I’ll need to keep my intestinal tract from revolting against the onslaught of preventative drugs.

I should be grateful that I have an unlimited supply of Greek yogurt to help the probiotics battle the imbalance of bacteria in my gut.

I should be grateful that I have this forum in which to bitch, moan, and complain about having to go on these damned drugs yet again.

I should be grateful that my cancer wasn’t worse, was caught early, and is manageable.

I should be grateful that although I was one of the unlucky ones to get a post-mastectomy infection that rocked my world and wrecked my summer, I got better. Slowly (veeeeery slowly) and surely, I got better. Mountains were moved, heavens and earth were too, but I got better. Just when I thought it was never going to happen, I got better.

I’ve never been a big fan of all the “shoulds” in our life. I tend to favor a more laissez-faire attitude of do what you want to do, as long as you fulfill obligations and inflict no harm. I’ve also got a bit of a stubborn streak, so as soon as I hear that I “should” do something, my first instinct is to turn around and do the exact opposite. Charming, I know. Seatbelts are the prime example. It’s a state law in Texas — “click it or ticket” — for drivers and front-seat passengers to wear seatbelts. If you’re busted unbuckled, you’ll be looking at a hefty $200 fine. I know full good and well the statistics on seatbelt use and crash fatalities, and of course my kids are buckled every single time we’re in a vehicle. Yes, I know that Princess Diana might well have survived her fatal car crash if she’d been buckled. Same goes for my sweet Uncle Wilford. But I don’t like to wear my seatbelt, because the State of Texas tells me to. My kids usually bust me before a cop has the chance to. They’ll notice I’m unbuckled and fuss at me, so I comply. But I don’t like it. 

Sometimes the “shoulds” get the best of me.

 

I’m trying really hard…

Posted: August 17, 2011 | Author: | Filed under: breast cancer, cancer fatigue, drugs, infection | Tags: , , , , | 20 Comments

I’m trying really hard not to be discouraged by the latest bevy of bad news. Picture me squeezing my eyes shut as tight as they will go, turning a bit red in the face, and willing it to happen. Don’t. Get. Discouraged. Having my surgery postponed and being smacked in the face with the idea of another post-surgery infection is not my idea of fun. Being told we need to keep the port that I’ve been so looking forward to having removed was equally not fun. I’d actually begun counting the days until saying adios to the port. It’s served me well, but I’m so so so ready for it to be gone. I could almost imagine sleeping comfortably on my left side again, with no kink in the line that’s sewn into my jugular vein. I could picture myself in a sundress, sans the alien-looking bump with prongs under my skin. But alas, it’s not to be. Once again, the hits keep coming, and I have to suck it up and deal.

I’m trying really hard. So hard that I just wrote a beautiful post, if I do say so myself, about the effort. The words were flowing and I was thinking, “This is going to be good.” Then promptly lost it. All of it. Instead of “save” I hit “cancel.” And with one keystroke, it’s gone. I will attempt to recreate, but already know it won’t be as good.

I’m trying really hard to remember that while yes, being diagnosed with cancer–at a young-ish age no less–is bad, plenty of women have it worse than me. There are lots of rarer, more-aggressive forms of breast cancer than mine, and the battles are many. While my recurrence odds are low, the mere fact that I have odds reminds me in a terrifyingly real way that there’s always a chance that it will come back. As another fellow cancer chick so eloquently put it: “It’s losing your innocence all at once, rather than in bits and pieces over a lifetime.” Being diagnosed with cancer at a young-ish age is bad enough; fearing recurrence is even worse. Then you factor in all the other junk that comes with it, and before long it’s like inviting one person to a party and having them bring a village of savages with them. They drink all the good booze, hork down the delicate hors d’oeuvres, manipulate the conversation, interrupt with Buddy-the-Elf-esque burps, wipe their dirty mitts on the pretty towels in the guest bathroom, spill red wine on the beige carpet, and change the tinkling background music to heavy-metal hair bands. The cancer crew is most unwelcome. And yet they overstay their welcome in myriad ways.

I’m trying really hard to not freak out as the possibility of infection scares the tar out of me. There’s a kindly gatekeeper in my brain that shields me from the harsh memories of the battle royale that occurred last summer between my war-torn, ravaged body and mycobaterium fortuitum. While of course I remember being there and going through that, it’s as if I’m watching a movie of myself enduring that hell. It’s a gauzy, soft light, much like the lens filmmakers use to shoot a scene with an aging star. The gatekeeper that usually protects me from windexing the lens to see it unfold clearly, in all its replayed gore, is off duty. What I want to do it pack up all those horrible memories of the events last summer and put them in a box and leave them on the side of a deserted highway. Then I want to put the pedal to the metal, burn rubber, and beat feet away from them, without even once glancing in the rearview mirror. I want to find myself on a pastoral country road, with tall, leafy trees and big puffy clouds–somewhere far, far away from any hint of cancer or infection.

I’m trying really hard to be calm and not freak out about the possibility of infection. Of course I know that anytime one goes under the knife, the chance of infection is there. But rather than a distant “maybe,” infection is a real thing for me, and I have a visceral reaction to the idea of going through that again. And while the preventative antibiotics are just that — preventative — I find myself with real fear instead of comfort. The prophylactic effect should make me feel better, but instead I feel worse. There is a very fragile peace that was brokered between my body and the bacterium, and peace without the threat of war is meaningless.

I’m trying really hard to not gag on the antibiotics.  I dutifully swallow the two pills that are my front-line defense against the wily bacterium that may want to  set up shop again. Those bacterium were evicted after their long, comfy stay in my concave chest wall, and they may well want to reestablish their presence. So I swallow the pills, knowing full well that soon, very soon, I will feel like utter hell. The all-day nausea, the roiling queasiness, the lost tastebuds, and the sore throat that were my constant companions for 267 days are making a return visit. Back by not-at-all-popular demand is the diligence required in spacing the drugs 12 hours apart, and the taking them on a stomach empty enough to allow them to do their thing but not so empty as to make me puke. Instead of feeling comforted by the preventative drugs, I’m scared.

I’m trying really hard to think happy thoughts. Right now I’m remembering a highlight of our recent vacation, in which we were all in the ocean battling giant waves as the tide turned. These were seriously bitchin’ waves, a good 8-feet tall, and we were in the thick of them. I was ecstatic that the water was warm enough for me, a Gulf Coast chicken; that the waves were so accommodating for body surfing and frolicking; and most importantly that I was there to experience it. As I came up from being tumbled ass-over-tea-kettle by a giant wave, Macy overheard me say that that wave just bitch-slapped me. She misheard me, though, and thought I said that the wave had “fish-slapped” me, and she wanted to know if it was a flounder, because they tend to be especially evil. I’m gonna smile at the idea of being fish-slapped, even though I feel like crying instead.

I’m trying really hard to focus on how far I’ve come instead of how many setbacks I’ve had. The race is long, yet I’ve continued to put one foot in front of the other. Keep on keepin’ on. Several people have tried to help along the way by telling me that God only gives us what we can handle, and that he must think I can handle a lot. Thanks, but zip it. I don’t believe it, and I’m not comforted by that. While there are a host of helpers along the way, there’s only one person involved in this battle, and that’s me. No one is doling out the hard knocks in an insane game of “let’s see if this will make her crack.” It’s random, it’s uncontrollable, and it’s life. It’s life, and my job is to keep on truckin.

I’m trying hard to remember that this is temporary. As my wise survivor sister Jenny reminded me countless times during diagnosis, surgery, and treatment, this is temporary. This mess won’t be at the center of my life forever, as difficult as that is to imagine now. The ennui I feel today won’t always prevail. It’s easy to get caught up in the quagmire of unpleasant things that have come my way. I can see just how easy it would be to slip into the loving arms of pills, booze, rage, and self-pity. Name a vice, any vice; I’ll take it. It would be so, so easy to say I’m done, I’m out. Let the vultures pick my carcass clean because I give up.

I’m trying hard to walk on the sunny side of the street, as my sweet mama always advised. There are some dark and ominous alleyways around me, but I will seek out the sun and pound the pavement until all this madness is over. Those who have been on this “journey” before me assure me that one day it will all be a distant memory. I know this is true, yet it seems impossibly far away today. One day I will look back at all this and think, “Man, what a shit-storm that was.”

One of the many hard truths

Posted: August 12, 2011 | Author: | Filed under: breast cancer | Tags: , , , | 9 Comments

It’s been a while since I’ve seen my dear friend and most beloved surgeon. He’s been busy this summer traveling and I’ve been busy avoiding his office. Not because I don’t love him and his staff–I do–but because the longer the gap in between appointments, the more I can pretend to be normal post-cancer.

Or so I thought.

I’m learning the hard way that there is no “normal” post-cancer. Most people (myself included) have the impression that once you’re diagnosed,  have surgery, and complete treatment, you’re done with cancer. But you’re never done. This is one of the many hard truths about cancer: you’re never done.

Three-fourths of the way through my 2-week vacation, my thoughts more regularly return to cancer. And surgery. When I first arrived at Salisbury Beach, I thought, FINALLY! I’m here, I’m on vacation and can take a much-needed, eagerly anticipated, and well-deserved break from cancer. I’d thought of little else in the days leading up to my vaca and was ready, oh so ready to get on the plane and be there. 

It’s been great — good weather, huge waves, plenty of cocktails & lobster, and the company of friends who’ve become family. I missed all this last year because of that damned post-mastectomy infection, and I was determined to make up for lost time this year. And I have. Yet my brain isn’t entirely on vacation, and as I’m soaking up the sun and relishing the cool east wind, my brain says “Whatach think about your upcoming revision surgery, missy?”

I don’t want to think about it. I’m on vacation. I should be thinking about what to drink next, or whether to get the 1-pound or 1.5-pound lobster. Yet I do think about it. The brain prevails, and my thoughts turn from all things beachy to thoughts of yet another surgery. While the upcoming surgery is a good one in the realm of surgeries, it still means arriving at the crack of dawn, being assaulted with the dreaded hospital smell, enduring endless digging to find a non-wiggly vein for the IV, undergoing anesthesia, coming out of anesthesia, and starting yet another recovery process.

A couple of months ago when I scheduled the revision, one of my wise friends said don’t you think you might want to do this after the kids go back to school? I said hell to the no, I want to get this done ASAP and get on with my life; I don’t want to wait even one more week because I want to be done. But now I know that I’ll never be done.

Yes, I will get to a point in which I no longer have surgeries and revisions and procedures on the horizon, but I’ll never be done with cancer.

Thoughts of the “big C” will infiltrate my brain here, there, and everywhere. On vacation. In the grocery store. On the tennis court. At the baseball field. In my bed, while I should be sleeping but instead am thinking. About cancer. 

I woke up the other night–on vacation, mind you, with the windows open to the cool breeze and the sound of the crashing waves–thinking about cancer. Even when I’m sleeping, those thoughts are in my head. As my revision surgery approaches, I find myself with the same apprehensions I’ve had before every surgery I’ve had since my diagnosis. I may be nearing the finish line in terms of procedures required, but my thoughts refuse to budge. Instead of getting closer to being done, I realize there’s no such thing.

The new bucket list

Posted: August 8, 2011 | Author: | Filed under: breast cancer | Tags: , , , , , , , | 3 Comments

“for whatever we lose (like a you or a me),

it’s always our self we find in the sea.” — ee cummings

I love ee cummings. While I’m usually quite the stickler for adherence to the rules of grammar, spelling, and punctuation, I’ve always loved that cummings eschewed the rules and let the words and his thoughts flow unbridled.

He’s quite right about finding our selves at the sea. Not finding ourselves, but our selves. See the difference? Actually, it’s quite hard to see; it’s more something you feel.

Losing your self in the morass that is a cancer battle is fraught with peril. Having a potentially fatal disease changes you. It messes with your mind, shakes your sense of security, and makes you question the future. Having a potentially fatal disease at a young-ish age with young kids to raise really changes you.

My blogfriend and fellow cancerchick Michelle writes about this change. She writes of fear, of wishing for a return to the carefree, pre-cancer life. She mentions fear. The fear of recurrence. The fear of not being here to witness the millions of little things, seemingly insignificant, yet the essence of what creates our life.

See, for a cancer patient, the fear is always there. It resides deep in the “self” that we wish to find in the sea. Despite best efforts to be brave, move forward, and face the unpleasantness that is life with cancer, the fear is there. Sometimes just below the surface, like a homemade marinara sauce bubbling fragrantly and yummy on the stove. Sometimes right on the surface, as evident and painful as a sunburn the first day on the beach. Fear becomes the new normal. Michelle writes of the “new” normal:

“My new normal, I suppose [is] living each moment with equal parts gratitude, for experiencing it and really soaking it in now, and fear, that it may be over too soon.”

Hear, hear. Well said, Michelle.

Another blogfriend, Lauren, writes similarly.  Because she is 5 years out from diagnosis while Michelle and I are more recent arrivals to cancerland, Lauren writes not of the ever-present fear but of the urgency to experience all the things we fear we might not be here to experience. The bucket list takes on a whole new priority post-cancer.

Says Lauren:

“It dawned on me that cancer survivors also have a different bucket list. One that isn’t the places we want to go, or what we want to buy or learn to do, but one comprised of the things we want to live long enough to experience and see come to pass.”

Yes, that’s true. While there are places I want to see and plenty of things I want to do, I know now, post-cancer, that there’s a difference. Everything is different post-cancer. I’m still looking for that new normal, and my bucket list changes somewhat, but one thing remains constant: while I’m still scared, there’s still plenty that I want to see come to pass.

For now, I’m enjoying the ocean breezes, the sound of the surf, and the sunset over the water, knowing that with each new day, there’s plenty to see. 

Blogging beach-side

Posted: August 2, 2011 | Author: | Filed under: breast cancer | Tags: , , | 3 Comments

My toes are in the sand as I write this. The waves are crashing as the tide comes in; seagulls are squawking as they scrounge for breakfast. A few fisherman have set up long-cast poles, hoping the early bird gets the worm. I mean fish.

I kept flight attendants Scott & Devin hopping on the way here. They did a very good job refreshing my beverage and they served me a lovely salad topped with grilled shrimp with fresh fruit on the side. The fresh-baked white-chocolate-macadamia-nut cookie went straight back to my kids who were slumming in coach. My new flight attendant friends were bummed that they’d run out of cookies before realizing my kids were back there. I watched Mardy Fish trump Ryan Harrison on the tennis channel in flight, started a new book, and accepted cocktails from the dynamic duo. There was a slight miscommunication though, and Scott offered me one more as we started our descent, not knowing that Devin had already locked up the bar. I teased them enough that they sent me off the plane with a bottle of wine, wrapped festively in a cloth napkin. We drank it on the train and toasted my new friends.

Yesterday was one of the best beach days ever. Today looks like a repeat performance. I’ve had a cup of coffee and made a quick run across the state line to the nearest store to procure a few supplies we didn’t pack because we carried our luggage on. We had a quick turn-around between landing at Logan and catching the train to Newburyport. Despite my sage warnings yesterday, my kids got sunburned–Macy on her arms, Payton on his legs. My little darlings are accustomed to the aerosol sunblock, but were left to their own devices with the old-fashioned, rub-on kind. There’s nothing fun about getting scorched on the first day at the beach.

Our lovely hostess treated us with homemade lobster pie upon our arrival, after bubbly on the beach. Both were as decadent as they sound. Acutely aware of all that i missed last year, I’m savoring every crumb, every drop. Soaking up the sun, relishing the sound of the ocean and the feel of the cool breeze. Cancer and its myriad troubles are a long way away.

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