One year ago today

Y’all know I’m a milestone-observing kind of girl. I’ve written about my cancer-versary, about a revelation, about week-old recollections after The Big Dig, aka my reconstruction, and returning to the tennis court after a long absence full of longing.

I’ve written about the anniversary of my sweet mama leaving this earth. That was early on in my blogging, and I hadn’t mastered the art of inserting photos. The photos of her are woefully displayed, and in my free time (!) I need to go back and fix them. She deserves better.

I’ve also observed the end of the worst year of my life. “Don’t let the door hit ya” was my message to 2010 as it went out like a lion. A mean, underfed, on-the-hunt-for-victims lion. Almost halfway through 2011 and I’m happy to say it’s turning out to be a much better year. Course, we didn’t have far to go to make it better than its predecessor.

Back to the current milestone. One year ago today, I said bye-bye to my breasts and was the lucky recipient of a flat–but cancer-free–chest. This was me, this time last year. On this very day (although it wasn’t a Friday, it was May 13th. Having a bilateral mastectomy on Friday the 13th would be cruel).

Trevor snapped this photo of me waiting for my surgery, in the holding pen before moving to a pre-op room. My brain was swirling with lots of thoughts, too many thoughts, and I was likely firing off a quick email to our BFF Ed with some last-minute kid-wrangling instructions. Notice the pink notebook in my bag: my cancer book, full of pathology reports, doctors’  notes, research, and bills. Bills, bills, and more bills. I think the current estimate of the cost of my last year medically is in the range of $260,000. And we’re not done spending yet.

One year ago today, I wish we’d thought to take a close-up shot of my chest instead of the deep wrinkle snaking across my forehead. My chest would never be the same, and would become a major battleground–and that was after the mastectomy. If I’d seen that pic before going under, I would have asked Dr Dempsey, breast surgeon extraordinnaire, to give me some Botox while she was in there. Yikes.

I didn’t know what to expect from the surgery, other than the basics. With subsequent surgeries, I’ve learned that actual procedures are available for viewing on youtube and I’ve watched a few. Gross. But amazing.

All I knew, really, was that I had breast cancer and I wanted it gone. I could have had a lumpectomy, but chose the slash-and-burn option instead. I’m not a half-measure kind of girl, and the idea of just taking a part of the infected breast instead of the whole thing wasn’t anything I ever seriously entertained. Slash-and-burn meant taking both breasts, even though the cancer was only detected in the right one. Only. Ha! Good thing I lost the pair, because the post-mastectomy pathology showed the left one had some problems, too. If you can call an area 5 cm in diameter full of cancerous junk a problem. I can, and I did. Little did I know then, one year ago today, that pretty much anything that could go wrong with my post-surgery self would go wrong. As my nurse practitioner friend Laura says, “Your case certainly has not been textbook.” Truer words were never spoken, but we didn’t know that one year ago today.

Because there were only 3 weeks between my diagnosis and the mastectomy, and because most of that time was consumed with tests, tests, and more tests, there wasn’t a lot of time for freaking out or being scared or crying about my fate. Not that I would have done any of those things anyway. There was a problem, and we were going to fix it. ‘Nuff said. I had a great team–breast surgeon, plastic surgeon, and oncologist– and was in a nationally ranked and highly acclaimed hospital. Course, I’d end up adding a kick-ass infectious disease team, home-health care nurse, a beloved lymphedema specialist, and wound specialists to my team before it was all said & done.

Dr Grimes, my hero

Tammy Sweed, I adore you!

The week before surgery, Payton turned 11

and Macy & I pampered ourselves with a Chinese foot massage.

I squeezed in as much time as I could with my girls

I didn’t know it would be a while before I did anything like this with my favorite girl.

Going into surgery one year ago today, I had no idea that I’d end up spending nearly a month more in the hospital and undergo 3 more surgeries; minor surgeries compared with the mastectomy, and of course reconstruction was way off in the distance, with even more days in the hospital. I had no idea how much I’d miss my kids while hospitalized

and my dogs (and their friends).

I had no idea how many times I’d need the special parking place.

I had no idea how much infinite kindness my friends would bestow upon me. We were on the receiving end of many, many meals delivered to our house, a kindness for which I’m so grateful. The rides to & from my  kids’ activities helped more than I could ever guess. The sleepovers and outings that my mommy friends provided kept my kids’ life normal when everything else around them was off-the-charts abnormal.

My cousin Teri’s hubby Tom made me more than one coconut cream pie. I ate a lot of this

but not nearly enough of this

Keith’s crab towers were chock-full of healing properties.

As was this:

Yes, lots of champagne eased the way from being an average, suburban at-home mom to becoming a statistic. From regular woman to cancer vixen. From got-it-together overachiever to at the beast’s mercy. And my bubbly companion continues to ease the way, from cancer victim to cancer survivor. Cheers to that.

A week after surgery, I began to feel a bit more human and was blown away by my little girl wearing a pink ribbon on her shirt–all her idea, BTW–to school every day.  

I was not enjoying the amount of time spent doing this:

although Pedey enjoyed every lazy minute of my recouperating.

Seeing me in jammies all the time gave Macy an idea: she could raid my jammie drawer and wear them herself. 

I’m not sure I ever got that pair back from her.

I certainly have learned a lot over the last year. Things I never knew I would have to learn, like the difference between invasive ductal carcinoma and in situ carcinomas. Like how a tumor is graded to determine the stage of the cancer. Like cure rate statistics and recurrence stats. Like how fine a line there is between the science of medicine and the art of medicine. Like how fighting a wily infection could be even worse than fighting cancer.

The crash course in all things infection-related was a big education. A very big, most unwanted education. My biggest lesson in this arena is how many unknowns exist. I wanted to know when, where, how, and why I got this infection. No one knows for sure. I wanted to know why it took so long to diagnose it, and why so many drugs have to be involved. I learned that my oncologist could have me all my drugs delivered to my doorstep via UPS. I learned to love vanocmycin and to depend on probiotics. I learned to eat breakfast as soon as I got up, hungry or not, because I needed to time the antibiotics right so they hit an empty stomach. I learned that morning sickness-style nausea doesn’t go away as the morning changes to afternoon and then to evening. I learned that there was nothing, not one single thing, I could put in my stomach to ease that awful nausea. I learned that washing those drugs down with alcohol doesn’t make me feel worse; that in fact it made me feel a whole lot better. I learned to develop a schedule and a rhythm to taking my antibiotics every 12 hours for 267 days. 

I learned that “We’re discontinuing the antibiotics” are the sweetest words I’ve heard in a long time. I’ve learned about the complete and utter relief of dumping my remaining oral abx out, because I don’t need them anymore.

That’s the tip of the iceburg, or what my friend Michele would call “a booger’s worth” of the practical things I’ve learned. The topical aspects of changing one’s status from normal person to cancer patient. Then there’s the other side of it.

There’s the stuff  I’ve learned in the last year about the unquantifiable side of a serious illness. The depth of inner strength required to get through something like this. The well of emotion that accompanies the clinical stuff. The patience and fortitude I didn’t know I had (although I’m still working on the patience part). The measure of gratitude toward the people who’ve helped along the way. The unbridled joy of making new friends in the midst of a shitty situation. The passion for writing, long dormant in the day-to-day of child-rearing, and the love of blogging. The understanding that my doctors are just regular people under those scrubs & white coats, and while they’re full of knowledge, there’s a whole ‘nother side of unknown things for which they make an educated guess and hope for the best. And, I have to admit, how much fun I’ve had getting to know these people in the white coats.

 

While being diagnosed with breast cancer at age 40 certainly does suck, I’m lucky that I made the decision one year ago to not let that diagnosis define me or impede me living my life. There certainly were times in which I was miserable from surgery and infection, and down in the dumps about my limited capabilities during recovery. There were also times over the last year in which I thought for a second I can’t take any more–not one drop more of bad luck, rotten news, and beastly complications. But those times didn’t last long and they did not prevail. Cancer did not prevail. Not over me. No way. Nuh uh. That’s perhaps the most important thing I learned over the last year.


I hate Mother’s Day

I wasn’t going to blog about this, because I don’t want to sound like a broken record about how much I miss my mom. That’s a worn-out, overplayed, scratchy, non-Top-40 hit, for sure. It’s a sad song about gut-wrenching loss and about life going on despite the hole in my heart. You know that one person you always want to invite to the party, because they can talk to anyone, they bring a light & an energy into the room, and they become the most fun person there, regardless of the guest list?And because they come early to help set up, bring food, and stay late to clean up? That was her.

So I wasn’t going to write about her this year on my most-dreaded holiday. But then I remembered that blogging isn’t exactly a customer-service driven business. At least my little blog isn’t. It’s neither a business nor does it have customers. It’s my blog and I can write what I want to. So there. If I want to bitch & moan about missing my mom and hating Mother’s Day, I can and by golly I will.

googleimages.com

For the first year since my mom died, I wasn’t dreading Mother’s Day as much as I usually do. Usually, I feel a terrible tug between wanting to savor my kids and their homemade, heartfelt gifts yet feeling more inclined toward wishing the day would just end already. I despise the advertising blitz that leads up to Mother’s Day and think genuinely unkind thoughts about the merchants that hawk their wares in an effort to extract the maximum dollar amount from adult children filled with guilt about not doing enough to honor Mom. I’m usually envious of my friends who have to juggle their mom’s wishes for the day with their own. Even thought my day can be whatever I want it to be with no juggling required, I never feel that excitement that comes from being treasured, being pampered. The day always, always, always ends in crushing disappointment.

googleimages.com

But this year, I had resolved to do better. I was going to be better. I read several blogs written by members of the pink-ribbon sisterhood who also lost their sweet mamas to cancer. My blog buddy Lauren’s Mother’s Day entry in particular spoke to me. Her blog has led the way and shed much light for me as she is four years ahead of me in the “cancer journey” and the happily-ever-after life of a survivor with no mom of her own and 2 kids to raise. Reading this first thing on Mother’s Day this year reaffirmed my goal (stupid as it was) to enjoy the day. This line especially made me want to make it a good day:

“I am so thankful that I had her for a mom, however short a time it was. For how she loved and nurtured me to the tips of my toes, and for whose warmth I still feel surround me, especially when it is dark and it seems everyone else is gone.”

Yes, I still feel my mama’s warmth surround me, especially during the really rough times. Thanks, Lauren, for the reality check; you know I needed that, girl.

My decision to make it a good day, despite the hole in my heart, was affirmed by the supremely wonderful and true friends I have who know it’s a shitty day for me that never fails to disappoint. No less than 11 friends texted me Sunday morning, some to say “have a great day, I love you” and some to say “I know this is a hard day and I’m thinking of you,” and a few to remind me how lucky I am to be here, after waging an uncertain battle against not 1 but 2 vicious beasts. And a couple tried to make me cry (which is not easy to do) by telling me that my mom is proud of me and is thanking God, in person, for my triumph over cancer and mycobacterium.

Another blogger friend, also named Nancy, wrote poignantly about spending Mother’s Day without Mother. Like me, she spent last Mother’s Day trying to pretend everything was normal while staring down an uncertain future filled with tests, scans, surgery, and pathology reports. She writes:

“Even now, she would know things to say to make me feel better. She would be calling to see how I am doing. She would feel my pain and understand my fears, even if she had not had breast cancer herself. My mother would have understood about the ache I sometimes felt deep within and about the terror of facing life without breasts, or hair, or worse. She would have understood what it felt like to be a woman living on the edge unable to stop thoughts about dying from simmering during the wee hours of the night. She would have understood why I cried sometimes without even knowing the reason for my tears. She would not have cared if I was irritable, blotchy-faced or just plain unpleasant to be around. She would not have thought such things were even odd. She would have loved me and understood because that’s what mothers do.”

Yes, indeed that is what mothers do.

Marie writes a super-informative blog called Journeying Beyond Breast Cancer. Her mum is still on this Earth, but suffering from dementia, so Marie understands how hard Mother’s Day is. Her beautifully written entryabout the painful topic resonated with me and reminded me that our mums don’t have to be gone to leave us feeling empty. Marie’s quoting of Persian poet Rumi made me smile: “Wake at dawn with a winged heart and give thanks for another day of loving.”

oliverose.com

I’m trying, Rumi, I’m really trying.

Another blog I love, “dear mom can you get letters in heaven?”  is written by a young woman who lost her mom to ovarian cancer. Her take on Mother’s Day is so sweet and so heartfelt that it’s almost painful to read, but her outlook save it from being too sad to bear. Like me, she usually hates every minute of Mother’s Day, but this year came to the realization that her mom is happy, and that sustains her.  Sami writes something that I feel so deeply, and I’m grateful to her for putting it into words. The weird dichotomy of feeling grateful to have had an awesome mom while still feeling so very, very sad that she’s gone:

“It’s just so bittersweet. I feel lucky to have known you, and I always will, but there’s that part of me that will just remain sad. I’m sad that I will never buy you another sappy Mother’s Day card or cheesy gift; I’m sad that I will slowly forget exactly how your voice sounded; I’m sad that you never got the chance to be one of those cool moms on Facebook, or own an iPhone, or watch the season finale of Survivor (and the new season too– you would love it!)”

I too fear that I will forget the sound of my mom’s voice. It’s easy to recall her “sick voice” and the way she sounded while being ravaged by uterine cancer, but I really have to work hard to remember her regular voice. And that’s a shame because she had a great, big laugh that made the world a better place, just by hearing it.  I love but also hate that Sami mourns her mom missing out on Facebook, an iPhone, and Survivor. I could make a long list of similar, everyday things that I hate having my mom miss out on.

One last blog round-up, and this one breaks my  heart into a million pieces. It’s the Carcinista, a blogger I just recently “met” and got to know via our blogs. She was smart and snarky and brutally honest about how she felt going through the ups & downs of ovarian cancer. All the things I aspire to be in my little blog, she was. And I say “was” because smart, snarky, honest Sarah died last week after deciding to stop her treatment.

carcinista.com

She chose quality time with her husband and 2 boys over the certainty of feeling awful and the uncertainty of whether treatment was working, and I admire her for that terribly difficult decision. Even toward the end, when she saw the writing on the wall, she didn’t lose her sense of humor, and she faced the most-unhappy ending with courage and her trademark mission to “wear something cute and make each day count.” She referred to Dana Farber as The Cancer Factory, and I remember laughing out loud at her recounting a terrible visit to TCF in which she was so sick she vomited up her blueberry yogurt, but said  “I’m pleased to notice that I’ve not only managed to keep fuchsia barf off floor and out of hair but also off pristine white tee-shirt. Rockstar.” RIP, Sarah. Your humor and balls-out approach to cancer will be greatly missed.

This year, I tried. I tried to not hate Mother’s Day. I tried to enjoy it, for my sake, my mom’s sake, my kids’ sake. We spent a nice day by the pool with lots of champagne and yummy food, in the presence of 2 of my dearest friends, 2 of my all-time favorite people. I had such high hopes, such great expectations. But in the end, I should have just given up and worn this t-shirt:

cafepress.com


An original piece

Y’all are in for a treat today. Sit down, grab a beverage, put your phone on vibrate for this, because you’ll want to read this uninterrupted. My friend David has created a marvelous original piece just for Underbelly readers. He’s enormously talented with the prose and the pen, and as if the story itself isn’t enough, the illustrations are fabulous. I think it’s terrific, and it’s a perfect recap of my cancer-versary, which I feel compelled to continue celebrating. I favor the total birthday week, so likewise I may have a cancer-versary festival for as many days as my liver can stand. IMHO, now is always the right time to pop open some bubbly (I like later, too).

Those of you who have followed my story over the last year, with all its ups & downs, will know of my special relationship with my plastic surgeon. He and I have really gotten to know each other well during my “cancer journey,” and while I tease him sometimes (and drive him crazy all of the time), I have enormous respect for him and his amazing craft. We have a closer-than-normal bond because of the post-op care I’ve needed, and he’s been there for me every step of the way: entertaining me, enlightening me, engaging me, but in the end, taking phenomenal care of me. I trust him with my body and with my life. His work is simply stunning, and I’ve seen firsthand how he can transform a cancer-ravaged, wrecked body into not just a vessel for our souls but also a work of art.

So, in honour of my favorite doctor, I give you…

The Wubbulous Dr. S

 “My name’s Dr., madam, or just Dr. S

And of all plastic surgeons, I’m strictly the best.

I see your mastectomy’s left you flat-chested,

Well, my reconstructions have never been bested!

If it’s hooters you want, then it’s hooters I’ve got.

I’ll shape up your shape till you’re hotter than hot.

You want to be buxom, then buxom you’ll be—

and you’ll be the envy of all that you see!

How can I do this?  I’ll try to explain,

But it may be too much for your non-Doctor’s brain.

For, once I unveil this special contraption,

You’ll be quite amazed—it’s a natural reaction.

Behold!  I give you the Balloon-Boob-U-Latron,

Which will stack up your rack to the stars and beyond!

And with this little dial on the side, I can choose

Whether you will get Double-D’s or…W’s.

So step right on up and I’ll rev up the engine.

By week after next, you’ll get LOTS of attention.”

“It sounds,” I replied, “Just too good to be true,

And besides, I don’t want DD or W.

I’m happy with simply a B or a C.”

“Nonsense.”  He retorted, “Just listen to me.

As I said, I’m a DOCTOR.  I’m SMARTER than you.

I’ve got major degrees coming out the wazoo.

You just sit back and whistle, while I do my stuff.

I’m starting the engine.  You’ve said quite enough.”

Then he started it up.  It whined and it cried

And he chose Double-J on that knob on the side.

And I sat there and whistled.  That’s all I could do.

But then two hours later he said, “We are through.

Behold!  They’re magnificent!”  Then I looked down.

“I don’t see a difference.”  I said with a frown.

“Of course not.”  He said, “For your eyes are untrained,

But I am a DOCTOR.  I’m quite largely-brained.

They’re just getting started.  You’ll see.  They will GROW.

Trust me.  I’m the best—Dr. S—and I KNOW.”

I went home, kissed my kids, then I laid down to rest,

And when I woke up, I saw shape in my chest.

Not much, I admit, but the doctor was right.

They were growing.  And kept growing all through the night.

I woke up next morning, completely in shock.

I couldn’t believe it and, quick, called the doc.

“Dr. S,” I said, “Now for the shocker of shockers.

Something,” I shouted, “is wrong with my knockers.

The one on the left’s growing stronger than strong,

But the one on the RIGHT is decidedly WRONG.”

“Hmmm.  You’d better come in,” Dr. S said.  “I’m fairly

Sure something has happened that happens quite rarely.”

When he saw me, he flinched.  I was very lopsided.

“You have an infection,” the doctor confided.

A mycobacterium.  That is my hunch,

And my LARGE doctor’s brain knows these things by the BUNCH.

I know just what to do.  There’s no need to debate it.

The one on the left…we’ll just have to deflate it.

And we have other options to give you new breasts,

But I am a DOCTOR, and doctors run TESTS.

I’ll get back to you shortly.  Just wait and you’ll see.

Meanwhile, I’ll send you to deflating room B.”

So my boob was deflated, and so was my mood,

And the next time I saw Dr. S, I was rude.

“Look here, Dr. S,” I said.  “I mean no trouble,

But I live inside of the SUGAR LAND Bubble.

I know you’re a DOCTOR, but I say, what of it?

You can take your Balloon-Boob-U-Latron and just shove it!”

“Tut, tut,” Dr. S said.  “I expected as much.

A Sugar Land patient needs a delicate touch.

I’ve run many tests on your bodice, you see,

And the answer’s so clear for a Doctor like me.

What you need is a TRAM FLAP procedure!  I know,

Because I am a DOCTOR, so on with the show!

Since you’re a non-Doctor, I’ll lend you a hand:

TRAM FLAP stands for ‘Tit Repositioning And

Moving Fat Like A Puzzle’, which quite simply means

That you’ll have to gain weight.  So, goodbye, skinny jeans!

You must grow a big belly to give me the fat

That I’ll move to your boobies, to make them un-flat.

So go forth and EAT!  Eat ice cream!  Drink shakes!

Gobble bon bons and beignets and beezlenut cakes!

Grow the fat for new hooters.  Get busy.  Get LARGE.

(The fat on your ass you can keep, at no charge.)

And because I’m a DOCTOR, I must prescribe PILLS!

Pills for THIS and for THAT and for medical bills.

The mycobacterium must go away,

So you must take these pills twenty-four hours a day.

AND because this procedure is tricky as treacle,

I’ll need an assistant.  Please, meet Dr. Spiegel.”

Then in walked a woman so lithe and so smart

That I almost felt jealousy deep in my heart.

So, now I had Drs. S1 and S2,

One doc for each boob.  What the sam hell to do?

And as soon as I met with S1 and S2,

It became quite apparent (as things often do)

That a struggle for power was starting to brew

About which doc was MY doc,

And who was the MAIN doc,

And who would I see when this process was through?

So for weeks I ate pastries, popped pills, and drank shakes

(And martinis and beers because that’s what it takes)

Till I had so much weight in my belly and butt

That I bore a resemblance to Jabba the Hutt.

At my next appointment, they pinched, poked, and prodded,

And at last both my doctors stepped back and they nodded.

“You’re simply ENORMOUS,” said Dr. S1.

“As big as a WHALE!  What good work you have done.”

Then Dr. S2 added, “Yes, I agree.

There’s plenty of fat here.  Just leave it to me!”

“Excuse ME?” shot S1, “But I won’t stand for that.

YOU can assist ME, while I move her fat,

For I am a DOCTOR…”

“Oh yeah?  So am I.”

And in the stunned silence, they stood.  Eye to eye.

Yes, they stood and they stared, never budging a whistle,

But I finally spoke up and I said, “Ugh!  For shizzle!

Yes, I KNOW you’re both doctors.  I KNOW you’re both wise

But it’s MY reconstruction, so shut up, you guys.

Dr. S1, you have cosmetic vision,

So, you’ll do the OUTSIDE stuff.  That’s MY decision.

Dr. S2, you’re as detailed as hell,

So you’ll move my fat, and blood vessels as well.”

Then they stared at me—stunned—like the strangest of fish,

And then Dr. S1 said, “If that’s what you wish,

I will finish the outside.  But YOU, Dr. Spiegel

Must make room for ME and my extra-large ego.”

“All right,” said the slightly dejected S2,

“When I am all through, I’ll give over to you.”

“And she’ll be MY patient,” shot Dr. S1,

“She’ll be mine, mine, mine, MINE, from the moment we’re done.”

“WhatEVER,” I said, and I just rolled my eyes.

“Time’s a-wastin’.  Let’s do it.  Get going, you guys.”

So they wheeled me to surgery, both did their jobs,

And when we came out, I had spanking new yobs!

“Well, what do you think?” asked S1 and S2.

I replied, “I’m just glad that this whole thing is through.

I have boobs, and that’s fine, but I was fine before,

I just want my LIFE back.  There’s so much, MUCH more.

I want to be free, be a mom, be a wife,

Write an end to this chapter of my so-called life.”

And what happened next?  Well in Who-ville they say

That the doctors’ small hearts grew THREE sizes that day.

My story had touched them.  It lifted the fog

Of their arrogance—and gave me stuff for my blog.

So, thanks to the doctors—their wisdom and skills,

Their sense of perfection, and even their pills.

I’m alive.  I am whole.  Though my journey’s not finished,

My faith in my future remains undiminished.


It’s my cancer-versary

One year ago today the bottom fell out of my carefully-ordered life when I was diagnosed with breast cancer.

To say that a lot has happened in the last year is an utter waste of words. I’m not sure there are words to convey how much has happened in the last year; if there are, they are reserved for better writers than I.

Being diagnosed with cancer at age 40 is a shock. Duh. It’s scary and unexpected and unnerving. Double duh. 40 is when we hit our stride. For me, it meant my kids were old enough to not need constant supervision but to still need my guidance. I’d recently discovered tennis, the new love of my life, and had time and freedom to play often. I had a tight circle of friends who knew who they are and where they want to go. I was very comfortable with the direction of my life and the steps I was taking to make it the very best it could be.

Then came cancer.

That vicious beast had already stolen my sweet mama from me, when she was only 67. I was 36 and finding my own way as a mother, and needed her input and presence. But more importantly, I needed her friendship. She and I never had the contentious relationship that a lot of mothers & daughters have. We always liked each other. Maybe because we were a bit opposite: she was yielding and I was (am) opinionated. But maybe we just got lucky, and had that special relationship that some fates bestow upon some people but not others. The reason for our good relationship is immaterial; the fact was, we treasured each other, and losing her was the worst thing to ever happen to me.

Until April 27, 2010.

My guardian angels were asleep at the wheel. 

I’d been getting baseline mammograms since my mom died, since hers was a reproductive cancer and that put me at a slightly greater risk. More so, though, was my OB-GYN’s diligence. Her husband is an oncologist at MD Anderson, so she’s super-tuned to cancer and its sneaky ways of getting its foot inside the door. She saved my life. Pure and simple. And monumental.

When the news came on this day last year, I listened to everything Dr Dempsey told me about my cancer, as Boss Lady Staci dutifully took notes in Trevor’s stead as he hustled home from a business trip. I held it together until the end, when she asked if I had any more questions and I had one: how do I tell my kids? 

They’d watched their YaYa die from cancer, and while only 6 and 3 years old, those memories are powerful. They wanted a lot of assurance that my cancer was different in every way from YaYa’s and that it was not going to kill me, too.

One week after my diagnosis, Payton turned 11. I was gearing up for a double mastectomy, but wasn’t going to neglect his celebration, because if we can’t celebrate life and its happy moments, then cancer might as well come and get us all. We had the usual birthday breakfast on the personalized birthday plates, just as we had every year. As I placed his feast in front of him, I muttered my birthday wish, which was to make sure I was around to place that personalized plate in front of him on May 3rd for many years to come. My firstborn isn’t going to celebrate his birthday without his mama if I have anything to say about it.

The day before my mastectomy, Macy and I met Jeffrey, the orphaned mockingbird rescued by Amy Hoover’s family. We’d been hearing about this little guy, and my animal-loving girl needed to see him for herself. I had a million things to do to prepare for not only surgery but also weeks of dependency, but we made time to meet Jeffrey, and I’m so glad we did. 

Mastectomy day, I was up bright & early and ready to get the show on the road. Here I am at the hospital waiting to get de-cancer-fied.

Two weeks later, I turned 41. I celebrated in typical fashion, with a girlfriends’ lunch and champagne that night. White cake and bubbly are two of my favorite things, and they just say “party” to me. I didn’t feel great, but I was determined to greet the next year in my life with a glass in my hand and a smile on my face. Being surrounded by my best girls during the day and my family in the evening reminded me that life goes on and that while my recovery was hard, it was do-able, so take that, cancer.

A few days before my birthday, I strapped on as much determination as I could muster and took Macy to see Taylor Swift at the Toyota Center with her best bud, Ella, and my partner in crime, Jill. I was so afraid of being jostled by the crowd, as I was still pretty sore and healing was far from complete. But I wanted to be there and be a part of that big event, and to prove to myself that life doesn’t stop for cancer. I’d lost my breasts but not my drive. The glowsticks burned brightly as the music thumped, and I sat next to my favorite girl and soaked it all up. Every last drop.

Good thing I did, because my healing and happiness were short-lived.

Macy had just posted this on her chalkboard, and for all we knew, the worst was behind us and it could only improve from there. Hahahahahahahahahahahaha.

Just as I felt like I was really recovering from the mastectomy, the nosocomial infection entered my life. A curveball? And how.

Hospitalized for 9 days, pumped full of antibiotics, right tissue expander removed and left expander drained, my life took a decidedly unpleasant turn. It took 6 weeks to diagnose the mycobacterium, and nearly a month total of days spent in the hospital. That first 9-day stay was the longest of my hospitalizations, but also the scariest because the infection was hiding under the tissue expander, hard to diagnose but making me really, really sick. A month after the 9-day stay, I was back in the joint. Out for 3 days and back for 5 more days. Then, out for 2 weeks and back in for 3 days. A seemingly never-ending cycle. Each time I had to go back in, Macy would hand me Froggy, her most beloved of all her “crew” of stuffed animals. He’s been with her since she was a tiny baby and has enjoyed favored status among the masses of other stuffed animals. He’s been in her bed every night and has gone on every trip she’s taken, and she gave him to me to take on each trip to the hospital. He had a bath in hot, bleachy water with an extra rinse every time he came home to her.

She also gave me Baby Snoopy, another coveted member of the “crew,” and my  heart swells at the idea of my baby girl’s thoughtfulness. Though she hated to see me go back to the hospital, she knew her “crew” would comfort me in her absence.

Gross picture, yes, but I did make it smaller so you don’t have to see it in all its glory. Apologies to Christy, who hates this kind of stuff, and Julie: you’d better start skimming because this is the icky part. The aftermath of the mycobacterium is unpleasant, for sure. And this is not the worst shot there is; this shot was taken after much healing had occurred, believe it or not. The wound left behind by the infection was 5.6 cm long, 3 cm wide and 2 cm deep.  That dang bug wreaked a lot of havoc on my already-ravaged right chest wall, and it killed what little bit of healthy tissue was left after Dr Dempsey scooped most of it out to rid the cancer. It’s an insidious bug that is hard to treat. It’s not drug-resistant, like MRSA, but it is very slow-growing and so it responds slowly to antibiotics. Hence the long, long, looooooooong course of oral abx and the multiple rounds of  IV antibiotics, at home and in the hospital. I still have this collection on my kitchen counter, to take twice a day, but luckily haven’t needed the IV version since the last go-round in March. No idea when I’ll get off the oral abx, but sweet Dr Grimes, my infectious disease doc, has told me that he has patients who are on abx therapy for years. Years. Plural. Egads.

Trevor and I became fluent in home health care and learned how to administer the vancomycin and cefapim all by ourselves. The learning curve wasn’t steep, and the whole process was very systematic. My home health nurse, Chona, was as kind and competent as could be, but the gravitas of my situation was clear.While I dreaded it and resented the 3 hours it took twice a day to infuse, I counted my blessings and reminded myself that it could be worse: I could be getting those drugs via IV in the hospital. Again. Which is why I smiled for the camera, tethered yet again but happy to be at home, with Snoopy to keep me and my IV pole company. And yes, that is a glass of wine on the table next to me. It was a dark period in my life, people; don’t judge.

Remember Sucky, the wound vac? This photo is harder for me to look at than the one of the wound. Oh, how I hated Sucky. Necessary, yes, but hateful. And that’s all I’m going to say about that.

This is what Sucky’s appendage looked like strapped to my body, so it could suck out the gunk and speed the healing from this curveball. The size of the plastic sheeting and the tape required to keep the Sucky train rolling was big enough to give me the vapors, and my poor skin is shuddering at the memories right now. And isn’t everyone thankful that I didn’t have a better camera than the one on my iPhone? Imagine how gruesome the photos would be! Oh, the horror. 

The amount of supplies needed to deal with that wound was staggering. The home health stuff was delivered in big boxes, which cluttered up my office and dining room for a day or two before I said enough! and organized everything to minimize its presence. Out of sight, out of mind (sort of). I pared it down as much as I could.

I became proficient at prettying up the ugly truth of cancer treatment, and its equally- ugly friend,infection aftermath, fared the same. I may not have had control over the mutating cells in my body or the nasty bug that invited itself in post-mastectomy, but I sure could dictate how my surroundings would look during the after-party. 

The amount of supplies needed for this fragile existence was great, and so was my need for comfort. That I found comfort in bubbly and coconut cream pie should come as no surprise to anyone who knows me. I may have been down and out, with cancer and infection taking their pounds of flesh (literally), but I was powered by Piper and pie.

The summer wore on and I barely saw the sun. And only then, through the window; I didn’t get out much. Between the hospital stays, feeling puny, IV drugs, and being on guard against germs, I missed out on a lot.

I did make it to Macy’s 2nd grade last-day-of-school festivities. She had something funny to say when it was her turn to take the podium, and although I don’t recall what it was, I’m glad I was able to be there to see her in action. I also dragged my sorry carcass to Payton’s 5th grade farewell. My friends in high places in the school volunteering world pulled some strings and had a reserved seat for me, along with a parking cone to save a parking place for Mary, who carted me there and back. My baby was moving on to middle school, and I was moving slowly–very slowly–toward recovery, from cancer and infection. 

Right before school ended, Payton was honored with a spot on the All Star team. This boy lives & breathes baseball, and has from his earliest days, so this is a big deal.

The team went from District to Sectionals to State (or maybe Sectionals to District to State), and I made it to 1 game. Being in the hospital while my favorite player did that thing he does best was hard on this mama. His team had a lot of heart, in addition to some mad skills, and they were kind enough to play in my honor for the duration of their run toward State champs. I’ve never been more honored and humbled as when he came home from practice the night before the first tournament (District? Sectionals?) with a pair of pink sweatbands on his wrist. Learning that the entire team was wearing the pink, for me, moved me, and like the Grinch, my heart swelled to maybe a normal size. 

I’ll be forever indebted to all the other All Star moms who cheered for my boy and provided yard signs, pool parties, custom shirts, and child-wrangling assistance in my absence, at our home field and on the road. Missing the games was hard, but knowing that my circle of baseball moms had my back made it bearable. And having my signed photo of the boys in red (with a dash of pink) brightened my hospital room and my spirits. That frame now sits on my dresser, and every day when I see it I remember not only the special summer of baseball success but also the pure hearts of the families on that team who helped my own family in our time of need.

Good things can come from a bad situation. There is hope inside a diagnosis. You get a measure of the depth of people’s kindness, which comes out in lots of ways. Like custom cupcakes. I liked that one a lot, and so did my kids. 

Like a card signed by the staff at PF Chang’s during a celebratory lunch. Our waiter knew we were celebrating some good news in the cancer battle and took it upon himself to have his co-workers celebrate along with us. I said it then, and I’ll say it again: Eat at Chang’s!

My friend Paula from Duke ran in the Salt Lake City Race for the Cure in my honor and sent me her bib from the race. At that point, I was a long way from even considering doing a 5K, so it did my heart good to know she was out there, pounding the pavement among an army of pink and thinking of me.

One weekend in between hospital stays, Macy and I snuck away to Galveston with Christy and her daughter Alexis, for a much-needed break from illness, wound care, and calamities. Macy caught a huge fish off the dock, and seeing her proud smile made the trip even better. There’s something magical about the sunset off the water, and I savored the splendor.

Before the summer was over, we had the chance to puppy-sit this little beauty a couple of times. If puppy kisses can’t cure me, I don’t know what can! 

Once word got out that the puppy-sitting business was up & running, we got to keep Pepper for several days. My kids loved having her to snuggle with on the couch, and I relished the idea that the hard times were morphing into better times.

School started, much to my children’s chagrin, and Payton went off to middle school while Macy began 3rd grade. A few days after school started, I was fresh out of the hospital, she and I rocked out at the Jack Johnson concert in the Woodlands. Because I had been hospitalized, again, so recently, my attending the show wasn’t a sure thing. I still had the dressing on my port-a-cath and wasn’t feeling great.  What is a sure thing, however, is that I’m as stubborn as cancer is shitty, so I made it to the show. 

August and September were spent recuperating, and at the end of September I hobbled myself on down to Tootsies, a chichi clothing store in the high-rent district that was outfitting survivor models for the Couture for the Cause fashion show. I’d only been out of the hospital for a month, but I had committed to doing the show and I made good on my word. Scared breathless and unsure of myself are not states in which I commonly find myself, but the fashion show landed me smack dab in the middle of “What in the world am I doing?” territory. I wasn’t wild about the dresses I wore, but my shoes were a-maz-ing and the experience is one I truly will never forget. Oh, and we raised almost $100K for the cause. 

October signaled the return of some normalcy. I was able to put together something I’d daydreamed about a lot in the hospital: the First Annual Pink Party. I wanted to gather my circle of girls who had seen me and my family through the roughest part of the “cancer journey” to show my thanks and spend some non-sick time together. With the pink theme, yummy food (if I do say so myself), and plentiful drink, it was a smash success.

We seemed to have the infection under control and the antibiotics were doing their job, and after a much longer-than-anticipated hiatus, I was back on the tennis court. My sweet tennis friends gave me a little trophy that says “Winner,” and it’s the best trophy I’ve ever won. 

This little trophy soon had a friend, though, after Boss Lady and I won the Witches’ Open at the end of October. Being back on the court with my tennis friends was so great. Tennis is very good therapy.

As if that day wasn’t fun enough, that night was the Maroon 5 concert in the Woodlands. Tennis, then dinner and the show was a balm for my battered soul. We ate & drank then sang along with Adam for an unforgettable night.

Before too long, fall was upon us (or what passes for fall in Houston), and we readied ourselves for the holidays. Thanksgiving was spent with Team Cremer, with everyone contributing something to the feast. The kids worked off their meal with the traditional post-turkey swim. We had a lot for which to give thanks.

Christmas and the New Year came and went, and before I knew it was time to start making preparations for reconstruction. The Big Dig was a big step, and I had hoped it would signal the end to my “cancer journey” and allow me to put all that hardship behind me. Adding another doctor, and another Dr S, to my cast of characters could only mean one thing: I was going in for a very big surgery.

The DIEP procedure is amazing and hard, in a lot of ways: time consuming, intricate, detailed, and not infallible. Babying the newly transplanted skin, tissues, and blood vessels was hard work, and the crack team at Methodist in the med center did an outstanding job.

This is what I looked like before The Big Dig:

and this is what I looked like 3 days later, leaving the hospital:

It was a hard 3 days, no lie, but at least I was going home. One thing I would miss from the hospital was the morphine. Oh, how I love that stuff. I guess a lot of people do, too, because they guard it closely and I got a laugh from the ping-pong-paddle-key used to replenish my supply. Kinda reminded me of a gas station restroom key. 

One thing I would not miss from the hospital was this chair.

This was the chair in ICU that I had to hoist myself into, after hoisting myself and my 17-inch-long abdominal incision out of bed. Again, it’s a good thing I’m so stubborn, because it would have been easy to roll over, say this is too hard, too painful, too much. But by golly I was going to get out of that bed and into that chair no matter what, and with my morphine pump in hand, I did just that. I don’t think I cussed too much, either.

Recovery from The Big Dig is ongoing, and they say it will take a while longer. I’m not the most patient person, and I’m ready to have everything back to normal. Of course I know there’s a new normal, and it progresses at its own pace, not mine. It’s been a long, tough “journey,”and it seemed that everything that could go wrong did go wrong, for a while.

But a lot of good things have happened, too. I started blogging, for one, with Pedey at my side or in my chair, or both; who knew so many people were interested in my little “cancer journey?” It’s humbling and rewarding to see my “readership” grow, and I am immensely grateful for all the love and support that’s come my way. Someday I may have no cancer-related news to share. How weird will that be? I imagine I’ll find something to talk about in this space, nonetheless.

I will have more stories to share about my adventures with Dr S. There are a couple of revisions that he needs to make to his palette that is my newly constructed chest, and while we argue about the timeframe for that, it will likely provide blog fodder and laughs along the way.

One year ago, life took a decidedly unpleasant turn. Cancer entered my life like an afternoon storm along the Gulf Coast. 

And like the butterfly bush in my backyard that was uprooted and tossed around by high winds recently, I weathered the storm. I’m setting my roots and hoping that the winds that blow my way in future are calmer.

Like the pillow on my bed says, I am a survivor.


Extra! Extra!

The front page of the Houston Chronicle today has an article entitled “Infections Top Safety Issues for Hospitals.”

For hospitals?? What about for patients??

I admit, before I became a statistic and contracted a nosocomial infection, I didn’t think much about it, and I would have to say that infections were not the top safety issue for me. Now, of course, I am a statistic, and I’m not very happy about it. Well, I learned a new word (nosocomial,) which usually makes me happy, but this time, not so much. In fact, not at all. I could have happily lived the rest of my life never hearing that word, much less learning about it so intimately.

The article in today’s paper got my attention, for sure, and I half expected to read a story similar to my own, but instead it’s about systemic vascular infections among Medicare patients. The article itself didn’t enlighten me much, and it never said specifically what kind of infections we’re talking about. Not a single mention of staph or mycobacterium to be found.

Sadly, I’m quite well-versed in those two topics.

The article did say that out of 46 hospitals in a 50-mile radius of Houston, half of them reported that Medicare patients under their care contracted infections. Some 472 “hospital-acquired conditions” were reported among 234,000 Medicare patients from October 2008 to June 2010.

I love how the infections are downgraded to “conditions” in print. I can tell you with 100 percent clarity that my hospital-acquired infection was not a condition. It was hell, and it became all-out war.

the-leaky-cauldron.org

Even though I eventually emerged the victor, like most warriors, I will live in the shadow of that victory forever. I don’t know that I will ever feel completely at ease about the infection. I suspect the fear of infection will always be in the back of my mind. Like Harry Potter looking over his shoulder for “He Who Shall Not Be Named,” I will carry this monkey on my back for all of time.

It’s been a while since I have had the recurring dream in which my chest splits open and fluid is pouring out. Maybe that means I’m healing, mentally. In January I wrote about Post-Traumatic Stress Disorder, and how it’s not just for people in the military.

At that time, I was 5 months out from my last hospitalization for the post-mastectomy infection, and it was still alarmingly fresh in my mind. Today, I’m even farther out from that last hospital stay, and hope to continue putting distance between myself and that date. 8 months and counting….

I don’t freak out on a daily basis anymore, and having a reconstructed chest instead of a battle-scarred sunken stretch of mangled skin helps. A lot. To the untrained eye, I look like a normal suburbanite going about her daily business. I’m pretty much recovered from The Big Dig, other than some lingering soreness in my belly incision and the annoying fatigue that I can’t seem to shake. The reconstruction, like the cancer, was a piece of cake compared to fighting the hospital-acquired “condition.”

That “condition” and I go round and round, and even though I was the winner in our balls-out battle this past summer, it will always have a hold on me. The 256 days of oral antibiotics are case in point.

256 days.

Twice a day.

Every day.

256 days. With no end in sight.

The other day, I did something I haven’t done in all that time: I missed a dose.

This is huge for me. I’m a bit OCD when it comes to taking my meds, and I’ve been ridiculoulsy proud of the fact that after all this time, I’ve stayed on course and haven’t had to take a break, to nurse an upset stomach or to quell a GI disturbance. I’ve only barfed a couple of times, and it was because I didn’t eat enough to lay down a good base for those antibiotics.

But lately it hasn’t mattered what I eat, I always feel barfy. Once the simple carbs like crackers & pretzels failed to rid me of the ever-present nausea, I gave in and took the Zofran. The nausea was gone, but I couldn’t keep my eyes open. Clearly this would not be a daytime solution. Once I’d exhausted the simple carbs and Zofran plan, I resorted to alcohol. And lots of it. I figured, if I was gonna feel that bad, I might as well have a good buzz.

Not such a good plan.

I’m really glad I never read the 2001 study on vascular infections authored by Dr CA Mestress of Barcelona. In it he says that vascular infections are “dreadful surgical entities that are usually accompanied by a high morbidity and mortality.” Yikes. I’m really glad I didn’t know that until now. Dr Mestress goes on to say that these infections “require immediate diagnosis and aggressive treatment.”

The recent study on Medicare patients found in the Chronicle today quotes Donald McLeod, spokesperson for the US Department of Health & Human Services as saying, “We wanted to bring transparency to the fact that patients are exposed to potentially unsafe occurrences at America’s hospitals.” He goes on to say he hopes that the recent study will “spur hospitals to work with care providers to reduce or eliminate these hospital-acquired conditions from happening again to even a single patient.”

There’s that word again: condition.  That’s gonna bug me.

It seems the recent study focused on vascular infections contracted via catheters, so who knows how many other hospital-acquired “conditions” are unclassified. Instead of giving me the details I want, the article devoted itself to discussing other hospital-acquired “conditions” such as bed sores, falls, mismatched blood types, and surgical objects accidentally left in the body after surgery.

Ok, so none of those things happened to me, and for that, I am grateful. Wonder if Harry Potter can whip me up a cure for the all-day nausea?


Journey

If you’re like me, once you read the title of this post, you’d end up with “Don’t Stop Believing” running through your head.

“Hold on to that feeeeeeeeling….”

Yes, we are simple creatures at times, and prone to even simpler suggestion.

As I wrap up the Napa series of blog posts, I reflect back on a fantastic trip, an outstanding weekend, and the kind of memories that would keep me warm on a cold winter’s night if I didn’t live along the Gulf Coast of the great state of Texas. Not that the memories aren’t that good, but that there’s little need for warming around here. Especially with my hot flashes. Thanks, early-induced menopause, because pre-summer in Houston isn’t steamy enough.

Thinking about the trip and preparing to say good-bye to our visitors from Boston today makes me a teensy bit sad. I don’t like transitions. I’m in for the long haul and can work long and hard at a steady pace, but I don’t care for the ups & downs, the twists & turns, the stops & starts. This sentiment applies, for me, whether we’re talking about vacation or illness. Going from my “normal” life to vacation mode takes me a little bit of time. Getting into the vacation frame of mind is a conscious shift for me, even when it’s a vacation I’m looking forward to. Having our friends from Boston here is most definitely something I look forward to, but it still requires me to make that shift in my head.

Now that our vacation with them is ending, I find myself again shifting, from the luxuryof sleeping in on a school day and spending the day by the pool, drinking early and often and into the evening; to hauling my carcass out of bed to pack the kids’ lunches, sign their folders, forge notes about their absences, and getting back to my normal life. I like my normal life, so this isn’t inherently a bad thing; it just required me to shift gears and change my  mind frame.

I’ve never been good at handling change, and that may be why I’m not a great traveler. I don’t like the idea of having to decide in advance what I’ll be wearing, and then pack it, taking care to not forget anything. It seems that once I get used to the new location, it’s about time to go home, and then there’s another adjustment to handle. I do it, and without the need for intervention, but it’s an effort.

That’s why this phrase spoke to me:

It was on the wall of the Cost Plus World Market in San Francisco near our hotel, where we popped into for supplies (and by supplies, yes, I do indeed mean champagne) our first night in California. We were at the checkout, clanking bottles and deciding whether to add chocolates to the purchase, when I saw this saying on the store wall. The other shoppers might have thought me a bit mad to be snapping a photo in the middle of a store, but I stopped caring about things like that a long time ago.

The saying spoke to me because I know that Lao Tzu is right.  He was a mythical figure in ancient China and is said to be the father of Taoism, so you know he’s smart. His ancient quote about the good traveler retains relevance today because people like me continue to buck the journey in favor of the destination. I know that it’s not about the destination, yet I can’t wait to get there. I will jump through all the requisite hoops along the journey in order to get to the destination, but for me, the destination is the goal. Wrong, I know, but still I persist.

Some say that dealing with cancer gives you greater clarity on “the things that really matter.” Or that having survived cancer, you become more aware of and grateful for the things around you. Then there are the idiot-balls who say that cancer is a gift. To them, I say choke off. This is no gift. Yes, it does afford the opportunity to re-evaluate priorities and habits, but it’s no gift.

I spend a lot of time in my personal “cancer journey” marking off time and accumulating milestones. Maybe that’s a coping mechanism, I don’t know. I do know that I can tell you to the day how long I’ve been on oral antibiotics (251 days), and how long it’s been since The Big Dig (49 days). More likely, it’s because I’m focused on the destination and not the journey. I can’t wait to “be done” with this cancer business: the disease itself, the surgeries, the recoveries, the uncertainty, and the drug therapies. I don’t aspire to ever be free of the worry that the cancer business drops on my doorstep like an unexpected and oversized parcel. It will always be there, in the back of my mind. I liken it to the childhood sensation of rolling your tongue through the newly-created hole of a lost tooth. Your brain knows the tooth is gone, but your tongue can’t resist checking for sure, by sliding through that narrow, slippery, and slightly nauseating space. My brain knows my cancer is gone, yet it can’t resist double-checking.

I refuse to live in fear, however. I don’t want to have any regrets: about life in general, and certainly not in this “cancer journey.” Each decision I’ve made along this “journey” has been nitpicked and examined half to death, with risk and reward calculated to within an inch of their lives. Some decisions have been difficult, and some have been easy, but none have come without a lot of thought.

I heard from a fellow breast cancer blogger who is dealing with an infection, possibly of her tissue expander, just as I did. She’s on IV Vancomycin, like I have been many times. I commented on her blog to tell her that the Vanc works and it will cure her, hoping to offer some support. She replied that she can’t imagine how I endured that process multiple times because it’s so stressful. Yes, it is. No doubt there. And if someone were to ask me how I endured it, I don’t know that I would have an answer. I don’t know how I got through it, other than I just did it. Just gritted my teeth, tucked my head and did it. Because I didn’t see any other choice. Saying “I can’t” wasn’t going to make it go away.

I do like to make myself focus on good things, or to “walk on the sunny side of the street” (thanks, Mom!). Yesterday I wasn’t feeling well, for the 3rd day in a row, and was a little put-out that my “cancer journey” was once again interfering in my fun. I wanted to visit and eat & drink with my friends who were in town, but instead I had to lay down and take a nap. Take a nap. In the middle of the day, and in the middle of my friends’ visit. That made me grumpy, and I was just starting to think about getting out the pity-party supplies.

Then I told myself to shut the hell up, get in the shower and get on with the day. There was dinner to prepare for our last night together and 3 bottles of bubbly in the fridge, so there was no time for a pity party.

While in the shower, I was wondering why the hell my belly incision is still so tight and sore after 48 days, and when in the sam hell it’s ever going to heal all the way so I can take a shower like a normal person, without wincing as I lather, rinse & repeat, and just be done with it.

Then I realized: I AM taking a shower like a normal person. There were no JP drains to deal with. There were no holes in the side of my body to keep dry. There was no dressing over the accessed port-a-cath that had to be kept dry. 

When my port is accessed, i.e., has a butterfly needle piercing my skin and the port to deliver medicine, it has to be covered to keep it sterile. The port itself is smaller than a quarter, and the butterfly needle (while really thick) doesn’t extend the area. Yet the whole thing has to be covered with this giant dressing. That’s it above, stuck to my clavicle, shoulder, and neck area. My skin hates these dressing with a passion. The sticky tape irritates my skin as much as Sarah Palin irritates me. After I peel the dressing off, there remains a red, raised outline in the exact size & shape of the dressing.

And yet, I’m sans dressing. That’s a bright side, a good thing to be tallied and counted. I’m also sans sling bag. Not having the JP drains means I don’t have to wear the sling bag, cute as it may be, 24/7. That’s another bright side, and a very good thing.

Yep, it’s cute, and it served a wonderful purpose, and I love my runnin’ buddy for getting it for me. Being able to camouflage the drains by stuffing them in the sling bag, then hide the protruding rubber tubing by the cross-body bag, gave me freedom and kept me from being house-bound.

There’s nothing in there — look, Ma, no drains!! — and that is a reason to celebrate. I’m no longer tethered to plastic bomb-shaped udders collecting all manner of gross stuff, fluid and solid, that my battered body is shedding after yet another major trauma. I don’t have to plan my very limited wardrobe around the bright orange pattern anymore, but now I can do that just because I want to.

I will always be grateful to the sling bag for carrying my drains, and my drugs, in such style. The clear plastic compartment in the inside front is not likely designed for slipping in the essential few pills, but it sure worked well for me. I’ve heard that some people keep their driver’s license there instead. How weird is that?! Instead of my TX ID, featured here are my constant companions Bactrim & Minocycline, the antibiotics for the post-mastectomy infection; a muscle relaxer for the super-tight 17-inch belly incision; and a Xanax for any and all calamities, just in case.

So while this “cancer journey” is far from a gift and certainly does suck, I can still “walk on the sunny side of the street,” look on the bright side, and find moments of goodness contained within as I move forward, always searching for the finish line.

This signpost, sent to me by Jill in the Oakland airport en route from Napa back home, is a good mile marker in my journey. I love that my friends see bubbly-related things and think of me, and I love that no matter where this journey takes me, I’ll have great friends, a sassy sling bag, and plenty of bubbly for the ride.


Playin’ the cancer card

I don’t do it very often.

Not because I’m so virtuous, because the truth is, I’d sell my soul to get back to my normal life. Too bad nobody’s buying.

Today I played the cancer card. And I’m not sorry.

My allergists’ office called. The one doctor’s office I don’t hear from on a weekly basis, at the least. The nurse said they can’t call in a refill for my Flonase because I’m “way overdue for a follow-up visit.”

I haven’t had any respiratory problems–that may be the only thing I haven’t had problems with, and my sinuses seem to be the only body part not felled by infections, yes, plural infections. I didn’t think it necessary to go for a follow-up visit.

I’ve also been a little busy.

I told the nurse that I’ve been a little busy. I was nice about it, despite a childish but pressing desire to blister her ears with the entire, complicated, curse-word-filled story.

But I did not. That, people, is what is known as self-control. I don’t exert it all that often, so pardon my need to point it out when the planets are aligned and it does happen.

I simply told the nurse that I’ve been preoccupied with breast cancer, multiple surgeries, infection, and full-time, long-term healing. Long, drawn-out pause. Cue the crickets chirping.

She didn’t say anything, so I wrapped up the already-dead conversation by telling her to please pass along the message that if the doctor still needed to see me, in order to refill a benign prescription for a preventative steroid nasal spray, I would indeed drag my pathetic, battered, scarred, fused, and infused carcass to the office and wait ever-so-patiently for the all-mighty doctor to fill out a perfunctory slip of paper.

The nurse said she would call me back.

I said, thank you ever so much, and please, have a nice day.

Guess what? The prescription is approved, filled, and awaiting pick-up.

As Kenny Rogers so eloquently put it, “You gotta know when to hold ’em, know when to fold ’em.” You also gotta know when to play that cancer card.


Yesterday

Yesterday was busy, and I was so occupied with celebrating the removal of the last surgical drains (HOORAY!), I didn’t fully process all that happened in the 3 doctors’ visits. Also, in the interest of full disclosure, I learned that two of the three docs read or monitor this blog, and that fact inhibits me. It takes a lot to achieve that, as I’m not easily inhibited or shut-up-able. Yikes.

So if the docs are reading today, hellooooooooo! Hope you’re having a great day filled with smiling patients, easy procedures, and ever-flowing compliments. Y’all deserve it. As I gaze down at my newly created cleavage, I’m indebted to you once again. Thank you, thank you, thank you!

Back to the long day yesterday — it began bright & early at Dr Grimes’s office, and the adventure was kick-started as soon as we walked in the door–Amy and I wondered if someone had spilled a bottle of Febreeze, as there was a serious overdose of artificial freshness in the small waiting area. An older woman who was waiting to see Dr Grimes said she couldn’t smell a thing, darned allergies, and she really hoped it wasn’t her perfume. Amy & I giggled behind our hands at the idea of someone with no sense of smell piling on the perfume, hee hee. Guess what? It was her perfume! As she left the waiting area for an exam room, the smell went with her. Egads.

Dr Grimes was full of wisdom–even more so than usual. I told him that Amy & I took the “Do I Have a Problem with Alcohol?” quiz on one of his HIV pamphlets in the exam room. According to the pamphlet, “people with HIV are prone to abuse alcohol.” They don’t have an exclusive on that propensity, believe me.

So the quiz goes like this: Amy read the questions, and I answered.

  1. Do you lose time from school/work due to drinking? No, but seeing the “due to” construction misused makes me need a drink. It’s “because of” drinking! Sheesh.
  2. Is drinking making your life unhappy? No, just the opposite. It makes my life very, very happy.
  3. Is drinking causing a change or harming your reputation? Nope, it enhances my reputation. It’s all good. But would it kill ya to say “causing a change in or harming your reputation?” Seriously, who writes these things??
  4. Do you feel guilty or have remorse after drinking? No way, I don’t even remember having had the drinks. And another beautiful thing about drinking is that it kills those kinds of feelings (which is why we do it, duh).
  5. Has your performance at school or work declined because of your drinking? On the contrary, my drinking universally enhances my performances.
  6. Do you often drink alone? Define “often.”
  7. Do you ever black out or forget what you have done while you were drinking? What was the question?
  8. Does drinking make you feel strong or overly confident? Why, yes, it does. I couldn’t write this blog without being under the influence, every single time I write. People don’t do this sober, do they?
  9. Has your drinking negatively impacted your relationship with family, friends, and/or loved ones? No, and if they really loved me, they’d get me a refill.
  10. Do you drink and are under the age of 21? Yes, and no. But I like looking at people who are under the age of 21, especially cute guys. No harm in that. And again, can we get a proofreader here? “Do you drink and are you under the age of 21″ flows so much nicer and sounds so much better. It’s not that difficult.

With the quiz completed, Dr Grimes swept into the room and gave us a passing grade on it. We told him that the only problem we have with alcohol is that we weren’t drinking bloody marys as we took the quiz and waited for the doctor. He shared a quote with us from one of his college professors, a man whose first name is Chivas: “My definition of an alcoholic is someone who drinks more than me, and who I don’t like.” Well said, Professor Scotch.

Another funny thing: Dr Grimes was in the middle of the Chivas story when I started stripping down for the physical exam. I don’t think twice about doing this because I’m so used to it at this point, but he clearly doesn’t have a lot of patients do this. I bet he doesn’t have any who were slated for 3 physical exams in the same day. He was working hard to avert his eyes while he finished his story!

The other good quote we got from Dr Grimes came in the course of our discussion of how long it takes to treat and cure infection, and how much more patient I’m being than I have been in the past (he really said that, and I didn’t prompt him — it’s true!). I used to ask him as often as possible when I’d get off the oral antibiotics. I’d even have my friend Laura, who works with him, ask him for me. But now that I’ve had a flare-up and am back on IV antibiotics, in addition to the oral abx, I’ve stopped asking. I will stay on the oral abx as long as I need to. 231 days and counting, but not impatiently.

Ok, the quote: it comes from Dr Grimes’s grandpa, who said “Anything looks fast running past trees.” That’s pretty deep. I’m going to leave the interpretation up to each individual, like a Rorschach test in which everyone comes up with a different answer. 

Let me know what your answer is.

Speaking of open interpretation, Dr Grimes gave me a copy of my pathology consultation report from the Big Dig. Fascinating stuff. I think it warrants a separate post. Don’t want anyone to get behind in their real jobs because this post stretches on too long. Plus, I need to look up a few more words and educate myself a little more. Either that, or have a drink so I can better ignore the multiple references of adipose tissue in the path report.

Thank goodness Amy was with me for the long day yesterday, both because I have proved to need adult supervision, and because I tend to miss half of what the good docs tell me. Not sure when I became such a birdbrain, but once I get in those exam rooms, I can’t seem to retain everything.

That, and I need a witness to some things like the fact that all three docs yesterday approved of my trip to Napa next week. Well, Dr Grimes’s approval was less than wholehearted; he basically said, I’m not going to tell you what to do because I know you will just go ahead and do what you want to do. I’ve learned that about you.” I think he coughed and muttered “tennis” a few times, as if we needed to dredge up the past in which there were rumors of me playing tennis before I was officially cleared to do so.

He said yes to Napa but wants to keep me on the IV abx right up until we leave, just to be sure. He thinks that whatever potential infection was stopped in its tracks before it had a chance to get ugly, hence the lack of progression. He was treating my symptoms but not seeing evidence of anything getting worse, so at this point the extra week of IV drugs is insurance. Anything that ensures me getting on that plane and heading to Wine Country is all right with me. He did tell me to try not to drink too much. Huh, yeah, right. I’ll give that a try. While in Napa. Uh huh. Gonna try real hard. Sure.

He let me go and said to come back in a month, but I had to make a return visit to the infusion room after I saw Dr Spiegel to get my next week’s supply of IV abx, and to have Nurse Shakey change the needle in my port and insert a new one. See why I need to drink, people???

On to Dr Spiegel’s office. Amy and I spent some time in the waiting area reading the pathology report,  giggling, and admiring this week’s delivery of fresh flowers. Once back in the exam room, I stripped down again, the second of three times in one day. I guess that would be weird for some people, but it’s all in a day’s work for me.

Dr Spiegel was as stunning as always, and I wish I’d asked her who cuts her hair because it’s a great cut. She continues to be pleased with the healing going on in the multitude of scars on me, and gave me the ok to ditch the flimsy post-surgical bra and buy a real bra. A real bra! Wow. Haven’t had one of those in almost a year. That’s strangely exciting. What’s not so exciting was learning that my belly may stay a bit swollen for 6 months. There was a lot of excavation done there, so it makes sense, but I’m ready for everything to be back to normal now! I need some compression on my belly to help reduce the swelling. How ironic is it that when I had a bit of a belly, I never wore a “compression garment” but now that my belly has been relocated north, I need a girdle. Fine, whatever, I’d wear a suit of armor at this point if it meant getting rid of the drains. Hooray and hallelujah that the drains are gone. What’s really amazing is that the holes that held the drain tubing are already closed. Not healed completely, and still really bruised, but not open and not seeping any fluid. Yes, it’s another gross photo but this one actually represents something to be celebrated. As in, I’m celebrating the absence of any rubber tubing. And instead of cringing, you should be celebrating that you don’t have any either. And while you’re at it, cross your fingers for continued healing and no drama. And be glad you’re not wearing a “compression garment.” Not that I’m complaining. Just saying be glad it’s not you.

My visit with Dr Spiegel concluded with her blessing to go to Napa, have a great time, just don’t go swimming since the incisions and drain holes aren’t completely healed. Trust me, the last thing I’m going to do is anything to jeopardize the fragile peace that I’ve made with this complicated wreck of a body.

From there, we zipped back to Dr Grimes’s office to take care of the port maintenance and pick up the latest box of goodies, then headed out of the med center and down University, past the beautiful Rice University campus, to Second Silhouette, the nearest medical supply company to get my new bra. Yea, how exciting — getting a bra at a supply store. No boutique or Victoria’s Secret for me. No sir, I got to shop at a store that also sells prosthetics and diabetic socks. Yea.

That’s all right, I was shopping without any drains, so it was all good. We were in and out of there quickly, since we were starving, needed to raise a glass to the drain-free status, and still get to Dr S for the third and final appointment of the day.

After some libation and a quick but yummy lunch, it was onward for the highlight of our week: seeing Dr S. His new office is configured so that he has a little desk visible from the check-in window, which has no glass (love that). He was sitting at the little desk, waiting impatiently for his favorite patient and her trusty escort, who he likes the most! I think he glanced at the clock to remind us that we were late, and I’m sure he didn’t want to hear that the reason we were late involved adult beverages. We said howdy, checked in, then fled to the hallway. He wanted to know where we were going, so I told him: to go smoke a butt. No, really, just needed a pit stop.

After that, we got right into an exam room and I once again eschewed the paper gown.

Greenisites.com

Save that for a “normal” patient who isn’t used to stripping down multiple times a day. I’ve saved a lot of trees from my frequent doctor visits. Always looking on the bright side. And I’d much rather hug a tree than a person. Can’t help it, I’m just not very touchy-feely. I just hope that this new habit of mine isn’t permanent; don’t think I need to strip down for the allergist or the podiatrist.

Dr S joined the chorus of “yeses” saying go to Napa, girl, you’ve earned it. ‘Bout time you got out of town. I remembered to get a letter from him to present to TSA saying I have metal in my body (the port) so I may set off the metal detectors. If they are suspicious, I can always strip down and prove it. Amy showed our shared gratitude by washing his glasses, which we could tell were smudged when he gestured and pointed with them. That’s full service. Always happy to help make Dr S’s life better, easier, more joyful. When he mentioned my little blog, he suggested I say some nice things about him instead of always busting his chops. I may have to start a whole ‘nother blog just for him, and to contain all the words of praise and appreciation I have for him. I forgot to tell him that guest blogger Kayte VanScoy described him as “fit and attractive” and likened him to a combination of Justin Timberlake, Arnold Schwarzenegger, and Karl Lagerfeld. What a mash-up!

We had some serious talk about Little League baseball and his 6-year-old’s stellar season so far. He knows I’m a big baseball fan, and we bonded over baseball about this time last year. He helps out with his son’s team and Amy and I both think that’s awesome. He has a seriously busy schedule and a very important job (well, the work he does for cancer patients, anyway; the more cosmetic stuff not as much), yet he’s proven time and again that his family is his priority. I’m sure the coach appreciates the frequent input that Dr S gives him, and he’s been known to make suggestions on the line-up.

After we solved the problems of the Little League team, our business was done. At least for that visit.


Instead of bitchin’ & moanin’

My first instinct when I sat down at the computer today was to bitch & moan about the fact that I’m rapidly approaching one month post-reconstruction and I still have the 2 JP drains, one on each hip.

Have I mentioned how much I detest and despise these drains? While I understand their importance, and I’m a big supporter of fluid being outside instead of inside my battered body, I detest and despise the drains.

Because of the latest flare-up, i.e., the MRSA infection, the drains will stay for the foreseeable future. It’s a vicious cycle: I probably got the infection from the drains, but the drains have to stay until the infection clears. As long as I’m on IV antibiotics, I need the drains, and as long as I have the drains, I need the IV abx. Twisted, huh?

I’m starting week 2 of House Arrest, and this week isn’t any easier than last. The idea is that if I lay low and do next to nothing, the fluid levels will decrease and I can get the drains removed. But now with the MRSA, the drains need to stay, because if there is infected fluid, it’s gotta come out. Nothing makes me more nervous than infected fluid sitting around making mischief on my insides. I had a crazy idea this weekend: since the drains are staying anyway, why not get some things done around the house? Well, because increased activity means increased fluid levels, and then I’ll be stuck with the drains even longer, that’s why.

Instead of bitching &  moaning ad nauseum about drains and House Arrest, I need to find another topic. My quick run-down of all the positive things about this situation left me uninspired. The usual suspects in my list of “bright sides” seems stale and failed to provide me with the literary verve I need.

But then I remembered my port-a-cath. Yes, the port! That’s a bright spot on this barren landscape of bad news topped by rotten luck. And what a story, too: I thought I needed it for chemo, then I didn’t need it for chemo, and had some trouble with it once I got it, but then ended up needing it for so much more! And voila, the topic du jour.

I used to hate my port. I hated that I had to have it in my life at all. I hated that getting it meant yet another surgery and all the hospital stuff that I detest. At first, it was red and angry and painful, and looked just plain awful. At the risk of sounding like a xenophobe, my body clearly doesn’t like foreign things. First the tissue expander got infected, then the skin around the port got hot and red and big-time uncomfortable. The port made it clear from Day One, on June 25th, that this was not going to be an easy co-existence. The port caused me to spend a Saturday in the ER (Good golly, have I not spent enough time in the hospital already?). Thank goodness there was a “Deadliest Catch” marathon on TV that day, or I would have been fit to be tied.

Questions keep coming in about the port, and after I mentioned it in yesterday’s post, I guess I incited the curiosity again. Here’s Wikipedia’s definition of a port: a small medical appliance that is installed beneath the skin. A catheter connects the port to a vein. Under the skin, the port has a septum through which drugs can be injected and blood samples can be drawn many times, usually with less discomfort for the patient than a more typical “needle stick”.

I agree with all of that, except for the period being outside of the quotation marks around needle stick at the end of the sentence. The period should be inside the quote marks. Other than that, it’s all good.

While there are lots of different ports, I got the Power Port. I didn’t express a choice, didn’t think about it, but trusted Dr Dempsey to choose the right one for me. I was still healing from that damned infection that showed up after the mastectomy, and wasn’t thinking about which port was best for me. I got the port because the most respected oncologist in my area said I needed chemo, then a another highly-recommended oncologist seconded that opinion, so I was going to do chemo. Long story short, my lymph nodes were clear and my margins were good, but I had micrometasteses, which essentially are cancer cells that are floating freely and not organizing into tumors. Some oncologists consider micromets to be node positive, meaning the lymph nodes are affected, and some oncologists consider them node negative, meaning they have not traveled to the lymph nodes. Some crazy patients, especially those who watched their sweet, irreplaceable mama die from cancer, think the micromets may not be organized, but need to be blasted with chemo anyway.

Yes, that was me.

Statistically, my case was contraindicated with chemo, but I’ve never been a numbers person, and I admit that my initial pro-chemo decision was based on emotion, not statistics or science. I was still reeling from losing my mom, and sure didn’t want my kids to have to suffer that terrible fate. Who am I kidding saying “I was still reeling” — I      AM still reeling and probably will be for the rest of my life. Stupid cancer.

So I reacted emotionally and, driven by fear, decided to do chemo. I had done my due diligence by consulting two vastly different oncologists (one old and established who is super conservative; the other younger than me and quite current on the latest & greatest research, and also highly recommended by a friend in health care. Both doctors based their pro-chemo recommendation on the fact that I was 40 years old and healthy, and able to handle the chemo. Or so we thought.). I wasn’t thrilled with starting chemo — who is? — but was prepared.

Then the mycobacterium entered my life, and 11 months later, is still a huge part of it. The only good thing I can say about the myco is that being sick, sick, sick in the hospital with a post-surgical infection disqualified me for chemo. I was too sick to start it, and my body certainly wouldn’t have withstood it well. In the meantime, we crunched the numbers again, consulted a third oncologist, and I came down off my emotional decision-making high horse and saw that the numbers really didn’t bear it out. Chemo for me would result in a very marginal increase in survival rate.  If the fortunes had not granted me that one small favor, and I had needed chemo but was too sick from the mycobacterium to start it, I would have been a basket case. Much more of a basket case than I already was, that is.

Talk about a blessing in disguise. While I was reeling from and healing from the infection, Dr Dempsey suggested I consult a third oncologist, because maybe chemo wasn’t what I needed. She never thought so, neither did Trevor, and neither did oncologist #3. My cancer happened to be slow & lazy, which is the best kind of cancer to have. Except for the nonexistent kind, that is. So no chemo, just Tamoxifen for 5 years. But I’d already gotten the port.

Nobody ever accused me of sitting on my hands.

The Power Port comes with a handy, dandy patient pack. When I got home from the procedure to insert the port under my skin and into the vein, I laughed at the handy, dandy patient pack. It seemed so stupid, and to me typified the excess and waste that’s prevalent in the pharmaceutic and medical-device business.

There was a pamphlet full of meaningless prose written to allay any fears I might have about the port (like the fact that it’s sewn into the jugular vein. Hello???) and make me feel warm & fuzzy about the little device. It also included a jelly-type bracelet that I guess they expect port people to wear, along with an ID badge with the serial number of my particular device. Why I would ever need this I couldn’t fathom, so I pitched it all. If you were hoping I’d give you the snazzy jelly bracelet, too bad. You missed out.

My favorite part was the list of bragging points:

“Lightweight for patient comfort.” “Reduced artifact.” “Easily identifiable.” “Power injectable.” “Titanium port body.”

Oooooh, fancy.

Despite the goofy marketing, I have to admit that having a port is highly advantageous if you have wimpy veins. And I do have wimpy veins. At first blush, they seem perfectly competent and cooperative, but once the needle pierces the skin, they flop around like fish out of water, making it hard to pin them down (no pun intended).

After multiple hospitalizations for the blasted infection, though, that port came in handy. And it was crucial during the courses of IV antibiotics I have had at home. And it was supposed to be quite handy in my reconstruction, because the anesthesia, antibiotics, and pain killers (lots and lots of pain killers) can flow through the port instead of an IV in the crook of my arm. However, the port was in the way during the Big Dig, and so the Drs S decided not to use it during surgery, even though it had been accessed, and they put an IV in anyway. At least I was asleep for that.

I don’t hate the port anymore.

It still kinda creeps me out, but I don’t hate it. I shiver a little when I think about the fact that it’s sewn into a vein, and not just any vein but the jugular vein. That’s super creepy. I don’t like that the 3 little nubs on the port’s septum are visible through my skin, and if I turn a certain way, the nubs really protrude. I guess that makes it easy for the nurses who access the port, but it looks weird and reminds me that it’s sewn into the jugular. Sometimes it gets crunched when I’m sleeping on my left side, but I’m still not allowed to sleep on my side since the reconstruction, so never mind.

Several people have asked me why I still have the port and when I’m going to get it out. The answer is not until the infection is gone for good. And no, I don’t know how long it will take. Almost a year into it, I still don’t know. I stopped asking, and you should too.

The main downside to keeping the port is that when it’s not being used, there’s some maintenance required. No big deal, just a trip to see the oncology nurses every 6 weeks. Every visit reminds me how fortunate I am, and that my cancer business could have been even more serious. The infection is plenty serious, but at least the cancer side of things was pretty straightforward.

So the port maintenance goes something like this: the nurse puts a sterile drape around the port site and tells me not to look down or breathe on it. She scrubs the top of the skin on top of the port real well with iodine. It’s cold, and the sensation of the iodine-dipped wand passing repeatedly over the port is disconcerting. The smell of the iodine is gross and reminds me of post-infection wound care, without a single happy memory to be found.

After rigorous cleaning, the nurse jabs a short but very thick butterfly needle through the port’s septum, using the three raised nubs to guide her. Every time I’ve had it done, which had been lots, the nurse has essentially told me to brace myself for a really big stick. They do not exaggerate. The Power Port website says, “For most patients, there is only a  mild pricking sensation felt during needle insertion. Frequently, the sensation of the needle insertion decreases over time.”

Lies. All lies.

Sorry if the photo sicks you out, but if I have to endure the “mild pricking sensation,” surely you can manage to peep at the picture.

Once the super-thick needle is in, the nurse attaches it to a thin tube that she can then attach a syringe to and inject whatever needs to be injected: chemo drugs, antibiotic, pain killers (yes, bring on the pain killers!) some contrast dye for certain scans, or in the case of port maintenance, saline and heparin.

After I’d had this process done several times, one of the chemo nurses asked me if I had used the numbing cream before that day’s appointment. Numbing cream?? What numbing cream? No one had ever mentioned that before.

Well guess what–there’s a numbing cream. Lidocaine and Lanocaine and some other caine all whipped up in a prescription cream that will make the port maintenance so much more pleasant. Yes, please. It does help (when I remember to apply it before my maintenance appointments), and Macy and her friend Ella both used it on their earlobes when they got their ears pierced.

So every 6 weeks I get the port flushed–sometimes with and sometimes without the numbing cream. No big whoop, although one day it bled quite a bit after the needle came out, and made a bloody spot on my most favorite white hoody that remains even after multiple bleachings. Perhaps it’s a symbol of what I’ve been through, and of how much I can endure. It’s a reminder not to whitewash the bad stuff, to leave a hint of the gore around to bear witness to the hard times and rough road that one must travel, sometimes precariously, sometimes fast and sometimes slowly, to get to the other side.


When you suspect MRSA…

I was just looking at some info online about Cubicin, my poorly named but hopefully awesome new antibiotic. The heading of the website caught my eye: When you suspect MRSA cSSSI or bactermia—use CUBICIN first!

Well, in my usual headstrong style, I did not use Cubicin first. I like to rebel that way. It’s not much, but it’s all I’ve got these days.

But now I am on Cubicin, because we not only suspect MRSA, we know it, and I’m back to playing by the rules and toeing the line. For now, anyway.

I’ve learned some things. That’s one thing I will say about this “cancer journey” — the education never stops. Just when I think I’ve got it all figured out and have “been there, done that” something new pops up and presents a whole new learning curve.

If someone had asked me last year if I could see myself administering IV drugs to myself at home, I’d have said nope, you’re whacked,  there’s no way that’s happening.

And yet, here I am, administering IV drugs to myself at home.

If someone had asked me last year if I could envision a breast cancer diagnosis, a bilateral mastectomy, nearly a month in the hospital, and not one but two teams of infectious disease doctors working to keep a wily infection and its friend MRSA at bay, I would have asked what they’ve been smoking.

Yet here I am, looking at that very scenario.

Life is funny that way. And by funny I  mean peculiar, because let’s be honest: there’s nothing funny about any of the things I just listed.

AstraZeneca markets this drug in the US. I’m not sure if Cubicin is the US name for the drug, but whoever named it must have been having an off day. It’s in the daptomycin family, which means precious little except that it adds another notch to my belt. If I were to list all the different antibiotics I’ve been on since May of last year, this post would stretch on and on. Suffice to say I’ve had just about all of them, from Azithromycin to Zyvox, in this long and winding road.

One thing on Cubicin’s website made me laugh: “CUBICIN (daptomycin) is indicated for complicated skin and skin structure infections (CCSI).” Yep, this is complicated all right. I don’t seem to know how to do this any other way. My friend Laura, the transplant nurse, laughs and says, “Nothing about your case has been textbook, my friend.” True, so true.

Cubicin’s website lists the requisite claims of awesomeness along with limitations and warnings. It’s not indicated to treat pneumonia, if you were wondering, nor is it effective for the treatment of left-sided infective endocarditis due to S. aureus. I’m not exactly sure what that ailment is, but I’m sure glad I don’t have it. I do, however, have a problem with the website’s use of  “due to” in that construction. Any monkey knows it should be “because of” as “due to” is a temporal phrase to denote time or expectation, not causation. Man, it bugs me when they get that one wrong.

Moving on.

While poorly named and with a glaring grammatical error on its website, Cubicin does have a lot going for it. Namely, the list of side effects is miraculously short. I’ve become well-versed in side effects of multiple drugs (again, part of the education I never knew I’d be getting and really would be just fine not ever receiving).

The worst side effects seem to be anaphylaxis and pneumonia, but other than that, we’re looking at muscle weakness (great, since I can’t exercise anyway why not speed up the atrophy?), peripheral neuropathy, and diarrhea. So if I don’t have an allergic reaction and get pneumonia from this drug, I’ll have weak muscles, some numbness, and be in the bathroom a lot.

That’s a very short list.

There are two things about this drug that are fantastic. Well, three things if you count the very short list of potential side effects.

It is administered once a day, not twice, and it doesn’t require an IV pole from which to hang. This means I’m tethered (literally) to it half as often and while tethered, have complete mobility. Last time I had IV drugs at home, they hung from a pole and I was forever getting tangled up as I tried to move from room to room with them.

I can forgive the less-than-exciting name for Cubicin.

Some of you have asked how this all works, so I’ll tell you. I’ve always wanted to answer viewer mail like David Letterman used to do (maybe he still does, but I don’t stay up late enough to watch him.). Here’s the deal: I have a needle in my port-a-cath that stays in for the duration of the IV therapy. If IV therapy lasts longer than 7 days, the nurses have to change the needle, so they yank it out and re-puncture me with a fresh one.

Not that I’m complaining, but the needle is rather fat, as it has to pierce not just my skin but also the plastic membrane of the top of the port. They call it a butterfly needle, but let me tell you, there’s nothing gentle or fleeting about it. I’ve had my port poked many, many times during this “cancer journey” and in fact, when it’s not in use, it must be flushed every 6 weeks, so off I go to the oncologist’s office to have the infusion nurses prep me like a HAZ-MAT victim, jab the butterfly through my skin, flush everything then yank the needle and patch me up with gauze and tape.

While I don’t mind going to Dr Darcourt’s office for port maintenance (it’s close, parking’s free, and he’s cute), I now understand why Dr Grimes wanted me to come to his office to get started on this round of IV drugs. That said, I will continue to assert that Dr Darcourt’s infusion nurses are better with the stick. Dr Grimes’s infusion nurse, she of the “oh, at least you get new boobs” comment, has a bit of the palsy and visibly shakes. So Shakey comes at me with the butterfly needle, and all I can think is please please please let her get it on the first try, and where is that cocktail waitress, anyway??

Ok, back to business. The port looks like this, but of course it’s under my skin. The thick white tube on the right is sewn into my jugular vein, and the purple part on the left lies just under my skin on the left side under my collarbone. And yes, you did read that right: the port’s tubing is sewn into the jugular vein. That’s how it can empty all the various drugs and dyes into the big gun for distribution throughout my body. When you’ve got an important distribution job to do, the jugular is your guy. Creepy, yes, but very effective and efficient.

So the port is under the skin tied into the jugular, the needle pierces both skin and port membrane, and a thin tubing is attached to the needle with a clamp and a connector cap that attaches to the bag of medicine. It’s maybe 8 inches long, and when I’m not using it, I tuck it in my shirt and go on about my day.

My supplies look like this:

Flashback to this past summer, when I had the first round of IV antibiotics at home. The supplies looked like this:

Much more complicated. I prefer the current version; downsizing is good.

The round balls in the new supplies photo are the “bags” of Cubicin, and I have saline syringes and heparin flushes. Gotta flush the port with saline before and after the drug infuses, to keep everything flowing, then shoot in the heparin after the infusion, to prevent any blood clots in the port’s nooks & crannies or in the tubing or God forbid in my body. The heparin is considered a lock, to keep the clots out.

Here’s the “bag” of Cubicin as it starts infusing. It’s chubby and round with a rod down the middle that helps indicate when the drug is all gone.

I can hold it in the palm of my hand while it’s attached to my tubing and while it flows into my veins. I can set it in my lap and read my book, or take it with me to drive carpool. If I didn’t still have the dreaded JP drains and were carrying my normal purse instead of the sling bag, I could stick it in my purse and tuck the thin tubing aside and go shopping. Sigh. That’s another life. Never mind.

This drug infuses in half an hour. Once a day. I think I’m in love. Last time I did vancomycin and cefapim via IV, it took nearly 4 hours to infuse twice a day, and I was stuck with the IV pole. This is way better, despite the utter lack of shopping. 

As it infuses, the bag starts to collapse and the rod on the inside becomes more prominent. One of the infectious disease nurses said that while the drug is plentiful, the rod looks pregnant, and as the drug depletes, the rod gets its figure back. Too bad the figure-reclaiming doesn’t work that fast in real life.

If you’re wondering how this little bag of wonders works without gravity (i.e., hanging from a pole), I can tell you: it’s pressure-driven. Ingenious. It also has a filter on the tubing that prevents any air bubbles from traveling through the tubing and entering my bloodstream. Last time around, we were warned against air bubbles as if they were the devil incarnate, and I stared at the drugs coursing through the tubing, waiting for my heart to explode, and not from happiness.

One day, when this “cancer journey” is finally over (it will end one day, right? right??), I can envision my heart being so filled with happiness that it might explode. One day.