The SCAR Project

duggal.com

Listen up, people: this is really important.

If you’re not familiar with The SCAR Project, I am happy to introduce you. I’ll be honest: there are some photos that may disturb you, because the photos show “large-scale portraits of young breast cancer survivors,” and present a “raw, unflinching face of early onset breast cancer while paying tribute to the courage and spirit of so many brave young women,” according to the project’s website. While the photos are indeed raw and unflinching themselves, I challenge you to man up and look at them anyway. They’re very tastefully done, no train-wreck gore or gratuitously scary stuff. Get past the cover model who is visibly pregnant and sporting a single-mastectomy scar on her chest. Her belly is beautiful, as it contains a newly forming life, and her scar is a badge of honor.

The project’s acronym stands for “Surviving Cancer. Absolute Reality.”

I like that little double entendre. Well, let’s be honest: I like most double entendres, but this one in particular speaks to me. As does the project’s media slogan: “Breast Cancer Is Not a Pink Ribbon.”

And how.

one of the many "pink ribbon" cards I've received

I’m all for the pink-it-up attitude that the Susan G Komen for the Cure and other organizations espouse. While I think it’s a little weird to see the pink ribbon and “awareness campaign” on products ranging from golf balls to toilet paper and all parts in between, and while I question how much all this awareness really does to actually fight the dreaded disease, I am grateful that Suzy Goodman Komen was the kind of woman who wanted to make a difference, even though she would not be a survivor. Because of her and her family, most notably her sister Nancy G. Brinker, breast cancer went from a shameful secret shrouded in secrecy to the glamour disease du jour.

I’m not interested in getting into the debate in the BC community over how much good the Komen organization has actually done. I completely understand the frustration felt by women with Stage IV BC over the lack of research done on their end of this vicious disease. According to Brinker’s book, Promise Me, the Komen organization has contributed some $1.5 billion to research and community programs, but it seems that precious little reaches the metastatic BC demographic.  I understand, and I struggle to see the connection between awareness and finding a cure. Regardless of funds and allocation, however, I’m grateful that in the 25+ years that Komen has been around, the global breast cancer movement has worked to eradicate the shame that used to accompany a BC diagnosis.  The SCAR Project is following suit.

As I’ve mentioned before, Bestselling author Barbara Delinsky also lost a loved one to BC. Delinsky was 8 years old when her mom died from BC, yet according to her book Uplift, she was in her teens before she learned that her mom had breast cancer, and it was years before her dad could say cancer, and even longer before he could say breast.

One of the women featured in Uplift, Elinor Farber, lost her mom to BC, too, and said when her mom was diagnosed 45 years ago, there were no mammograms, and mastectomies were just short of a butchering. Farber reports that her mom lived more than 30 years after her surgery, but never once spoke of her condition. “Mom endured everything without the support of friends and neighbors, who were not told. My sister and I were both told of my mom’s condition in hushed tones, and we were sworn to secrecy.”

We’ve come a long way.

But not until The SCAR Project have people been forced to see–I mean really see–the impact of breast cancer.

The project focuses on women aged 18 to 35, a demographic in the breast cancer community that is not well represented. Although it’s estimated that more than 100,00 women younger than 40 will be diagnosed with BC this year, and although BC is the #1 cause of death of women aged 18 to 40, the younger members of the pink ribbon club don’t get a lot of press.

When I was diagnosed last April at the tender young age of 40, I quickly learned just how little press we young-uns get. All of the literature I received from my darling breast surgeon featured grey-haired grannies. Not a single image in any literature showed anyone within 20 years of my age. My darling breast surgeon, who is younger than me, agreed that the lit needs a major overhaul, and she teased me about being the one to get the ball rolling. Sure thing. Now that I’m finally off the antibiotics and over the post-mastectomy infection, I’m on it.

Sadly, I’m too old for The SCAR Project; otherwise, I would sign up right this second to be a SCAR model. Well, not right this second but after living in the gym for several months and eating nothing but salad. No dressing. Kidding. After countless doctor visits and multiple hospital stays, I’ve long shed any modesty about disrobing, and I’ve been known to show my scars in all their glory to anyone who asks. The nurses in my various doctors’ offices don’t even offer me the paper gown anymore, because they know I won’t use it.  Save a tree, people; I’m over it. In fact, I may contact photographer David Jay and tell him I’m overage but have an abundance of scars. Way more than the women on the SCAR website. No that it’s a contest or anything.

dailymaverick,.com

Like Komen, the initial goal of The SCAR Project was to raise awareness and money. But it became so much more. Jay explains that he was not prepared for something so beautiful:

“For these young women, having their portrait taken seems to represent their personal victory over this terrifying disease. It helps them reclaim their sexuality, identity, and power after having been robbed of such an important part of it. Through these simple pictures, they seem to gain some acceptance of what has happened to them, and the strength to move forward with pride.”

Yeah! Go girls! This model from The SCAR Project looks like the epitome of a fierce survivor. While no doubt she’s battle-weary and has seen things and faced trials she never thought possible, the mere fact that she participated in The SCAR Project tells me that she is indeed moving forward with pride.

lipmag.com

I’m not quite there yet, personally, with reclaiming all that has been lost to my cancer, but after seeing the women in The SCAR Project, I’m a whole lot closer.


The Columnist

I had hoped to write about this Saturday, before it began to seem like old news, but life conspired, and then this not-yet-old story was preempted by the sad news of my aunt’s death yesterday.

We need to focus on happier times, for sure.

Like this past Friday.

We gathered to celebrate the blessed birth of The Rajah.

Happy birthday, Rajah!

Some have asked me the significance of The Rajah’s nickname. He’s my fiercest opponent in Words with Friends. He’s the king of  playing “qi” for a bazillion points. I fired back one time with the word rajah, which he promptly contested. The guy who rings me up by playing “qi” is balking at rajah. Priceless. Thus, my Runnin’ Buddy’s hubby will forever more be known as The Rajah. Just as his personalized golf towel says, The Rajah rules.

We commandeered the patio at El Tiempo Friday night for margaritas and fajitas and to celebrate The Rajah. A good time was had by all. The weather was beautiful and unseasonably mild, as it should be for The Rajah; the drinks were plentiful; the food delicious; and the company quite entertaining. It was a bit of a do-over for celebrating the Rajah; last year on his special day, I was a bit busy getting sliced & diced in the OR.

I made a few new friends and reconnected with some existing friends. (Don’t want to call the “old friends” because I was the oldest in the crowd. Boo hiss.) 

Pete, Amanda, and I shared more than a few laughs on the patio, and while The Rajah was holding court on the other end of the table, we made our own fun.

I was adamant that this celebration belonged to The Rajah alone, but my Runnin Buddy and Amanda conspired to carve out a bit of time to commemorate my 1-year anniversary of the mastectomy.  Very thoughtful, girls. Thank you, thank you very much.

Happy cancer-free day to me!

My own cupcake, complete with pink-ribbon-style frosting and a gigantic gumball on top. How much I love that is hard to express. The little umbrella was compliments of my new friend Scott, who had explored the oh-so-manly joys of drinking a pina colada after golf that afternoon. He’s secure enough in his masculinity to have consumed another one, in between the Miller Lights, at El Tiempo. The Rajah cleverly switched Scott’s ringtone to The Pina Colada song, so every time Scott calls The Rajah, that fantastic and timeless song will play; it doesn’t get much better than that. I’d forgotten about the line in the song in which Rupert says “I am into champagne” so definitively. I have a new appreciation for that little ditty.

So what about the columnist? This, my friends, is where my Runnin Buddy tried to get me trouble, yet again. Just as she did recently at the Jimmy Buffet concert when she spun a quite-believable tale to an innocent bystander in the beer line about me being an on-air personality, she spun another tale at El Tiempo to another unsuspecting bystander.

The topic of this little blog came up, and Amanda’s husband Billie was uninitiated in all things Underbelly. Somehow he interpreted this little blog to be a column (any idea how that happened, Staci??), and innocent bystander Chad got the impression that this little blogger is actually a columnist for some publication called Time Magazine. Hmmmm.

To Chad, I hope you were so knee-deep in El Tiempo’s famously potent margs that you don’t recall being duped. That really wasn’t nice. On behalf of my Runnin Buddy, I apologize.

To Billie, I offer no apology but proof that you are indeed “column-worthy” and today is your lucky day because here you are, smack dab in the middle of the Columnist’s column. Hope you’re not too disturbed by the paparazzi that is sure to follow your mention in the column.

And BTW, Billie, hope you now know not to challenge me to drink a tequila shot. ‘Cause I’m gonna do it. But only if it’s Don Julio 1942, which as you learned Friday night, ain’t cheap!

Happy Birthday, Rajah! And congrats to Billie for becoming column-worthy. Hope it’s all you expected it to be, and maybe a little more. Kinda like a shot of Don Julio.


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.


This little piggy…

I know I teased you yesterday by mentioning the new, custom logo for this little blog but not unveiling it until now. I’d say I’m sorry but it would be insincere. There are so few things over which I have control on this “cancer journey,” so when I can control something, like the timing of an unveiling, I will do it and do it unabashedly.

But now, without further ado, I give you the official logo of The Pink Underbelly. 

There’s a lot of meaning contained in this little piggy. It’s a visual representation of the long & winding road that is my “cancer journey.”

The pig carries weight because it’s pink, the international visual cue of breast cancer. But more importantly, because pigs are very popular and prevalent animals in our house. Macy has loved pigs since a very young age and has fueled that love affair for all of her 9 years. Most little girls love horses or kittens or teddy bears, but my independent-thinking, devil-may-care girl marches to her own beat (usually loud and heavy-metalish. No Justin Bieber or Miley Cyrus for her). Her love of pigs is so all-encompassing that several friends of mine have presented her with pig trinkets, from pens to tiny flashlights to coffee mugs, that they’ve seen out & about while doing their daily work or running errands, and when they see a pig, they think of Macy. Love that.

David, my art consultant for this little blog, put a lot of thought into the pig’s tattoos. Since he did the heavy lifting, he should get to explain it:

“The angel wings are for Barb (cuz I believe in them), but I also added a MOM heart (cuz you don’t).  The USDA bacteria free logo is to celebrate your being taken off antibiotics.  The breast cancer awareness ribbon is frayed on the ends to represent your struggle.  The barbed wire (also a Barb reference) is just to be a bad-ass.  The slope-intercept formula, I added for sentimental reasons.”

Editor’s note: Barb is my mom’s name, and David knew her before cancer snatched her away from us and so callously extinguished the bright light that she was. Anyone who knew her loved her, and David is no exception. That he chose to honor her makes my sad heart smile a little, because it’s just so stinkin’ unfair that she’s not here with  me, especially now that I’m in the winner’s circle after the brutal battle that was Nancy vs. Breast Cancer, and then because one brutal battle wasn’t enough, Nancy vs. Mycobacterium. One thing my sweet mama loved was a party, and being the consummate hostess-with-the-mostess, I think she would have thrown me one hell of a victory party, with enough homemade coconut cream pie for everyone.

Because I’m feeling generous, and because my mama would want it this way, I’ll share her coconut cream pie recipe. If you want it, let me know. If you can figure out how to make her crust taste like she did, definitely let me know, and I will be at your house with a fork. If you need help with the slope-intercept formula, talk to David. I had a lot of trouble with that one, back in the day.


Dumb day

My blog friend Barb writes about her life on a charming island in Maine, where she makes homemade sourdough bread and the most beautiful jewelry with handmade beads and where her husband is a lobster fisherman. Oh, how I wish they were my next-door neighbors. I love her jewelry creations, and I could eat lobster every day and not complain. Ditto for the homemade bread.

Barb recently wrote about a dumb day in which it was drizzly and grey and she wasn’t very productive in the studio. It must have been contagious, because her mother later remarked that it was a dumb day for her, too, and Barb’s hubby said the exact same thing when he returned from fishing. I liked the phrase, and have decided to borrow it.

I thought today was going to be a dumb day, for many reasons. First was waking up with a sore spot in my back. Must have slept in a weird position, because it sure didn’t hurt when I went to bed. I’m in a rotten mood because things still aren’t sitting right with me from Mother’s Day, and I can’t lift my black cloud until the matter is put right. My kids had a squabble right before it was time to leave for school carpool, and if there’s one thing that can ruin my morning real quick, it’s squabbling kids. My runnin’ buddy is playing tennis instead of joining me at the gym for cardio, and my other gym rat friend, Melissa, has to be at her kids’ school for a fun run, which frankly, doesn’t sound like one bit of fun to me. So that leaves me to face 45 minutes of cardio without my girls to talk to, which means the time will drag on and on. I’ll have to resort to relying on Nelly and Justin Timberlake for companionship. If only my ancient iPod had video capabilities, I could look at this to distract me. 

After the gym, I have an appointment with Tammy, my beloved lymphedema specialist, to continue breaking up the scar tissue under my belly incision from The Big Dig. I have several spots that are about the size of a marble under my skin, and they must be obliterated. She uses a combination of massage, her Hivamat machine, and some firm pressure to make this happen. It alternates between being quite pleasant (the massage) and weird (Hivamat) and just plain awful (firm pressure). Luckily, I adore her and we have lots of good chats while she’s doing her thing. She moonlights as a therapist, at least for me, and she knows a lot of my innermost thoughts & feelings. Getting those out and leaving them in her little studio always feels good.

Add in a trip to the grocery store, one of my most dreaded chores, and having to spend some time today going through medical bills and fighting BS regulations, and it seemed destined to be a dumb day for me. Some days are like that. But lo and behold, hope arrived in the form of an email from my friend David. Y’all will remember him as the creative genius behind the illustrated story of the Drs S.

Well, he’s rescued me from my dumb day by announcing that he’s created an official logo for this little blog. It’s cute and creative and fun and full of meaning. I will unveil it in a separate post, both to keep you dear readers on the edge of your seat and also because it would be wrong, just plain wrong to put this little gem on the same page (screen?) as a long, boring, and pitiful description of my dumb day. Or what seemed destined to be a dumb day but has been rescued. Thank you, David.


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.

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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.

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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?


Preach it, GB Shaw

Editor’s Note: There’s a glitch on WordPress that is hiding my hard returns, so this is one long post without the usual breaks in text to give the eye a rest. Apologies.

“The people who get on in this world are the people who get up and look for the circumstances they want, and, if they can’t find them, make them.”—  George Bernard Shaw

Love this quote. Love GB Shaw, too. Apparently he didn’t like the “George” and refused to use it, personally or professionally. That’s why I call him GB Shaw.

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He’d be a dapper looking fellow if he’d have done something about that mess of facial hair. I’ve never been a fan of the facial hair, on men or women. Just not my thing.
He certainly was accomplished, though. Born into a lower-middle-class family in Dublin in 1856, he certainly could have fallen by the wayside or become a failed corn merchant but successful drunk, like his daddy. It’s said that his daddy had a raging drinking problem and a serious squint (although not related, perhaps). Here’s a useless but interesting bit of trivia: Oscar Wilde’s father, a famous surgeon, tried to fix Mr Shaw’s squint, but failed. Either he wasn’t that great of a surgeon, or it was a truly serious squint. If only my Drs S could have gotten their hands on him. No telling how fine-looking he would have become after they worked their magic.
GB Shaw is noted as a playwright, and an accomplished one at that. He also dabbled in politics and reform for the masses. His Fabian Society tried to bring socialism to Great Britain but failed. The Society did eventually become the famed London School of Economics and led to the birth of the Labour Party. Neat, huh?
More importantly, he’s also a font of inspirational quotes, like the one above. After having several comments on my recent post about how ya just gotta “keep on keeping on” when going about this “cancer journey,” it got me thinking about how easy it would be to lie in a heap and say poor me. And I guess a lot of people do that. GB Shaw would be very disappointed.
Look, nobody wants a cancer diagnosis, whether it’s in the breast or the lung, the colon or the skin. I could write for days on the myriad ways having cancer wrecks your life, whether physically, emotionally, financially, or more likely all of the above. But once that pathologist confirms the malignancy and the doctor delivers the diagnosis, rolling over isn’t an option. Giving up and giving in doesn’t get the job done.
I haven’t been tempted to give up this week, but the thought did cross my mind as I found myself mired in nausea all week long. Sometimes this happens — I’m going along just fine, taking my antibiotics twice a day every day (for 254 days, but who’s counting) like a good girl, and wham! out of nowhere is the all-day morning sickness. I’m not doing anything differently, haven’t added any weird vegetables or roots to my meat-avoiding diet. Don’t lecture me about the beets; those are a mainstay and I like it that way. Don’t care if it grosses you out to see them on my plate–look away (Macy).
By no fault of my own, I’m suddenly hit with the kind of stomach upset that makes me think long and hard about the wisdom of carrying a barf bag in my purse. My sweet infectious disease doc is immune to my perennial question of how long will this drug therapy go on, and I don’t even ask him any more. Love ya, Dr Grimes. His nurse, Rhonda, gave me a glimmer of hope on the phone when she said he might knock the abx down to once a day, but alas no deal. Instead, he gave me a prescription for Zofran and said take that and eat some crackers.
So what’s a traveler on the “cancer journey” to do? Slog away, day after day. Put one foot in front of the other. Just keep swimming (Dory). Keep on keepin’ on. Just Do It. And any other clichéd truism you can think of. You do what you gotta do to get through the day, then get up and do it again. Some people also meditate. Some people pray. Some people fret. Some probably do a combination of the three. But you gotta do something. Inertia has no place along the “cancer journey.”