I’m trying really hard…
Posted: August 17, 2011 Filed under: breast cancer, cancer fatigue, drugs, infection | Tags: cancer battle, post-mastectomy infection, Power Port, psychological effects of cancer, reconstruction fears 20 CommentsI’m trying really hard not to be discouraged by the latest bevy of bad news. Picture me squeezing my eyes shut as tight as they will go, turning a bit red in the face, and willing it to happen. Don’t. Get. Discouraged. Having my surgery postponed and being smacked in the face with the idea of another post-surgery infection is not my idea of fun. Being told we need to keep the port that I’ve been so looking forward to having removed was equally not fun. I’d actually begun counting the days until saying adios to the port. It’s served me well, but I’m so so so ready for it to be gone. I could almost imagine sleeping comfortably on my left side again, with no kink in the line that’s sewn into my jugular vein. I could picture myself in a sundress, sans the alien-looking bump with prongs under my skin. But alas, it’s not to be. Once again, the hits keep coming, and I have to suck it up and deal.
I’m trying really hard. So hard that I just wrote a beautiful post, if I do say so myself, about the effort. The words were flowing and I was thinking, “This is going to be good.” Then promptly lost it. All of it. Instead of “save” I hit “cancel.” And with one keystroke, it’s gone. I will attempt to recreate, but already know it won’t be as good.
I’m trying really hard to remember that while yes, being diagnosed with cancer–at a young-ish age no less–is bad, plenty of women have it worse than me. There are lots of rarer, more-aggressive forms of breast cancer than mine, and the battles are many. While my recurrence odds are low, the mere fact that I have odds reminds me in a terrifyingly real way that there’s always a chance that it will come back. As another fellow cancer chick so eloquently put it: “It’s losing your innocence all at once, rather than in bits and pieces over a lifetime.” Being diagnosed with cancer at a young-ish age is bad enough; fearing recurrence is even worse. Then you factor in all the other junk that comes with it, and before long it’s like inviting one person to a party and having them bring a village of savages with them. They drink all the good booze, hork down the delicate hors d’oeuvres, manipulate the conversation, interrupt with Buddy-the-Elf-esque burps, wipe their dirty mitts on the pretty towels in the guest bathroom, spill red wine on the beige carpet, and change the tinkling background music to heavy-metal hair bands. The cancer crew is most unwelcome. And yet they overstay their welcome in myriad ways.
I’m trying really hard to not freak out as the possibility of infection scares the tar out of me. There’s a kindly gatekeeper in my brain that shields me from the harsh memories of the battle royale that occurred last summer between my war-torn, ravaged body and mycobaterium fortuitum. While of course I remember being there and going through that, it’s as if I’m watching a movie of myself enduring that hell. It’s a gauzy, soft light, much like the lens filmmakers use to shoot a scene with an aging star. The gatekeeper that usually protects me from windexing the lens to see it unfold clearly, in all its replayed gore, is off duty. What I want to do it pack up all those horrible memories of the events last summer and put them in a box and leave them on the side of a deserted highway. Then I want to put the pedal to the metal, burn rubber, and beat feet away from them, without even once glancing in the rearview mirror. I want to find myself on a pastoral country road, with tall, leafy trees and big puffy clouds–somewhere far, far away from any hint of cancer or infection.
I’m trying really hard to be calm and not freak out about the possibility of infection. Of course I know that anytime one goes under the knife, the chance of infection is there. But rather than a distant “maybe,” infection is a real thing for me, and I have a visceral reaction to the idea of going through that again. And while the preventative antibiotics are just that — preventative — I find myself with real fear instead of comfort. The prophylactic effect should make me feel better, but instead I feel worse. There is a very fragile peace that was brokered between my body and the bacterium, and peace without the threat of war is meaningless.
I’m trying really hard to not gag on the antibiotics. I dutifully swallow the two pills that are my front-line defense against the wily bacterium that may want to set up shop again. Those bacterium were evicted after their long, comfy stay in my concave chest wall, and they may well want to reestablish their presence. So I swallow the pills, knowing full well that soon, very soon, I will feel like utter hell. The all-day nausea, the roiling queasiness, the lost tastebuds, and the sore throat that were my constant companions for 267 days are making a return visit. Back by not-at-all-popular demand is the diligence required in spacing the drugs 12 hours apart, and the taking them on a stomach empty enough to allow them to do their thing but not so empty as to make me puke. Instead of feeling comforted by the preventative drugs, I’m scared.
I’m trying really hard to think happy thoughts. Right now I’m remembering a highlight of our recent vacation, in which we were all in the ocean battling giant waves as the tide turned. These were seriously bitchin’ waves, a good 8-feet tall, and we were in the thick of them. I was ecstatic that the water was warm enough for me, a Gulf Coast chicken; that the waves were so accommodating for body surfing and frolicking; and most importantly that I was there to experience it. As I came up from being tumbled ass-over-tea-kettle by a giant wave, Macy overheard me say that that wave just bitch-slapped me. She misheard me, though, and thought I said that the wave had “fish-slapped” me, and she wanted to know if it was a flounder, because they tend to be especially evil. I’m gonna smile at the idea of being fish-slapped, even though I feel like crying instead.
I’m trying really hard to focus on how far I’ve come instead of how many setbacks I’ve had. The race is long, yet I’ve continued to put one foot in front of the other. Keep on keepin’ on. Several people have tried to help along the way by telling me that God only gives us what we can handle, and that he must think I can handle a lot. Thanks, but zip it. I don’t believe it, and I’m not comforted by that. While there are a host of helpers along the way, there’s only one person involved in this battle, and that’s me. No one is doling out the hard knocks in an insane game of “let’s see if this will make her crack.” It’s random, it’s uncontrollable, and it’s life. It’s life, and my job is to keep on truckin.
I’m trying hard to remember that this is temporary. As my wise survivor sister Jenny reminded me countless times during diagnosis, surgery, and treatment, this is temporary. This mess won’t be at the center of my life forever, as difficult as that is to imagine now. The ennui I feel today won’t always prevail. It’s easy to get caught up in the quagmire of unpleasant things that have come my way. I can see just how easy it would be to slip into the loving arms of pills, booze, rage, and self-pity. Name a vice, any vice; I’ll take it. It would be so, so easy to say I’m done, I’m out. Let the vultures pick my carcass clean because I give up.
I’m trying hard to walk on the sunny side of the street, as my sweet mama always advised. There are some dark and ominous alleyways around me, but I will seek out the sun and pound the pavement until all this madness is over. Those who have been on this “journey” before me assure me that one day it will all be a distant memory. I know this is true, yet it seems impossibly far away today. One day I will look back at all this and think, “Man, what a shit-storm that was.”
I live now
Posted: May 26, 2011 Filed under: breast cancer, cancer fatigue | Tags: breast cancer, cancer battle, champagne, clinical trials, Hodgkins Lymphoma, kids dealing with mom's cancer, MD Anderson, psychological effect of cancer, Ralph Waldo Emerson, recovery, survivor 11 Comments“With the past I have nothing to do; nor with the future. I live now.” — Ralph Waldo Emerson
I live now.
Yes indeed.
I’m digging that quote. Today, as most days, I woke up and stole a few minutes before hitting the ground running. I like to check my email first thing in the morning, and see what’s what before I start my day. I have several cancerbabes in blogland whose musings I follow. I don’t know any of these women personally, but we share a commonality that is cancer, and that tends to make friends from strangers faster than anything, including hard liquor.
One of my cancerbabe friends posted some really, really good news on her blog today, and it was the first thing I read this fine morning. Long story short she’s a 28-year-old dealing with Hodgkin Lymphoma who left her home on the East Coast to spend some time in my lovely H-town at MD Anderson to endure a grueling clinical trial.
Sounds pretty awful, right? As most cancers are, whether big or small, early- or late-stage. Cancer is just plain awful. But my cancerbabe blogger friend had good news to share about her just plain awful cancer: the clinical trial worked and she’s in partial remission.
Hooray & hallelujah!
Another strike against the many-faceted and much-dreaded disease that is cancer.
I read the rest of my emails with a smile on my face, and as I hauled myself out of bed, that smile stayed with me. I believe in celebrating every little bit of good news that comes our way, especially when dealing with the dreaded C. Nope, I’m not opening champagne at this early hour, before even getting my little darlings out of bed, preparing their breakfasts, making their lunches and seeing them off to school. Thought about it, but resisted. I’ve learned the hard way that bad things happen to good people, and to counteract that hard truth by celebrating all the good things that come along. Sometimes with champagne, but sometimes not.
It’s easy to get caught up in all the bad things about cancer. And believe you me, there are many, many bad things. Watching my sweet, vivacious, and much-beloved mama be eaten alive, literally, by uterine cancer was horrific. Knowing that I would have to live the rest of my life without hearing her big belly laugh, without her all-knowing guidance in raising my own kids was b-a-d bad. Seeing her ravaged body become ever more frail day by day left me wondering how much worse could it possibly get. Because as bad as it is, there’s always more. My BFF Ed tried to tell me that. He knew, from watching his dad die of pancreatic cancer. I didn’t want to believe him, and childishly clung to the idea that it was as bad as it could possibly be. But it wasn’t, and no matter how hard one “fights,” once cancer gains a stronghold, it’s devastating. No matter how much one wants to win the “battle,” there’s no guarantee.
If anyone on this Earth deserved to win her “battle” it was my sweet mama. Her own mama died when she was 13, leaving her to raise her younger sister, who my mama had to work hard to forgive for usurping her “I’m the baby” spot in the family line-up. They lived on a farm and life was hard. She was the only one of her 4 siblings to graduate from college, and she did it in 3 years.
She was president of her sorority, which is how she scored this fetching necklace, and I’m sure she bossed her sorority sisters into next week. Determined to make her mark in the world, she became a teacher, and did it well. She married into a tight-knit Greek family who didn’t necessarily welcome “foreigners,” but she won them over. Every last one of them. Even the stubborn, crotchety old ones. She raised two kids in a most-loving and uber-secure environment. Everything she did, she did it well and with such love & warmth that people were drawn to her. She made this world a better place.
Yet, after a multi-year, multi-stage “battle,” cancer claimed her as its own. Not fair. Not by a long shot. But fairness has nothing to do with winning the “battle” against cancer. So much of it is luck and circumstance. So much of it is out of our control. That’s a tough pill to swallow for a Type A bossypants like me.
And that’s exactly why I live now.
Cancer steals so much from us. Big things: health (duh), time, innocence, body parts, hair, self-esteem, a good night’s sleep, healthy body image, money, freedom, time, faith, security. Small things: major wardrobe issues, range of motion in yoga class, being able to look in a mirror without wincing, missing important events, becoming fearful instead of being carefree.
The past is gone, and no matter how hard you may try, you ain’t gettin it back. You can’t change it. The future? Good luck with that one. My theory is you gotta work hard, bear down, be the person you most want to be, and hope for the best. Hope that you’ll avoid the evil lottery that decides who will be stricken with cancer. Keep on living a good life and doing all the right things (antioxidants, splurges in moderation, wholesome foods, regular check-ups and exercise, blah blah blah) but don’t for one second expect those things to earn you a free pass. Because cancer strikes no matter what.
So I live now.
Thea Sophia
Posted: May 15, 2011 Filed under: breast cancer, cancer fatigue, food, kids | Tags: avgolemono, children and grief, chocolate cake, funeral, glioblastoma, homemade cakes, James Coney Island, Kahlil Gibran, loss and grieving, The Prophet, tiropitas 30 CommentsI can’t believe she’s gone. Even though I knew it was coming, my brain doesn’t want to process it, and my heart sure doesn’t want to accept any more bad news.
My Aunt Sophia died early this morning.
My heart hurts. A world in which Sophia Hontasis Katopodis doesn’t exist is just wrong. Just plain wrong.
Cancer claims another victim. This time it was a Stage IV glioblastoma. Man, I’m so sick of cancer.
Sophia was an incredible woman. The best Greek cook ever. Entertaining was her forte, and she did it up right, every time. She loved having her family gathered around the table for a feast, and every meal was indeed a feast. From the elaborate holiday meals to burgers by the pool, the bounty of Sophia overflowed.
I spent many hours in and around her pool, and when it was time to congregate around one of her two round umbrella tables to eat, it was always good. Not just ok but really good. She was famous for saying, “Come on over to swim. We’ll just have hot dogs.” Those who knew Sophia know that “just” was never part of her culinary plan. “Just hot dogs” meant steamed buns, homemade chili, shredded cheese, diced onion, and homemade ketchup for crying out loud! Good luck finding a better hot dog than hers. Not even at James Coney Island, a Houston institution. Fellow Greeks Tom & James Papadakis started that institution in 1923, and Sophia started her own version in her own home. While she didn’t churn out 30,000 dogs a day like the Papadakis brothers, she knew how to feed her friends & family better than anyone I’ve ever known.
To say that Sophia was a good cook is akin to saying that birds are good at flying. It was so much a part of her, of who she was and the things that were most important to her. Her husband, my Uncle Bill, could never match her in the cooking skills, but he was a great host, and so they made a fantastic pair. Uncle Bill could not rest until his guests had something to eat and/or drink.
Everyone in the neighborhood knew Sophia, and she continued to add new friends to her already-bulging group, well into her 80s. One of her neighbors befriended an Irish guy from work named Mickey. Mickey and his wife Jean would come to Houston a couple times a year, and they got to know Sophia. Mickey & Jean brought their kids to Houston, and of course Sophia had a pool party and laid out a fantastic meal. My kids had a blast getting to know Ian and Aoibhinn. Leave it to Sophia to have friends around the globe who loved hanging out in her backyard.
One of the most amazing things about Sophia was a decision she made a long, long time ago. Uncle Bill was married to a woman named Ann, who was much beloved by everyone. This was before my time, so I never knew Ann, but have heard this story many, many times and continue to be blown away by it.
Ann & Sophia were best friends. Young Greek women who walked the fine line between preserving the way of life brought over from the old country while assimilating to the American way. Ann and Bill had 4 kids, 2 boys and 2 girls, and were happily raising a family together. Tragedy struck, as it is wont to do, when Ann contracted an illness that proved to be uncurable. The story I’ve always heard was that it was Mediterranean anemia, and in the early 1950s medical care was not what it is today, and Ann knew she was not going to survive her illness.
Sophia was unmarried, and Ann asked her best friend if she would please marry Bill and raise her children after she died.
And that’s just what Sophia did.
She took on 4 kids ranging in age from teenager to preschooler, and she became their mama. She and Bill were married 40-some years when he died 11 years ago. A fiercely independent widow, she missed her husband but lived her life to the fullest. She treasured her family, and being surrounded by her kids and her grandkids was one of her greatest joys.
Sophia was the kind of mama who cooked from scratch, ran a ship-shape house, and sewed her daughters’ wedding dresses. She was amazing.
When my own sweet mama joined the Katapodis family, Sophia took the non-Greek under her wing and taught her some things, including the art of Greek cooking. That my mom, a “white woman,” (aka non-Greek) mastered that art and was every bit as good as the ladies from the old country was a huge source of pride. For everyone involved.
One of the best things Sophia taught my mom to make is tiropitas. The recipe itself is quite simple, but the filling and folding of the buttery, flaky triangles is something that requires patience and practice. My mom exercised both, and her tiropitas were every bit as good as Sophia’s. My dear aunt would make a batch, put them in a big tupperware in the freezer, and give them to me to have on hand for dinner parties or casual entertaining. What a gold mine I had, tucked away in the freezer. Knowing that I could pull out a few or several dozen, put them on a cookie sheet and bake at 350 for 15 minutes was something that filled my soul.
Another one of Sophia’s specialties is Avgolemono, which is Greek chicken soup. I was raised on this soup, and hers was terrific. In Greek, “ovgo” means egg, and “lemono” means lemon, so you can guess where this is going. Instead of a bland-ish chicken soup with noodles, Avgolemono is thick and lemony and full of rice or broken spaghetti. Sophia made me several pots of it when I was recovering from my mastectomy, and because she knew I didn’t eat meat, she’d put the chicken on the side, just in case I changed my mind.
Sophia was suspicious of anyone not eating meat, and one of my favorite Sophia stories concerns just that. We were going to her house one time for dinner, and while discussing the details on the phone she said she was making pork loin or whatever, and realized that I wouldn’t eat it. She said, “Oh, yeah, you don’t eat meat. I’ll make you some chicken.” I said, “Uh, chicken is meat.” Her reply? “No it isn’t, it’s a bird.”
She was also suspicious of sunscreen, and I think she thought it was a made-up product. She’d been out in the sun by her pool in Houston for 40 years, and never used sunscreen. She also had the most beautiful skin. Period. No lines, no wrinkles. No fair. 
I learned to swim in her pool when I was tiny. She taught all the kids in our family to swim. She loved the pool and was in it all the time. All the kids loved her pool, because it was huge and it had a diving board. One of the family stories often repeated is the one about me crawling on the diving board as a wee child, before Sophia taught me to swim. In typical me fashion, I got too close to the edge–I pushed the envelope even then, before I knew what it meant to do that. I fell in the deep end, and my brother John jumped in and saved me. Good times, good times.
Sophia loved my kids a lot, and was always doing something sweet for them. She and Macy had a mail correspondence for a while, mailing things back and forth. When it started, Macy was 3 and her mail consisted of scribbles on a piece of paper.
Sophia was always getting stickers and note pads in the mail from charities she supported, and she loved to pass the “junk” as she called it onto Macy. In fact, Macy has a whole drawer in her desk full of Sophia’s “junk” and she treasures it. Every time we saw Sophia, she had a bag of “junk” for Macy. 
Occasions like Halloween and Valentine’s Day were another opportunity for Sophia to stay connected with Payton and Macy. She always sent a card to them for these lesser holidays, along with a $5 bill.
She gave great gifts, and my kids always looked forward to opening their birthday or Christmas gifts from Aunt Sophia.
I don’t remember exactly what this gift was, but as evidenced by the look on Pay’s face, his Aunt Sophia scored.
What I love about this photo is not the intake of breath by Macy as she prepared to blow out her birthday candles, but the pair of hands on the right. Sophia’s hands. She had a font-row seat to Macy’s birthday fun.
Sophia loved to bake, and she made my kids an Easter cake each year. Being the thoughtful and overachieving person she was, she would make individual cakes.
The decorations were always on the fancy side, and the cakes were always scrumptious.
Nice smile, Pay. I’m guessing he was impatient to dig into that fantasticly-yummy-looking cake.
After the Easter cakes were consumed, there would be an egg hunt, and Sophia bought the good candy. No jelly beans for her; she favored chocolate. And lots of it. Same for Halloween. She made individual goodie bags full of the good candy for the trick-or-treaters who rang her doorbell. Lucky kids.
My kids weren’t the only ones who loved her cakes. One year Payton requested her special chocolate cake (with tons of chocolate frosting) for his birthday, and our friends Laura and Russ celebrated with us. Russ fell head-over-heels for Sophia’s cake, and when his own birthday rolled around, he requested a chocolate cake from Sophia. Of course Sophia was happy to oblige.
Sophia was so generous. One time at her house, Macy mentioned that she liked a particular plant in Sophia’s yard. She insisted on giving Macy a cutting,
and it wasn’t a small clipping. When we lived in Austin, before either Payton or Macy was born, she sent me several Hefty bags full of plants that had been dug up at her house. She knew that our new house in Austin had a huge yard, and instead of throwing the Monkey grass out, she passed it on to me. She did the same with her blue plumbago once we moved into our current house.
Glioblastoma is a particularly nasty form of cancer, and it just makes me sick that this is what Sophia got. It’s the most aggressive form of brain cancer, which is bad enough, and it’s very difficult to treat, for several reasons: it’s resistant to conventional therapies, the brain can be damaged by conventional therapies, the brain has limited capacity to repair itself, and it’s difficult for drugs to cross the blood-brain barrier and get to the tumor.
As if that’s not shitty enough, glioblastoma also affects the part of the brain that makes us who we are as individuals. Thus, when glioblastoma invades, its victim’s personality changes, and the person becomes quiet and no longer reacts as she has in the past. For someone like Sophia, who was very opinionated and passionate, this is a crying shame. Being in her presence without her talking, smiling, or asking questions was a hard thing to stomach. Our frontal lobes control so much, yet are the most vulnerable. Most of the TBIs involve damage to the frontal lobes. The fact that the frontal lobes make up so much of who we are as individuals, when something goes wonky with them, the result is overwhelmingly bad. I’ll never forget Sophia weeping at my mom’s funeral, 5 years ago. Just as many people will be doing for her on Tuesday. Reminds me of one of my favorite quotes from Kahlil Gibran. I received a copy of his book The Prophet when my mom died, and it took me a long time to get to the point in which I was ready to read it. I’m so glad I did, though, because his words bring comfort in times of great sorrow:
“When you are sorrowful, look again in your heart and you shall see that in truth you are weeping for that which has been your delight.”
Thea Sophia, you are indeed a delight, and will remain so forever in my heart. While I’m glad that your suffering is over, I know that mine is just beginning. We’ll never forget you.
It’s my cancer-versary
Posted: April 27, 2011 Filed under: breast cancer, cancer fatigue, drugs, food, infection, kids, Surgery | Tags: baseball, breast cancer, cancer battle, cancer diagnosis, champagne, Couture for the Cause, DIEP, family, home health care, hospital, Houston, ICU, infection, infectious disease, IV antibiotics, kids, kids and cancer, life after cancer, Little League, loss, mastectomy, MD Anderson, Methodist Hospital, microsurgery, mockingbird, Mom, morphine, new boobs, plastic surgeon, plastic surgery, post-mastectomy, Race for the Cure, reconstruction, recovery, stress, surgery, survivor, Taylor Swift, tennis, the Big Dig, Tootsies Houston, Vancomycin, Willow Tree angels, wound care, wound vacuum 20 CommentsOne 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.
Back in the saddle
Posted: April 26, 2011 Filed under: breast cancer, cancer fatigue | Tags: back in the saddle, Christos anesti, exercise after mastectomy and reconstruction, Gene Autry, getting your life back, Greek Easter, Greek Easter bread, gym, happy day, post-cancer workout 1 CommentLadies & Gentlemen, I’ve just returned from the gym.
Oh, happy day.
I’m back in the saddle. Hooray.
Really and truly happy is what I am right now. No, it’s not tennis, and when the day comes that I step back on that court, I will be really and truly ecstatically happy, but this is a good start.
I saw my Greek friend Spyros, who said “Christos anesti,” to which I replied in kind. He’s always suspicious of my Greek-ness because I married a white guy and my kids don’t attend Greek school, so it was a smallish victory for me to be able to reply to him in the mother tongue. If I’d thought about it, I would have expected him to be there, because he’s always there and may well be the fittest Greek person on the planet, and I would have brought him a red hardboiled egg. See, Greeks dye all their Easter eggs red, to be symbolic of the blood of Christ. We nestle the red boiled eggs into the braided Greek Easter bread, then pass them around to everyone at the table and exclaim, “Christos anesti!” Then we play a little game: two people knock their eggs against each other, and who ever comes away from it with an unbroken egg is the winner. On Sunday at my cousin’s house, Thea Sophia was the undefeated egg holder until my other cousin Kim unseated her. Kinda mean to do to an 83-year-old, but that’s how we Greeks roll.
After greeting Spyros and once again wondering how the hell he stays so fit while loving Greek food, I found my good buddy and trainer LeRoy. Like Peaches & Herb, LeRoy and I were reunited, and it was pretty good. He usually pushes me to the point in which I think I will barf, and he always knows best. Some people in my household think he pushes me too hard and I’m all worn out & cranky from a LeRoy workout. Those people will be happy to know that today LeRoy was very cautious and treated me quite kindly. He also reminded me often to be patient (blech!) and that getting back to my previous level of fitness is do-able. I’m gonna hold him to that.
Walking on the treadmill is not my thing, ok? I’m looking for something a little more heart-pumping and sweat-inducing than that. Not saying you can’t get a nice workout from a brisk walk, but that I’m too impatient for that. But I walked 20 minutes at a nice clip with a bit of an incline (a bit more than LeRoy recommended, but don’t tell him), lunged down the gym and back, did some light–very light–arm weights (lateral, front, and full raises; hammer curls, tricep extension and high-pulls), step-ups on the tall step not the baby step, and walked another half mile on the treadmill.
Not a workout from days gone by, but a good start. I’m back in the saddle, and learning to be content with that. Yes, the learning curve is steep, but I’m getting there.
I’m no cliffhanger
Posted: April 5, 2011 Filed under: breast cancer, cancer fatigue 3 CommentsBefore I get into the heavy stuff, here’s some eye candy. No, it’s not a picture of Jacoby Ellsbury, my favorite baseball player and not-so-secret crush. It’s a photo of my TOMS shoes that I blogged about yesterday.
I received more than one request to showcase the shoes here. I aim to please, people. You make a request, I will consider it. Didn’t say I’ll make it happen, but I will consider it. I chose the TOMS natural canvas classic AND the canvas wedge. Love them both.
A girl needs options, and a girl coming off a nasty battle against not only cancer but also a nosocomial infection or two needs multiple options, i.e., lots of shoes. If there were a TOMS store in my neighborhood, I’d be standing outside it now in my jammies, nose pressed against the glass waiting for it to open. But I digress.
And I lie: I am putting in a photo of Ells. Because it would be wrong to mention eye candy and not put him in here. You’re welcome.
Ok, back to business. Although it’s hard to concentrate with Ells on the screen. All right, focus, focus.
I read a lot about cancer. Not just breast cancer, either — I’m an equal-opportunity reader on this weighty subject. Hate it, but am drawn to it and have a yearning to find out as much as I possibly can about this insidious killer. I’m an info-junkie when it comes to my cancer: I want to know all the gory details. The not knowing is way worse for me, because it allows my crazy imagination to have free reign and imagine all sorts of scenarios, none of them good. Reading about cancer can be overwhelming, frustrating, depressing, thought-provoking, and rage-inducing, much like the “cancer journey” itself.
I learned early on (although my “cancer journey” is short compared to a lot of people’s) that reading about people who died from cancer is to be avoided. Stay away from the unhappy endings! After watching that very thing happen to my sweet, irreplaceable mama, I need no further education on the topic. Not that I’m closing my eyes to the reality, because believe me, the one thing you think about a lot when diagnosed at age 40 is death. It’s a sobering fact that you hope to live more years beating the disease than you had lived before being diagnosed with it.
Some say being diagnosed early is a good thing, as we tend to be healthier and better able to tolerate the twists & turns, the challenges and set-backs that cancer throws our way. Some say that diagnosis at a young age means being better able to handle the tolls the disease takes on your body. Both of which can be true, but they are countered by the fact that most of us in the “young cancer club” have young kids at home, maybe even more on the way, and parenting during cancer presents its own land mines.
I will never forget my fearful yet brave 10-year-old boy asking me repeatedly if I’m sure I wasn’t going to die from breast cancer. Similarly, I will never stop being totally pissed off at cancer for creating the situation in which that question had reason to come out of my boy’s mouth. Stupid cancer.
Of all the things I have read about cancer, Dana Jennings’s column is one of the best. Jennings writes a phenomenal column for the New York Times about his “journey” with prostate cancer. I’m not sure how much longer you can access it online for free, since the NYT is going to start charging for online subscriptions, shame on them, but I will likely reference and quote him in future because he’s a writer who inspires me and because his “cancer journey” had a happy ending.
He wrote something recently about a quintessential cancer patient experience: being in the waiting room, filled with other people, at the oncologist’s office. People not on a “cancer journey” likely don’t give this a moment’s thought; why should they? An oncologist’s office is something you pass on the way to your kid’s orthodontist’s office, right? Why would you think about what goes on in there, or the people contained therein?
After reading Dana Jennings’s observation, you may well think about what goes on in there, and about the people contained therein. I know I do, and I’m one of them. I’m the one being overly nice to the receptionist and office manager, willing them to see me as a person not just a patient. I’m not above bribing them with treats so that in future, if I need a last-minute appointment or other favor that only those in their position can grant, they may be more inclined to grant it. I’m the one stretching out the day so I can get to the oncologist’s office at the last possible minute, in order to put it off as long as possible without being late. I’m the one not making eye contact with other patients, because I don’t want to hear anyone else’s sob story. There’s simply no room in my heart or my psyche for any more worry, misfortune, or bad news. I may indeed be what Jennings refers to as “a human question mark,” but I refuse to be a cliffhanger.
“But in the waiting rooms of oncology — diagnosticians and surgeons, chemotherapy and radiation — almost no one speaks in a normal conversational voice except for the employees. In those rooms, we all know that none of us managed to catch that last plane out.
We patients, often frayed and afraid, glance at one another, sometimes nodding, sometimes not. I like to nod and look my fellow patients in the eye because, for a moment, it frees me from the overactive prison of my own mind. But I also understand those who don’t want to. They’re afraid to look into another face and see their own staring back.
A sense of exhaustion hangs in the air, and it’s not unusual for the healthy spouses to look more inconsolable than the patients. We’re all tired of the tests and the questions, tired of the fear and the rage, tired of our insurance companies, tired of the cancer-focused magazines and pamphlets that we just don’t have the patience for anymore. We are sick of being human question marks.
In those rooms, we are, all of us, on dark journeys, each one of us bearing a crucial tale to tell. But we are also feeling poignantly mortal, and we’re not up to telling each other our stories right then and right there. When it comes to the stories of our lives, we know that we have become cliffhangers.” — Dana Jennings
Some days…
Posted: March 30, 2011 Filed under: breast cancer, cancer fatigue | Tags: breast cancer, cancer battle, doctor appointments, infectious disease, lab cultures, Methodist Hospital, MRSA, post-surgery infection, stress, Texas Medical Center 5 Comments
Some days I want to open up my skull, scoop out my brain, cradle it lovingly & pat it reassuringly and tell it there, there, one day this bad stuff will be behind us and everything will get back to normal. Those who’ve walked this “cancer journey” before tell me that this will happen. Other days, I want to open up my skull, scoop out my brain, and kick it across the room, saying, is this the best you can do? Can you at least try and keep up here? 
Today is a kick-it-across-the-room kind of day, and it’s early. It’s still dark outside, for cryin’ out loud. My brain should still be sleeping and recharging so it’s ready to face the day. Instead, it woke up–and woke me up, too–several times last night, disrupting my Ambien-induced slumber. Stupid brain. Doesn’t it know that sleep is the one guaranteed relief from the cancer-laden thoughts that course through my head? Unless I’m dreaming about cancer-related stuff, that is, and that too I blame on my idiot brain. How come those dreams are never good? Where are the unicorns and fields of four-leaf clovers? Where are the feel-good scenes that bathe my brain in serotonin, ensuring that when we wake up, we do so with a big smile and feel like we’ve had a nice hug. Where’s Charles Schultz when I need him? 
Now I can’t remember what this post was about. Stupid brain.
Today will be a long day. In addition to the choppy slumber and frustrating half-thoughts, I have 3, count ’em, 3 doctor’s appointments today. That’s about 3 too many for me.
First up is Dr Grimes, infectious disease guru, to hopefully shed some light on the MRSA part of the infection puzzle. I’m expecting to get culture results from my visit to him last week, and he will order blood work as well today, to seek more answers to the great infection questions that seem unending.
Then it’s off to Dr Spiegel to get down on my knees and beg her to please please please pull these damn drains. Today is 4 weeks, people. Four long weeks of being tethered. She’s not easily swayed, so my visit to her may end in tears. Or shouting. Or both.
But, wait — I have my appointment with Dr S to round out the day! That ought to be good. He always has something interesting to say about my pitiful situation. Half the time I don’t have the foggiest idea what he’s talking about, but it’s always interesting.
Stay tuned.
The hits keep coming…
Posted: March 25, 2011 Filed under: breast cancer, cancer fatigue, infection | Tags: Benadryl, breast cancer, cancer battle, champagne, Cubicin, frustrated patient, infection, infectious disease, IV antibiotics, medical center, plastic surgeon, reconstruction, recovery, Vancomycin 18 Comments
I just got back from the infectious disease doctor’s office and wow, what a visit. What a day. There’s not enough champagne in the world to soothe this jangled mess of nerves. I don’t know where to start, so buckle up and bear with me.
It started with a phone call this morning from Rhonda from the infectious disease team’s office. She said hang tight, they weren’t going to start any new antibiotics until Wednesday when I have an office visit scheduled. I registered my discomfort with waiting 5 days, and hung up wondering what to do next about a 2nd opinion, when Dr Grimes called me back himself to explain.
It was a bit of a misunderstanding: he didn’t realize I was having symptoms in the newly created breast, which is the site of the original infection (the dreaded mycobacterium, which has waaaaaaaay overstayed its welcome). Once he realized we weren’t talking about a problem with the drain site from the belly incision, he got busy and ordered IV antibiotics and said come in today and start the first infusion in my office.
But first, I saw my plastic surgeon for my weekly post-op visit. He was in an effusively good mood, and entered the room smiling from ear to ear. He was at least 30 minutes late, and came in fully loaded: the first thing he said was, “I’m making up for the fact that last week you were late.”
Uh, yeah, I was 5 minutes late. I said as much, and he started to say something along the lines of it’s ok for him to be 6 times as late because he’s the doctor and I’m the lowly patient, but I cut him off and said, You are NOT that much more important than me, so zip it.
He did. I filled him in on the infection scenario and he had some things to say. He’s persnickety, and I love it. From his standpoint, things look good physically and he’s not super concerned about the new infection but was in agreement with Dr Spiegel that a visit to the ID docs was necessary. He said he wanted to talk to both Dr Spiegel and Dr Grimes today to make sure they’re all on the same page.
So off I went to the med center, again. The one time I don’t have any of my handlers present was, natch, the one time I needed them. More on that shortly.
Dr Grimes, who I adore for his problem-solving skills, rejiggered his schedule to see me so he could get the full story and examine me. Since they worked me in, I was in the secondary infusion room, which is little more than a broom closet. There are 2 recliners and 2 IV poles, a desk & computer and mini-fridge (which had nothing of interest in it, and yes I checked). There were 2 nurses in this tiny space and they and Dr G were stepping all over each other while I was comfy in my recliner. But without a beverage equal to the stress of my day. This room is so crowded that if both recliners were reclined, the people sitting in them (across from each other) would be tangled up. Oh, how I hate small spaces and crowded rooms.
Dr G needed to take a look at the original infection site, now home of the newly created right breast. The older of the 2 nurses, who is mid-50s and easily 100 lbs overweight, said, Oh aren’t you lucky to have gotten new boobs.
Screeeeeeeeeeeeeeeeeeeech.
That would be my patience coming to a grinding halt.
I said, yeah, that’s what everyone says, which sounds great, but they look like this: and I took off my shirt.
What I see as scar-ridden and jam-packed with misfortune and hardship and pain, medical professionals tend to see as pretty amazing. And yes, going from a completely flat, sunken, and concaved on the right side to two round and realistic breasts is pretty amazing. But I don’t want to hear the “yea, new boobs” line ever again.
The older nurse actually said, in front of Dr G, “Well, at least they’re perky. Mine haven’t been perky in a long time.”
Again, that sound you heard was my fuse erupting and the final straw shattering into a million pieces. I’d trade perky boobs for my old life in a heartbeat. One thing I’ve learned in all this mess: boobs are overrated. Especially the ones that try to kill ya.
I kept my composure, and so did Dr G, because I suppose she was trying to be positive, and Lord knows that’s a tall order in my situation. So, long story short, Dr G ordered yet another culture and said to get started with the infusion.
I’ve had vancomycin a lot. As in, in each of my hospitalizations, and at home. I’m tight with the vanco. Because I still have my port, it’s easy to administer the IV antibiotics, which is good because via IV is the only way to get vanco. It’s a wonder drug that in the past has worked for me, and worked fast.
Can you guess where this is going?
Because my body can’t do anything the easy way, or without complications, or absent drama these days, I had a reaction to the vanco. My old friend coursed through my bloodstream faster than it ever had in the past, and my body said, whoa, slow down this is creepy and we need to take things down a notch.
And by take things down a notch, I mean I started itching like crazy, felt like I had bugs crawling, in my hair, felt my skin burning, and my hands swelled up.
I’m not allergic to anything, and I’ve never been stung by a bee. Before breast cancer and infections entered my life, I had a pretty strong constitution and a cast-iron stomach. Now, however, I’m reduced to an itchy, burning, swollen, bug-infested mess.
I was about 40 minutes into the hour-long infusion at this point, so the nurses paged Dr G from his hospital rounds and he said finish the dose but administer some Benadryl and then start a second, replacement antibiotic, Cubicin. It’s new, similar to my old-friend-but-now-enemy vanco, and supposedly less likely to cause a reaction.
I need a lot more things like Cubicin in my life. The only drawback to it is that it takes about half an hour for the in-house pharmacist to mix up because it’s a giant molecule that takes a while to dissolve. So I had to wait. In the tiny little room. With both nurses, plus another patient who had joined us. He got hooked up to whatever drugs he needs (I tried to read the bag hanging from his IV pole but couldn’t), and promptly went to sleep. And snored through everything. Man, he looked peaceful.
The Benadryl made me kinda sleepy, but I only took half of what they offered because well, I knew it would make me sleepy, and I had driven myself there and had to get myself home. With my hands so swollen I literally couldn’t make a fist.
Luckily, the reaction didn’t progress beyond the itching, burning, swelling and buggyness, and the Cubicin infused without incident. Finally, something goes right today! And of course, now I know why they wanted the first infusion to take place in the office. Being the impatient old pro with home-health issues, I had lobbied to just run over to my oncologist’s office around the corner to have my port accessed, then have the antibiotic delivered to my house and get cracking. Luckily, Dr G is a lot smarter than I am.
So with the second drug infused safely, I was free to go but first had to go drop off the sample of the drain fluid at the lab. Now, “at the lab” at Methodist in the med center means in a different building and a long walk. Half outta my head on Benadryl and still swollen to the point of really wondering if I could get my credit card out of my sling bag to pay the valet, I left Dr G’s office.
With a good-sized box of drugs and supplies to haul with me.
Yep, they sent me home with a party favor: a box full of Cubicin, saline syringes and heparin flushes. I got to carry the box, and my lab specimen, across the Methodist campus.
Did I mention that this is the one appointment I attended unaccompanied? Rotten luck, that. Not only did I have to operate the giant sausages that were my fingers, I had to find my way with my Benadryl-addled brain limping along.
I went to the place I thought I was supposed to go, and tried to leave my lab specimen with a receptionist. She smiled broadly and did a fantastic job of disguising her disgust as I handed her a pee cup full of drain fluid. Kind soul that she is, she redirected me and sent me on my way to the lab, not the registration desk.
Trekked my way to the lab and found it with no wrong turns (hallelujah! this piece of junk day is turning around!) only to find that I was expected to fill out a form and list all the particulars of my insurance card. Which I did not have.
I explained as nicely as I could (which I admit, wasn’t very nice), that I’ve spent more than two weeks hospitalized in the Methodist system, both at the med center and in Sugar Land, and see no less than 4 doctors who are affiliated with said system, and if she can’t find me in the system then she could take the lab specimen and shove it.
Not really, at least not the “shove it” part but I was tempted. I told her I didn’t have my insurance card because I was still attached to my surgical drains and can’t carry my normal purse, blah blah blah. She said whatever, crazy lady; just fill out as much as you can and be gone.
And that’s exactly what I did.
And I managed to find my way back to the other building, to the valet. But on the way, as I was calculating the best way to make these giant fingers work to open my sling bag, I realized I didn’t have a valet ticket. The little blue slip that the valet always hands me in exchange for my wheels. Never got one.
Or did I? Just because I don’t have it doesn’t mean I never got it, and my mind was clicking along frantically trying to remember if I got the blue slip. I really didn’t think so, but clearly after the day I’ve had, I can’t be trusted and need adult supervision.
I remembered something odd about dropping my car with the valet: he asked how long I would be and if I wanted him to park it close. I said, probably 3 hours and I don’t care where you park it, whatever is easiest for you. That’s an odd thing because the valet usually doesn’t say much but hands over the blue slip. So I hauled myself and my box o’ goodies to the cashier to confess that I don’t have a ticket and was about to launch into a rousing speech of, I don’t care how much it costs to get my car out of hock, I just wanna go home and I wanna go now. I was a little worked up. Thankfully, the speech wasn’t necessary, and when I told the cashier my tale of woe, i.e., that I never got a ticket, she simply said, go on outside.
I guess sometimes the valets give ya a freebie. But then I’m left with the quandry of not exactly remembering which valet took my car without giving me a ticket, and not knowing for sure if he was giving me a freebie or if he forgot or I lost it or what. And the bigger question was: how do I let them know that I have no ticket, haven’t paid, but still need my car?
Again, I needed my handlers. In the worst way.
After a few minutes, the valet that I suspected was the one but I wasn’t 100 percent sure motioned to me and asked if I was ready for my car. Um, sure, yeah, that would be why I’m standing in the valet pick-up/loading zone area. He said navy Tahoe, right? I said yep, and he fetched my car, which sure enough he had parked close, as in right around the bend–not on the roof, or across the street, or wherever they usually park. He is officially my new favorite, and I’m very glad that when confronted with the choice between a single $1 bill and a $5 bill, I gave him the 5 for a tip. Still made out like a bandit since I didn’t have to pay for the parking at all. And it’s a small miracle that my over-inflated fingers were able to work at all, but thank goodness they did so that nice man could get his tip.
The ending to the whole saga came once I was in my car and on the road home, finally. Still a little itchy, really sleepy, way exhausted, fingers at least 5 times their normal size, but on the road home. The phone rang, and it was my plastic surgeon’s nurse, calling to tell me that he talked to Dr Spiegel and they both agreed that it was ok for me to go ahead and get the IV infusion from Dr Grimes.
Uh-oh. Were they expecting me to wait and get their permission or blessing on that? I had no idea. Good thing they were all on the same page.
Jerk
Posted: March 21, 2011 Filed under: breast cancer, cancer fatigue | Tags: blog, breast cancer, cancer battle, Hallmark card, Lifetime movie, missing mom, new boobs, plastic surgery, reconstruction, recovery 9 CommentsThere once was a post about gratitude. About feeling it and showing it to someone who had done something that changed my life. About how I struggled to say thank you for helping me, for making things better. About how I wished there was a Hallmark card that says, “Hey, thanks a lot for saving my life.” Absent such a card, I don’t think I effectively conveyed that sentiment, but I tried, and as we all know, it’s the thought that counts.
This post is not about gratitude. It’s not about feeling or showing thankfulness. It’s about a whole ‘nother set of feelings, and there most definitely is not a Hallmark card for them. It’s about feeling betrayed and scared and frustrated and hopeless. And helpless. Lots of helplessness in there. Sounds like a great basis for a Lifetime movie, right?
I’m feeling all of these nasty things, and more. In addition to the emotional stew, I’m also feeling sick to my stomach. For real. As in, any second I may barf. Now, that particular sensation is one I’m very familiar with, and no, not because of all the heavy drinking I’ve done in my lifetime (close, but not quite). It’s because of the dynamic duo of oral antibiotics I’ve been taking for 221 days. Two hundred and twenty-one days. CCXXI days. So let’s just say I’m used to the all-day morning sickness, the pukey-all-the-time drudge that is life on long-term, hard-core abx.
Add to the stew and the roiling stomach the sleepless night that now has me feeling like a zombie on a bad day after a monstrously long night of searching for solace but finding none. That feeling of bone-weariness coupled with worry so palpable you can smell it. And taste it. Which does not mix well with the roiling stomach.
If I weren’t so tired and puny and upset, I would be mad. Really mad. But I’m not. It would be very easy to be defeated, to give up and stop fighting. To roll over and concede. That is very tempting right now. And I’m not one with a lot of willpower. Brute force, yes, but willpower not so much.
I don’t do any of those things well: the giving up, the acquiescing, the rolling over or the conceding. I’m not super competitive, at least not against others, but I really stink at those things. I have no desire to keep up with the Joneses or be the leader of the pack. I don’t need the latest and greatest gadget, the biggest house, the newest car. I like nice things, but they don’t drive me. I have a lot of pride, and it’s hard for me to say things like “you win” and “I was wrong” and “I thought I could do this but I can’t.” I’m much better at writing those ideas than expressing them out loud. Hence this blog.
As I struggle to process all the feelings coming at me this morning, and fighting through the fog that fills my brain and slows down my body, and going through the motions of the early-morning routine, one thought sticks out and gathers my attention: everything was going so well; at the start of week 3, I should be able to do more, to reclaim more. And the fact that I can’t makes me heartsick and nauseated and wish I could curl up in a little ball until it passes. I want my mama, but she’s gone, and I can’t conjure her up right now. I’m stretching and reaching to remember her voice, but all I’m hearing is static.
I’ve probably mentioned before that I’m driven. I like results and achievements and progress. I make a to-do list every day and attack it. I believe wholeheartedly in the principle of do the work first then with whatever time is left, play. I don’t idle well and have a hard time doing nothing. I need goals and milestones.
I should be reaching a milestone as I enter week 3 of recovery from a major surgery. Some progress has indeed been made: improved range of motion, increased mobility, and less pain. What I shouldn’t be encountering is a set-back. At the risk of sounding a little whiney, haven’t I had enough set-backs?
Something is going on with the right side of my body, and I don’t like it. I’m mad at my body. It has betrayed me, and it’s frustrating me and worst of all, it’s scaring me. The drain on my right hip hasn’t been working well since I got home from the hospital. It has leaked and collected considerably less fluid than its counterpart on the left. A theory was floated that the disparity between the two drains’ fluid collection could be because righty isn’t pulling its weight so lefty is taking up the slack. I like the other theory better: that lefty is threaded deeper into my body, which allows it to pull more, and righty is doing exactly what it needs to be doing for its location.
Regardless of theory, the fact is something isn’t right, both with the drain and the newly created breast. The right one had a divot on Thursday, that was deemed by the authority figures to be no big deal, part of the process. But now the skin all around the divot in an ever-widening area is hard. And sore. To the point that taking a deep breath is uncomfortable.
This is the thing about recovery that is so treacherous. It’s unpredictable and anything can happen. Things can be going well by all accounts and suddenly, out of nowhere, there’s a problem. One minute you blow a tire, and the next you’re careening over the cliff.
I hate careening.
If I could send a Hallmark card to my body, to express my current mix of emotions, it would be simple. Not a lot of words are necessary to say, you betrayed me. It would look like this:












