My fair city hosts the largest Race for the Cure in the country. Yep, that’s right — everything’s bigger in Texas!! Today’s race was pretty great. They say a picture is worth 1,000 words, so I will simply let the photos speak for themselves.
She didn’t have any hair, but she did have tissue expanders in preparation for implants!
Race route sign. The logistics and details of pulling this huge race off are staggering.
How utterly sweet is this?
The best part of the race — finishing in the SURVIVORS lane!
I’ve been quite busy the last few days living my life.
I’m going to say that again — living my life. Those are 3 beautiful little words to someone dealing with cancer. Past or present, once you’ve tangled with the beast, the idea of living, i.e., surviving, is sweet. The idea of living your life, even sweeter because it means that in some way, you are getting back a semblance of the pre-cancer life.
It’s almost October, which brings a multitude of conflicting emotions and thoughts. National Breast Cancer Awareness Month is confusing for me, and for many other cancerchicks. On one hand, I’m grateful to Komen for destigmatizing what once was a shameful disease. I’m thankful for the research and the advances that have been made, which allow women like me to deal with BC much more easily than my pink ribbon sisters before me. On the other hand, I’m uncomfortable with all the pinkwashing that occurs. At what point can we declare enough with the awareness? Is there really anyone who’s not aware that BC exists and rips people’s lives apart to the tune of 1.3 million worldwide every year? More on that later.
While I’m torn about the Komen issue, I decided last-minute to do the Race for the Cure, which is tomorrow. The Houston version of the race usually attracts nearly 40,000 people so it’s a big deal, literally. I’ll be among the sea of pink tomorrow morning, wishing that the organization putting on the race would focus more on research and metastatic disease and less on putting a pink ribbon on products from fried chicken to dog treats to toilet paper. I’ll proudly wear my hot pink SURVIVOR shirt, basking in the glow of having made it through the plethora of crap cancer threw at me, but I’ll also mourn those who didn’t make it through.
But that’s tomorrow. Today I’m going to be kicking some butt on the tennis court. It’s the annual member-guest tournament at our club, and Christy and I plan to dominate. She’s a fierce competitor who wants to bring home the hardware. Me too, but I’m also happy to be living my life.
Once upon a time, in a city far, far from Houston, there was a group of young-ish women. All had relocated from every corner of the country with young kids in tow to help fulfill their husbands’ dream of getting an MBA from a top-10 business school. None of the women knew anyone in the new city, and all were a long way from home. For two long years, without paychecks and luxuries like babysitters, the women bonded while the hubs crammed their brains with all things MBA-related. Once the menfolk had diplomas in hand, the group of women dispersed, to new homes in new corners of the country.One night before going separate ways, the women left the hubs and kids at home and went out for a nice dinner. There the plans were laid and a vow was made: let neither distance nor the rigors of child-rearing sever the bond created by hardship and the shared need for breaks from their preschoolers. The solution: come together for an annual girls’ trip, to reconnect and recharge.
The first trip was to San Francisco, then Sanibel Island in Florida. Next came Captiva Island, then Scottsdale. Park City was next, followed by Lake Tahoe. Every year was a different locale, but the theme was the same: reconnecting.
The women had gone their separate ways, and a few left the domestic scene to pursue careers in law and medicine. The others continued to toil on the homefront, trading preschool and playdates for elementary school and homework. The kids grew up, and a few new babies joined the fold. One thing remained the same, however: the women’s commitment to the annual trip.
Well, not really the end. Just the end of my little story.
It’s the eve of the 7th annual Duke girls’ trip, and my suitcase is packed. My boarding pass is printed. My Kindle is full of new books to be read uninterrupted by young children. My house is stocked for my peeps to exist in relative ease in my absence. I’m going, I’m really going.
After 7 years, you’d think that preparations for the trip would be somewhat by rote. Decide on the locale, find lodging, book flights, pack a bag, kiss the fam good-bye, and vamoose.
But not for me. See, last year I was ready for Tahoe. That trip was to have taken place 4 weeks post-mastectomy. As I described it this time last year, the trip was “my goal, a partial finish-line, and my sanity-saver since my diagnosis.” One of the first things I asked my superstar breast surgeon, Dr Dempsey, upon diagnosis, was if I’d still be able to take my girls’ trip. Tahoe with my Duke girls gave me something concrete to work toward in my recovery from surgery, from being diagnosed with cancer at age 40.
Instead of stocking the fridge and packing my bags this time last year, I was in the hospital, sick–really sick–with a nasty infection. I was admitted to the hospital unexpectedly when symptoms of the infection appeared out of nowhere. I literally had seen Dr S the day before the symptoms cropped up; fine one day, sick the next. The day I was hospitalized, I was still clinging to the hope that I’d be in & out of there quickly and still be able to go on my trip. Silly, silly girl. My mind was willing, but my body said “No can do.”
After countless IV bags full of different antibiotics, my fever kept spiking and I got worse instead of better. While the scarier bugs like anthrax were quickly ruled out, the specific infection remained elusive. My infectious disease doc told me that the cultures grow at their own pace, and the culturing is done old-school: in a Petrie dish in an incubator in the lab downstairs. I was confined to the hospital bed until the growth was complete, and no one knew when that would occur. The day before the Tahoe trip, I had to concede that I wasn’t going to make it. Rotten luck.
While it broke my heart and seriously injured my fighting spirit to tell my Duke girls I wouldn’t be joining them, untold hard times followed. Missing the trip was chump changed compared to what was to come. Looking back at my Caring Bridge journal entry for June 10th of last year yielded this:
“I should be on a plane right now, en route to Tahoe, but instead I’m in an ugly gown, sitting on scratchy sheets in an uncomfortable bed (most definitely not a Tempurpedic mattress). Looks like I’ll be here a while yet.”
I don’t recall this part, but it must have happened:
“They moved me across the hall last night to a new room. My new neighbor is an older Asian man who talks louder than anyone I know, and so do all of his relatives. In fact, I just got up my scratchy sheets & walked across the hall in my ugly gown to shut his door. Sheesh. This hospital has an entire floor for Asian patients, which is pretty cool and indicative of this huge city we live in, but I’m wondering why he’s not on that floor.”
Tonight, on the eve of the 7th annual Duke girls’ trip, there are no scratchy sheets and there is no ugly gown. There’s a not-so-youngish-anymore woman who’s had one helluva year, who’s ready to get on that plane and make up for lost time. SPI, here I come. Now that’s a happy ending!
Summertime, and the living is easy. Sam Cooke said it, well, sang it actually, a long time ago. The fish were jumpin’ and the cotton was high. The girl he was singing to had a daddy who was rich and a mama who was good-looking. All was right in Sam’s world.
Well, the living is easy all right. No alarms waking me up before I’m ready, no lunches to pack. Payton’s lunch is easy: sandwich, bag of baked chips, string cheese, Rice Krispie treat, and a drink. No lunch box, no ice pack — he’s too cool for that. Macy, on the other hand, is quite particular about her lunch, requiring 5 different things, some of which must be washed & chopped and placed into small tupperware. She does at least take the same thing every single day, much like her mama did as a schoolgirl. I had a homemade egg salad sandwich on wheat bread every day of my schoolgirl life, and didn’t care one lick that the other kids thought the egg salad looked gross and the brown bread looked weird. They could have their stick-to-the-roof-of-your-mouth Wonder bread PB&J any day. I was perfectly happy with my gross-looking egg salad on weird-looking bread.
So no lunches to pack, yea. No mountain of school paperwork to wade through, only to find that other than glancing at the grades at the top of the completed work, there’s not a single thing in that mountain that really matters. No racing the clock to get out of bed, gobble down breakfast, get dressed, and get out the door. No meanie mom enforcing a highly unpopular bedtime so the little darlings don’t act like feral hogs in the a.m. Last but not least, no school projects. Oh, how I despise the projects. After 18 years of living with the original slacker student, who did minimal work and gasp! even skipped school projects altogether yet made good grades and somehow managed to become a contributing & successful member of society, my opinion on school projects has definitely changed. Changed to hatred, that is. They’re messy, time-consuming, inane, and require ME to go to Hobby Lobby AND help with said project when I could be playing tennis.
Ok, rant is over.
I certainly hope I didn’t offend any teachers out there. If I did, please direct your hate mail to my husband, the original slacker student. It may take him a few days to reply, because he’s busy running a software company. I’m not sure he could have risen to such heights and attained 2 graduate degrees without that pivotal diorama he made in 3rd grade at Jenks Elementary.
Ok, now my rant is over.
So we are blessedly free of the strict schedule imposed by the Fort Bend Independent School District, and most thankfully free of the blasted school projects. We can go where we want to go when we want to go there, stay up late, and eat lunch when we please. All that sounds great, right?
Except for one tiny detail: I don’t do well with unstructured time. Remember me, the busy-body? I don’t blossom with a lot of downtime. It’s day 3 of summer, and I’m already feeling a little itchy, a little twitchy. As much as I dislike the hustle & bustle of the imposed school schedule, it does keep us on track. And I like that. I need that. I would have been great in the army.
Lots of people enjoy their downtime and get into being lazy. For me, laziness makes me feel icky. I really like having a to-do list every day and relish the feeling of being productive. Some people were laughing at me that on the first day of summer, I cleaned out the garage, did 4 loads of laundry, vacuumed the entire downstairs, and bagged up discarded clothes for donation. Before lunchtime.
Now that my kids are a little older and a bit more independent, summer isn’t as stressful because I can still get my stuff done without having to watch them every second. The ever-present possibility of a toddler finger in a light switch cramps my style and interferes with me crossing things off my to-do list. With the luxury of semi-independent children, I’m trying to relax more this summer. That, and the burning desire to suck every drop of summer this year, since last summer was such a bust.
Last summer, I was not only recovering from a bilateral mastectomy but also playing hostess with the mostess to a nasty, long-staying bacteria that exploded into a messy, hard-t0-diagnose-and-even-harder-to-eradicate infection. I spent some extra time in the hospital, multiple times and multiple hospitals, and had a few extra surgeries. I weathered the ups & downs of being an impatient patient, and learned the hard, hard lesson that no matter how nicely I treat my body, it can and will betray me. As my sweet mama would have said, “That is rude, crude, and socially unacceptable.”
Last summer I missed out on a lot, thanks to Mr. Mycobacterium. This summer is going to be different. I’m going to spend some idle time, and hopefully learn to like it. I’m going to float in the pool with my kids and my crazy dog, and not worry about the laundry piling up or the dishwasher needing to be emptied. I’m going to teach my kids to cook, and not stress over the messy kitchen. I’m going to drag them away from the TV and computer games and into the museum district, and not get discouraged when they complain about how boring it is.
However unstructured this summer is, it’s gonna be great. Summertime and the living is easy.
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.
and Macy & I pampered ourselves with a Chinese foot massage.
I squeezed in as much time as I could with my girls
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
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.
Keith’s crab towers were chock-full of healing properties.
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.
although Pedey enjoyed every lazy minute of my recouperating.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
Twice a 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?