Houston, we have a vaccine…Posted: May 17, 2012 Filed under: breast cancer | Tags: AE37, breast cancer recurrence fears, breast cancer research, breast cancer vaccine, cancer research, Dr Elizabeth Mittendorf, HER2, HER2 negative, HER2 positive, MD Anderson, Stage IV breast cancer 26 Comments
Well, not officially, but the initial studies sure look promising.
Front-page news today in Houston declares that researchers at M.D. Anderson Cancer Center right here in my fine city have good things to say about results from an experimental vaccine. The researchers are hailing the potential vaccine as “a promising developement in an emerging field in cancer care.”
Sounds mighty good to me.
Much has been written on the blogosphere about finding a cure — or, more accurately, the utter lack of progress in finding a cure — for this disease that fells one in eight women in the United States each year. The statistics are scary, and you can’t swing a cat without hitting someone who’s been touched by breast cancer. And by “touched by” I mean gobsmacked by. It’s a vicious, insidious, relentless disease, and in the decades of research, precious little progress has been made in finding a way to eradicate breast cancer.
All of that could change, however, with this potential vaccine.
Its focus is significantly reducing breast cancer recurrence. So it won’t eradicate the disease itself, but may (hopefully, please please please, fingers crossed, with sugar and a cherry on top) prevent women who have had BC from suffering a recurrence. Once BC comes back, no matter what stage it initially was or how effective the treatments were, you proceed straight to Stage IV and are considered incurable. That’s not to say the cancer can’t be managed, because it can, but it will never be cured. And therein lies the promise of this new potential vaccine.
I’ve gotten to know many Stage IV BC gals in the blogosphere, and their struggle is rough, to say the least. Ongoing treatment, escalating side-effects and financial burdens, and hopelessness are common in their fight. Not to mention mortality. Up front and in your face with Stage IV BC is mortality, in sharper focus and with a shorter shelf-life than ever imagined.
As one of the “lucky ones” in the cancer world considering my type of BC is lazy, slow-growing, and non-aggressive (touch wood here for good measure), I have a low recurrence rate. At least according to the charts and graphs and stats. That doesn’t mean I don’t think about it every single day, fear it and dread it. Even though I’m “lucky” and for all intents & purposes my cancer is gone, as I’ve learned from the brave cancerchicks who’ve gone boldly into the night before me, it’s never over, and the fear of recurrence is always there.
That’s where Dr Elizabeth Mittendorf comes in. She’s a professor of oncology at M.D. Anderson and this study’s chief investigator. She says that cancer researchers such as herself are “in the dawn of a new era” as they manipulate the immune system to recognize cancer cells and prevent or treat the disease.
The potential vaccine, called AE37, trains the body’s immune system to attack the infamous HER2 protein, which helps tumors grow and which is present in the vast majority of BC. One of the most important factors in a BC diagnosis is whether the cancer is HER2 positive or HER2 negative. Upon diagnosis, one waits to hear that HER2 status. HER2 positive breast cancers tend to be more aggressive and harder to treat. The hope with AE37 is that the proteins that make up HER2 will be taken down. Dr Mittendorf says, “If some rogue tumor cell is floating around, AE37 can recognize it and take care of it before it can settle into bone or other parts of the body. It’ll teach the T cells to recognize that HER2 protein. So the thought would be that if the T cells were educated in this way, if the tumor cell were to come back, the immune system could identify it, attack it and destroy it before the patient would have, as we see, a measurable recurrence.”
The beauty of AE37 is that it may be helpful in fighting other types of cancer as well. Because HER2 proteins occur in prostate, ovarian, and gastric cancers as well as in breast cancers, AE37 has a lot of potential across the board. For “lucky” breast cancer gals who are HER2 negative, like me, the potential vaccine may still be helpful. Dr Mittendorf is excited that the vaccine seems to reduce the risk of recurrent breast cancer in women who had both high and low levels of HER2. Mittendorf and her team studied 201 patients whose average age was 50 and who had previously had BC but who are currently cancer-free. Half of them received the vaccine, while the other half did not, and the initial results are encouraging. Mittendorf says, “We projected that breast cancer would come back for 10.3 percent of the women who got the vaccine compared with 18 percent of the women who had not been vaccinated. That translates to a 43 percent reduced risk of recurrent breast cancer.”
While AE37 won’t replace the traditional treatments — mastectomy, chemotherapy, and radiation — it could become part of standard care and would likely work in combination with the weapons currently used against the disease. The vaccine is given once a month for 6 months and then every 6 months for 3 years. While AE37 needs some fine-tuning, and a longer-term study would yield more information into its potential, this is very good, extremely hopeful news for those of us in the BC trenches. The fact that it may be able to cut recurrence rates nearly in half makes me giddy. The fact that this important research is taking place in my city is an added bonus. Kinda makes me want to run on down to Anderson and deliver some fresh-baked cookies to Mittendorf and her team. Just a little token of my appreciation for all their hard work. Should I make chocolate chip or snickerdoodles? In this case, I think I’ll make both.
A sliding scalePosted: November 28, 2011 Filed under: breast cancer, cancer fatigue | Tags: Billy Joel, cancer battle, cancer diagnosis, MD Anderson, Only the Good Die Young, psychological effects of cancer 6 Comments
Words and images of battle are often ascribed to cancer. Some cancerchicks take issue with that but I’m not one of them. Having written this blog — mostly about cancer — for the last year, I’ve come to realize that it’s hard to talk about a cancer battle without well, calling it a battle. I’m not even sure what else one would call it. “While undergoing treatment for breast cancer” seems rather cumbersome; “While undergoing treatment for breast cancer, I lost my mind, gained weight, and grappled with a whole new set of issues” doesn’t quite work, but “While battling breast cancer, I lost my mind, gained weight, and grappled with a whole new set of issues” is a bit more succinct. “During the time in which I was ridding my body of cancer” is pretty clumsy, but “During my fight against cancer” works quite well. I like efficiency, so the battle metaphor works for me.
One thing I don’t like about it, though, is the idea that those who “lost the battle” with cancer didn’t fight hard enough or were somehow at fault. Cancer is totally random, people. It strikes those who take excellent care of themselves as often as it strikes those who are not so careful with their health. Survival depends on a lot of things, and sadly, sheer force of will is pretty low on the list. If survival were tied to will, my sweet mama would be alive and probably ringing me up on the phone right now to ask me if I’ve mastered the art of pie crust yet and to suggest that I let her little darlins, aka my children, have enormous ice cream sundaes for breakfast. She fought like hell and did every single thing her team of doctors at MD Anderson told her to do, no matter how tired she was or how crappy she felt. She endured more awful stuff than I like to remember. She wanted to live to see her little darlins grow up (and to hassle me about not giving them enough treats/presents/leeway/benefit of the doubt). She fought like hell, and waged a mighty battle, and was a tireless, non-complaining warrior. And yet, she still “lost.”
Cancer, and the battle one’s life becomes when diagnosed, is on my mind today, as it often is, but today even more so than usual. Another friend has been diagnosed, and my heart is so heavy. My thoughts return to her often, and I’ve felt just plain sick ever since I heard the terrible news. Cancer comes after people indiscriminately, and it seems to me it gets the good ones just as often as the mean ones. My newly diagnosed friend is most definitely one of the good ones. She deserves so much better than pancreatic cancer. How someone with such a sweet and gentle nature and such a giving heart can fall victim to such a merciless fate is beyond me. And yet, she begins her epic battle today.
I’m not naive enough to wish for a world free of cancer. But I do wish there was a sliding scale. If you’re going to get it, in all its ominous forms, why can’t the scope of the disease be equal to how nice a person you are? Why is it that “only the good die young,” as Billy Joel sagely points out? It’s just not fair for cancer to wage war on someone who is patient and kind when someone who’s vain and shallow gets a free pass. Or for cancer to creep up on someone who’s worked all his life and is ready to finally enjoy retirement, while someone who’s dishonest and rude escapes unscathed. I just hate that cancer pounds on the door of someone who’s trying to do all the right things, yet skips completely the person whose main concern is keeping up with and besting her neighbors. Where’s the sense in cancer claiming a delightful human being who would give you the shirt off her back, yet ignoring the not-so-delightful human being who is petty and small?
I’d like this system a lot better if there were a sliding scale.
Square onePosted: November 17, 2011 Filed under: breast cancer, cancer fatigue | Tags: cancer diagnosis, MD Anderson, missing mom, Nido Quebein, oophorectomy, postaday2011, psychological effects of breast cancer, square one, the Big Dig 7 Comments
“Your present circumstances don’t determine where you can go, they merely determine where you start.”
Thank you, Dr Nido Quebein, for telling me that. After the rough start I had last week, I was disheartened at the idea of starting over — from Square One — in finding a surgeon to do my oophorectomy. I needed a little attitude adjustment and Dr Q’s lovely quote provided just that.
Here’s the thing: my cancer “journey” has been long, complicated, circuitous, and seemingly endless. What is essentially a rather simple cancer that should have been easy to eliminate turned into a wild game of “how much can you take?” Just as I thought I was nearing the end of my “journey,” with what could be my last revision to reconstruction, the game became more intense and complicated and pretty much blew up in my face.
The next step of my “journey” should have been quite simple — have a routine procedure to remove my ovaries and eliminate the hormone production that fed my cancer. It’s outpatient surgery and rather easy compared to what I’ve endured thus far. But rather than being simple and working according to plan, it got hairy and I got overwhelmed. The idea of yet another doctor becoming involved filled me with dread, and it was like I was back at the beginning of this “journey,” newly diagnosed and jumping through hoops, frantically doing what’s needed to get to the next step.
Here’s where we are now: after standing on my head and reciting the alphabet backwards while juggling flaming batons, I was granted an audience with the lovely lady who schedules appointments for the next doctor in my ever-expanding roster. Oh happy day, after trying for 4 days to get through to this lovely lady, success was mine! I learned that this doctor only has office hours on Tuesdays and Thursdays because she’s in surgery every other day. Makes perfect sense, as she is a GYN oncology surgeon at the world’s #1 cancer hospital. What doesn’t make sense is why her staff doesn’t seem to be around on those other days. But apparently that’s not my concern and as long as I jump through the right hoops, maintain my headstand and keep those flaming batons twirling, I will eventually get what I need.
Silly, silly girl.
You’d think I would have learned at some point on this wretched “journey” that even when one does all the right things, and completes all the required steps, one still does not get what one needs.
When a human voice finally appears on the other end of the line, I think I’m going to actually schedule an appointment. I’ve cleared my schedule to accommodate hers. I am ready and willing to appear in her office at MD Anderson whenever she can see me. It’s the absolute last thing I want to do, mind you — see another doctor about another surgery. To add insult to injury, factor in the psychological warfare involved in knowing that this next doc works in the same facility–and in the same department–where my mom sought treatment for her cancer, and her “journey” didn’t exactly have a happy ending. Not even close.
Nope, scheduling an appointment isn’t that easy. First, there’s the prerequisite litany of questions: name, address, phone numbers, email address, birthdate, insurance carrier, group number, ID number, policy holder’s DOB and SSN. Then comes the question of what’s your diagnosis? When I replied, breast cancer, the lovely lady not so lovingly informed me that this office doesn’t deal with breasts. Duh. I patiently replied that I understand that and know that this office deals with the more southern ladyparts, but because of my breast cancer, I need to consult with this doc on an oophorectomy. Seems clear, right? Then the lovely lady wants to know why I want to have my ovaries removed.
Because I’m bored. Because it’s been too long between surgeries for me. Because I miss the prick of the IV desperately searching for a vein in my tapped-out venous system. Because I’m lonely for the company of people in scrubs & white coats. Because I’m hankering for the smell of Betadine and the commotion of the OR. Because I long for the feel of the plastic mask on my face as I lie completely naked under a bright light in a room full of strangers. Because I’m hoping to lose a few lbs before the holiday glut and think the all-day vomiting that inevitably comes to me after anesthesia is a good diet plan. Because I haven’t spent enough time recuperating from surgery while the world around me marches ever onward.
If there’s a contest for most horribly worded question, this lovely lady would win it, hands down.
Once again, I’m called upon to gather my composure and marshal my manners to answer. I resisted the mighty temptation to give her a smart-ass answer and calmly replied, because my oncologist recommends eliminating the source of the cancer-causing hormones. I wonder if the lovely lady could tell I was answering her through tightly-gritted teeth and with fists clenched as I battled the urge to make her ears bleed from a long, colorful line of cuss words. I wonder if I should have told her that when you’re diagnosed with cancer at age 40, with elementary-school-aged kids at home, and when your own sweet mama died an anything-but-peaceful death from cancer at the still-young age of 67, you’ll take whatever steps are necessary to increase your odds against this savage killer.
Lovely lady went on to inform me that I would need to provide documentation of my breast cancer being ER+ and PR+ (estrogen and progesterone positive), along with a host of other documentation. I would need to provide pathology reports from my breast biopsy in April of last year, when the idea of becoming a cancer patient was the last thing on my mind. And go ahead and throw in the pathology reports from my bilateral mastectomy and the paperwork on my last Pap smear, too. Wait–don’t forget to have Dr P, the OB-GYN who referred me to the GYN oncology surgeon, send his notes as well. After that, and after verifying my insurance, the GYN oncology surgeon will review my case and see if there is sufficient evidence to proceed. Lovely lady promised to call me back and let me know where I stand.
Ok, so more hoops to jump through, more due diligence on my part. Luckily I’m a rather fastidious cancer girl, and I have a very thick pink binder containing copies of everything the lovely lady requested except the Pap report and Dr P’s notes. Two phone calls and one online consent form later, that information is en route to LL.
Hurry up and wait.
After making the phone calls and gathering my records, I faxed 24 pages of the juiciest details of my breast cancer. All the nitty-gritty deets about tumor markers, mitotic index, prognostic markers, lymphovascular invasion scenario, anatomic pathology diagnosis, sentinel lymph node results, tumor size, and Elston-Ellis modified scores. It’s a fascinating read. And a wonderful trip down memory lane, just as I think I’m putting a little distance between myself and the cancer show.
I’ve done my part, now I wait.
I live nowPosted: 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.
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.
It’s my cancer-versaryPosted: 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 Comments
One year ago today the bottom fell out of my carefully-ordered life when I was diagnosed with breast cancer.
To say that a lot has happened in the last year is an utter waste of words. I’m not sure there are words to convey how much has happened in the last year; if there are, they are reserved for better writers than I.
Being diagnosed with cancer at age 40 is a shock. Duh. It’s scary and unexpected and unnerving. Double duh. 40 is when we hit our stride. For me, it meant my kids were old enough to not need constant supervision but to still need my guidance. I’d recently discovered tennis, the new love of my life, and had time and freedom to play often. I had a tight circle of friends who knew who they are and where they want to go. I was very comfortable with the direction of my life and the steps I was taking to make it the very best it could be.
Then came cancer.
That vicious beast had already stolen my sweet mama from me, when she was only 67. I was 36 and finding my own way as a mother, and needed her input and presence. But more importantly, I needed her friendship. She and I never had the contentious relationship that a lot of mothers & daughters have. We always liked each other. Maybe because we were a bit opposite: she was yielding and I was (am) opinionated. But maybe we just got lucky, and had that special relationship that some fates bestow upon some people but not others. The reason for our good relationship is immaterial; the fact was, we treasured each other, and losing her was the worst thing to ever happen to me.
Until April 27, 2010.
My guardian angels were asleep at the wheel.
I’d been getting baseline mammograms since my mom died, since hers was a reproductive cancer and that put me at a slightly greater risk. More so, though, was my OB-GYN’s diligence. Her husband is an oncologist at MD Anderson, so she’s super-tuned to cancer and its sneaky ways of getting its foot inside the door. She saved my life. Pure and simple. And monumental.
When the news came on this day last year, I listened to everything Dr Dempsey told me about my cancer, as Boss Lady Staci dutifully took notes in Trevor’s stead as he hustled home from a business trip. I held it together until the end, when she asked if I had any more questions and I had one: how do I tell my kids?
They’d watched their YaYa die from cancer, and while only 6 and 3 years old, those memories are powerful. They wanted a lot of assurance that my cancer was different in every way from YaYa’s and that it was not going to kill me, too.
One week after my diagnosis, Payton turned 11. I was gearing up for a double mastectomy, but wasn’t going to neglect his celebration, because if we can’t celebrate life and its happy moments, then cancer might as well come and get us all. We had the usual birthday breakfast on the personalized birthday plates, just as we had every year. As I placed his feast in front of him, I muttered my birthday wish, which was to make sure I was around to place that personalized plate in front of him on May 3rd for many years to come. My firstborn isn’t going to celebrate his birthday without his mama if I have anything to say about it.
The day before my mastectomy, Macy and I met Jeffrey, the orphaned mockingbird rescued by Amy Hoover’s family. We’d been hearing about this little guy, and my animal-loving girl needed to see him for herself. I had a million things to do to prepare for not only surgery but also weeks of dependency, but we made time to meet Jeffrey, and I’m so glad we did.
Mastectomy day, I was up bright & early and ready to get the show on the road. Here I am at the hospital waiting to get de-cancer-fied.
Two weeks later, I turned 41. I celebrated in typical fashion, with a girlfriends’ lunch and champagne that night. White cake and bubbly are two of my favorite things, and they just say “party” to me. I didn’t feel great, but I was determined to greet the next year in my life with a glass in my hand and a smile on my face. Being surrounded by my best girls during the day and my family in the evening reminded me that life goes on and that while my recovery was hard, it was do-able, so take that, cancer.
A few days before my birthday, I strapped on as much determination as I could muster and took Macy to see Taylor Swift at the Toyota Center with her best bud, Ella, and my partner in crime, Jill. I was so afraid of being jostled by the crowd, as I was still pretty sore and healing was far from complete. But I wanted to be there and be a part of that big event, and to prove to myself that life doesn’t stop for cancer. I’d lost my breasts but not my drive. The glowsticks burned brightly as the music thumped, and I sat next to my favorite girl and soaked it all up. Every last drop.
Good thing I did, because my healing and happiness were short-lived.
Macy had just posted this on her chalkboard, and for all we knew, the worst was behind us and it could only improve from there. Hahahahahahahahahahahaha.
Just as I felt like I was really recovering from the mastectomy, the nosocomial infection entered my life. A curveball? And how.
Hospitalized for 9 days, pumped full of antibiotics, right tissue expander removed and left expander drained, my life took a decidedly unpleasant turn. It took 6 weeks to diagnose the mycobacterium, and nearly a month total of days spent in the hospital. That first 9-day stay was the longest of my hospitalizations, but also the scariest because the infection was hiding under the tissue expander, hard to diagnose but making me really, really sick. A month after the 9-day stay, I was back in the joint. Out for 3 days and back for 5 more days. Then, out for 2 weeks and back in for 3 days. A seemingly never-ending cycle. Each time I had to go back in, Macy would hand me Froggy, her most beloved of all her “crew” of stuffed animals. He’s been with her since she was a tiny baby and has enjoyed favored status among the masses of other stuffed animals. He’s been in her bed every night and has gone on every trip she’s taken, and she gave him to me to take on each trip to the hospital. He had a bath in hot, bleachy water with an extra rinse every time he came home to her.
She also gave me Baby Snoopy, another coveted member of the “crew,” and my heart swells at the idea of my baby girl’s thoughtfulness. Though she hated to see me go back to the hospital, she knew her “crew” would comfort me in her absence.
Gross picture, yes, but I did make it smaller so you don’t have to see it in all its glory. Apologies to Christy, who hates this kind of stuff, and Julie: you’d better start skimming because this is the icky part. The aftermath of the mycobacterium is unpleasant, for sure. And this is not the worst shot there is; this shot was taken after much healing had occurred, believe it or not. The wound left behind by the infection was 5.6 cm long, 3 cm wide and 2 cm deep. That dang bug wreaked a lot of havoc on my already-ravaged right chest wall, and it killed what little bit of healthy tissue was left after Dr Dempsey scooped most of it out to rid the cancer. It’s an insidious bug that is hard to treat. It’s not drug-resistant, like MRSA, but it is very slow-growing and so it responds slowly to antibiotics. Hence the long, long, looooooooong course of oral abx and the multiple rounds of IV antibiotics, at home and in the hospital. I still have this collection on my kitchen counter, to take twice a day, but luckily haven’t needed the IV version since the last go-round in March. No idea when I’ll get off the oral abx, but sweet Dr Grimes, my infectious disease doc, has told me that he has patients who are on abx therapy for years. Years. Plural. Egads.
Trevor and I became fluent in home health care and learned how to administer the vancomycin and cefapim all by ourselves. The learning curve wasn’t steep, and the whole process was very systematic. My home health nurse, Chona, was as kind and competent as could be, but the gravitas of my situation was clear.While I dreaded it and resented the 3 hours it took twice a day to infuse, I counted my blessings and reminded myself that it could be worse: I could be getting those drugs via IV in the hospital. Again. Which is why I smiled for the camera, tethered yet again but happy to be at home, with Snoopy to keep me and my IV pole company. And yes, that is a glass of wine on the table next to me. It was a dark period in my life, people; don’t judge.
Remember Sucky, the wound vac? This photo is harder for me to look at than the one of the wound. Oh, how I hated Sucky. Necessary, yes, but hateful. And that’s all I’m going to say about that.
This is what Sucky’s appendage looked like strapped to my body, so it could suck out the gunk and speed the healing from this curveball. The size of the plastic sheeting and the tape required to keep the Sucky train rolling was big enough to give me the vapors, and my poor skin is shuddering at the memories right now. And isn’t everyone thankful that I didn’t have a better camera than the one on my iPhone? Imagine how gruesome the photos would be! Oh, the horror.
The amount of supplies needed to deal with that wound was staggering. The home health stuff was delivered in big boxes, which cluttered up my office and dining room for a day or two before I said enough! and organized everything to minimize its presence. Out of sight, out of mind (sort of). I pared it down as much as I could.
I became proficient at prettying up the ugly truth of cancer treatment, and its equally- ugly friend,infection aftermath, fared the same. I may not have had control over the mutating cells in my body or the nasty bug that invited itself in post-mastectomy, but I sure could dictate how my surroundings would look during the after-party.
The amount of supplies needed for this fragile existence was great, and so was my need for comfort. That I found comfort in bubbly and coconut cream pie should come as no surprise to anyone who knows me. I may have been down and out, with cancer and infection taking their pounds of flesh (literally), but I was powered by Piper and pie.
The summer wore on and I barely saw the sun. And only then, through the window; I didn’t get out much. Between the hospital stays, feeling puny, IV drugs, and being on guard against germs, I missed out on a lot.
I did make it to Macy’s 2nd grade last-day-of-school festivities. She had something funny to say when it was her turn to take the podium, and although I don’t recall what it was, I’m glad I was able to be there to see her in action. I also dragged my sorry carcass to Payton’s 5th grade farewell. My friends in high places in the school volunteering world pulled some strings and had a reserved seat for me, along with a parking cone to save a parking place for Mary, who carted me there and back. My baby was moving on to middle school, and I was moving slowly–very slowly–toward recovery, from cancer and infection.
Right before school ended, Payton was honored with a spot on the All Star team. This boy lives & breathes baseball, and has from his earliest days, so this is a big deal.
The team went from District to Sectionals to State (or maybe Sectionals to District to State), and I made it to 1 game. Being in the hospital while my favorite player did that thing he does best was hard on this mama. His team had a lot of heart, in addition to some mad skills, and they were kind enough to play in my honor for the duration of their run toward State champs. I’ve never been more honored and humbled as when he came home from practice the night before the first tournament (District? Sectionals?) with a pair of pink sweatbands on his wrist. Learning that the entire team was wearing the pink, for me, moved me, and like the Grinch, my heart swelled to maybe a normal size.
I’ll be forever indebted to all the other All Star moms who cheered for my boy and provided yard signs, pool parties, custom shirts, and child-wrangling assistance in my absence, at our home field and on the road. Missing the games was hard, but knowing that my circle of baseball moms had my back made it bearable. And having my signed photo of the boys in red (with a dash of pink) brightened my hospital room and my spirits. That frame now sits on my dresser, and every day when I see it I remember not only the special summer of baseball success but also the pure hearts of the families on that team who helped my own family in our time of need.
Good things can come from a bad situation. There is hope inside a diagnosis. You get a measure of the depth of people’s kindness, which comes out in lots of ways. Like custom cupcakes. I liked that one a lot, and so did my kids.
Like a card signed by the staff at PF Chang’s during a celebratory lunch. Our waiter knew we were celebrating some good news in the cancer battle and took it upon himself to have his co-workers celebrate along with us. I said it then, and I’ll say it again: Eat at Chang’s!
My friend Paula from Duke ran in the Salt Lake City Race for the Cure in my honor and sent me her bib from the race. At that point, I was a long way from even considering doing a 5K, so it did my heart good to know she was out there, pounding the pavement among an army of pink and thinking of me.
One weekend in between hospital stays, Macy and I snuck away to Galveston with Christy and her daughter Alexis, for a much-needed break from illness, wound care, and calamities. Macy caught a huge fish off the dock, and seeing her proud smile made the trip even better. There’s something magical about the sunset off the water, and I savored the splendor.
Before the summer was over, we had the chance to puppy-sit this little beauty a couple of times. If puppy kisses can’t cure me, I don’t know what can!
Once word got out that the puppy-sitting business was up & running, we got to keep Pepper for several days. My kids loved having her to snuggle with on the couch, and I relished the idea that the hard times were morphing into better times.
School started, much to my children’s chagrin, and Payton went off to middle school while Macy began 3rd grade. A few days after school started, I was fresh out of the hospital, she and I rocked out at the Jack Johnson concert in the Woodlands. Because I had been hospitalized, again, so recently, my attending the show wasn’t a sure thing. I still had the dressing on my port-a-cath and wasn’t feeling great. What is a sure thing, however, is that I’m as stubborn as cancer is shitty, so I made it to the show.
August and September were spent recuperating, and at the end of September I hobbled myself on down to Tootsies, a chichi clothing store in the high-rent district that was outfitting survivor models for the Couture for the Cause fashion show. I’d only been out of the hospital for a month, but I had committed to doing the show and I made good on my word. Scared breathless and unsure of myself are not states in which I commonly find myself, but the fashion show landed me smack dab in the middle of “What in the world am I doing?” territory. I wasn’t wild about the dresses I wore, but my shoes were a-maz-ing and the experience is one I truly will never forget. Oh, and we raised almost $100K for the cause.
October signaled the return of some normalcy. I was able to put together something I’d daydreamed about a lot in the hospital: the First Annual Pink Party. I wanted to gather my circle of girls who had seen me and my family through the roughest part of the “cancer journey” to show my thanks and spend some non-sick time together. With the pink theme, yummy food (if I do say so myself), and plentiful drink, it was a smash success.
We seemed to have the infection under control and the antibiotics were doing their job, and after a much longer-than-anticipated hiatus, I was back on the tennis court. My sweet tennis friends gave me a little trophy that says “Winner,” and it’s the best trophy I’ve ever won.
This little trophy soon had a friend, though, after Boss Lady and I won the Witches’ Open at the end of October. Being back on the court with my tennis friends was so great. Tennis is very good therapy.
As if that day wasn’t fun enough, that night was the Maroon 5 concert in the Woodlands. Tennis, then dinner and the show was a balm for my battered soul. We ate & drank then sang along with Adam for an unforgettable night.
Before too long, fall was upon us (or what passes for fall in Houston), and we readied ourselves for the holidays. Thanksgiving was spent with Team Cremer, with everyone contributing something to the feast. The kids worked off their meal with the traditional post-turkey swim. We had a lot for which to give thanks.
Christmas and the New Year came and went, and before I knew it was time to start making preparations for reconstruction. The Big Dig was a big step, and I had hoped it would signal the end to my “cancer journey” and allow me to put all that hardship behind me. Adding another doctor, and another Dr S, to my cast of characters could only mean one thing: I was going in for a very big surgery.
The DIEP procedure is amazing and hard, in a lot of ways: time consuming, intricate, detailed, and not infallible. Babying the newly transplanted skin, tissues, and blood vessels was hard work, and the crack team at Methodist in the med center did an outstanding job.
This is what I looked like before The Big Dig:
and this is what I looked like 3 days later, leaving the hospital:
It was a hard 3 days, no lie, but at least I was going home. One thing I would miss from the hospital was the morphine. Oh, how I love that stuff. I guess a lot of people do, too, because they guard it closely and I got a laugh from the ping-pong-paddle-key used to replenish my supply. Kinda reminded me of a gas station restroom key.
One thing I would not miss from the hospital was this chair.
This was the chair in ICU that I had to hoist myself into, after hoisting myself and my 17-inch-long abdominal incision out of bed. Again, it’s a good thing I’m so stubborn, because it would have been easy to roll over, say this is too hard, too painful, too much. But by golly I was going to get out of that bed and into that chair no matter what, and with my morphine pump in hand, I did just that. I don’t think I cussed too much, either.
Recovery from The Big Dig is ongoing, and they say it will take a while longer. I’m not the most patient person, and I’m ready to have everything back to normal. Of course I know there’s a new normal, and it progresses at its own pace, not mine. It’s been a long, tough “journey,”and it seemed that everything that could go wrong did go wrong, for a while.
But a lot of good things have happened, too. I started blogging, for one, with Pedey at my side or in my chair, or both; who knew so many people were interested in my little “cancer journey?” It’s humbling and rewarding to see my “readership” grow, and I am immensely grateful for all the love and support that’s come my way. Someday I may have no cancer-related news to share. How weird will that be? I imagine I’ll find something to talk about in this space, nonetheless.
I will have more stories to share about my adventures with Dr S. There are a couple of revisions that he needs to make to his palette that is my newly constructed chest, and while we argue about the timeframe for that, it will likely provide blog fodder and laughs along the way.
One year ago, life took a decidedly unpleasant turn. Cancer entered my life like an afternoon storm along the Gulf Coast.
And like the butterfly bush in my backyard that was uprooted and tossed around by high winds recently, I weathered the storm. I’m setting my roots and hoping that the winds that blow my way in future are calmer.
Like the pillow on my bed says, I am a survivor.
Front-page newsPosted: February 9, 2011 Filed under: breast cancer, drugs, Uncategorized | Tags: breast cancer, breast surgery, cancer diagnosis, Houston Chronicle, infection, lymphedema, mastectomy, MD Anderson, New York Times, radiation, recovery 3 Comments
An article on the front page of the Houston Chronicle today says that big changes are in store for the breast surgery required for cancer treatment. A new study from our own local attraction, M.D. Anderson, found that women with early stage breast cancer don’t need to have their lymph nodes removed, even if the nodes are cancerous.
This is big news. Breast surgeons are calling it “practice-changing” and proof of the old adage that “less is more.” Dr Kelly Hunt, surgery professor at Anderson, says, “The study shows that we don’t have to take out huge swaths of tissue, that we can avoid aggressive surgery without any effect on outcome.” Personally, I’m a fan of anything that avoids removing huge swaths of tissue. Ick. Ugh. Yuck. Been there, done that. More than once.
This new study pokes holes in the century-old belief that a surgeon’s job was to cut out every bit of the cancer, and found that removing the lymph nodes didn’t give women any benefit over radiation and drug therapy alone. The prevailing science has been that removing lymph nodes helps prevent the cancer from spreading and/or recurring.
Removing the lymph nodes from the armpit area is a hot mess waiting to happen. You’ve got the cosmetic issue of ending up with a concaved surface. You’ve got the potential for infection (ahem). You’ve got the risk of lymphedema, which is painful swelling in the arm that cannot be cured. Anyone who has ever seen a photo of a limb swollen to multiple times its normal size because of lymphedema knows to fear this condition. I’ve met several breast cancer survivors on the tennis court since I returned to the game post-mastectomy and post-infection, and more than one of them played with a compression sleeve (a form-fitting garment that goes from wrist to shoulder) to stave off lymphedema. Tammy, my dear lymphedema specialist, made me take one of those bloody things home to keep in my drawer, “just in case,” because the really stinky thing about lymphedema — aside from the fact that there’s no cure — is that it can come on at any time. Women have gotten it years after a mastectomy, with no prior symptoms.
If you want all the nitty-gritty details of the study, you can read the New York Times article, which goes into a little more detail than the Chronicle’s story. The Chronicle does get credit for providing more info about Anderson’s role in the study. We like to root for the local team. Seems 100 of the 891 patients in this study were from Anderson, and the researchers originally planned to expand the study to include 1,900 women, but shut down the study before that happened because the results were so overwhelmingly conclusive.
I like overwhelmingly conclusive results. You don’t find a lot of them in medicine. I’ve learned that the hard way in my “cancer journey.” I’m a black & white, just-the-facts-ma’am kind of girl, and I found myself smacking my head against a wall more than once in pursuit of a concrete, yes-or-no type answer. In medicine, precious few of those exist. I suspect that’s why it’s referred to as “practicing” medicine.
In fact, Dr Grimes, my infectious disease doctor, has spoken of practicing the art of medicine as much as the science of medicine. I really like the way that sounds, as if it’s so very civilized and full of aesthetic value. In reality, it’s a balancing act of drug therapy vs side effects; of benefit vs cost; of how far can we push the body yet still maintain the integral strength necessary to fight the disease.
In other words, there is no overwhelmingly conclusive answer. And sometimes the doctors don’t know themselves what the right answer is. That’s why it’s so nice when a study comes along that says, yes, for sure this is the right thing to do.
I’m super happy about this big news. I hope it lives up to its potential to make life easier for the 200,000 women a year diagnosed with this breast cancer. And I really hope that it’s just a teaser of what big breakthroughs in breast cancer research are yet to come.