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.
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?
Editor’s Note: There’s a glitch on WordPress that is hiding my hard returns, so this is one long post without the usual breaks in text to give the eye a rest. Apologies.
“The people who get on in this world are the people who get up and look for the circumstances they want, and, if they can’t find them, make them.”— George Bernard Shaw
Love this quote. Love GB Shaw, too. Apparently he didn’t like the “George” and refused to use it, personally or professionally. That’s why I call him GB Shaw.