Time for that to change.
At least for today.
No doubt I’ll be up on my high horse again, ranting away about the evils of cancer or the lunacy of Rick Santorum or the despicable-ness of Rush Limbaugh.
But not today.
Today is about smiling so hard my face hurts. About being in the company of girlfriends so funny and true. About belly laughs. About soaking up the sun and feeling the breeze.
To assist me in my pursuit of all things jovial, I present the latest list from my favorite girl: Five Things The Internet Loves. I’ve no idea why she wrote the list, or what spurred this bout of out-of-the-box creativity, but like the best things in life, it doesn’t matter.
Her spelling is a bit off, but that doesn’t stop her from getting her message across:
1. People getting hurt/embarrassed
2. Animals doing ridiculous things
3. Old people rapping
4. Little kids cussing
5. Fat people dancing
Lyle Lovett said it best:
I understand too little too late
I realize there are things you say and do
You can never take back
But what would you be if you didn’t even try
You have to try
So after a lot of thought
I’d like to reconsider
If it’s not too late
Make it a cheeseburger.”
I don’t eat cheeseburgers, or any burgers, but I love Lyle Lovett, and his clever and playful lyrics have been running through my head all day as I contemplated my latest visit to my cutie-pie oncologist. Last time I saw him, we discussed whether I need yet another surgery, to remove my ovaries. See, those little suckers pump out estrogen, and estrogen happens to be fuel for the type I cancer I had. So the theory is this: cut off the fuel, starve the cancer and ensure it has nothing with which to reconvene. Since I wasn’t physically well enough to undergo the oophorectomy because of the post-mastectomy infection, we put that surgery on hold, but in the meantime I began getting a shot of Lupron once every 3 months. Lupron essentially does the same thing as removing the ovaries, which is to shut off the supply of estrogen.
I thought the plan was set: continue the Lupron shots until I was deemed well enough to undergo the oophorectomy, which would likely be in the fall of this year. Get the kids back to school, recover from the August 17th reconstruction revision, and get rid of the ovaries. I like having a plan. I like sticking with a plan. I’m not a fan of changing the plan.
Today, Dr Cutie Pie said he didn’t think I needed to keep getting the Lupron. I’ve been getting the injections for nearly a year now, so even though I was scheduled to get one today and was planning on getting one today, he thought I was done. The plan had changed.
Granted, I had complained to him about the major side-effects of Lupron: hot flashes and sweating like a pig in heat. It’s summertime in Houston. Not just regular old hot-as-Hell summertime in Houston, either, but record heat and record drought summertime. I can tell you with 100 percent certainty that hot flashes and Houston summertime are a wretched combination.
Do I think the hot flashes and sweating like a pig in heat are sound enough reasons to discontinue the current path of hormonal suppression? No. I haven’t murdered anyone (yet). Dr CP said there’s really not that much difference between hormonal suppression from Tamoxifen alone and suppression supplemented even further with Lupron. A year of Lupron injections seemed to be enough, in his opinion. The daily Tamoxifen will go on, though.
Disclaimer: I did not beg, whine, or persuade him to make that decision. Not like I did last summer with Dr S when trying to sway him to release me from yet another hospitalization or disconnect me from the dreaded wound vacuum, Sucky. I did not employ any such tactic with Dr CP today. He came up with the idea to cease & desist all on his own.
He also said maybe that oophorectomy isn’t necessary, either. While I’m completely in favor of eschewing yet another surgery, my gut instinct tells me to rip those ovaries out (gently, though, and with lots & lots of morphine).
Life is so uncertain. What’s the right choice? How does one make such a decision? Stop the Lupron or not? Pursue the oophorectomy or count my blessings that I won’t need another surgery? Where’s the Great and Powerful Oz to tell me what to do?
That’s the problem with cancer. One of the many problems. Big-ass decisions need to be made; life-and-death decisions. And while there’s research aplenty and resources available, there’s no clear answer. I like clear answers. And unchanged plans. Neither of which prevails in one’s “cancer journey.”
Nonetheless, we moseyed along through the rest of the check-up with the usual and quite popular assertions from Dr CP that my cancer is not coming back. I like that part. He says this at every visit, and I really like hearing it. He told me that my reconstructed chest looks fantastic, and I really like hearing that (even though I think he’s shining me on, because there is definitely some tweaking and fine-tuning that needs to be done). I still like that he says it, though, even if he’s shining me on.
We chitty-chatted about his new baby, my tennis game, and other pleasantries. He said he’s started playing tennis and is thinking about taking some lessons. When he told me he plays once a week, I told him he’ll never get better that way; it’s not often enough. He got all puffed up and said it’s enough for him because there’s such a thing as talent.
In the immortal words of Steve Martin, “Well, excuuuuuuuuuuuuse me!”
He even strutted down the hallway a bit, then turned to say something about how he’ll be ready in about 6 months to kick my butt on the tennis court. I said, maybe in about 60 years.
How on Earth do I manage to find such cocky doctors?????
We parted ways, him to daydream about beating me in tennis while I headed to the infusion room to get my port flushed. For the last time. Ever.
Yipee! That makes me very, very happy. I’ll get my port removed next month, when Dr S does my reconstruction revision. Can’t wait to bid adieu to that little guy (the port, not Dr S).
But while in the infusion room, I started to second-guess the decision to stop taking the Lupron shots. It didn’t feel right to me. The instant-gratification-girl inside me said, “Hell, yes, let’s forego the shot — that sucker hurts and leaves me bruised for weeks.” But the more-measured-approach-taking girl inside me said something doesn’t seem right with this decision. What’s the harm in continuing the Lupron therapy (besides the obvious, 20-gauge needle harm, that is, and the hot flashes and sweating like a pig in heat harm)?
Dr CP walked by a few minutes later, as I was discussing the pro’s and con’s with my patient advocate extraordinaire, Amy Hoover, and we grabbed him to say I’m not sure about the Lupron decision. He listened intently as we reviewed the pro’s and con’s and said there’s no harm in getting the shot. So I got the shot. Still not sure if it’s the right choice. No idea if it’s the right decision. My gut says yes, and my gut usually is right. However, the fact that it took 3–count ’em–3 tries to get the shot makes me wonder. The needle went in, but the Lupron wouldn’t go. Ow! 3 needle sticks with a 20-gauge needle could easily make a girl question her decision to question her decision. But, as Lyle Lovett says, “Life is so uncertain.”
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.
Today’s the day, people.
I’m paying a call on my true love. Nope, this isn’t a tell-all expose a la Arnold Schwarzenegger.
I’ve been cleared by my favorite doc to start playing again. To ease back into it and with specific instructions to stop in my tracks if I feel even a tiny pull in my 17-inch-long belly incision. That super-long, super-bad incision is healing up quite nicely, and it’s my job to guard it and baby it.
When I got the green light from my favorite surgeon, I asked his nurse to please put a note in my file and have him sign it to that effect. A permission slip of sorts, so that when I see him again in a couple of weeks and mention tennis, he doesn’t forget he’d given me the go-ahead. The last thing that man and I need is another argument. Although, it has been a while since we had one….
With the tennis ban being lifted, I realized that I haven’t so much as picked up a racquet since The Big Dig, nearly 3 months ago. In fact, I had to dig around in the garage for my tennis bag. Sadly, it had been consigned to the garage instead of riding shotgun like normal, and it hung on a hook, quite forlornly, I might add, all this time. Over the course of almost 3 months, things like stadium seats and insulated cooler bags were hung in front of my beloved bag, and it took on the role of wallflower instead of constant companion. I had to take my racquet out, just for a sec, and hold it in my hand. Just like old times.
Today’s return isn’t full of the fanfare the met my return to the court last fall, after finally triumphing over the God-awful post-mastectomy infection and all its myriad complications. You loyal readers know the story so I won’t bore you with the details yet again, but suffice to say that the bilateral mastectomy would have been enough, but the nosocomial infection that required 3 more surgeries, nearly a month in the hospital, and endless antibiotics was really enough.
No fanfare, because while returning to tennis after the mastectomy and infection mess was a lot, but it’s easy compared to recovering from the DIEP surgery. Good thing today is just a 1-hour drill, which is the perfect venue for me to see if I remember how to swing that racquet. I’m not giddy with excitement like I was last fall, because the cautious side of me is bracing for disappointment. For this return to not quite work out for me. Although I’ve been cleared, there’s no guarantee that my body is on the same schedule as my heart & mind, and I may well be met with resistance from the battle-weary bod.
See, this is one of the unseen side effects of a cancer diagnosis. Even after getting through all the hard stuff–comprehending the devastating news of diagnosis, all the gut-wrenching decisions, the surgeries & hospitalizations, the never-ending antibiotics & their grueling side effects, the cornucopia of doctors’ appointments, the worry & fear & fatigue–I’m still shell-shocked enough to automatically look for disaster. Although the 267 days of oral antibiotics worked and my infection is cured, there’s still a little part of me that assumes the worst. I can’t even remember the last time my skin opened up to let infected fluid escape, yet I still think I feel it a couple of times a week. It’s PTSD for patients.
So my job today is to say screw the PTSD. Can the shell-shocked tendencies. Bust right through the doubt. Ignore the niggling little voice that asks if I’m sure I want to do this.
Hell yes, I want to do this. More than anything else, tennis to mean means I’ve healed. More than being able to go about my busy little life, more than getting back into the gym, more than being able to lift my arms enough and twist my core enough to dress myself. Tennis means I did it. It’s over.
My friend who also battled the breast cancer beast has dusted off her racquet and returned to the game we both love. While I’m unhappy with the unfinished parts of my reconstruction and she’s unhappy with her not-yet-grown-back-in hair, we’re getting back in the game.
I’m going to take the advice of tennis legend Billie Jean King in my post-cancer tennis strategy:
“Ladies, here’s a hint. If you’re up against a girl with big boobs, bring her to the net and make her hit backhand volleys. That’s the hardest shot for the well-endowed.”
My friend and I are both differently-endowed than we were before breast cancer came to call, but we survived that unwelcome visit and are ready to tear it up on the court. Even if we both get our asses handed to us in match play, I suspect we’ll both be smiling. Happy to be there, happy to have a racquet in hand, happy to be alive.
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.
After 267 days, I finally heard the words I’ve been dreaming about: “We are discontinuing the antibiotics.”
Cue the hallelujah chorus.
I saw Dr Samo instead of Dr Grimes today, and he delivered the most-excellent news. He is my new best friend. All of the cultures run during The Big Dig came back negative, which means we can safely assume the post-mastectomy infection is gone. Yes, at long last, the mycobacterium has been vanquished.
Let me say that again: the infection is gone. I’m cured.
No more twice-daily dose of minocycline and bactrim. No more nausea. No more planning my consumption of food & drink around my doses. No more remembering to take my drugs. No more antibiotics.
Oh, happy day!
I’m still in a mild state of shock, or maybe just slightly buzzed. Could be the celebratory champagne straight away after returning from the medical center (duh), and the margarita at my tennis team’s end-of-season lunch.
We broke out the good stuff and gathered our close circle of friends who would never say “it’s too early” and question the wisdom of popping a cork at 11 a.m. To Amy, my chief medical correspondent and chauffeur to & from appointments: thank you. For everything. To Jill & Keith: thank you for rushing right over, then leaving as soon as the bubbly was gone. But for planning to come back with dinner.
The infection is gone. Ding dong, the witch is dead.
I half expected the citizens of Munchkin Land to come out and dance their little legs off and sing in their froggy voices to celebrate.
I admit, I’ve been wondering all week if my visit to the infectious disease doc today would result in the end of the abx. I was trying to not get my hopes up, and while I knew not to expect it, I would have been disappointed if they’d said keep on swallowing those pills. No matter. It’s all good now.
I will also admit that when the nurse was taking my BP and temp and asking me the reason for my visit, I felt funny saying “yes” to her question of “are you here to see if it’s time to get off of the antibiotics?” It was almost too much to hope for. Almost.
Then when Dr Samo uttered those glorious words of “We are discontinuing the antibiotics,” I was stunned. It was a bit surreal. Once I grasped what he’d said, my first thought was that “discontinuing” meant taking a break, not stopping them altogether.
It was almost too much to take in.
As my best buddy Ed said, “I feel I should shove you and yell ‘Get Out!’ like Elaine on Seinfeld.
“Get Out!” indeed.
The end of the antibiotics is like an end of an era. My life has revolved around them for so long now–one week shy of a year, in which I’ve been on some form of abx, whether oral or IV. Nearly a year on some pretty powerful drugs, and none of them the fun kind. Nope, these are the ones that tear up your stomach and make your insides cry like a baby.
But no more.
The fat lady can sign her heart out right now.
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.
We interrupt the “All Napa, All the Time” marathon with breaking news. Imagine the tornado sirens going off right now (or maybe that’s just in my head). If you’re looking for news of Day 2 of our recent Napa adventure, you’re gonna have to wait.
Yesterday I did something I haven’t been able to do since The Big Dig. I’m very excited about it. It’s been 5 weeks since the excavation that gutted me like a fish in an effort to restore my post-mastectomy sunken chest. 5 long weeks. There are lots of things I’ve been unable to do, and y’all know I’m a very impatient patient. I tend to rush things and push the envelope, and sometimes that results in a set-back, or at the very least, a lot of frustration for my handlers. I’ve been trying, really trying, to be patient, to not rush things, and to avoid any potential set-backs. I’m not much of a people-pleaser by nature, but I do try to keep my handlers happy. They make a lot of noise when they’re unhappy with me.
I rode my bike.
Yes, that’s the breaking news.
Hope you were sitting down, because it’s really big news.
See, I’m one of those weirdos who loves to exercise. I’m restless and have a strong “productivity” drive. Like how some dogs have a high food drive, or our crazy dog Harry has a high “must have something to carry in my mouth” drive, I have a high “productivity” drive. I also like to eat. And drink. But don’t like when my clothes don’t fit, a wonky equation to say the least. Some people don’t care much about food, and I don’t understand them. I’m usually planning my next meal as I’m eating the current one. Different strokes, people.
I’ve mentioned before in this space that I’m not good at lying around, being lazy, and doing that thing called relaxing. What is this practice of which people speak? Apparently I missed the memo, because I’m no good at it.
All this to say that being grounded for the last 5 weeks has been hard for me. I’ve really missed my daily exercise. Whether it’s tennis, the gym, or riding my bike, I miss it. And yesterday, I rode my bike.
Macy and I have a routine of riding to the pet store every day after school to buy crickets for Cincko, her leopard gecko. He’s got a big appetite, and I’m always afraid he’ll start banging on the sides of his tank if he doesn’t get fed. He eyeballs Pedey, our little dog, and puffs himself up as if he’s going to attack that dog the way he pummels the crickets who are dropped into his tank. Thus, the need to procure crickets is a big one, and I haven’t been able to ride with her since my surgery.
Yesterday after dinner, she wanted to go for a ride. Not to the pet store, but just around the neighborhood. After proving to myself and my handlers that I could keep up in Napa last weekend, I felt good about giving it a try. I told Macy I’d do a lap down the driveway and see how it felt. A test run, of sorts. If it didn’t feel good, I’d concede. She reminded me not to push it, that we could wait until I was more healed. That child knows her mama well.
The test run down the driveway felt fine. Felt better than fine: it felt awesome. Other than a little tightness across my abdominal incision, it felt like old times. It’s true that you never forget how to ride a bike, and my muscles remembered how to fire their pistons to propel me forward. I wanted to get down on my knees right there in the driveway to thank the great gods of healing for bestowing their kindness upon my beleagured and battered body. But that would have caused Macy to roll her eyes at me and say that I’m embarrassing her, again, so I refrained.
Instead, we made a 2-mile circle around our neighborhood, dodging pedestrians, watching for bumps in the road, and intentionally riding through sprinklers. We enjoyed the drier-than-normal Houston air and rejoiced in the birdsong. We admired the neighbors’ yard work and noticed how lush and green everything is in our part of the world.
It was a very good ride.
Ok, this is the part that my handlers should skip over. Y’all don’t want to read this; I worry about your blood pressure.
As I reflected this morning on yesterday’s ride and conducted my mental inventory of how much my various hotspots hurt, I realized that they didn’t really hurt. Not any more than usual. Maybe I really am healing after all. Finally!
Satisfied, I ran through my workout options for today: I could ride my bike again, I could take Harry for a long walk, I could go to the gym for cardio or for strength training. Then I realized that it’s Tuesday. It’s tennis drill day. I haven’t drilled with my team in 5 weeks. I could go to drill! Yes, I could go to drill. I may have to dust off my racquet, but I could go to drill.
Ok, handlers, you can start reading again.
Then I realized that I’d better settle down. I’d better take it easy. I’d better ease into it and not go head-long, full-speed into resuming my normal life.
Maybe next Tuesday.
After reading Cutting For Stone, I was hungry for more from author Abraham Verghese. Wow, was this a great book. Like some of my other all-time favorite reads, it took me a while to get into this one, but once I did, I was so well rewarded. I felt a little bereft when it ended, another sign of a great book. The characters were so richly drawn, they truly seemed like real people, and I was sad to think I wouldn’t know what happened to them for the rest of their “lives.”
I’m not crazy; this happens with good books, and I’ve heard other people say the same thing so I know I’m not crazy. At least not in this case.
I searched in vain for more books by Abraham Verghese and although he’s written prolifically for such esteemed magazines as The New Yorker and The Atlantic Monthly, he doesn’t have dozens of novels at the ready for voracious readers. He has written a book called The Tennis Partner, however, which I quickly scooped up on amazon.com.
Verghese is an infectious disease doctor and has been a professor of medicine at Harvard and Stanford, in addition to being a bestselling author. The Tennis Partner tells the story of Verghese’s friendship in El Paso, TX, with David, a medical student who is a recovering drug addict. Their friendship grows amid a shared love for tennis, and they both find the game to be “an island of order in the midst of personal chaos;” in Verghese’s case, his crumbling marriage, and in David’s case, his drug addiction.
One of the things I love so much about Verghese’s writing is his innate ability to describe a scene in such a way that makes it familiar and easy to visualize. For instance, when writing about moving to El Paso, Verghese says “This is the great promise of moving: that if you fold your life into a U-Haul truck and put it on the road, you will be given a clean plate with which to approach the buffet.”
Beautiful prose. Simple and clean, yet so on-the-money descriptive.
It’s a great story, not just because of the tennis. Both men were struggling with different things in their lives, yet tennis became the equalizer. Verghese says, “In the way we controlled the movement of a yellow ball in space, we were imposing order on a world that was fickle and capricious. Each ball that we put into play, for as long as it went back and forth between us, felt like a charm to be added to a necklace full of spells, talismans, and fetishes, which one day add up to an Aaron’s rod, an Aladdin’s lamp, a magic carpet. Each time we played, this feeling of restoring order, of mastery, was awakened.”
I get that. Wow, do I get that. One of the reasons I wanted to get back to playing tennis as soon as I could post-mastectomy was to impose order on a disorderly life. And guess what? 9 days post-reconstruction, I already can’t wait to get out on the court and put this mess in order.
One line in the book has really stuck with me, and I carry it with me in my game. David and Abraham are battling it out on the court, David being the more experienced and younger (read: more spry, less creaky, and speedier) player. He always manages to best Abraham, and after yet another victory explained his winning strategy. It’s very simple. “Remember, the one with the fewest errors wins.”
True, so true, and not just in tennis.
I love tennis, and I’m fascinated by how the human body works. I’ve written about this before, and now that my latest surgery is in the rear-view window, I’m again impressed with and amazed by how our bodies react and heal.
I’m also fascinated by doctors. Surgeons, especially. Not in the “reverence for the white coat” aspect of previous generations, nor because of the fact that they perform a very difficult job. There are lots of hard jobs out there, and I’m sure there are plenty of things other professions require that docs wouldn’t handle well.
It’s more a fascination with what makes them tick and how their minds work. I always want to ask my specialists, why did you choose oncology? why did you choose plastic surgery? I’m overly curious (some would say nosey) about the minutia of their jobs: how many patients call them after-hours? how long does it take to repay med school loans? what do you do to unwind and feel like a regular person? I mean, after say, a 7-hour surgery in which they restore order to a hellacious mess of a chest wall, do they wash up, drive home in traffic, pop a beer and veg out? Or do they refrain from drinking, even after a long day, because they can be called into surgery at any moment?
Verghese writes quite eloquently about the physician as a regular person and of medical humanism. He’s an old-fashioned doctor in a modern world, and he teaches new-fangled doctors his ritualistic bedside observations. He believes medicine is a passionate and romantic pursuit, not just a science.
Kinda reminds me of my own infectious disease doc telling me that in my case, because of the post-surgery infection, he was practicing the art more than the science of medicine. A lovely thought after months of exams, tests, and hospitalizations that had left me feeling like a piece of meat. Not Grade A meat, either.
As I prepared for my most recent surgery, I remembered a lengthy but compelling passage from The Tennis Partner. Even though my pre-surgery to-do list was a mile long, I found myself flipping through the book to find this passage. I wanted to re-read it, as if absorbing these words into my brain would somehow transfer into the surgeons’ hands as they cut me open and tried to repair the damage that had been done. It took a few minutes, but I found it.
Verghese was treating a young woman in El Paso with mysterious symptoms and no clear diagnosis. He writes about how as he entered her hospital room, he was looking for more than just physical manifestations of an illness:
“I was attentive to the aura of the room, vigilant for her icons — a doll, rabbit-ear slippers, a prayer card, her own nightgown. I inhaled discreetly so that her scents, all the eructations and effluvia that were hers, the redolence that night spell the name of the disease lurking below, could land on the free nerve endings of my olfactory nerve. Smells registered in a primitive part of the brain, the ancient limbic system. I liked to think that from there they echoed and led me to think “typhoid” or “rheumatic fever” without ever being able to explain why. If the diagnosis eluded us in the first few days, her chart would thicken as pages of computer printouts bearing witness to the blood urea, the serum creatinine, the liver enzymes, and other soundings accumulated. But no computer could make the mind-pictures I could form if given the right clues: a liver hobnailed by cirrhosis; a spleen swollen like a giant and angry thumb from mononucleosis; a smooth-walled cavity in the lung apex within which a fungus ball clatters like a bead in a baby’s rattle.”
I love the “eructations and effluvia” especially. That’s some good alliteration.
I also really identify with the patient, and know that I too have a chart that has thickened with computer print-outs and such. Not that it’s a contest, but I bet my chart is thicker than hers.