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.