Summertime, and the living is easy. Sam Cooke said it, well, sang it actually, a long time ago. The fish were jumpin’ and the cotton was high. The girl he was singing to had a daddy who was rich and a mama who was good-looking. All was right in Sam’s world.
Well, the living is easy all right. No alarms waking me up before I’m ready, no lunches to pack. Payton’s lunch is easy: sandwich, bag of baked chips, string cheese, Rice Krispie treat, and a drink. No lunch box, no ice pack — he’s too cool for that. Macy, on the other hand, is quite particular about her lunch, requiring 5 different things, some of which must be washed & chopped and placed into small tupperware. She does at least take the same thing every single day, much like her mama did as a schoolgirl. I had a homemade egg salad sandwich on wheat bread every day of my schoolgirl life, and didn’t care one lick that the other kids thought the egg salad looked gross and the brown bread looked weird. They could have their stick-to-the-roof-of-your-mouth Wonder bread PB&J any day. I was perfectly happy with my gross-looking egg salad on weird-looking bread.
So no lunches to pack, yea. No mountain of school paperwork to wade through, only to find that other than glancing at the grades at the top of the completed work, there’s not a single thing in that mountain that really matters. No racing the clock to get out of bed, gobble down breakfast, get dressed, and get out the door. No meanie mom enforcing a highly unpopular bedtime so the little darlings don’t act like feral hogs in the a.m. Last but not least, no school projects. Oh, how I despise the projects. After 18 years of living with the original slacker student, who did minimal work and gasp! even skipped school projects altogether yet made good grades and somehow managed to become a contributing & successful member of society, my opinion on school projects has definitely changed. Changed to hatred, that is. They’re messy, time-consuming, inane, and require ME to go to Hobby Lobby AND help with said project when I could be playing tennis.
Ok, rant is over.
I certainly hope I didn’t offend any teachers out there. If I did, please direct your hate mail to my husband, the original slacker student. It may take him a few days to reply, because he’s busy running a software company. I’m not sure he could have risen to such heights and attained 2 graduate degrees without that pivotal diorama he made in 3rd grade at Jenks Elementary.
Ok, now my rant is over.
So we are blessedly free of the strict schedule imposed by the Fort Bend Independent School District, and most thankfully free of the blasted school projects. We can go where we want to go when we want to go there, stay up late, and eat lunch when we please. All that sounds great, right?
Except for one tiny detail: I don’t do well with unstructured time. Remember me, the busy-body? I don’t blossom with a lot of downtime. It’s day 3 of summer, and I’m already feeling a little itchy, a little twitchy. As much as I dislike the hustle & bustle of the imposed school schedule, it does keep us on track. And I like that. I need that. I would have been great in the army.
Lots of people enjoy their downtime and get into being lazy. For me, laziness makes me feel icky. I really like having a to-do list every day and relish the feeling of being productive. Some people were laughing at me that on the first day of summer, I cleaned out the garage, did 4 loads of laundry, vacuumed the entire downstairs, and bagged up discarded clothes for donation. Before lunchtime.
Now that my kids are a little older and a bit more independent, summer isn’t as stressful because I can still get my stuff done without having to watch them every second. The ever-present possibility of a toddler finger in a light switch cramps my style and interferes with me crossing things off my to-do list. With the luxury of semi-independent children, I’m trying to relax more this summer. That, and the burning desire to suck every drop of summer this year, since last summer was such a bust.
Last summer, I was not only recovering from a bilateral mastectomy but also playing hostess with the mostess to a nasty, long-staying bacteria that exploded into a messy, hard-t0-diagnose-and-even-harder-to-eradicate infection. I spent some extra time in the hospital, multiple times and multiple hospitals, and had a few extra surgeries. I weathered the ups & downs of being an impatient patient, and learned the hard, hard lesson that no matter how nicely I treat my body, it can and will betray me. As my sweet mama would have said, “That is rude, crude, and socially unacceptable.”
Last summer I missed out on a lot, thanks to Mr. Mycobacterium. This summer is going to be different. I’m going to spend some idle time, and hopefully learn to like it. I’m going to float in the pool with my kids and my crazy dog, and not worry about the laundry piling up or the dishwasher needing to be emptied. I’m going to teach my kids to cook, and not stress over the messy kitchen. I’m going to drag them away from the TV and computer games and into the museum district, and not get discouraged when they complain about how boring it is.
However unstructured this summer is, it’s gonna be great. Summertime and the living is easy.
Y’all know I’m a milestone-observing kind of girl. I’ve written about my cancer-versary, about a revelation, about week-old recollections after The Big Dig, aka my reconstruction, and returning to the tennis court after a long absence full of longing.
I’ve written about the anniversary of my sweet mama leaving this earth. That was early on in my blogging, and I hadn’t mastered the art of inserting photos. The photos of her are woefully displayed, and in my free time (!) I need to go back and fix them. She deserves better.
I’ve also observed the end of the worst year of my life. “Don’t let the door hit ya” was my message to 2010 as it went out like a lion. A mean, underfed, on-the-hunt-for-victims lion. Almost halfway through 2011 and I’m happy to say it’s turning out to be a much better year. Course, we didn’t have far to go to make it better than its predecessor.
Back to the current milestone. One year ago today, I said bye-bye to my breasts and was the lucky recipient of a flat–but cancer-free–chest. This was me, this time last year. On this very day (although it wasn’t a Friday, it was May 13th. Having a bilateral mastectomy on Friday the 13th would be cruel).
Trevor snapped this photo of me waiting for my surgery, in the holding pen before moving to a pre-op room. My brain was swirling with lots of thoughts, too many thoughts, and I was likely firing off a quick email to our BFF Ed with some last-minute kid-wrangling instructions. Notice the pink notebook in my bag: my cancer book, full of pathology reports, doctors’ notes, research, and bills. Bills, bills, and more bills. I think the current estimate of the cost of my last year medically is in the range of $260,000. And we’re not done spending yet.
One year ago today, I wish we’d thought to take a close-up shot of my chest instead of the deep wrinkle snaking across my forehead. My chest would never be the same, and would become a major battleground–and that was after the mastectomy. If I’d seen that pic before going under, I would have asked Dr Dempsey, breast surgeon extraordinnaire, to give me some Botox while she was in there. Yikes.
I didn’t know what to expect from the surgery, other than the basics. With subsequent surgeries, I’ve learned that actual procedures are available for viewing on youtube and I’ve watched a few. Gross. But amazing.
All I knew, really, was that I had breast cancer and I wanted it gone. I could have had a lumpectomy, but chose the slash-and-burn option instead. I’m not a half-measure kind of girl, and the idea of just taking a part of the infected breast instead of the whole thing wasn’t anything I ever seriously entertained. Slash-and-burn meant taking both breasts, even though the cancer was only detected in the right one. Only. Ha! Good thing I lost the pair, because the post-mastectomy pathology showed the left one had some problems, too. If you can call an area 5 cm in diameter full of cancerous junk a problem. I can, and I did. Little did I know then, one year ago today, that pretty much anything that could go wrong with my post-surgery self would go wrong. As my nurse practitioner friend Laura says, “Your case certainly has not been textbook.” Truer words were never spoken, but we didn’t know that one year ago today.
Because there were only 3 weeks between my diagnosis and the mastectomy, and because most of that time was consumed with tests, tests, and more tests, there wasn’t a lot of time for freaking out or being scared or crying about my fate. Not that I would have done any of those things anyway. There was a problem, and we were going to fix it. ‘Nuff said. I had a great team–breast surgeon, plastic surgeon, and oncologist– and was in a nationally ranked and highly acclaimed hospital. Course, I’d end up adding a kick-ass infectious disease team, home-health care nurse, a beloved lymphedema specialist, and wound specialists to my team before it was all said & done.
and Macy & I pampered ourselves with a Chinese foot massage.
I squeezed in as much time as I could with my girls
Going into surgery one year ago today, I had no idea that I’d end up spending nearly a month more in the hospital and undergo 3 more surgeries; minor surgeries compared with the mastectomy, and of course reconstruction was way off in the distance, with even more days in the hospital. I had no idea how much I’d miss my kids while hospitalized
I had no idea how much infinite kindness my friends would bestow upon me. We were on the receiving end of many, many meals delivered to our house, a kindness for which I’m so grateful. The rides to & from my kids’ activities helped more than I could ever guess. The sleepovers and outings that my mommy friends provided kept my kids’ life normal when everything else around them was off-the-charts abnormal.
Keith’s crab towers were chock-full of healing properties.
Yes, lots of champagne eased the way from being an average, suburban at-home mom to becoming a statistic. From regular woman to cancer vixen. From got-it-together overachiever to at the beast’s mercy. And my bubbly companion continues to ease the way, from cancer victim to cancer survivor. Cheers to that.
although Pedey enjoyed every lazy minute of my recouperating.
I’m not sure I ever got that pair back from her.
I certainly have learned a lot over the last year. Things I never knew I would have to learn, like the difference between invasive ductal carcinoma and in situ carcinomas. Like how a tumor is graded to determine the stage of the cancer. Like cure rate statistics and recurrence stats. Like how fine a line there is between the science of medicine and the art of medicine. Like how fighting a wily infection could be even worse than fighting cancer.
The crash course in all things infection-related was a big education. A very big, most unwanted education. My biggest lesson in this arena is how many unknowns exist. I wanted to know when, where, how, and why I got this infection. No one knows for sure. I wanted to know why it took so long to diagnose it, and why so many drugs have to be involved. I learned that my oncologist could have me all my drugs delivered to my doorstep via UPS. I learned to love vanocmycin and to depend on probiotics. I learned to eat breakfast as soon as I got up, hungry or not, because I needed to time the antibiotics right so they hit an empty stomach. I learned that morning sickness-style nausea doesn’t go away as the morning changes to afternoon and then to evening. I learned that there was nothing, not one single thing, I could put in my stomach to ease that awful nausea. I learned that washing those drugs down with alcohol doesn’t make me feel worse; that in fact it made me feel a whole lot better. I learned to develop a schedule and a rhythm to taking my antibiotics every 12 hours for 267 days.
I learned that “We’re discontinuing the antibiotics” are the sweetest words I’ve heard in a long time. I’ve learned about the complete and utter relief of dumping my remaining oral abx out, because I don’t need them anymore.
That’s the tip of the iceburg, or what my friend Michele would call “a booger’s worth” of the practical things I’ve learned. The topical aspects of changing one’s status from normal person to cancer patient. Then there’s the other side of it.
There’s the stuff I’ve learned in the last year about the unquantifiable side of a serious illness. The depth of inner strength required to get through something like this. The well of emotion that accompanies the clinical stuff. The patience and fortitude I didn’t know I had (although I’m still working on the patience part). The measure of gratitude toward the people who’ve helped along the way. The unbridled joy of making new friends in the midst of a shitty situation. The passion for writing, long dormant in the day-to-day of child-rearing, and the love of blogging. The understanding that my doctors are just regular people under those scrubs & white coats, and while they’re full of knowledge, there’s a whole ‘nother side of unknown things for which they make an educated guess and hope for the best. And, I have to admit, how much fun I’ve had getting to know these people in the white coats.
While being diagnosed with breast cancer at age 40 certainly does suck, I’m lucky that I made the decision one year ago to not let that diagnosis define me or impede me living my life. There certainly were times in which I was miserable from surgery and infection, and down in the dumps about my limited capabilities during recovery. There were also times over the last year in which I thought for a second I can’t take any more–not one drop more of bad luck, rotten news, and beastly complications. But those times didn’t last long and they did not prevail. Cancer did not prevail. Not over me. No way. Nuh uh. That’s perhaps the most important thing I learned over the last year.
To say that a lot has happened in the last year is an utter waste of words. I’m not sure there are words to convey how much has happened in the last year; if there are, they are reserved for better writers than I.
Being diagnosed with cancer at age 40 is a shock. Duh. It’s scary and unexpected and unnerving. Double duh. 40 is when we hit our stride. For me, it meant my kids were old enough to not need constant supervision but to still need my guidance. I’d recently discovered tennis, the new love of my life, and had time and freedom to play often. I had a tight circle of friends who knew who they are and where they want to go. I was very comfortable with the direction of my life and the steps I was taking to make it the very best it could be.
Then came cancer.
That vicious beast had already stolen my sweet mama from me, when she was only 67. I was 36 and finding my own way as a mother, and needed her input and presence. But more importantly, I needed her friendship. She and I never had the contentious relationship that a lot of mothers & daughters have. We always liked each other. Maybe because we were a bit opposite: she was yielding and I was (am) opinionated. But maybe we just got lucky, and had that special relationship that some fates bestow upon some people but not others. The reason for our good relationship is immaterial; the fact was, we treasured each other, and losing her was the worst thing to ever happen to me.
Until April 27, 2010.
My guardian angels were asleep at the wheel.
I’d been getting baseline mammograms since my mom died, since hers was a reproductive cancer and that put me at a slightly greater risk. More so, though, was my OB-GYN’s diligence. Her husband is an oncologist at MD Anderson, so she’s super-tuned to cancer and its sneaky ways of getting its foot inside the door. She saved my life. Pure and simple. And monumental.
When the news came on this day last year, I listened to everything Dr Dempsey told me about my cancer, as Boss Lady Staci dutifully took notes in Trevor’s stead as he hustled home from a business trip. I held it together until the end, when she asked if I had any more questions and I had one: how do I tell my kids?
They’d watched their YaYa die from cancer, and while only 6 and 3 years old, those memories are powerful. They wanted a lot of assurance that my cancer was different in every way from YaYa’s and that it was not going to kill me, too.
One week after my diagnosis, Payton turned 11. I was gearing up for a double mastectomy, but wasn’t going to neglect his celebration, because if we can’t celebrate life and its happy moments, then cancer might as well come and get us all. We had the usual birthday breakfast on the personalized birthday plates, just as we had every year. As I placed his feast in front of him, I muttered my birthday wish, which was to make sure I was around to place that personalized plate in front of him on May 3rd for many years to come. My firstborn isn’t going to celebrate his birthday without his mama if I have anything to say about it.
The day before my mastectomy, Macy and I met Jeffrey, the orphaned mockingbird rescued by Amy Hoover’s family. We’d been hearing about this little guy, and my animal-loving girl needed to see him for herself. I had a million things to do to prepare for not only surgery but also weeks of dependency, but we made time to meet Jeffrey, and I’m so glad we did.
Two weeks later, I turned 41. I celebrated in typical fashion, with a girlfriends’ lunch and champagne that night. White cake and bubbly are two of my favorite things, and they just say “party” to me. I didn’t feel great, but I was determined to greet the next year in my life with a glass in my hand and a smile on my face. Being surrounded by my best girls during the day and my family in the evening reminded me that life goes on and that while my recovery was hard, it was do-able, so take that, cancer.
A few days before my birthday, I strapped on as much determination as I could muster and took Macy to see Taylor Swift at the Toyota Center with her best bud, Ella, and my partner in crime, Jill. I was so afraid of being jostled by the crowd, as I was still pretty sore and healing was far from complete. But I wanted to be there and be a part of that big event, and to prove to myself that life doesn’t stop for cancer. I’d lost my breasts but not my drive. The glowsticks burned brightly as the music thumped, and I sat next to my favorite girl and soaked it all up. Every last drop.
Good thing I did, because my healing and happiness were short-lived.
Just as I felt like I was really recovering from the mastectomy, the nosocomial infection entered my life. A curveball? And how.
Hospitalized for 9 days, pumped full of antibiotics, right tissue expander removed and left expander drained, my life took a decidedly unpleasant turn. It took 6 weeks to diagnose the mycobacterium, and nearly a month total of days spent in the hospital. That first 9-day stay was the longest of my hospitalizations, but also the scariest because the infection was hiding under the tissue expander, hard to diagnose but making me really, really sick. A month after the 9-day stay, I was back in the joint. Out for 3 days and back for 5 more days. Then, out for 2 weeks and back in for 3 days. A seemingly never-ending cycle. Each time I had to go back in, Macy would hand me Froggy, her most beloved of all her “crew” of stuffed animals. He’s been with her since she was a tiny baby and has enjoyed favored status among the masses of other stuffed animals. He’s been in her bed every night and has gone on every trip she’s taken, and she gave him to me to take on each trip to the hospital. He had a bath in hot, bleachy water with an extra rinse every time he came home to her.
She also gave me Baby Snoopy, another coveted member of the “crew,” and my heart swells at the idea of my baby girl’s thoughtfulness. Though she hated to see me go back to the hospital, she knew her “crew” would comfort me in her absence.
Gross picture, yes, but I did make it smaller so you don’t have to see it in all its glory. Apologies to Christy, who hates this kind of stuff, and Julie: you’d better start skimming because this is the icky part. The aftermath of the mycobacterium is unpleasant, for sure. And this is not the worst shot there is; this shot was taken after much healing had occurred, believe it or not. The wound left behind by the infection was 5.6 cm long, 3 cm wide and 2 cm deep. That dang bug wreaked a lot of havoc on my already-ravaged right chest wall, and it killed what little bit of healthy tissue was left after Dr Dempsey scooped most of it out to rid the cancer. It’s an insidious bug that is hard to treat. It’s not drug-resistant, like MRSA, but it is very slow-growing and so it responds slowly to antibiotics. Hence the long, long, looooooooong course of oral abx and the multiple rounds of IV antibiotics, at home and in the hospital. I still have this collection on my kitchen counter, to take twice a day, but luckily haven’t needed the IV version since the last go-round in March. No idea when I’ll get off the oral abx, but sweet Dr Grimes, my infectious disease doc, has told me that he has patients who are on abx therapy for years. Years. Plural. Egads.
Trevor and I became fluent in home health care and learned how to administer the vancomycin and cefapim all by ourselves. The learning curve wasn’t steep, and the whole process was very systematic. My home health nurse, Chona, was as kind and competent as could be, but the gravitas of my situation was clear.While I dreaded it and resented the 3 hours it took twice a day to infuse, I counted my blessings and reminded myself that it could be worse: I could be getting those drugs via IV in the hospital. Again. Which is why I smiled for the camera, tethered yet again but happy to be at home, with Snoopy to keep me and my IV pole company. And yes, that is a glass of wine on the table next to me. It was a dark period in my life, people; don’t judge.
This is what Sucky’s appendage looked like strapped to my body, so it could suck out the gunk and speed the healing from this curveball. The size of the plastic sheeting and the tape required to keep the Sucky train rolling was big enough to give me the vapors, and my poor skin is shuddering at the memories right now. And isn’t everyone thankful that I didn’t have a better camera than the one on my iPhone? Imagine how gruesome the photos would be! Oh, the horror.
The amount of supplies needed to deal with that wound was staggering. The home health stuff was delivered in big boxes, which cluttered up my office and dining room for a day or two before I said enough! and organized everything to minimize its presence. Out of sight, out of mind (sort of). I pared it down as much as I could.
I became proficient at prettying up the ugly truth of cancer treatment, and its equally- ugly friend,infection aftermath, fared the same. I may not have had control over the mutating cells in my body or the nasty bug that invited itself in post-mastectomy, but I sure could dictate how my surroundings would look during the after-party.
The amount of supplies needed for this fragile existence was great, and so was my need for comfort. That I found comfort in bubbly and coconut cream pie should come as no surprise to anyone who knows me. I may have been down and out, with cancer and infection taking their pounds of flesh (literally), but I was powered by Piper and pie.
The summer wore on and I barely saw the sun. And only then, through the window; I didn’t get out much. Between the hospital stays, feeling puny, IV drugs, and being on guard against germs, I missed out on a lot.
I did make it to Macy’s 2nd grade last-day-of-school festivities. She had something funny to say when it was her turn to take the podium, and although I don’t recall what it was, I’m glad I was able to be there to see her in action. I also dragged my sorry carcass to Payton’s 5th grade farewell. My friends in high places in the school volunteering world pulled some strings and had a reserved seat for me, along with a parking cone to save a parking place for Mary, who carted me there and back. My baby was moving on to middle school, and I was moving slowly–very slowly–toward recovery, from cancer and infection.
Right before school ended, Payton was honored with a spot on the All Star team. This boy lives & breathes baseball, and has from his earliest days, so this is a big deal.
The team went from District to Sectionals to State (or maybe Sectionals to District to State), and I made it to 1 game. Being in the hospital while my favorite player did that thing he does best was hard on this mama. His team had a lot of heart, in addition to some mad skills, and they were kind enough to play in my honor for the duration of their run toward State champs. I’ve never been more honored and humbled as when he came home from practice the night before the first tournament (District? Sectionals?) with a pair of pink sweatbands on his wrist. Learning that the entire team was wearing the pink, for me, moved me, and like the Grinch, my heart swelled to maybe a normal size.
I’ll be forever indebted to all the other All Star moms who cheered for my boy and provided yard signs, pool parties, custom shirts, and child-wrangling assistance in my absence, at our home field and on the road. Missing the games was hard, but knowing that my circle of baseball moms had my back made it bearable. And having my signed photo of the boys in red (with a dash of pink) brightened my hospital room and my spirits. That frame now sits on my dresser, and every day when I see it I remember not only the special summer of baseball success but also the pure hearts of the families on that team who helped my own family in our time of need.
Good things can come from a bad situation. There is hope inside a diagnosis. You get a measure of the depth of people’s kindness, which comes out in lots of ways. Like custom cupcakes. I liked that one a lot, and so did my kids.
Like a card signed by the staff at PF Chang’s during a celebratory lunch. Our waiter knew we were celebrating some good news in the cancer battle and took it upon himself to have his co-workers celebrate along with us. I said it then, and I’ll say it again: Eat at Chang’s!
My friend Paula from Duke ran in the Salt Lake City Race for the Cure in my honor and sent me her bib from the race. At that point, I was a long way from even considering doing a 5K, so it did my heart good to know she was out there, pounding the pavement among an army of pink and thinking of me.
One weekend in between hospital stays, Macy and I snuck away to Galveston with Christy and her daughter Alexis, for a much-needed break from illness, wound care, and calamities. Macy caught a huge fish off the dock, and seeing her proud smile made the trip even better. There’s something magical about the sunset off the water, and I savored the splendor.
Once word got out that the puppy-sitting business was up & running, we got to keep Pepper for several days. My kids loved having her to snuggle with on the couch, and I relished the idea that the hard times were morphing into better times.
School started, much to my children’s chagrin, and Payton went off to middle school while Macy began 3rd grade. A few days after school started, I was fresh out of the hospital, she and I rocked out at the Jack Johnson concert in the Woodlands. Because I had been hospitalized, again, so recently, my attending the show wasn’t a sure thing. I still had the dressing on my port-a-cath and wasn’t feeling great. What is a sure thing, however, is that I’m as stubborn as cancer is shitty, so I made it to the show.
August and September were spent recuperating, and at the end of September I hobbled myself on down to Tootsies, a chichi clothing store in the high-rent district that was outfitting survivor models for the Couture for the Cause fashion show. I’d only been out of the hospital for a month, but I had committed to doing the show and I made good on my word. Scared breathless and unsure of myself are not states in which I commonly find myself, but the fashion show landed me smack dab in the middle of “What in the world am I doing?” territory. I wasn’t wild about the dresses I wore, but my shoes were a-maz-ing and the experience is one I truly will never forget. Oh, and we raised almost $100K for the cause.
October signaled the return of some normalcy. I was able to put together something I’d daydreamed about a lot in the hospital: the First Annual Pink Party. I wanted to gather my circle of girls who had seen me and my family through the roughest part of the “cancer journey” to show my thanks and spend some non-sick time together. With the pink theme, yummy food (if I do say so myself), and plentiful drink, it was a smash success.
We seemed to have the infection under control and the antibiotics were doing their job, and after a much longer-than-anticipated hiatus, I was back on the tennis court. My sweet tennis friends gave me a little trophy that says “Winner,” and it’s the best trophy I’ve ever won.
This little trophy soon had a friend, though, after Boss Lady and I won the Witches’ Open at the end of October. Being back on the court with my tennis friends was so great. Tennis is very good therapy.
As if that day wasn’t fun enough, that night was the Maroon 5 concert in the Woodlands. Tennis, then dinner and the show was a balm for my battered soul. We ate & drank then sang along with Adam for an unforgettable night.
Before too long, fall was upon us (or what passes for fall in Houston), and we readied ourselves for the holidays. Thanksgiving was spent with Team Cremer, with everyone contributing something to the feast. The kids worked off their meal with the traditional post-turkey swim. We had a lot for which to give thanks.
Christmas and the New Year came and went, and before I knew it was time to start making preparations for reconstruction. The Big Dig was a big step, and I had hoped it would signal the end to my “cancer journey” and allow me to put all that hardship behind me. Adding another doctor, and another Dr S, to my cast of characters could only mean one thing: I was going in for a very big surgery.
The DIEP procedure is amazing and hard, in a lot of ways: time consuming, intricate, detailed, and not infallible. Babying the newly transplanted skin, tissues, and blood vessels was hard work, and the crack team at Methodist in the med center did an outstanding job.
It was a hard 3 days, no lie, but at least I was going home. One thing I would miss from the hospital was the morphine. Oh, how I love that stuff. I guess a lot of people do, too, because they guard it closely and I got a laugh from the ping-pong-paddle-key used to replenish my supply. Kinda reminded me of a gas station restroom key.
One thing I would not miss from the hospital was this chair.
This was the chair in ICU that I had to hoist myself into, after hoisting myself and my 17-inch-long abdominal incision out of bed. Again, it’s a good thing I’m so stubborn, because it would have been easy to roll over, say this is too hard, too painful, too much. But by golly I was going to get out of that bed and into that chair no matter what, and with my morphine pump in hand, I did just that. I don’t think I cussed too much, either.
Recovery from The Big Dig is ongoing, and they say it will take a while longer. I’m not the most patient person, and I’m ready to have everything back to normal. Of course I know there’s a new normal, and it progresses at its own pace, not mine. It’s been a long, tough “journey,”and it seemed that everything that could go wrong did go wrong, for a while.
But a lot of good things have happened, too. I started blogging, for one, with Pedey at my side or in my chair, or both; who knew so many people were interested in my little “cancer journey?” It’s humbling and rewarding to see my “readership” grow, and I am immensely grateful for all the love and support that’s come my way. Someday I may have no cancer-related news to share. How weird will that be? I imagine I’ll find something to talk about in this space, nonetheless.
I will have more stories to share about my adventures with Dr S. There are a couple of revisions that he needs to make to his palette that is my newly constructed chest, and while we argue about the timeframe for that, it will likely provide blog fodder and laughs along the way.
And like the butterfly bush in my backyard that was uprooted and tossed around by high winds recently, I weathered the storm. I’m setting my roots and hoping that the winds that blow my way in future are calmer.
Yes, I know the continuation of the Napa series is overdue, and I’m going to get to it today, I promise. I used to live & breathe by deadlines, but now that I’m “retired” from the publishing business and don’t really give a hoot about anything else except what’s in the forefront of my brain at this very moment, I can casually toss aside a deadline, even a self-imposed one. I do need to work on crafting shorter sentences, though. Mercy. You’d think I was getting paid by the word for that one.
‘Tis true I needed to think about how to best convey the utter perfection of our second day in Napa, and these things cannot be rushed, not even by me; these things take time. In this case, almost a week. This time last week, we were sleeping peacefully in San Francisco, with the entire Napa weekend spread out before us like the best buffet ever. I need to do that scene justice, and doing justice takes time. Maybe you’ll get lucky and I’ll post twice today.
I had every intention of writing that update last night, but I must admit I didn’t feel all that great. Again, me & my stupid assumptions. Because it has been 6 weeks since The Big Dig, I stupidly assumed that on day 42 post-op I would magically be back to normal. Hahahahahahahahahahahahahaha. No, I’m not playing tennis, and I’ve been instructed by both doctors and my trainer to avoid any exercise that utilitzes my core for another 6 weeks. So my atrophying muscles and I will dejectedly comply (at least for now). In case you’re wondering, like I was, why the kibosh on using my core, it has to do with the risk of opening up that 17-inch-long abdominal incision (low); the skin becoming hyphertrophic (medium), and widening that 17-inch-long incision (high). I’d say that damn incision is quite big enough, and the last thing I need is to be widening it, no matter how much I hate being on the DL.
So, I’m back to reality after a most wonderful trip, I can’t exercise, I’m still struggling with post-op fatigue, and the operated-upon areas still bark at me more than I’d like. But alas, I have my doc to brighten my days and lift my spirits. I’m luckier than a dog with 2 tails because I got to see him not once but twice this week. One for an official check-up and again by chance.
My check-up was Wednesday. It’s always an adventure going to see him. He wanted to see for his own eyes that I survived the trip to Napa, and his first question was, “Did you get drunk?” Yes, all day every day. I told him that if I can’t start exercising yet, then we need to speed up the timeframe for fixing the “dog ears.”
These lovely little things are the globs of fat sitting on my hips that he said we need to “suck right out.” I agree. Dog ears are folds or the bunching-up of the tissues at the border at which the “corrected” tissue meets the “uncorrected” tissue post-surgically. So in my case, on either end of the 17-inch-long abdominal incision, or right on my hips. The main way to minimize dog ears is by making an incision longer, but in my case, my docs were dedicated to keeping the scar as small as possible, and making it longer would have entailed wrapping it around my hips onto my back, which aesthetically isn’t a good option. In a traditional tummy tuck, there’s more wiggle room for scar length, but in my case they were harvesting skin & fat from which to build my new boobs. So, I have dog ears on my hips. Not a real big deal, other than the superficial issue.
I would like to get it corrected sooner rather than later, so my doc and I are negotiating. He wants to wait 6 months from the date of reconstruction, but I think 3 months is ample time for healing. He is not swayed by my complaint that I have to go all summer long with extra fat on my hips. After some back-and-forth, we finally agreed on 5 months, but I’ll keep pushing.
The most entertaining thing about Wednesday’s visit came when I asked my doc if he knew another plastic surgeon, let’s call her Dr X. One of my friends is considering a “mommy make-over” with Dr X, and I wanted to see if me mentioning another surgeon caused him to get his hackles up. Ding! ding! ding! He wanted to know why I would possibly be asking about another doctor, as we all know he is The Best Surgeon In The World. For real. When I told him the real reason I was inquiring about Dr X, he got all googly-eyed at the idea of doing a “fun” procedure, as he described the “mommy make-over” and said that sure would be nice, and he asked me (tongue in cheek) to please try to “bring more fun” next time I come see him. After several deeps breaths to settle myself, I offered to bring a pinata to my next appointment. With a very big stick. We all got a big hee-ha out of that. I’m going to have to make a quick trip to the border, to get a real Mexican pinata, like the one we got for Macy’s 4th birthday. Look at the size of that thing! Now I just need to find a really big stick….
Before I start ranting again about how not fun all this has been F O R H I M!!, let’s move on. The other interesting thing that occurred in our tete-a-tete was him telling me about the tummy tuck he did that morning that looked fantastic. Better than mine?I asked? Oh, yes–much better, he said. No dog ears, I asked? Oh, no, he replied, certainly not. Big sigh. Well, at least he’s off to a conference in New Orleans about fat transfer, so he can have the latest & greatest technique when it comes to sucking the giant dog ears off my hips and giving me a fighting chance of fitting into my clothes again sometime in the near future. Meanwhile, I’m thinking of officially changing my ethnicity to Basset Hound.
Dr S’s sweet nurse Brenda was sick, sick, sick with a sinus infection and looked like she felt beyond miserable. I told her she needed some homemade soup, and if that didn’t cure her, forget about it. So yesterday I took her some soup. Lo and behold, there’s Dr S. I told him I thought he was going out of town. He told me he is indeed but he has to see patients first, he has to work, he can’t just fly off to Napa like me, and oh how he wished he had my life. Hahahahahahahahahahaha. So funny. He looked quite stylish in his jeans and lime green shirt under his white coat, tanned and ready to take on the world, one fat glob at a time.
I mentioned that I happened to exchange some emails with Jenn, Dr Spiegel’s PA, and she happened to mention that they typically do revision surgeries 4 months after reconstruction. Just coincidence, that conversation, seriously. Yeah.
He told me no, absolutely not, he was putting his foot down in the sand. I asked if he was also drawing a line in the sand, and he said if I want my revision in 4 months, I can go to Dr Spiegel.
We also re-hashed a couple of long-dead conversations about subjects on which he was right and I was wrong, and we were done with the latest round of verbal sparring. He was going to check on a patient in the hospital adjacent to his office, and I was going to visit with Brenda and Marcie a bit. Next thing I know, he’s telling me to come on, and he’s waiting by the elevator for me. Now that’s some good service. Him waiting for me to finish my chat with his ladies, so that we could ride down in the elevator together–nice. And, as I recall, last time he asked me to pull down my pants so he could take a gander at my dog ears, he did say please. Quietly and under his breath, but still. We’re making progress. What a great day.
In the elevator, I took the opportunity to tell him ever so sweetly that I think it’s not so nice for him to tell me about surgeries performed on other patients who end up with a better result than me. I can’t remember if he laughed at me or promised to do better in the future, but I’m think it was the latter.
Oh, I love that man. He gives me blog fodder for days.
Some days I want to open up my skull, scoop out my brain, cradle it lovingly & pat it reassuringly and tell it there, there, one day this bad stuff will be behind us and everything will get back to normal. Those who’ve walked this “cancer journey” before tell me that this will happen. Other days, I want to open up my skull, scoop out my brain, and kick it across the room, saying, is this the best you can do? Can you at least try and keep up here?
Today is a kick-it-across-the-room kind of day, and it’s early. It’s still dark outside, for cryin’ out loud. My brain should still be sleeping and recharging so it’s ready to face the day. Instead, it woke up–and woke me up, too–several times last night, disrupting my Ambien-induced slumber. Stupid brain. Doesn’t it know that sleep is the one guaranteed relief from the cancer-laden thoughts that course through my head? Unless I’m dreaming about cancer-related stuff, that is, and that too I blame on my idiot brain. How come those dreams are never good? Where are the unicorns and fields of four-leaf clovers? Where are the feel-good scenes that bathe my brain in serotonin, ensuring that when we wake up, we do so with a big smile and feel like we’ve had a nice hug. Where’s Charles Schultz when I need him?
Now I can’t remember what this post was about. Stupid brain.
Today will be a long day. In addition to the choppy slumber and frustrating half-thoughts, I have 3, count ’em, 3 doctor’s appointments today. That’s about 3 too many for me.
First up is Dr Grimes, infectious disease guru, to hopefully shed some light on the MRSA part of the infection puzzle. I’m expecting to get culture results from my visit to him last week, and he will order blood work as well today, to seek more answers to the great infection questions that seem unending.
Then it’s off to Dr Spiegel to get down on my knees and beg her to please please please pull these damn drains. Today is 4 weeks, people. Four long weeks of being tethered. She’s not easily swayed, so my visit to her may end in tears. Or shouting. Or both.
But, wait — I have my appointment with Dr S to round out the day! That ought to be good. He always has something interesting to say about my pitiful situation. Half the time I don’t have the foggiest idea what he’s talking about, but it’s always interesting.
I was out cold in the OR, having unspeakably nasty things done to my body to restore the damage wreaked by the post-mastectomy infection. Whew!
The first couple of days of week 1 are pretty hazy, thanks to my BFF morphine. Love that stuff. But my BFF knows its proper place, and we have short but infrequent get-togethers. This time around, my BFF gave me a terrible headache, which was quite rude, so I bid adieu to the pain pump as fast as I could.
Let’s start from the beginning. Or as much of it as I can remember. Readers, feel free to chime in when you notice I’ve left something out. We got to the Medical Center on time (6 a.m.) and I got right into my pre-surgery room. My beautiful gown and compression stockings were waiting for me, but I waited until the very last minute to don them. After some precursory steps, like accessing my port for the administration of the really gooood drugs, a gaggle of white coats entered the room.
Dr Spiegel led the way, with her PA Jenn next, followed by their resident, Dr McNight, then my favorite plastic surgeon. He was the only guy in the room. Yahoo, girl power! He had a cool wooden box in his hand and when I asked if it was a present for me he gave me one of his looks. Someday he’ll appreciate my humor. Inside the box was not a present, but his loupes, which sadly he didn’t offer to model. I’d love to see him in a pair of goofy glasses.
Dr Spiegel and Jenn started marking my belly and I’m so mad I didn’t think to take a photo because it was cool. They used a blue sharpie for arteries, a red sharpie for blood vessels, and a black sharpie for incision lines. Lots of arrows and lines later, there was a roadmap of sorts. Very cool. At one point, Dr Spiegel wasn’t happy with an incision mark so she had Dr McNight scrub it off my belly with alcohol and re-do it with the black marker.
After that it was time to head to the OR, and they must have given me a cocktail in the pre-surgery room, because I don’t recall anything after the sharpie party. When I woke up, some 8 hours later, I felt pretty good…but it was because I was wrapped in the loving embrace of some big-time anesthesia. Dr Ashmore, my hand-picked anesthesiologist, did a fantastic job of putting me to sleep, and more importantly, waking me back up. It was good and restful.
I’m not too sure about whether I was in a recovery room or went straight to the ICU, but once I got to ICU I recall that it was HOT. And I’m a Texas girl, so I know about some heat. The docs had warned me that the room would be warm, to help my newly transplanted blood vessels learn to regulate themselves in their new northern home. But wow, was it hot. Between the high temp, the two heaters, and the squeezing of the compression hose, I was roasting. I tried to be nice about it, and I think I only lost it once, when I begged one of the ICU nurses, probably Carol, to please please please just crack the door and let some AC in. Just for a second. She declined my request.
I spent the night in ICU, but thankfully the flaps, aka former belly skin & fat that were magically transformed into breasts, behaved and there was no drama (other than me begging Carol to crack the door, turn down one heater, turn up the thermostat or bring me a gallon-sized frozen margarita). The flaps had to be checked every hour, yes every hour, with a hand-held doppler. There were (until yesterday) some wires stitched on top of my chest that somehow transmitted audible sound of the blood rushing through my newly transplanted blood vessels through the doppler. It sounded a lot like a fetal heart monitor. And we heard it a lot. My flaps were cooperative, and the nurses were able to hear the blood rushing almost instantly after putting the doppler onto my chest. One nurse told me that sometimes it took 20 minutes to find the sound. I started to panic after a few seconds of not hearing it, so can’t imagine the size margarita I would need if it took 20 minutes to register.
The ICU room had a wall of windows with mini blinds, and the nurse was right outside the door at a desk looking into my room if not attending to her one other patient. Some people might think that would make you feel very safe and catered to, but it made it hard to sneak anything by her because she was always watching. If she wasn’t watching, somebody else was walking by. It was a constant parade of doctors, residents, nurses, PCAs and other people peeping into my room.
I got released from ICU after some really delicious jello and a contraband peanut butter & jelly sandwich (liquid diet…pffft) into a regular room on the 8th floor of Dunn Tower. Lovely view out the window of the heart of the Texas Medical Center, and more importantly, no heaters. It wasn’t exactly chilly in the new room, but so much better than the ICU room. Nevertheless, I did beg to have the tight, scratchy, hot compression stockings removed. Those nurses were not swayed by my shameless begging.
Apparently the docs were pretty pleased with their handiwork, and if you missed Trevor’s and Amy’s guest blogs while I was too loopy to post, go back and take a peek. Long story short, the flaps were cooperating, the morphine headache abated, some regular food arrived, and life rolled on. At some point they moved the flap checks to every two hours instead of hourly, which was mighty nice. It’s amazing how your perspective changes in a situation like that. After umpteen hours with no food, a simple PB&J was a delicacy. After being awake most of the night, a short cat-nap seemed a decadent luxury.
I’m sure I said some goofy stuff and probably offended someone at some point with my off-color humor. Apparently I channeled my mom, too, telling my friend Laura who works at Methodist and who visited me several times a day, “Thanks for dropping by.” Every time she came by. I was just being mannerly and didn’t realize I’d seen her a few hours previous.
There are conflicting reports on how the turf war between the Drs S played out. All parties are being quite cagey on the details of who did what part of the surgery, and like a good murder mystery, we may never know who real killer was. I have my suspicion, but even asking point-blank hasn’t garnered an answer, so we may have to label that information “permanently classified.”
I did get to skate out of the hospital a few days ahead of schedule, and even though I received impeccable care, I couldn’t wait to get out of there. Coming home is always sweet, but never as sweet as when I’m leaving a hospital room.
I have more mobility than I did after the mastectomy, but not as much as I’d like. The first few times I had to get up without using my arms but relying on my legs and abs, the hip-to-hip incision on my tummy protested mightily. But it got better every time, and now I do it almost without thinking about it. Almost. I still can’t walk completely upright because the incision is still very tight, but I’m not quite the Quasimodo I was in the hospital. I get a bit straighter every day.
I came home with 6 JP drains this time, and had to upgrade my VB sling bag to a bigger VB bag that could accommodate the drain party. I knew from last time around that 4 drains fit nicely, with a little extra room for my Blistex, some folding money, and a teeny ziplock bag of pills, should they be necessary. Six drains would have burst my handy little bag right open. Wonder how many drains this lady is toting in her VB bags?
I had my first real shower today, not counting the seated variety the hospital offers. Again, it’s the little things we take for granted. I’m down to just 2 drains and back to my sling bag, thanks to Jenn removing the 4 drains up top yesterday. She gave me a good report; everything looks good and is healing nicely.
While I feel a whole lot better and am ready to get back to normal, my handlers think one week post-op is a bit premature to jump right back into the day-in, day-out routine. I am trying to take it easy. I’m resigned to the fact that I’m back to one outing a day for a while, and sadly, a doctor’s appointment counts as an outing. Yesterday I had a small entourage escort me to see Jenn, and we had a bite of lunch (sans margaritas) beforehand. The handlers insisted on snapping a photo of this maiden voyage, and there was some talk of me earning a margarita for every device I had removed at the subsequent appointment. Between the two doppler wires and the 4 JP drains, somebody owes me 6 margaritas. No salt.
Although I complain about going to the med center, there’s always something interesting to see along the way. Getting out of the suburbs is a good thing, and there’s a whole ‘nother way of life in this big city of ours. Last time I was at the med center for some testing, I saw this car and had to take a picture, to show Macy. I knew this car would appeal to her:
and had to snap a picture. Yes, it is a zebra car, complete with a long tail. Gotta love the big city.