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.
The viewer mail is pouring in about this post and this one, in which I inadvertently gave y’all some reason to think you might be suffering a small heart attack. Many apologies. I didn’t mean to scare anyone or cause anyone to stroke out. I promise to be much more boring and much less dramatic in future.
I will get to coverage of Day 2 in Napa, really I will. It’s in the works. The trip was so fantastic, I want to do it justice, and sometimes that means ruminating, and you know I have very little patience.
As Winnie the Pooh referred to himself as “a bear of very little brain,” I am the blogger of very little patience. Working on it, people, working on it.
Thinking about Winnie the Pooh reminded me of how much I loved that bear as a little girl, and I’m sure somewhere in the deep recesses of my parents’ attic, there are photos of me surrounded by Winnie; my sweet mama never threw anything away. I had the Pooh treehouse with all the little figures: Pooh, Piglet, Rabbit, Christopher Robin, Kanga, and Roo. Oh, and Tigger. Don’t forget him. He’s c-razy! I had some Pooh pajamas that I wore nonstop, although not out in public like my little girl does in her jammies. I had a stuffed pooh, the original AA Milne version before Disney got its hands on him, and that bear went everywhere with me. I loved him so much I even gave him open heart surgery with my mom’s seam ripper from her sewing kit. I must have left the closing to my surgical assistant, because Pooh had a hole in his chest for the rest of time.
Now that I’m all grown up, I appreciate Winnie the Pooh on a whole ‘nother level, and find the depth and meaning contained in his quotes so moving.
We’ve all seen this one, on a greeting card perhaps or a t-shirt: ““If you live to be 100, I hope I live to be 100 minus 1 day, so I never have to live without you.” So endearing when said by a cartoon bear, but if a human said that I’d want to barf. Those of you who know what a non-romantic I am will be shaking your heads right now. Go ahead, it’s all right.
This quote from Pooh’s endless wisdom does not make me want to barf, however:
This one is all right with me. Don’t know why, but I suspect it’s because it reminds me of my sweet mama, and how very much I miss her. It also reminds me of my favorite ee cummings poem “i carry your heart with me,” which I had planned to read at my mom’s funeral but I just couldn’t get the words out. The words are always in my head, though, and I especially like this part:
“i carry your heart with me (i carry it in my heart) i am never without it… you are whatever a moon has always meant and whatever a sun will always sing is you here is the deepest secret nobody knows (here is the root of the root and the bud of the bud and the sky of the sky of a tree called life; which grows higher than soul can hope or mind can hide)and this is the wonder that’s keeping the stars apart i carry your heart (i carry it in my heart)”
Having cancer sucks, but having cancer while you still have young kids at home really sucks. There’s the day-to-day junk that still needs to be dealt with, despite the gravity of disease, treatment, hospital stays, and ongoing drug therapy. I guess it’s not surprising that I find myself not really caring about whether I sign Macy’s daily folder, or wanting to punch the teachers who think another parent-driven school project is in order. Simmer down, teachers; I won’t really punch you but when you assign projects that my child cannot reasonably complete on her own, I do think about it, briefly, because it’s hard to muster the emotional energy needed to guide my child in her education, and I sure don’t want to have to make a trip to Hobby Lobby for supplies.
There’s a never-ending juggling act that comes with the cancer territory when young kids are involved. Like the fact that most of my doctor’s appointments are with surgeons, who tend to do surgery in the mornings and see patients in the afternoon. Sometimes that means I’m cutting it close when seeing the doctor and taking care of business while still making it in time to pick up the kids from school.
Like the fact that I never know when this beast will rear its ugly head again and interfere with our daily life, plans, and schedules. Payton’s Little League season is halfway over, maybe more, and I’ve yet to make it to a single game. For the first time in his Little League “career,” he’s played games for which neither of his parents was in the stands. Not the end of the world, by any stretch, and he’s a pretty resilient kid, but it still bugs me.
Like the fact that sometimes when my kids are venting to me about whatever problem is foremost in their minds, and all I can think is, “It’s not so bad…at least you aren’t dealing with the aftermath of cancer.”
But then I smarten up and realize that yes, they are dealing with the aftermath of cancer. It’s there for them, too, even though they don’t talk about it much or worry about it like I do. It comes out sideways, sometimes, like in Macy’s “getting to know you” questionnaire from the first day of school this year, and her answer to the question “What scares you the most?” Her answer: That my mom will get another infection. Geez, what happened to monsters under the bed? We’ve eclipsed that childhood fear and have sped headlong into unchartered territory here. Like Payton asking us about the annual summer trip to Boston and Salisbury Beach, and wondering if all of us will be going this year. Since I missed it last year, I want to be there even more this year, but part of me hesitates in promising him that, because with this damn disease and this damn infection, I just don’t know. I’m operating under the assumption that the answer is yes, we’re all going this year. But I shy away from promising it.
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 saw this t-shirt and wondered why in the world I don’t own it. This may well be the single best piece of advice. Ever. “Don’t Annoy the Crazy Person.” Brilliant. Talk about a public service ad. This is a message to humanity. Wonder if I can get community service hours for providing this message.
I should have purchased this shirt a long time ago, but now that cancer has came to town and invited along not one but two unseemly infections, I could really use it. I might just wear it every day.
I certainly would wear it any time I ventured out in public, to deal with the hoi polloi. Seems you can’t swing a cat without bumping into someone who’s going to do or say something annoying. (No, I’m not really going around swinging cats, so settle down already.)
The latest annoyance is this: drugs that come individually wrapped in impossible to open blister packs. Yes, I’m well aware that overdosing on iron supplements can be fatal, but my kids are long past the stage of putting any- and everything in their mouths, and frankly, the sheer volume of prescription drugs perching on the countertops in my kitchen and bathroom render such toddler temptations trite, banal and just part of the landscape on which my kiddies exist. I have zero fear of them getting into any of my drugs. As for myself, if I were looking to overdose, it would not be on iron supplements. Just sayin’.
Notice the peeling and scraping and pressing of the layers of paper in an effort to get the pills out of the packaging?
I was doing pretty well with it for the first 3 or 4 pills. I started out by following the directions, bend at the perforation, then grasp the corner that is ever so slightly raised and pull to unpeel the first layer.
But that was taking a long time and was not nearly as satisfying as the application of brute force to pierce and punch the layers apart. I used some tools, which always feels good. Started out with a nail file but graduated to this:
I didn’t even break into the toolbox in the garage; that’s just what I had on my desk in the mug that says “I’d rather be drinking tequila,” which has been on my desk for more than a decade. When I used to work for a living in an office, I had this mug on my desk, and now it’s in my “home office” where I don’t do any real work.
And yes, I keep a small knife and hammer in my tequila mug on my desk. You never know when you may need such tools.
But I am also ready in an instant to dump the tools from the mug to fill it with tequila. I’m pretty flexible that way.
Back to the iron supplements. My oncologist prescribed them because my red blood count was low after the post-mastectomy infection and subsequent tissue excision this summer. At least, that’s the reason I think the hemoglobin is low. Mr Smarty-Pants onco thinks it’s because I don’t eat meat. He’s a big carnivore himself and doesn’t understand why someone would willingly forego the wonders of the meat world. Whatev. Point is, he says I need it so I take it. That is, when I can get it out of the *&%$ blister packs.
So I started thinking about the “Don’t Annoy the Crazy Person” t-shirt, and had a quick look-see on the web to see where to get it. This is what passes for online shopping while I’m under house arrest and have loads of time to fill. Yes, I could be checking out the hot new looks for spring at nordstrom.com or any number of websites, but instead, I’m looking for t-shirts for crazy people.
That makes perfect sense.
If you’re a crazy person.
I’m not quite sure what it is, but the cracked glass implies that something bad either happened or is about to happen. Things can unravel at a moment’s notice when dealing with the crazies.
There’s a bumper sticker, in case you need to warn people while on the road. That sounds like a good plan. I like to know which cars contain the seriously crazy people. In a town like Houston, which always ranks in the top 10 nationwide for bad traffic, it’s a really good plan. An article in the Chicago Tribune ranked Houston #5 in the worst cities for traffic, saying that 22 hours a week are spend in congestion; the average speed while congested is 13.2 mph; and the heaviest traffic is Thursdays at 5 pm. Interesting. I’m really glad I don’t have to face a rush-hour commute every day. Although I don’t do it while I have kids in the car, I like to drive as fast as I can everywhere I go, so 13.2 mph would seriously hinder that. I’d also be a good candidate for road rage. I have a lot of angst these days. If you see a navy Tahoe hauling A down the road, gimme a wide berth, ok? I don’t have the bumper sticker announcing myself as a member of the crazy tribe (yet), so look for the Red Sox license plate frame and tow hitch as I fly by.
If you’re not ready to commit to a bumper sticker maybe you’d prefer to have your dog do your talking for you. If so, get this:
It’s made in the USA, after all. I can see Pedey wearing his proudly. Except no one would ever see it, since he spends 99 percent of his life sitting in my lap. Lord knows that Lazybones doesn’t venture outside to see & be seen; too tiring.
I’m guessing the doggie t-shirt doesn’t come in Harry’s size. Although the crazy label does indeed apply to him. If we did find one big enough and get it on him, he’d throw his back out trying to wrestle it off his body, then knock out a tooth ripping the fabric to shreds. Sweet boy.
You can also get a button, to warn people off:
I especially like the woman chasing the man with the knife, and the Edward Gorey-type illustration. Classy.
There’s also a handy card available, presumably to hand out while swinging cats at the hoi polloi. That’s convenient. Wonder what the minimum order is on that?
I just realized that Sunday was 10 months exactly since my mastectomy. And tomorrow will be 2 weeks exactly since reconstruction. I’m trying hard not to think about the fact that exactly 3 weeks after the mastectomy came the infection, which landed me back in the hospital just as I was getting my life back, and ended up costing me 23 days of incarceration (hospitalization); 3 vacations (Duke girls’ trip to Lake Tahoe, to Tyler for Payton’s All Star team’s state championship, and our annual visit to Boston and Salisbury Beach); 3 more surgeries; 10 days of twice-daily IV antibiotic infusions at home; and introduction to and hatred of Sucky, the wound vacuum. All in one summer. I’m sure that nasty infection cost me more that what’s listed, but those are the highlights.
I’m trying, really trying, not to think that a catastrophe is coming. I’m trying not to wait for the other shoe to drop, for the bottom to fall out, and the walls to cave in on this recovery. It’s a fragile peace. Very fragile.
Two mantras run through my head: It’s Temporary, and Don’t Borrow Trouble.
The first comes from Jenny, my survivor-sister mentor who has walked this walk, and then some. Her kids were 7, 5, and 1 year old when she was diagnosed, and like me, her case was anything but textbook. Hers was way worse than mine, and we veterans do like to compare and contrast. But she not only survived, she thrived, and she’s a shining example for me every single day. Now that I’m getting closer to being “done” with this “cancer journey” I appreciate her example even more, because she’s my tour guide for L.A.C.: Life After Cancer.
The second mantra comes from guest blogger and night nurse Amy Hoover, and along with her charging me $10 for being difficult, she reminds me to avoid looking for the bogeyman. Ignore him, assume he’s moved on. I suspect all survivors have a little bit of pessimism in them, no matter how chipper they seem. Yes, I’m glad to have been one of the lucky ones, who found it early and can bask in the security of single-digit recurrence rates. And yes, I do try to look on the bright side, count my blessings, and walk on the sunny side of the street (as my mama used to say). In general, my side is blindingly bright, my blessings are innumerable, and I need SPF 70 for the powerful rays on my side of the street. But the thoughts are still there. Sometimes.
Sometimes thoughts of “what if?” fight their way to the surface and take giant gulps of pessimistic-filled air. Those gulps sustain those thoughts as they traverse my grey matter and circumvent the rational side of my brain that tells them to hush up, quiet down, and go away. The rational side of my brain fusses at those thoughts to beat it, get outta town, and quit plaguing me with doubt, worry, and fear. And usually, it works.
But sometimes, instead of celebrating the milestones and thinking about how far I’ve come, those thoughts prevail. Instead of holding my head high even though my back still isn’t completely straight from the giant incision on my belly, I cower a little. Just a little, because I absolutely despise cowering. But sometimes my irrational brain takes over and reminds me that there are no guarantees in life, and there certainly is no travel insurance on this “cancer journey.” I’m the poster child, after all, for doing everything right lifestyle-wise yet still being crapped upon by the giant cancer bird in the sky.
That’s how I feel today. Don’t say I didn’t warn you.
If you’re not in the mood to read something scathing, if you’re feeling a little frail today, or simply don’t like bitchin’ & moanin’ then I suggest you move on, because I have a powerful need to get it out. Bleeeeeeeeeeeeeh.
Don’t know what set this off, and in my current state of utter bitchiness, I don’t really care. I’m just feeling pissy. Been fighting it since I woke up this morning, and am only 4 hours into it, so it’s gonna be a long day. I’m not too proud to call for help in the way of a bloody mary followed by a bottle of champagne followed by a Shock Top or two followed by an extra-tall vodka tonic with extra lime. Yeah, yeah, yeah, I know that alcohol isn’t the answer, and in many cases actually makes the problem worse, but today I don’t really care, and if you want to lecture me about the dangers of overindulging or how alcohol consumption is tied to increased rates of cancer recurrence, don’t bother. I already know that. But some days it just doesn’t matter.
Today is definitely one of those days.
The straw involved in this particular breaking of camels’ backs came when I decided to spend a little time mindlessly surfing the blog-o-sphere this a.m. in search of humor, inspiration, and distraction from my wickedly bad mood. There are a lot of good blogs out there, and if I ever get out of this funk, I plan to create a blogroll on my blog’s homepage, to share some of the greatness I’ve found. And I will do that. Y’all know me, once I set my mind to something, I do it. ‘Nuff said. But for now, I am waylayed, stymied, stopped in my tracks in my pursuit of a mood-elevating stint on the ‘Net.
Why? Because in the span of 10 minutes I came across 2 blogs that tell me I have to be invited to read before I can even click one single time to see if it’s a blog that appeals to me. WTH??? I have to be invited to access a blog I don’t even know if I’m going to like, much less return to or perhaps follow regularly? WTH???
Ok, on a normal day (whatever the hell that is), I might come across an “invitation only” blog and think, hmmm, that’s interesting, I wonder why it’s configured that way? I’m pretty new to the blogging world, and there’s a lot I don’t know about the wide and wonderful world of blogs. On a normal day, I might wonder: Is this invitation-only blog’s readership so huge that they have to separate the wheat from the chaff? Does the blog’s author feel particularly strong about privacy, as opposed to airing her dirty laundry, the way I do in my little blog? Is she just snotty and isolating in general but in particular toward other BC survivors who are trying to muddle along in this wretched “cancer journey” and seeking solace or answers from those sister souls who’ve been there before?
Maybe that blog author is just a bitch.
This blog author certainly is bitch-y. But I don’t think I’m a bitch. Maybe I am, but today, who cares? I don’t really think that other blog author is, either, although I can’t say for sure since her stupid blog is by invitation only. Screw her, I don’t want to read her stupid blog anyway. I’m gonna pack up my flaming bad mood and leave her holier-than-thou protected blogsite. Bitch.
The post-op instructions that I brought home from the hospital mention something about mood swings and periods of intense emotions. Apparently it’s all part of the “cancer journey” and in particular, the recovery from the major surgery required to try and put the pieces back together after a firestorm of mutated cells banded together to create some bastard tumors that burst through my milk ducts and invaded my system. Rude.
Maybe this is the mood-swing-and-intense-emotion portion of my recovery. Maybe this is the culmination of the hormone frenzy that goes on in my tired, taxed, put-upon body every single day, and today the frenzy got the best of me. Maybe this is totally normal for those of us in the midst of a “cancer journey.” Maybe this is just an ordinary, run-of-the-mill bad day.
Maybe it’s all of the above. One thing I do know for sure is that I am sick, really sick, supremely sick of all of this. I’m not a good patient on a good day, and I’m a hellabad patient on a bad day. Oh how I am sick of all this. Sick of the pain, yet leery of the pain meds. Sick of the drains yet aware of their necessity. Sick of the right drain leaking yet too pissed off to attend to it. Sick of the pile of dirty clothes with patches of bloody spots from the damn drain leaking, yet not at all motivated to start the laundry. Sick of the fact that I need to start the laundry, yet still haven’t been cleared to do any chores. Sick of chores needing to be done while I’m not cleared to do them, yet unwilling to seek help. Sick of having to think so hard about what to wear because of incisions and drains, yet unwilling to stay in my jammies another day. Sick of how hard it currently is to do the basic everyday things (like washing my face), yet not satisfied with the “it’s temporary” mantra that usually calms me. Sick of wondering if raising my arm high enough to reach a glass is the motion that will tear the micro-stitches and disrupt the healing of the micro-surgery, yet thirsty enough to reach anyway. Sick of worrying if I’m doing too much or being too still, yet too lazy to find the answer. And I’m sick–really sick–of sleeping on my back. I’m a side-sleeper but I have to sleep on my back, yet again, because I can’t lay on my incisions. Dammit to hell, I can’t even get comfortable at bedtime.
I’m 11 days into this recovery, and while my rational self knows that 11 days isn’t long enough to heal, I’m impatient and fidgety and ready to move on. But then I realize that when it comes to moving on, I don’t really know what that means. Baby steps aren’t my style. I’m more apt to pitch headlong and headstrong into something and just get ‘er done. Only, in this case, I don’t know how to get ‘er done. Have no clue. I’ve been on this “cancer journey” so long that I don’t exactly remember how to get ‘er done. Don’t even know what it is I’m supposed to be getting done.
All I know is that I’m cranky, irritable, and just plain bitchy today.
Not to be overly dramatic here, but I was scared. Only for a second, but really and truly scared.
I saw a small dark spot on my jammies top, right near my personal “ground zero” or also known as my right chest wall, site and host of the Mycobacterium Olympics 2010.
My first, terrifying thought was that fluid had leaked from my skin at the site and soaked a spot on my shirt.
Not a good thought.
Turns out it was a small piece of fuzz from a red blanket, but it was in just the right location and was just enough darker than the pink jammie top to look like a wet spot.
It’s been 5 months since my last hospitalization for this wretched infection, yet it still has the power to scare the tar out of me and render me speechless, breathless & frantic for a moment at any given time. There has been (knock wood) absolutely no sign of said infection for those 5 glorious months, but it still freaks me out.
I’ve joked before about having PTSD — post-traumatic stress disorder. Now I’m thinking it’s no joke. Then I see this article, from the Telegraph online. Kismet? You betcha.
The article starts with a catchy lead (y’all know I’m a sucker for a good lead): “The debilitating disorder is often characterised by agitation, anxiety, depression, nightmares, flashbacks, and mood swings. It is more often associated with soldiers returning from battlefields who have been shell-shocked by their experiences.”
Ok, I admit when I read it, I thought “flashbacks” meant “hot flashes” for some reason. Perhaps because I was suffering from one (hot flash, not flashback) at the moment I read that sentence, and my brain went a little wonky from it.
But here’s the important part: a new study (I also love new studies) has found that women diagnosed with breast cancer have an effect similar to PTSD. Researchers site the effect of diagnosis combined with all the unknowns (surgery? chemo? recurrence? etc) equaling a good chance of developing PTSD. They studied 331 women in a Greek hospital and found that 45 percent showed signs of PTSD. What they did not disclose, however, is how they came up with 331 as their sample size. Inquiring minds would like to know. That seems like an odd number to me, no pun intended. The findings were presented at the Impakt Breast Cancer Conference in Brussels. Now not only do I wonder about the 331 women, but also who in their right mind would spell the name of their conference incorrectly? Impakt? Really? Or is that how “Impact” is spelled in Brussels? Why doesn’t the article tell me these things???
Last year there was a similar study done on the possibility of PTSD in heart attack victims. Seems 1 in 6 heart attackers (16 percent of those studied) suffered from PTSD, while some 18 percent of them exhibited symptoms.
Those kinds of statistics confuse me. Does it mean that 16 percent of the total group studied had full-blown PTSD, while another 18 percent of the same group just had some symptoms? Regardless of the answer to that question, it’s interesting (to me, anyway) that the percentage of breast cancer patients suffering PTSD was so much higher than the percentage of heart attackers who suffered.
I’m not a researcher and am not involved in any groundbreaking studies, but I’d guess it’s not just breast cancer that renders its victims full of PTSD. What’s really scary is that women still show signs of PTSD even if their “cancer journey” is complete, with successful treatment and remission of the dreaded disease.
Uh oh. So it’s not enough to accept the diagnosis, endure the surgeries and/or treatments, decide on reconstruction, and monitor our health ad nauseum. We also have to slay the disease, but live with the resulting monkey on our back.
They also found that women still suffered PTSD and had a poorer quality of life three years after diagnosis and treatment.
I’m imagining fast-forwarding to 2013, when let’s assume for the sake of this argument my infection is a thing of the past and I’m cruising through life with new girls. Euphemistically speaking; I’m not ditching all my friends and finding new ones. I like ’em all too much to ditch ’em.
Let’s imagine that my “cancer journey” is complete in 2013, except I still take my daily Tamoxifen and see my oncologist every 3 months and get body scans quarterly. I am, for the most part, done. But I’m still going to have PTSD? And a crappier quality of life?
The researchers, from the Panteion University of Athens, warn that doctors should watch out for the signs of the condition when they are treating patients with breast cancer. Those Greek people are smart, gorgeous, and all-around awesome, and everyone on Earth would be wise to listen to and emulate them.
They warn: “Knowing that breast cancer patients are susceptible to PTSD, it might be necessary for the field of medicine to create a plan in assisting cancer patients that takes into account the entire spectrum of a patient’s experience with the illness.”
Emma Pennery, from the British charity Breast Cancer Care, said: “The principle that women, and men, will have an ongoing risk of anxiety and depression following a diagnosis of breast cancer is well known, and there is a range of national guidance in the UK which covers the role of health care professionals in providing ongoing emotional support to patients. ”
I’m curious about that “range of national guidance” and wonder if it will make it across the pond. I certainly haven’t gotten any national guidance in all this. That said, if some form of it came my way, I’d probably scoff at the bloated, partisan jibber-jabber as something dressed up to look valuable but in reality is just an oily politician’s idea of pandering to me and those in my shoes.
But that’s probably just the PTSD talking.
You’re probably familiar with these little creatures. They look like they’re made of wood, but it’s probably some synthetic material instead (they are made in China, after all). They’re simple and heartfelt, and each one has a theme. Apparently you can get a Willow Tree angel for all manner of life events, from birthdays to anniversaries to new babies.
There are also symbolic Willow Tree angels, and people tend to give them based on this. For example, the ones my mom had received were Angel of the Heart, Angel of Hope, and Guardian Angel.
I’ve had them on one of the shelves in my kitchen over the desk, next to a stack of cookbooks. Several times I’ve almost knocked them over while reaching for a cookbook, and every time I remind myself to be careful and not go crashing around like a bull in a china shop, or like an overworked housewife around a bunch of fragile angel figurines. At least one of these angels has taken a tumble over the years and needed to go to Ed’s repair shop, where he has a vast assortment of glue and both the time and the patience to fix a broken wing.
Imagine my horror when I once again reached for a cookbook in a big hurry and knocked 3 of the 4 angels clean off the shelf. Before I could even react, there was a tumble of bodies and a heads, literally, were rolling across my kitchen desk.
It looked like an angel crime scene.
I’m rather superstitious, although I don’t like to admit it but now it’s out there. There’s a black cat that I see in the parking lot of the club a lot, and twice I’ve reversed my route to avoid driving by it. The other day I spilled some salt while refilling the shaker and threw it over my left shoulder, instead of scooping it off the counter and throwing it in the sink. You will never, ever, ever catch me walking under a ladder. No way. Not even on a dare. A few weeks ago while driving down Austin Parkway, I saw about 10 vultures stretched across the street, feasting on something. The sight of all those ghastly birds freaked me out and made me wonder, if crossing a black cat is bad luck, what in the world would happen to the poor soul who crossed all those vultures? You’d have thought the Grim Reaper was sitting on my doorstep, awaiting my arrival. Thankfully those birds were on the other side of the divided road, so I didn’t have to turn around and find another route home.
So when the angles came tumbling off the shelf, I panicked. It took me a few minutes to find all the pieces, and sadly I still can’t find one head. I wouldn’t be surprised if one of my dogs found it and thought it was a tasty treat. Hope the paint is lead-free.
I can almost hear my mom tsk-tsking me from the Great Beyond, shaking her head and wondering why her wild-child daughter is always in such a hurry, or why that girl never learned to take better care of her things, or why she insisted on hopping on top of the desk to reach the cookbooks, instead of going to get the step-stool.
If I had used slowed down, been more careful and used the step-stool, I likely would have been able to avoid the gruesome angel carnage. But I probably wouldn’t have even taken notice of the little angels. I certainly wouldn’t have noticed that the one remaining angel, pictured at the top of this post, is named the Angel of Healing. But I will stop and savor the fact that out of my mom’s angels, that’s the one I need the most.