I didn’t fall off the face of the Earth. It just seems that way. The Belly is still in business; thanks for your concern.
I had every intention of sitting down for a nice, rousing blog post over the last week, but life got in the way. It tends to do that. While the days were whizzing by and I remained blog-less, several ideas for posts meandered through my brain, but because I didn’t write any of them down, they’re now a swirling mish-mash of disjointed words and unattached ideas. Probably best to just start fresh. That’s what the New Year is for, right — starting fresh?
Being an overachieving busybody, I have tons of plans rattling around in my head. Yucky but necessary plans, like cleaning out my study and purging the stuff I don’t use anymore. Like touching up my kitchen paint, which has been nicked in many places as this busy little family has gone about its business over the last few years. Like repairing the wallpaper in the powder bathroom, which has started to peel in a few spots. It’s the only wallpaper in my house and I love it: big, lush banana tree leaves. Those giant leaves wrapping around that small space makes me smile, 8 years later. Lots of projects on the to-do list in addition to the everyday hub-bub of keeping my family up and running. After a long, leisurely winter break, my kids went back to school today (a somber affair that remained heavy and dreary despite the oh-so-rare appearance of a warm Pop Tart on each kid’s plate. Yes, I am that mom — the one who deprives her kids of sugary processed pastries for breakfast. Poor babies).
Besides a fresh start and umpteen projects, the New Year brings me perspective. Before looking forward and lurching headlong into 2013, I want to take a mo to reflect back on 2012. While 2012 had its challenges, it was a far cry better than 2011; that year and the one that preceded it were pretty stinky, with a cancer diagnosis followed briskly and cruelly by a nosocomial infection that would. not. go. away. Looking back on those dark days makes me shudder.
Many parts of that “journey” remain hazy in my mind. When I think back to that time, it’s almost as if I’m watching a movie. A really bad, really scary movie. I know that it was I who endured it, yet my brain tries to protect me from conjuring up the details. Thank you, brain. I remember bits & pieces of it all, but not the specifics. It’s not as if I’ve erased all the unpleasant memories; they’re just faded. When I go back to the month I spent in and out of the hospital because of that damn infection, I can recall the exact look of each room in each of the three different hospitals, but I can’t really remember what that time was like. I know there was a lot of hopelessness and fear, but if I had to describe it, I would fumble. If you were to ask me what it was like to undergo a bilateral mastectomy two weeks before my 41st birthday, I’m not sure I could come up with more than, “It was hard.”
If you ask me how it felt to have a wound vac attached to me 24-7 for weeks on end, my answer would be that I can’t really say. I remember how loud that damn thing was, and how cumbersome it was to lug it around. I remember my home-health nurse coming four times a week to clean the wound; I know she measured the depth, length, and width of that wound every visit, and compiled the stats in a handy chart that we used to hang on to a semblance of hope that progress was being made, that the damn thing was healing. I know she used an oversized, medical-grade Q-Tip to clean the wound, and that it was horrific enough that she recommended a xanax before each visit (for me, not her). I remember her using that giant Q-Tip to gauge how deep the wound still was, yet when I try to recall how it actually felt, I can’t. I guess that’s a good thing.
This time last year, I was trying to regain my footing as I negotiated life after cancer and that awful infection. I didn’t make any New Year’s resolutions that year, or this year. I’ve never been one to inscribe grandiose plans upon my new calendar. Perhaps it’s an effort to fly under the radar. To live a normal life. To step lightly around the sleeping beast that is cancer recurrence. To put as much time and distance as possible between then and now.
To say that a lot has happened in the last year is an utter waste of words. I’m not sure there are words to convey how much has happened in the last year; if there are, they are reserved for better writers than I.
Being diagnosed with cancer at age 40 is a shock. Duh. It’s scary and unexpected and unnerving. Double duh. 40 is when we hit our stride. For me, it meant my kids were old enough to not need constant supervision but to still need my guidance. I’d recently discovered tennis, the new love of my life, and had time and freedom to play often. I had a tight circle of friends who knew who they are and where they want to go. I was very comfortable with the direction of my life and the steps I was taking to make it the very best it could be.
Then came cancer.
That vicious beast had already stolen my sweet mama from me, when she was only 67. I was 36 and finding my own way as a mother, and needed her input and presence. But more importantly, I needed her friendship. She and I never had the contentious relationship that a lot of mothers & daughters have. We always liked each other. Maybe because we were a bit opposite: she was yielding and I was (am) opinionated. But maybe we just got lucky, and had that special relationship that some fates bestow upon some people but not others. The reason for our good relationship is immaterial; the fact was, we treasured each other, and losing her was the worst thing to ever happen to me.
Until April 27, 2010.
My guardian angels were asleep at the wheel.
I’d been getting baseline mammograms since my mom died, since hers was a reproductive cancer and that put me at a slightly greater risk. More so, though, was my OB-GYN’s diligence. Her husband is an oncologist at MD Anderson, so she’s super-tuned to cancer and its sneaky ways of getting its foot inside the door. She saved my life. Pure and simple. And monumental.
When the news came on this day last year, I listened to everything Dr Dempsey told me about my cancer, as Boss Lady Staci dutifully took notes in Trevor’s stead as he hustled home from a business trip. I held it together until the end, when she asked if I had any more questions and I had one: how do I tell my kids?
They’d watched their YaYa die from cancer, and while only 6 and 3 years old, those memories are powerful. They wanted a lot of assurance that my cancer was different in every way from YaYa’s and that it was not going to kill me, too.
One week after my diagnosis, Payton turned 11. I was gearing up for a double mastectomy, but wasn’t going to neglect his celebration, because if we can’t celebrate life and its happy moments, then cancer might as well come and get us all. We had the usual birthday breakfast on the personalized birthday plates, just as we had every year. As I placed his feast in front of him, I muttered my birthday wish, which was to make sure I was around to place that personalized plate in front of him on May 3rd for many years to come. My firstborn isn’t going to celebrate his birthday without his mama if I have anything to say about it.
The day before my mastectomy, Macy and I met Jeffrey, the orphaned mockingbird rescued by Amy Hoover’s family. We’d been hearing about this little guy, and my animal-loving girl needed to see him for herself. I had a million things to do to prepare for not only surgery but also weeks of dependency, but we made time to meet Jeffrey, and I’m so glad we did.
Two weeks later, I turned 41. I celebrated in typical fashion, with a girlfriends’ lunch and champagne that night. White cake and bubbly are two of my favorite things, and they just say “party” to me. I didn’t feel great, but I was determined to greet the next year in my life with a glass in my hand and a smile on my face. Being surrounded by my best girls during the day and my family in the evening reminded me that life goes on and that while my recovery was hard, it was do-able, so take that, cancer.
A few days before my birthday, I strapped on as much determination as I could muster and took Macy to see Taylor Swift at the Toyota Center with her best bud, Ella, and my partner in crime, Jill. I was so afraid of being jostled by the crowd, as I was still pretty sore and healing was far from complete. But I wanted to be there and be a part of that big event, and to prove to myself that life doesn’t stop for cancer. I’d lost my breasts but not my drive. The glowsticks burned brightly as the music thumped, and I sat next to my favorite girl and soaked it all up. Every last drop.
Good thing I did, because my healing and happiness were short-lived.
Just as I felt like I was really recovering from the mastectomy, the nosocomial infection entered my life. A curveball? And how.
Hospitalized for 9 days, pumped full of antibiotics, right tissue expander removed and left expander drained, my life took a decidedly unpleasant turn. It took 6 weeks to diagnose the mycobacterium, and nearly a month total of days spent in the hospital. That first 9-day stay was the longest of my hospitalizations, but also the scariest because the infection was hiding under the tissue expander, hard to diagnose but making me really, really sick. A month after the 9-day stay, I was back in the joint. Out for 3 days and back for 5 more days. Then, out for 2 weeks and back in for 3 days. A seemingly never-ending cycle. Each time I had to go back in, Macy would hand me Froggy, her most beloved of all her “crew” of stuffed animals. He’s been with her since she was a tiny baby and has enjoyed favored status among the masses of other stuffed animals. He’s been in her bed every night and has gone on every trip she’s taken, and she gave him to me to take on each trip to the hospital. He had a bath in hot, bleachy water with an extra rinse every time he came home to her.
She also gave me Baby Snoopy, another coveted member of the “crew,” and my heart swells at the idea of my baby girl’s thoughtfulness. Though she hated to see me go back to the hospital, she knew her “crew” would comfort me in her absence.
Gross picture, yes, but I did make it smaller so you don’t have to see it in all its glory. Apologies to Christy, who hates this kind of stuff, and Julie: you’d better start skimming because this is the icky part. The aftermath of the mycobacterium is unpleasant, for sure. And this is not the worst shot there is; this shot was taken after much healing had occurred, believe it or not. The wound left behind by the infection was 5.6 cm long, 3 cm wide and 2 cm deep. That dang bug wreaked a lot of havoc on my already-ravaged right chest wall, and it killed what little bit of healthy tissue was left after Dr Dempsey scooped most of it out to rid the cancer. It’s an insidious bug that is hard to treat. It’s not drug-resistant, like MRSA, but it is very slow-growing and so it responds slowly to antibiotics. Hence the long, long, looooooooong course of oral abx and the multiple rounds of IV antibiotics, at home and in the hospital. I still have this collection on my kitchen counter, to take twice a day, but luckily haven’t needed the IV version since the last go-round in March. No idea when I’ll get off the oral abx, but sweet Dr Grimes, my infectious disease doc, has told me that he has patients who are on abx therapy for years. Years. Plural. Egads.
Trevor and I became fluent in home health care and learned how to administer the vancomycin and cefapim all by ourselves. The learning curve wasn’t steep, and the whole process was very systematic. My home health nurse, Chona, was as kind and competent as could be, but the gravitas of my situation was clear.While I dreaded it and resented the 3 hours it took twice a day to infuse, I counted my blessings and reminded myself that it could be worse: I could be getting those drugs via IV in the hospital. Again. Which is why I smiled for the camera, tethered yet again but happy to be at home, with Snoopy to keep me and my IV pole company. And yes, that is a glass of wine on the table next to me. It was a dark period in my life, people; don’t judge.
This is what Sucky’s appendage looked like strapped to my body, so it could suck out the gunk and speed the healing from this curveball. The size of the plastic sheeting and the tape required to keep the Sucky train rolling was big enough to give me the vapors, and my poor skin is shuddering at the memories right now. And isn’t everyone thankful that I didn’t have a better camera than the one on my iPhone? Imagine how gruesome the photos would be! Oh, the horror.
The amount of supplies needed to deal with that wound was staggering. The home health stuff was delivered in big boxes, which cluttered up my office and dining room for a day or two before I said enough! and organized everything to minimize its presence. Out of sight, out of mind (sort of). I pared it down as much as I could.
I became proficient at prettying up the ugly truth of cancer treatment, and its equally- ugly friend,infection aftermath, fared the same. I may not have had control over the mutating cells in my body or the nasty bug that invited itself in post-mastectomy, but I sure could dictate how my surroundings would look during the after-party.
The amount of supplies needed for this fragile existence was great, and so was my need for comfort. That I found comfort in bubbly and coconut cream pie should come as no surprise to anyone who knows me. I may have been down and out, with cancer and infection taking their pounds of flesh (literally), but I was powered by Piper and pie.
The summer wore on and I barely saw the sun. And only then, through the window; I didn’t get out much. Between the hospital stays, feeling puny, IV drugs, and being on guard against germs, I missed out on a lot.
I did make it to Macy’s 2nd grade last-day-of-school festivities. She had something funny to say when it was her turn to take the podium, and although I don’t recall what it was, I’m glad I was able to be there to see her in action. I also dragged my sorry carcass to Payton’s 5th grade farewell. My friends in high places in the school volunteering world pulled some strings and had a reserved seat for me, along with a parking cone to save a parking place for Mary, who carted me there and back. My baby was moving on to middle school, and I was moving slowly–very slowly–toward recovery, from cancer and infection.
Right before school ended, Payton was honored with a spot on the All Star team. This boy lives & breathes baseball, and has from his earliest days, so this is a big deal.
The team went from District to Sectionals to State (or maybe Sectionals to District to State), and I made it to 1 game. Being in the hospital while my favorite player did that thing he does best was hard on this mama. His team had a lot of heart, in addition to some mad skills, and they were kind enough to play in my honor for the duration of their run toward State champs. I’ve never been more honored and humbled as when he came home from practice the night before the first tournament (District? Sectionals?) with a pair of pink sweatbands on his wrist. Learning that the entire team was wearing the pink, for me, moved me, and like the Grinch, my heart swelled to maybe a normal size.
I’ll be forever indebted to all the other All Star moms who cheered for my boy and provided yard signs, pool parties, custom shirts, and child-wrangling assistance in my absence, at our home field and on the road. Missing the games was hard, but knowing that my circle of baseball moms had my back made it bearable. And having my signed photo of the boys in red (with a dash of pink) brightened my hospital room and my spirits. That frame now sits on my dresser, and every day when I see it I remember not only the special summer of baseball success but also the pure hearts of the families on that team who helped my own family in our time of need.
Good things can come from a bad situation. There is hope inside a diagnosis. You get a measure of the depth of people’s kindness, which comes out in lots of ways. Like custom cupcakes. I liked that one a lot, and so did my kids.
Like a card signed by the staff at PF Chang’s during a celebratory lunch. Our waiter knew we were celebrating some good news in the cancer battle and took it upon himself to have his co-workers celebrate along with us. I said it then, and I’ll say it again: Eat at Chang’s!
My friend Paula from Duke ran in the Salt Lake City Race for the Cure in my honor and sent me her bib from the race. At that point, I was a long way from even considering doing a 5K, so it did my heart good to know she was out there, pounding the pavement among an army of pink and thinking of me.
One weekend in between hospital stays, Macy and I snuck away to Galveston with Christy and her daughter Alexis, for a much-needed break from illness, wound care, and calamities. Macy caught a huge fish off the dock, and seeing her proud smile made the trip even better. There’s something magical about the sunset off the water, and I savored the splendor.
Once word got out that the puppy-sitting business was up & running, we got to keep Pepper for several days. My kids loved having her to snuggle with on the couch, and I relished the idea that the hard times were morphing into better times.
School started, much to my children’s chagrin, and Payton went off to middle school while Macy began 3rd grade. A few days after school started, I was fresh out of the hospital, she and I rocked out at the Jack Johnson concert in the Woodlands. Because I had been hospitalized, again, so recently, my attending the show wasn’t a sure thing. I still had the dressing on my port-a-cath and wasn’t feeling great. What is a sure thing, however, is that I’m as stubborn as cancer is shitty, so I made it to the show.
August and September were spent recuperating, and at the end of September I hobbled myself on down to Tootsies, a chichi clothing store in the high-rent district that was outfitting survivor models for the Couture for the Cause fashion show. I’d only been out of the hospital for a month, but I had committed to doing the show and I made good on my word. Scared breathless and unsure of myself are not states in which I commonly find myself, but the fashion show landed me smack dab in the middle of “What in the world am I doing?” territory. I wasn’t wild about the dresses I wore, but my shoes were a-maz-ing and the experience is one I truly will never forget. Oh, and we raised almost $100K for the cause.
October signaled the return of some normalcy. I was able to put together something I’d daydreamed about a lot in the hospital: the First Annual Pink Party. I wanted to gather my circle of girls who had seen me and my family through the roughest part of the “cancer journey” to show my thanks and spend some non-sick time together. With the pink theme, yummy food (if I do say so myself), and plentiful drink, it was a smash success.
We seemed to have the infection under control and the antibiotics were doing their job, and after a much longer-than-anticipated hiatus, I was back on the tennis court. My sweet tennis friends gave me a little trophy that says “Winner,” and it’s the best trophy I’ve ever won.
This little trophy soon had a friend, though, after Boss Lady and I won the Witches’ Open at the end of October. Being back on the court with my tennis friends was so great. Tennis is very good therapy.
As if that day wasn’t fun enough, that night was the Maroon 5 concert in the Woodlands. Tennis, then dinner and the show was a balm for my battered soul. We ate & drank then sang along with Adam for an unforgettable night.
Before too long, fall was upon us (or what passes for fall in Houston), and we readied ourselves for the holidays. Thanksgiving was spent with Team Cremer, with everyone contributing something to the feast. The kids worked off their meal with the traditional post-turkey swim. We had a lot for which to give thanks.
Christmas and the New Year came and went, and before I knew it was time to start making preparations for reconstruction. The Big Dig was a big step, and I had hoped it would signal the end to my “cancer journey” and allow me to put all that hardship behind me. Adding another doctor, and another Dr S, to my cast of characters could only mean one thing: I was going in for a very big surgery.
The DIEP procedure is amazing and hard, in a lot of ways: time consuming, intricate, detailed, and not infallible. Babying the newly transplanted skin, tissues, and blood vessels was hard work, and the crack team at Methodist in the med center did an outstanding job.
It was a hard 3 days, no lie, but at least I was going home. One thing I would miss from the hospital was the morphine. Oh, how I love that stuff. I guess a lot of people do, too, because they guard it closely and I got a laugh from the ping-pong-paddle-key used to replenish my supply. Kinda reminded me of a gas station restroom key.
One thing I would not miss from the hospital was this chair.
This was the chair in ICU that I had to hoist myself into, after hoisting myself and my 17-inch-long abdominal incision out of bed. Again, it’s a good thing I’m so stubborn, because it would have been easy to roll over, say this is too hard, too painful, too much. But by golly I was going to get out of that bed and into that chair no matter what, and with my morphine pump in hand, I did just that. I don’t think I cussed too much, either.
Recovery from The Big Dig is ongoing, and they say it will take a while longer. I’m not the most patient person, and I’m ready to have everything back to normal. Of course I know there’s a new normal, and it progresses at its own pace, not mine. It’s been a long, tough “journey,”and it seemed that everything that could go wrong did go wrong, for a while.
But a lot of good things have happened, too. I started blogging, for one, with Pedey at my side or in my chair, or both; who knew so many people were interested in my little “cancer journey?” It’s humbling and rewarding to see my “readership” grow, and I am immensely grateful for all the love and support that’s come my way. Someday I may have no cancer-related news to share. How weird will that be? I imagine I’ll find something to talk about in this space, nonetheless.
I will have more stories to share about my adventures with Dr S. There are a couple of revisions that he needs to make to his palette that is my newly constructed chest, and while we argue about the timeframe for that, it will likely provide blog fodder and laughs along the way.
And like the butterfly bush in my backyard that was uprooted and tossed around by high winds recently, I weathered the storm. I’m setting my roots and hoping that the winds that blow my way in future are calmer.
I was just wondering what I could blog about, since it’s been a while since I’ve posted anything. Now that my life is more or less back to normal, there’s just not as much fodder for posts. This is a good thing, because it means my health isn’t full of breaking-news updates, but a bad thing because I really like writing and many of you kind souls have said you really like reading my posts. So I was pondering this while doing something seemingly insignificant but actually quite momentous over the weekend. I put away all my medical supplies.
There’s been quite a collection on my bathroom counter since August. Way back in late July & early August, while I had home health care for the IV antibiotics, I amassed a huge pile of supplies. Everything from wound vac stuff (remember Sucky?) to heparin flushes to alcohol wipes to gauze pads. And a bunch of other stuff in between. I hated every piece of medical paraphernalia from the moment it entered my home. I know I should be grateful for it all, and for the comprehensive health insurance that paid for everything. And I am. I truly am grateful, and think a lot about how much more stressful this whole mess would be without insurance. But I still hated all the supplies.
I hated the supplies because they reminded me, in a very tangible way, of how perilous my health was. No one ever talked out loud about how dangerous this infection business really is, but you’d have to be be pretty dense to not get it. I certainly didn’t need a reminder to know that my situation was serious — I lived it every second of every day. Even now, 2-plus months after all that mess, it still scares me, just a little bit. I still look over my shoulder and don’t entirely trust the good health I’ve been enjoying lately.
So this weekend I got cocky and decided it was time to pack away the supplies. I no longer needed the saline and gauze to clean a wound, or the antimicrobial silver dressing to put inside the wound, or the antibiotic cream and tape. My skin can finally breathe now that it’s not encased in plastic dressing and tape. I’ve been lax in taking my temperature every day, and only do it every other day. I still have the syringes and teeny little vials of B12 liquid that gets injected in my arm once a month. And I still have a stash of pain pills, which I don’t need but I like knowing they’re around, just in case. But for the last several weeks, I haven’t needed to get into those supplies.
Once that nasty wound finally healed, there was little need for the plethora of stuff, but I was so used to having it on my bathroom counter, it all really seemed to belong there. It became a fixture, I suppose. Until this weekend. When I got cocky, again. Last time I got cocky, I decided I didn’t need the probiotic anymore, even though I’m still on two antibiotics twice a day. That lasted exactly 2 days. But several weeks had passed without incident, so I guess I got bold and decided it was time for the supplies to go.
Silly, silly girl. When will I ever learn? I’d been feeling not quite right for the last several days. Nothing I can really pinpoint, but something seemed off. So when I saw Dr S today he immediately noticed a reddish-purpleish spot on my right side that seemed pretty puffy. I think his exact words were, What the hell is that??? Never a good sign. So he poked around for several tense minutes and sure enough that spot felt different than the surrounding tissue. He squished it pretty good and said there’s fluid in there.
I won’t repeat the litany of curse words that went through my head at that exact moment, but suffice to say it would make a former Marine or tattoo artist or school lunch lady proud. That was some professional cussing going on in my head. The quality of the cussing almost distracted me from the inevitable: Dr S moved away from the exam table (which is like a second home to me) and headed for his supplies. He never says much but we’ve been down this road before, or as Payton’s speech teacher Ms. Pointer would say, this is not our first rodeo.
No, sadly, Dr S and I have been rodeoing together long enough that I know that when he heads for the supplies, he is going to come back with a sharp object in his hand and a very determined set to his jaw. He did not disappoint me.
He sliced me right open, and sure enough the fluid came rushing out. Not as dramatic as the “black gold, Texas tea” segment on the opening scene of The Beverly Hillbillies but it did bring that little blast from the past to mind.
Long story short, we don’t know what’s going on. It’s probably nothing serious (repeat that phrase 1,000 times for good measure). He cultured it, so maybe we’ll know something by the end of this week. Or maybe not, because one thing I’ve learned in this long, rotten education is that you don’t always get an answer right away, and you don’t always get the answer you want. Fingers crossed that we’re not talking about an infection here. I shudder to think about the prospect of another infection, or a variation on the one I already had, especially since I’ve been on 2 oral antibiotics for something like 12 weeks. Yes, you read that right: 12 weeks. Nearly 100 days of twice-daily abx. If I’m not covered then I may just have to give up, tell the bacteria to come & get me. Have at it.
I’m not ready to start waving the white flag just yet. But I will get the supplies out of the bathroom closet and put them back on the counter, where they belong. At least for now.