Today is World Cancer Day. This year’s theme is debunking myths and erasing stigmas attached to cancer. While I’m all for the debunking and erasing, I’m not at all sure how to feel about cancer having its own day. At first blush, I thought: Woohoo! A day to celebrate! I’m always up for that. But then I thought, Wait: what exactly am I celebrating? The fact that I survived? No; too much emphasis on survival makes me uncomfortable, as if I’m tempting fate. The fact that there’s so much awareness and dialogue about cancer nowadays? No; I’m sick of talking about it and even more sick of thinking about it. The fact that I persevered despite a devastating illness and an even more dangerous nosocomial infection? No; I would have rather skipped the whole experience. Especially the infection part.
There’s a poster at my gym with this quote from Sir Edmund Hillary. I’m assuming it’s in reference to Mt Everest. I look at the poster when I’m on the VersaClimber — a cardio machine that at first seemed like an instrument of torture but now is part of my routine. Most times I have to close my eyes to get through my VersaClimber intervals (it’s pretty bad!). But when I’m not closing my eyes, I look at the poster and read Hillary’s words, and realize that indeed, we do conquer ourselves. Including the cancer.
The only thing missing from this party was my cancer.
It was a great party (especially since the cancer — and its nasty friend mycobacterium — were nowhere to be found). Last year I had one foot in the grave and had a very small party to thank my friends who’d helped me in ways large and small through the most difficult experience I’d endured. The ways in which they helped were as varied as they are: a math teacher, a PE teacher, a realtor, a crude oil buyer, a builder’s sales & marketing guru, a former hair stylist, a psychotherapist, a transplant nurse, a budding photographer, an HVAC business owner, a surgeon-wrangler, and several kick-ass SAHMs.
This year, the infection is gone, the antibiotics are history, and the party is on, baby! The rules were the same this year: wear pink, eat, and drink. And celebrate life. Really celebrate life.
Last year, I felt pretty rotten, and wasn’t much in a party mood. It had been a long, miserable summer, and the misery dragged into the fall (or what passes for fall in south Texas). Who would have thought that facing cancer and having a bilateral mastectomy would be the “easy” part compared to the post-surgery infection? Now I know that the battlefield is treacherous, and the presence and comfort of good friends go a long way.
Things were certainly much brighter this year.
I’d had a bad week, though, leading up to this year’s Pink Party. A really bad week. The last few days were emotionally charged, big time. Drama on the tennis court, histrionics from a stranger blogger, and mean girls at play in my social circle sucked up more time and energy than I realized. Factor in an early-dismissal day from school on Thursday, and this party girl was running behind schedule.
Frazzled and scrambling (and more than a little pissed off at all the drama), I got my party prep done by the skin of my teeth. A custom piece of artwork rolled out the pink carpet for my guests (thanks, David!).
Don’t forget to read the plant tag!
Having a party gave me the motivation I needed to revive my sagging, heat-stroked flowerpots, too. We need some mulch, but there was no time for that. Get the plants in the pots and move on. The ladies will be here soon! I’m oh so grateful to my superstar gardener. Thank you, Eduardo!
…and pink roses on the side table. Halloween decor mingled with all things pink is kinda weird, but the eyeball candle reminded me of the mycobacterium that disrupted my life so mightily and completely last year, and it provided a nice dose of reality to my pink plans.
Once the feather boa goes up on the chandelier, it’s time to start the party!
The menu was pretty similar this year: mostly pink foods. Salad with roasted beets, peel & eat shrimp, smoked salmon with capers, hot crab dip, strawberries & raspberries, and pink-ribbon sugar cookies with pink frosting. Oh, and the Corn Thing. Can’t have a party without the Corn Thing. It’s not pink, but it’s on the menu anyway.
The other thing I completely forgot to do this year was give a toast. I wrote a few words about each party guest and had planned to tap my glass to shush the scintillating conversations and deliver the toast. Completely forgot.
We had a most excellent bartender.
Ok, girls, here ya go:
Amy H: you have led by example and taught me how to give from the heart, and to give what people truly need. You always seem to know just the right thing to say, like the dog whisperer, only for people. No one can wrangle Dr S like you!
Amy P: the abundance of food you delivered to my doorstep sustained both my body and my soul. Knowing that a good meal was right around the corner was such a relief, and it allowed my addled brain to focus on things like wounds and puss. Your nursing expertise was a huge help as well, and I’m grateful for the late-night house calls.
Christy: you went from “my babysitter’s mom” to “my friend” in one giant leap. You walk the walk and are the epitome of “it’s just what you do” and are the one person who cusses as much as I do. I appreciate so much your unflinching honesty and your endless compassion, to people and animals. My life is so much better with you in it.
Claudine: Through your diagnosis, I have come to understand the overwhelming desire to try and ease the patient’s burden. I’m honored to be in the trenches with you.
Jenny: you’re the trail-blazer and my mentor in all things survivor. You lifted me up each time you sent me a card and each time you reminded me that “this is temporary.” You have provided a stellar example of how to live a rich and full life after cancer. Can’t wait to be celebrating my 12 years of survivorship, like you, my friend! And many more.
Jill: you have a knack for making all the right gestures and for making all the right things happen. Whether sharing a meal or raising a glass, time spent with you is always a rich reward.
Julie: my wacky friend, I love knowing that no joke is too raunchy, no comment too catty to utter in front of you. What freedom to be exactly who I am — the good, bad and the ugly — with you and know that you love me just for being Nancy K.
Laura: no one else can talk me into giving up so many hugs. Each time you took time out of your insanely busy schedule to check on me, I was reminded of what a loyal and special friend you are. And a special thanks for all the electronic medical advice you provide…whether via text or email, I know you’ll send me the right answer.
Mary: you make it seem so simple to give freely and unconditionally, and every time I’ve asked you for something, you’ve not only said yes, but you’ve agreed with a huge heart. To know that you have my back, whether for carpool or child-care, is such a comfort.
Melanie: you reached out and seized upon my hair emergency. Offering to take care of my hair at home while I was healing is something I’ll never forget. By figuring out exactly what I needed, you taught me that accepting help from others isn’t just ok, it’s pretty great and mutually beneficial.
Melissa: When we first met, when P and H were in kindergarten, I knew I wanted to be your friend. Your wit and style were (and still are) so appealing, and I enjoy every minute I spend with you. You’re a pretty kick-ass lizard-sitter, too!
Michelle: My champagne sister! What a beautiful thing to find someone who is always looking for a reason to pop that cork. Not only do I love drinking bubbly with you, I also really like to stand next to you. Dynamite truly does come in small packages, my friend.
Nicole: your carefree spirit reminds me how vital it is to enjoy life and to not sweat the small stuff. My type-A self basks in your laissez-faire attitude and I aspire to live life with gusto, just like you.
Sharon: your visits were always perfectly timed: just when I needed a pick-me-up, you would appear on my doorstep. I’ve learned a lot from you, in Chinatown and on the tennis court.
Staci: from Day 1, you kept me grounded. I knew that if I needed to go off the rails, you’d get me back on track and charm everyone we met along the way. You taught me how to grease the wheels and to take time to talk, really talk, to the people who come into our lives. And somehow, all these years later, you & I always have something to talk about.
Yvonne: as my in-house counsel, you remind me regularly that it’s ok to feel what I feel and think what I think. You bring a calming presence to my calamitous life, and your good sense and fun-loving ways always make me smile. Just when I am feeling adrift, you call saying “I miss you!” and that makes my heart happy.
I’m already looking forward to the 3rd annual Pink Party, and I’m smiling really big at the idea of us still gathering every year in October when we’re old and grey. Hopefully by then, breast cancer will be a thing of the past — but the party will go on!
Yesterday was pretty crazy. We were stranded Sunday night in Boston because of weather and heavy air traffic in the New York area, and had to spend the night in a hotel. We made the best of it, but being a day behind schedule bugs me and my type-A ways, especially when my to-do list is long and my time for completion is short.
I’ve traded the beach views for the view of the lake across the street, and while the vacation was fabulous, there’s no place like home. I love the beach and never tire of the sound of the crashing waves, but there is something to be said for the comfort of sleeping in my own bed.
Monday was supposed to be my day to “get ‘er done” and take care of all the pre-op chores. I did indeed get it done, but was half a day behind because instead of hitting the ground running, I was traveling from Boston to Houston. Don’t be jealous when I tell you I spend yesterday unpacking, going through a big stack of mail, sorting the recycling, doing laundry, getting groceries, organizing school supplies, returning phone calls, and giving thanks & treats to our pet sitters.
Today would have been a similarly busy day, but instead of wrapping up last-minute things before the surgery, I was fielding a call from my doc’s office tell me that the surgery had to be postponed. The surgical center that he uses for the type of procedure I’m having is under construction and behind schedule. Did I mention that I don’t like a change of plans?
My brain has been racing with details of the to-do list, and unwelcome thoughts of the surgery keep bulling their way in. I’ve been strangely nervous about this procedure. I expected to be joyful and excited but instead I’m uneasy. This should be a piece of cake compared to the many previous procedures; it’s out-patient for once. It also should signal my approaching the home stretch. I’m not there yet, but with this surgery behind me I would be one step closer.
So why the nerves? As REM would say, “What’s the frequency, Kenneth?” I have no idea, but perhaps it was my instinct telling me it’s not time, it’s not going to happen. Perhaps it’s the proximity to the start of school and the end of summer. I’m not good with transitions and definitely don’t like change (part of the Type-A package, perhaps?); even though the shift from summer to starting school is usually quite welcome (for me, but not my kids), I’m struggling this time around. I’m all ready, but still feel like there’s not enough time. This procedure has been in my mind a harbinger of the end of summer and the beginning of the elusive pursuit of getting back to “normal.” When I endured The Big Dig in March, I knew that as gee-gantic as that surgery was, it wasn’t the end of reconstruction and that a couple of revisions would be required. Once everything settled, so to speak, after The Big Dig, I was left with a decidedly less-sunken chest and absence of post-mastectomy-infection scar tissue. Things were much improved in the chest region. However, as with most masterpieces, the first draft wasn’t the final draft.
The second draft was scheduled to commence at 6:30 a.m. tomorrow in a hopefully-germ-free surgical center instead of the mega hospitals I’ve been in for the previous gigs. The goal is to reallocate some fat from the ends of the 17-inch belly incision to fill in the not-quite symmetrical boobage. I’m requesting that my doc fine-tunes my belly-button scar, which is kinda grody, and he will also work his magic on the spots of scar tissue along my belly incision. There are several pea-sized spots that are quite the menace: pain, throbbing, and impaired mobility top the list. I hope that there will also be some cleaning up of the “whale tail” ends of the belly incision. As the moniker suggests, the ends of that big-ass incision look like a whale’s tail, and while I marvel at the giant sea creatures, I don’t want a facsimile on my bod. Thank you, googleimages, for the visual. Imagine that lovely tail upended vertically instead of horizontal and you’ve got a good idea of what the ends of my giant incision look like.
But alas, none of this will happen tomorrow, and I have to wait. In addition to not liking a change of plans, I’m not a big fan of waiting either.
The reason for the delay is legit, yet my cries of “find me another surgery center so we can stay on schedule” went unheeded. It seems that the surgery center I was scheduled for has the right equipment for the fat transfer procedure, and while we certainly could find another gig, there’s no reason to rush it and every reason to wait until all the conditions are right. Not every surgery center/hospital has the stuff my doc needs to suck out my fat, and the one that does have the right stuff isn’t accommodating patients just now.
Three things about my visit to the doc today that were unpleasant, besides the news of the delay. First, he introduced a possibility that I had not considered: infection.
Oh yes, infection.
The very thing that dominated my life for most of the past year is now conveniently shelved in the way-back recesses of my brain. I hadn’t even thought about the possibility of re-introducing or re-acquiring an infection. Yet as my doc lovingly pointed out, with me you just never know.
So he’s thinking of sucking the fat out of the dog ears and throwing it away. Sounds great, right? Get rid of the little bulges at either end of the big-ass incision. I’m all for that. But then what do we use to smooth out the not-so-round part of my newly constructed chest?
And that brings us to the second thing that was muy unpleasant during my appointment today: the search for other sources of fat.
I thought I’d plumbed the depths of humiliation with the “grab the fat” game we played more than once in preparation for reconstruction. In this game, the doc asked me to drop my drawers so he could grab my belly fat and determine if it was plump enough and plentiful enough to construct a new set of knockers. In a modified game of Twister, he had me sit, stand, and lean over to see just how much fat I had around my middle. Not once, but twice.
Humiliating doesn’t quite cover it.
But today, it was total humiliation, all humiliation all the time. I was basically splayed out like a deboned chicken on the exam table while he searched and plotted. Ladies and gents, just imagine your least favorite body parts being put under the microscope so to speak. Just consider for a moment being asked to stand up, sit down, and contort your body in the absolute least-flattering ways so that the softest, flabbiest, most-despised parts of your body are on full display. And then have those parts analyzed and calculated to determine just how fatty they are. We go to such lengths to de-emphasize these body parts, yet mine were being trotted out like the prize-winning hog at the state fair.
And in closing, we’ll cover the third and final unpleasant thing about my dr’s appointment today: prophylactic antibiotics.
Yes, that’s right: I used the “A” word. Antibiotics. Again.
I’m going back on my old friends Bactrim and Minocycline as a preventative. Just in case any wily bacterium were thinking of re-establishing a house party on my dime. I’m nauseated just thinking about it. I spent how many days taking the dynamic duo? 267. Yep, 267 straight days of swallowing 2 pills every 12 hours.
Is there no end to this madness?
Pagophagia sounds like one of those words Lucy spouted off in A Charlie Brown Christmas. You remember the scene, in which Charlie Brown pays a call to Lucy’s psychiatric booth (The Doctor Is Way In), and she confronts him about his prospective phobias. “Perhaps you have hycangeophobia; the fear of responsibility. Or maybe ailurophobia — the fear of cats. Or climocophobia — the fear of staircases. Or thalassophobia — the fear of the ocean.”
I remember those long, complicated names for the phobias because I played Lucy in my 5th grade production of A Charlie Brown Christmas. I remember the blue pinafore dress that was my costume, and I remember that it was kinda hard to pronounce and memorize the long words that marked the phobias from which Charlie Brown might well have suffered. Little did I know that as an adult, I myself would suffer from claustrophobia and aquaphobia. How ironic.
So the first time I heard the word agophagia I figured it must be a phobia. Nope, it’s a disorder. And I have it.
Agophagia is a form of the disorder pica, in which a person craves and is driven to ingest non-nutritious substances, usually because of a vitamin or mineral deficiency. People with pica tend to eat all kinds of weird things, from paint to dirt to chalk, and it can get really weird with people trying to eat things like batteries and feces. Gross. I must be pretty mild on the agophagia spectrum, because the idea of eating any of those things is not just weird but disgusting.
Yes, that’s right, ice.
Not even ice that’s surrounded by a good cocktail, either, but ice. Just plain ice.
I am addicted to ice.
Hello, my name is Nancy and I’m an ice-a-holic. I’m an agophagiac.
I didn’t think much of it at first, but just chomped away happily at the ice that was left in the bottom of my water glass, or the cubes that collected once my iced tea was gone. Sonic ice left me positively swooning, but I didn’t realize I had a problem until I was going through the drive-thru just for a cup of ice. Route 44 size, please. Feeling a bit self-conscious about my addiction, I did a little research and learned I am not alone. Sonic ice has a Facebook page with more than 218,000 fans.
Excessive ice chewing is a symptom of an iron deficiency. Guess what I have? Yep, an iron deficiency. I am definitely anemic. I’ve been on a prescription iron supplement, but once I started feeling so puny from the long-term antibiotic I had to take, I stopped taking the iron pills. Not a good idea.
My cutie-pie oncologist likes to blame my iron deficiency on the fact that I don’t eat meat, but the fact of the matter is that it’s yet another fallout from the nasty-ass infection I contracted after my bilateral mastectomy. I was vegetarian long before cancer dive-bombed my house, and never had a problem with anemia. Once the mycobacterium set up shop, though, the anemia gained a foothold, and the ice obsession began for real. That dadgum myco caused a whole lot of problems, of which the anemia was the least of my worries. Once diagnosed with that wretched, wily infection, one of the many sites I consulted for research stopped me dead in my tracks with this: “Disease typically chronic, progressive; rare spontaneous resolution has been reported.”
Like most addicts, I was the last one to notice that I had a problem. My girlfriends would giggle at me when my input on where to go to lunch after tennis revolved exclusively on which places had the best ice. Yes, I have them categorized much as my dear friend Amy Hoover knows which places serve the best iced tea. Some places use the same filter for the flavored and unflavored tea, ya know.
We have an ice machine outside, in the outdoor kitchen. It makes these groovy mushroom-shaped ice cubes that I adore. Not as much as Sonic ice, of course, but they’re pretty darn good. In the height of my addiction, I would consume 3 or 4 rounds of a 24-oz Tervis tumbler full of ice. Sometimes I wondered if the chomp-chomp-chomping sound was disruptive to those around me. Most times, though, I chomp-chomp-chomped away anyway, blissful in my puffy little cloud of addiction.
I’m not one bit ashamed to admit that I’ve been known to dig through the Hoshizaka to find the choicest bits of ice. Some cubes are more delectable than others; it’s a fact. And those are the very cubes most desirable to an ice-chomping addict.
However, I did start to suspect I had a problem when the only thing I wanted to pack for a long evening at the baseball field in 98-degree heat was ice. No water, just ice. And when the only thing I purchased at the baseball field concession stands was ice. Again, no water, just ice.
The pivotal moment in my addiction came a couple of weeks ago, when I was on my girls’ trip with my Duke friends. When it came time for the beverage service on the plane en route to the beach, I requested ice. No water, just ice. And more than one cup, please. Once at the beach, I realized the ice-cube trays in the freezer of our condo would not suffice, so I had to run out and get a cup of ice. Every day. I got smart and ordered 2 cups so I could put one in the condo’s freezer (alongside the worthless ice) for later. Each night at dinner, I asked for a to-go cup of ice. In the past I’ve been known to request a to-go cup, but I can assure you it wasn’t just ice. These were unchartered waters I had entered.
After becoming seriously worried that I was going to crack my teeth on all the ice I was consuming, I decided it was time to start taking that prescription iron supplement again. Within days, my ice obsession had waned. Weird.
While I still covet really good ice and will still pick through my ice machine for the best cubes, I’m not driven to chomp cup after cup of it. In fact, I realized this week that I’d gone 2 whole days without chomping any ice. Today while watching Macy’s tennis lesson, I got a cup of iced tea (extra ice, natch) and actually left most of the ice in the cup.
I’d like to think that my waning obsession with ice is a harbinger of my return to normal life, after a protracted cancer battle. I’ve had my share of complications on this “cancer journey,” and the idea of things turning around for real is pretty sweet. I relish the thought of being able to put that “cancer journey” on ice and getting on with my life.
Once upon a time, in a city far, far from Houston, there was a group of young-ish women. All had relocated from every corner of the country with young kids in tow to help fulfill their husbands’ dream of getting an MBA from a top-10 business school. None of the women knew anyone in the new city, and all were a long way from home. For two long years, without paychecks and luxuries like babysitters, the women bonded while the hubs crammed their brains with all things MBA-related. Once the menfolk had diplomas in hand, the group of women dispersed, to new homes in new corners of the country.One night before going separate ways, the women left the hubs and kids at home and went out for a nice dinner. There the plans were laid and a vow was made: let neither distance nor the rigors of child-rearing sever the bond created by hardship and the shared need for breaks from their preschoolers. The solution: come together for an annual girls’ trip, to reconnect and recharge.
The first trip was to San Francisco, then Sanibel Island in Florida. Next came Captiva Island, then Scottsdale. Park City was next, followed by Lake Tahoe. Every year was a different locale, but the theme was the same: reconnecting.
The women had gone their separate ways, and a few left the domestic scene to pursue careers in law and medicine. The others continued to toil on the homefront, trading preschool and playdates for elementary school and homework. The kids grew up, and a few new babies joined the fold. One thing remained the same, however: the women’s commitment to the annual trip.
Well, not really the end. Just the end of my little story.
It’s the eve of the 7th annual Duke girls’ trip, and my suitcase is packed. My boarding pass is printed. My Kindle is full of new books to be read uninterrupted by young children. My house is stocked for my peeps to exist in relative ease in my absence. I’m going, I’m really going.
After 7 years, you’d think that preparations for the trip would be somewhat by rote. Decide on the locale, find lodging, book flights, pack a bag, kiss the fam good-bye, and vamoose.
But not for me. See, last year I was ready for Tahoe. That trip was to have taken place 4 weeks post-mastectomy. As I described it this time last year, the trip was “my goal, a partial finish-line, and my sanity-saver since my diagnosis.” One of the first things I asked my superstar breast surgeon, Dr Dempsey, upon diagnosis, was if I’d still be able to take my girls’ trip. Tahoe with my Duke girls gave me something concrete to work toward in my recovery from surgery, from being diagnosed with cancer at age 40.
Instead of stocking the fridge and packing my bags this time last year, I was in the hospital, sick–really sick–with a nasty infection. I was admitted to the hospital unexpectedly when symptoms of the infection appeared out of nowhere. I literally had seen Dr S the day before the symptoms cropped up; fine one day, sick the next. The day I was hospitalized, I was still clinging to the hope that I’d be in & out of there quickly and still be able to go on my trip. Silly, silly girl. My mind was willing, but my body said “No can do.”
After countless IV bags full of different antibiotics, my fever kept spiking and I got worse instead of better. While the scarier bugs like anthrax were quickly ruled out, the specific infection remained elusive. My infectious disease doc told me that the cultures grow at their own pace, and the culturing is done old-school: in a Petrie dish in an incubator in the lab downstairs. I was confined to the hospital bed until the growth was complete, and no one knew when that would occur. The day before the Tahoe trip, I had to concede that I wasn’t going to make it. Rotten luck.
While it broke my heart and seriously injured my fighting spirit to tell my Duke girls I wouldn’t be joining them, untold hard times followed. Missing the trip was chump changed compared to what was to come. Looking back at my Caring Bridge journal entry for June 10th of last year yielded this:
“I should be on a plane right now, en route to Tahoe, but instead I’m in an ugly gown, sitting on scratchy sheets in an uncomfortable bed (most definitely not a Tempurpedic mattress). Looks like I’ll be here a while yet.”
I don’t recall this part, but it must have happened:
“They moved me across the hall last night to a new room. My new neighbor is an older Asian man who talks louder than anyone I know, and so do all of his relatives. In fact, I just got up my scratchy sheets & walked across the hall in my ugly gown to shut his door. Sheesh. This hospital has an entire floor for Asian patients, which is pretty cool and indicative of this huge city we live in, but I’m wondering why he’s not on that floor.”
Tonight, on the eve of the 7th annual Duke girls’ trip, there are no scratchy sheets and there is no ugly gown. There’s a not-so-youngish-anymore woman who’s had one helluva year, who’s ready to get on that plane and make up for lost time. SPI, here I come. Now that’s a happy ending!
Last summer was pretty bad for me and my family. It started innocently enough, with a bilateral mastectomy at age 40 on May 13th, and while I healed quickly and nicely from that, it all went downhill fast.
Just after my 41st birthday, I got a nasty post-surgery infection. No one saw it coming, and to say it took us all by surprise would be a gross understatement. The odds of contracting a nosocomial infection are not small, but my infection is somewhat rare, quite wily, and super slow to treat. In the scope of inconvenient infections, I won the lottery.
Last night was the first game of the All Star tournament for Payton’s team–something I missed entirely last summer. Being present last night to watch my boy do what he does best with his team of like-minded and uber-talented buddies was one of the simplest yet deepest thrills of all time. We take a lot of things for granted in this life of ours, and being able to sit on metal bleachers in the Texas heat in June to watch youth baseball is one of those things. I’ve sat through thousands of games for my little ball player, and hardly thought twice about it beyond the random, mundane thoughts associated with this endeavor: who are we “versing” (as our catcher, #10 Carl says)? Where is Payton in the line-up? Are we on the shady side of the field? Did I remember my stadium seat? How many times will Macy hit the concession stand? How many pieces of bubble gum does Pay have in his mouth at once?
Those are the thoughts that traverse my brain during a game, along with the usual baseball stuff: What’s the run rule in this tournament?; How did we fare against this team last time we met? If the ball hits the bat then hits the batter, he’s out, right? Rules and regulations course through my head as I follow the many games my boy has played.
Last night was different, though. As I was ready to walk out the door, our bestie Ed reminded me that I’ve come a long way since this time last year. Several of the parents on our team remarked at the park that it’s nice to have me there this year. A couple of the coaches said something about having missed me and my big mouth last summer; once a cheerleader, always a cheerleader.
I have come a long way since last summer, and watching my kid play ball is something to be savored, something to most definitely not take for granted. The metal bleachers, the roar of the crowd, the (gross) smell of hot dogs, the infield dirt blowing in my eyes…every bit of it is special to me on a whole ‘nother level.
Last night also marked the first time a newspaper reporter has covered the game, and seeing my boy’s name in print in association with his rock-star team’s blowout and his personal success is something I’ll be savoring for a while. Before cancer came into my life, I would have enjoyed reading the article, and likely would have forwarded it to our nearest & dearest, but this time, I’m carrying the feeling of that article along with me, inside my heart, in that little space where the gratitude lies.
I was flipping through my old Caring Bridge blog, and happened upon this entry, which seems even more prescient a year later. I wrote this on the morning of my mastectomy, before leaving for the hospital. No doubt I was antsy, preoccupied, and ready to get the show on the road that morning. It seems appropriate to reprint it today, in light of the theme of today’s blog.
I realize that when cancer comes into one’s life it disrupts everything and changes “the normal” forever. Dr Dempsey, my superstar breast surgeon, told me you no longer schedule cancer around your life, you schedule your life around your cancer. Life takes a backseat to war.
With cancer, I join a club that I never signed up for and for which I never wanted to become a member.
No matter, I now have a new normal. The new normal is all about taking care of what’s most important. We hear this all the time, but when you really put it into play in your own life, you know exactly what it means. For me, it means facing this beast head on and telling the bastard repeatedly that it doesn’t stand a chance. It means never once, not even once, considering that this cancer will win. It’s not even in the game.
It also means all the pithy stuff you hear about, like savor every day, make the most our of whatever you’ve got. That’s also true. For me it means truly embracing and enjoying my kids and my family, and letting my friends into my life — warts & all — on a whole new level. Y’all may well see my house a mess, which doesn’t happen much. You may see me in a grumpy mood (ok, you’ve seen that, esp on the tennis court!). You may see me just a teensy bit vulnerable, but only for a short time so don’t expect a repeat performance. No matter what, there is a new normal, and I’m all over it.
Texas is a baseball powerhouse in general, and our neck of the woods is no different. We’re right down the highway from Pearland, whose Boys of Summer blazed a trail from Texas to Williamsport, Pennsylvania, last summer to go nearly all the way in the prestigious Little League World Series.
This truckload of Pearland boys could be from any Little League in Texas; hopefully in a couple of years it will be my kid’s First Colony team. We watched every game last summer, cheering for those boys in blue and hoping they would prevail. We laughed at the way the media zeroed in on the Pearland moms and their blinged-out team shirts. I guess not everyone “does” baseball that way, but around here, it’s de rigueur for baseball moms to have glitzy shirts, often with their kid’s number emblazoned in rhinestones. Writer Ken Hoffman said the Pearland team “tore through Texas tournaments and blew into Williamsport with tape-measure home runs, speeding- ticket-worthy fastballs and bedazzling mothers that the Little League World Series won’t forget.”
All Stars is an exciting time. Grueling, too, with practice 7 days a week until the games start. We plan our vacations around the All Stars schedule, and schedule our daily activities around practice. The first tournament begins Tuesday, and I sure hope the Big Red Machine blows through District and Sectionals the way they did last summer, blazing a trail straight for the State Championship in Tyler, TX.
Since I missed pretty much all of it last summer, I didn’t realize that our district, Texas East Little League, “stretches from the Sabine River in the East to I-20 in the North to I-35 on the West to San Antonio and from there to the Gulf of Mexico and back to the Sabine River,” according to the Texas East website.
We’re that little strip of green in the middle, District 16. Texas is a big state, the second-biggest in the country in both population and area, and baseball is serious business around here. I don’t know how many Little Leagues there are in Texas, but considering that this great state is 773 miles wide and 790 miles long and populated by some 25 million people (thank you, Wikipedia), I’d say there are a bunch.
I’ve written a lot about having missed so many of Payton’s games last summer. Don’t worry, I’m not going to re-hash it today. Suffice to say that if it had just been the bilateral mastectomy in mid-May, I would have been in fine shape for the All Star summer schedule. But no, the post-mastectomy infection had to surface, and the resulting hospital stays and surgeries meant there would be no trip to Tyler for me. From the moment that infection reared its ugly head, my life became one complication after another, and I began to live the famous Winston Churchill quote of “If you’re going through hell, keep going.” Just do it without being able to watch your kid play the best baseball of his life. From mastectomy to infection, to nearly 30 days in the hospital, to multiple tissue excisions, to saying good-bye to the tissue expanders, to a shaky recovery involving all manner of antibiotics and home health, to slowly very slowly getting a semblance of a normal life back to finally getting around to reconstruction, to the long recovery process after The Big Dig. Quite a circuitous route I took, with very little baseball.
So this summer, I’m going to soak it all up. Every scorching minute of it. Since Texas is in a major, seemingly unending drought, we probably won’t have to worry about getting rained out, like we did a few times last summer. I’ll be in my blinged-out shirt, cheering hard for the boys in red, and reflecting back on how much I missed last summer at the ballpark.
I feel a weird dichotomy of emotion when a friend hears about a rare and hard-to-treat infection and thinks of me. On one hand, it’s nice that my friends are the sort of people who know what’s going on in my life (I guess being a blabbermouth and having a blog help). On the other hand, it’s a weird feeling to be the one associated with the rare and hard-to-treat infection.
No matter, the horse is out of the barn, and the fact of the matter is that I did indeed have a rare and hard-to-treat infection, I am a blabbermouth, I do have a blog, and my friends rock.
So when the news broke that several people in the wake of last month’s giant killer tornado in Joplin, Missouri, have contracted a rare and hard-to-treat infection, my name came to mind. Perhaps this provides a bit of perspective for me. On many levels. It reminds me that while I’ve been through a lot, I also have a lot for which to be grateful. Namely things like this: #1, I wasn’t involved in the devastation of that giant killer tornado. #2, my rare infection was hard to diagnose but not especially hard to treat; just a giant pain in the ass. #3, my rare infection wasn’t deadly, as the one in Joplin is. #4, my rare infection is gone, baby gone. And, because I like odd numbers in lists, #5, I’m done with the 267-day course of oral antibiotics needed to treat my rare, pain-in-the-ass infection. Oh, if only I got paid extra for using hyphens in my modifiers.
The giant tornado last month in Joplin stirred up a lot of soil in its destructive path, and it uncovered mucormycosis, a deadly fungus among us. Like most bacteria and fungus, mucormycosis is all around us but only affects people who are already limping along with weakened immunity. The proverbial kicking a man who’s already down. It seems to prey upon people with diabetes, leukemia, lymphoma, and AIDS as well as those who have had an organ transplant and those who engage in chronic steroid use (Alex Rodriguez, you better be careful).
I must digress here for a moment about the mighty A-Rod. We don’t like him much in our house (understatement of the year, right there). Not just because we are die-hard, hard-core Red Sox fans and he’s on that other AL East team. You know, the one that wears those gawd-awful pinstripes. Ick. Well, A-Rod, in our opinion, typifies everything that’s wrong with pro sports: the drugs, the attitude, the disdain for the very fans who provide him job security. Imagine our surprise and delight when we found this yesterday:
An A-Rod baseball card, chewed to bits by our little dog Pedey. I love it! It’s even funnier because that little dog is named for Payton’s favorite Red Sox player, Dustin Pedroia. The idea of Pedey going after A-Rod fills my heart with pride. I’ve said before that Pedey is not much like his namesake: he’s lazy and clumsy with a ball, but in this case, Pedroia would be proud of this little dog for pouncing on A-Rod and tearing him to bits!
Ok, back to the Joplin tornado and its unwelcome sidekick. The tornado was a big one. An EF-5 to be precise. The EF scale refers to the Enhanced Fujita scale, which was developed at the Wind Science and Engineering Research Center at Texas Tech University. Yay Red Raiders. I don’t know much about the tornado scale, being a bit more familiar in this neck of the woods with the Saffir-Simpson Hurricane scale, but a quick peek on Wikipedia tells me that an EF-5 tornado means the storm has winds in excess of 200 mph. A bad-ass, scary storm, to be precise.
The May 22nd tornado cut the city of Joplin roughly in half with an estimated 7-mile-long by 1-mile-wide swath. It moved slowly and stayed on the ground rather than touching down and moving back up. All of these factors combined equal untold destruction, a death toll of 151 people, and the unleashing of a nasty fungus.
Eight tornado victims have contracted the mucormycosis, although public health officials won’t make an official link between the fungus and the tornado. Four of the people who tested positive for mucormycosis have died. It’s a nasty bug that spreads fast and can invade the blood supply of its victims, who typically have injuries and secondary wound infections. Sound familiar? Ugh. The rush of feelings and memories this topic evokes roars in my head much like a tornado. I think my PTSD is showing.
The mycormycosis fungus is usually found in soil and wood and enters the body either through a puncture wound or when a person breathes in mold spores. The dirt or vegetation becomes embedded under the skin, and mold is actually found in the wounds of people who have this bug. In some cases, wounds that had been stitched up after the tornado had to be reopened to clean out the contamination. Again, sound familiar? The incubation period is a little shorter on the fungus compared to the mycobacterium, and hopefully the fungus presents itself faster than the myco; both times I’ve been tested for that damn myco it took 6 weeks to present itself.
People with weakened immune systems who come into contact with this fungus have a mortality rate as high as 90 percent. Yes, you read that right: 90 percent.
It’s strange how the spores of this fungus look almost artistic under the microscope, yet can wreak unimaginable havoc on the human body. Compare that to my bacteria’s photo and you can see how vastly different these bugs appear under the microscope and why I have enormous respect for my sweet infectious disease doc. You rock, Dr Grimes!
Because the mucormycosis fungus is so rare, medical research is limited, and treatment is simple but fraught with complications. Treating it sounds eerily familiar to me: confirm the bug, excise the affected tissue via surgery, and administer long-term and powerful antibiotics. Same plan I followed for the mycobacterium.
The Centers for Disease Control and Prevention said Friday that it is conducting tests to help investigate the infections, which are so uncommon that even the nation’s largest hospitals might see only one or two cases a year. In fact, Dr Ewe Schmidt, infectious disease specialist at Joplin’s Freeman Hospital, said that in 30 years of practice, he’s seen 2 cases of mucormycosis, both of which occurred in patients who had untreated diabetes.
“To my knowledge, a cluster like this [several cases of the fungus] has not been reported before,” said Dr. Benjamin Park, head of the CDC team that investigates fungal diseases. “This is a very rare fungus. And for people who do get the disease, it can be extremely severe.”
I’m so glad my rare infection wasn’t this deadly fungus. I’m even more glad that my rare infection is gone. And I’m so glad this guy and his dog survived the storm and the deadly fungus.
In addition to battling cancer and a nosocomial infection, I’ve also been busy battling plantar fasciitis.
The PF preceded the BC, and while not as nasty–and certainly not life-threatening in any way–it’s a major drag. My feet hurt all the time. All. The. Time. Maintaining my busy-body active lifestyle is pretty tricky with feet that hurt All. The. Time. It also severely limits my footwear. Cute shoes are pretty much out, as is going barefoot. I haven’t resorted to orthopedic shoes, but I’m not out of the woods yet, either. I have custom orthotics that go in my tennis shoes (don’t be jealous), and if I’m not wearing my tennies, I’m in my very dear Cole Haan flip flops or my not-s0-cute but cushy crocs flip flops. Thank goodness I don’t work in an office that requires closed-toe, pinchy shoes. I’d have to quit or get fired. Probably option #2.
I’ve seen a foot doctor, I’ve tried herbal remedies, I’ve taken copious amounts of RX anti-inflammatories, I’ve iced and elevated and slept in a splint. I had high hopes that while recovering from The Big Dig and taking several months off from tennis and most of my daily activities beyond laying in bed bemoaning my pitiful state would provide some respite from the foot problems that plague me. Alas, it did not. In fact, having foot pain while lying in bed doing none of the active things I want to do gave me more about which to bemoan.
My tennis buddy and dog-spoiler extraordinaire Christy had the answer to my problems. Dr Scott Kelly of the Airrosti Clinic. I need another doctor in my life about as much as Lindsey Lohan needs another bad-influence friend. The thought of adding yet another doctor my circle of docs did not appeal to me one little bit, but desperate times….
The Airrosti Clinic uses an intense treatment model that involves some serious hands-on time with the doc. And when I say hands-on, I mean he’s gonna put his hands on your tenderest injured spot and mangle the hell out of it. For real.
See, fascia is connective tissue that covers most of our body. It covers the different muscles, blood vessels and nerves “much like plastic wrap holds the contents of a sandwich together,” as it was explained to me. Problem with fascia is it’s everywhere, so your chance of injuring it is great, and it has little or no blood supply, so your chance of healing said injury is not great.
That’s where the laying of hands comes in. Dr Kelly gets his long, strong, mean hands into the damaged fascia and starts kneading it like bread. Then stretching it like taffy. Then punching it like a speed bag. All the while laughing maniacally at the moans, cries, screams and curse words coming from the patient. (Ok, he doesn’t really laugh maniacally but he does seem to enjoy his work very much, and when I showed him the line of bruises on my calf after his first hands-on treatment he smiled with obvious pride and said that’s his signature, and if he could sign his name in bruises, he would. That’s one autograph I don’t really need but apparently am gonna get. Repeatedly.)
When I met him last week, he grabbed ahold of my foot and said he could diagnose me in 30 seconds. I said I didn’t realize this was like speed-dating. He rolled his eyes, then told me that he could cure my PF in 3 treatments. I asked if he could also name that tune in one note. Why oh why don’t any of these doctors get my humor??
As skeptical as I was, I have to say that after the mangling, kneading, stretching, punching, and cussing, I could tell a difference. It took a while for the shock and trauma to subside, but once it did, I could tell that we were getting somewhere. The day after my first treatment, I got out of bed and walked barefoot on the tile without pain — something I hadn’t done in at least a year.
There’s homework, of course, that involves standing on a golf ball and rolling the ball all over the bottom of my feet, paying special attention to and lingering on the really tender spots. There are also a couple of exercises involving a 36-inch by 6-inch foam roller.
And then there’s the K tape.
Kinesio tape. In every color of the rainbow, according to the image on ktape.com. The website is pretty glowing about this product:
“It’s designed for Professional athletes, Olympians, and active people world-wide who take health & fitness seriously and who refuse to stop training, playing, or living life active and free. The design is minimalist, the results are magic.”
That’s me: I refuse to stop training playing, or living life active and free. Bring on the magic!
I’d had K tape before, when I was treating my PF myself, and again when I started seeing my lovely lymphedema specialist, Tammy. She’s a certified K tape master. She’s been using K tape on my post-mastectomy chest and now on my post-reconstruction belly. I’m a believer in the magic of K tape. As part of the scar-tissue-management on my 17-inch-long incision on my belly, Tammy puts a couple of strips of K tape and we wait for the magic happen.
So when Dr Kelly wanted to tape my feet after my first treatment and asked if I’d ever heard of it, I said as a matter of fact, I have some on my belly right now. We hadn’t been through the whole song & dance about the BC business; I was hoping to keep the BC beast out of the sports medicine arena. Well, the elephant was certainly in the room when I mentioned I had K tape on my belly. In for a penny, in for a pound, and I had to explain.
Yes, those are bruises just above the shorter piece of tape. If you’re fluent in the language of torture, you can probably tell that that’s how Dr K signs his name.
Dr Kelly seems to be a bit competitive, and wanted to tape me up real nice so that Tammy, the other K tape master, would approve. She did. And then she took it a step further. I guess she’s a bit competitive, too.
Instead of just using a couple of strips on the scar tissue on my belly, Tammy used a new technique she’d just learned at a K tape workshop. Could this be Turf Wars part deux?
I can’t wait to show this to Dr Kelly. The battle of the K tape is on!
I hope neither he nor Tammy sees this K tape image and gets any big ideas:
I’m ok with the crazy blue racing stripes on my legs & feet, and with the Frankenstein pink on my belly and over my new belly button, but I’m drawing the line at a pink ribbon made from K tape. No thanks!
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.