The American Cancer Society’s Couture for the Cause is fast approaching. As in tomorrow. I’m experiencing equal parts excitement and terror about modeling in the fashion show. Since this is my second time to model in the Couture, the excitement should be outweighing the terror, but alas it is not. Ask me tomorrow which feeling prevails. Hopefully it will be excitement. Sadly, all the fun and triumph surrounding this event are overshadowed by the unexpected death of our sweet dog Harry. It has been a long, hard day at our house, following a sleepless, sad night. I can only hope tomorrow is better. I’ll have a couple of my besties modeling with me this year, so it will be a great comfort to have them backstage and on the catwalk with me.
Getting ready for the show is pretty easy, assuming there are no big bumps in the road like the one we’re experiencing as we grieve for our dog. There’s the model survey to fill out (height, weight, hair & eye color, favorite designers, personal style, etc) and a full-length photo to submit. Then show up for a fitting of the outfits I’ll be wearing; show up for rehearsal with finger- and toenails painted red; and show up a few hours early for the event to have my face painted and my hair teased and tousled by a team of professionals. Oh, and procure the items on my “bring list,” which this year include a pair of brown platform sandals, a pair of black peep-toe platform heels as high as I can manage, and a strapless bra. Last year, I modeled between mastectomy and reconstruction, so there was no need whatsoever to bring a bra, strapless or otherwise.
In fact, last year I modeled having been sprung from the hospital just a few weeks before the big event. That nasty post-mastectomy infection damn near kept me from being able to participate in the most terrifying and most amazing experience I’ve ever had. This year, I’ll skip the hospital part and head straight for the show.
Last year, I had no idea what I was getting myself into but was coaxed and cajoled by some people I really love (that means you, Yvonne) and some people I’d never met but who assured me I’d be perfect, just perfect. All of the other models were cancer survivors, save a dozen or so real-life models to really showcase the outfits and lend an air of professional gravitas to the event. There were several other breast cancer survivors among the non-professional models, and they happened to be a lot farther along in the cancer “journey” than this fledgling model was. Every single one of them was done with reconstruction and didn’t bat an eye before showing me their results. Only at an ACS event would it seem perfectly normal to be closely examining a complete stranger’s breasts, but that’s how cancerchicks roll.
Needless to say, last year I was a teensy bit unsure about taking the stage and strutting my stuff on the catwalk among hordes of people who’d paid a lot of money to get into this gig. My body was a train wreck, my mind was somewhere between blown and trying to follow along, and my emotions were all over the place. I’d managed pretty well at that point to wrap my head around the cancer diagnosis, but dealing with the infection that threatened to be an unsolved medical mystery — not so much.
Hooray for being in a muuuuuuuuch better place this time around.
And hooray for actually liking the outfits I’m going to model on Saturday, and for hopefully not having a mink headwrap this time around.
While there is a lot of prep work that goes into pulling off a successful Couture show, thankfully most of it is done by others. I’m pretty sure there’s not another cause I’d be willing to model for, even though it gives me an excuse to buy new shoes. All this fashion show prep reminded me of a story Trevor shared with me a while back, about what the Victoria’s Secret models go through before their big fashion shows. Seems the Telegraph followed VS model Adriana Lima leading up to her fashion show. Lima is a bit more serious about prepping for her show than I am for mine:
She sees a nutritionist, who has measured her body’s muscle mass, fat ratio and levels of water retention. He prescribes protein shakes, vitamins and supplements to keep Lima’s energy levels up during this training period. Lima drinks a gallon of water a day. For nine days before the show, she will drink only protein shakes – ‘no solids.’ The concoctions include powdered egg. Two days before the show, she will abstain from the daily gallon of water, and ‘just drink normally.’ Then, 12 hours before the show, she will stop drinking entirely. “No liquids at all so you dry out, sometimes you can lose up to eight pounds just from that,” Lima says.
I can assure you that I will most certainly not stop drinking entirely before my show. If anything, I’ll probably be drinking even more than usual. I will most definitely raise a glass and send up a toast to my sweet dog who is no longer waiting to greet me after my big event.
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!
The mighty Red Raiders beat the Pearland All Stars 15-6 last night to clinch the Sectional title. Cue the music.
You know what this means, right? We’re going to Tyler.
Payton upheld all of his superstitions for this series: wearing the same pants for each game since the last win, no matter how filthy with infield dirt and grass stains; eating the same meal after each game won; following the same schedule during the day on game days. Macy and I joined in the festivities and put red streaks in our hair for the do-or-die game last night.
Our mojo definitely worked.
Here’s the local story about last night’s glorious game. Hope you’re smiling as widely as I am after you read it.
What a sweet, sweet victory. Readers of this blog may have heard about the utterly crummy season this girl had last year, and how yours truly missed every bit of the Raiders’ victories and trip to the State Championship.
What a drag. Words fail me as I try to express just how crappy it was to miss all this last summer. I’m not sure if it’s even possible. I have tried, but I know I’ve come up short.
All throughout the All Stars series so far, part of me kept thinking, “wouldn’t it be nice if the boys won District and Sectional, and got to Tyler, again, so that I could see it this time?” But another part reminded that part that it’s not about me. It’s about the 11 boys on this team.
Lucky for me, those 11 boys came through and I WILL get to see it this time. I am one happy baseball mama.
I woke up the night before last, after our team beat the Pearland team to stay alive, thinking about the next game. All day yesterday, the day of the winner-take-all-loser-goes-home game, my thoughts kept turning to baseball. Payton was uncharacteristically nervous yesterday, and had a hard time eating his pre-game meal. Walking up to the fields yesterday, we had to pass the Pearland fans in their bleachers to get to our bleachers. There were a lot of them, and they were fired up. But when we got to our bleachers, we saw a sea of red. Folks turned out in droves to support the Raiders. Members of the 12-year-old All Star team lined the outfield fence and had 3 big flags, each with a different letter: F, C, and A for “First Colony American.” Those flags were flying even before our boys stepped onto the field.
The Raiders looked a tad bit shaky as the Pearland team came up to bat. It was 3-0 them to start, but the boys in red looked strong and confident. I knew they were going to come through, and by the 3rd inning it was 9-4 us. While anything can happen in baseball, I began to really and truly realize that we were close to clinching the coveted trip to Tyler, and that I was going to be there for it.
I’ve said it before, but it bears repeating: watching my kid on the field is one of life’s greatest joys for me. He’s in his element, doing what he loves most in the entire world. He’s energized and engaged, he’s a gamer. Baseball is his life, and he makes the most of it. Every single game. Seeing #11 come up to bat thrills me; watching his discipline at the plate, appreciating the mechanics of his swing, and hearing him make contact with the ball all work together to fill me with happiness. Knowing that he’s experiencing success in his most beloved endeavor is parental bliss.
The game was fantastic, and last night’s victory is so, so sweet. I’m still savoring it today, exhausted though I may be from the late-night celebration. Seeing Payton on the field with his team after the game, awaiting their Sectional banner and pins from the District Commissioner was pretty great.
Betty Ford died yesterday at age 93. I’m so glad it wasn’t the breast cancer that killed her. As a young(ish) cancer-chick myself, it’s depressing as all get-out, not to mention terrifying, to learn of other women’s death from the disease we share. When this damned BC menace claimed Elizabeth Edwards, I was saddened and more than a little sick to my stomach at the stark realization that this disease does kill, young or old, healthy or not. The fact that this dreaded disease claims some 40,000 women a year brings into sharp focus the loss of maternal love that comes with each BC casualty. Knowing how much I miss my own sweet mama, the idea of the motherless Edwards children weighed heavily on my heart for weeks after her death.
I was a kid when Betty Ford was in the White House, so I don’t have much of a reference point for her. I do recall a grade-school chant of “Ford, Ford, he’s our man; Carter belongs in the garbage can” during Ford’s bid for re-election, but like the other kids on the playground, I chanted that with virtually no knowledge of politics. I’m sure I knew that Richard Nixon had been president, but was much too busy riding my bike and playing cul-de-sac games to realize that Gerald Ford became president in August of 1974, taking the place of a disgraced Richard Nixon. Now I know that Ford had been vice president less than a year before being “called up”; he’d been chosen to succeed Spiro Agnew, who also left office in disgrace amidst accusations of tax evasion.
I’m sure I didn’t realize that Betty Ford went from a “regular person” to wife of a Congress member fast. Really fast. She married Gerald Ford a month before he was elected to Congress; in fact, he was late to their wedding because he was campaigning up to the last minute. When JFK was president, the Fords became friends with the Kennedys and attended several parties at the White House. When JFK was assassinated in 1963, Betty Ford lingered at the burial and was the last woman at the gravesite. Two years later, Ford was elected minority leader of the House, and was away from home a lot. That’s when her heavy drinking began, and it continued for more than a decade before her family intervened. After she conquered her addiction to alcohol and pain pills, she founded the Betty Ford Center, which opened in October 1982. Since then, some 27,000 people have been treated there, including celebs like Elizabeth Taylor, Mary Tyler Moore, and Mickey Mantle.
I didn’t think much about Betty Ford once I was an adult, either, since her time in the spotlight had more or less passed and she endeavored to live as a private citizen. She apparently shunned the spotlight yet was returned to it in December 2006 when the country entered a 6-day mourning period upon the death of President Ford.
Even then, I didn’t think much about her, until I was diagnosed with breast cancer.
See, Betty Ford was a member of the pink ribbon sisterhood, and she blazed a trail that has significantly benefited subsequent generations of women. Women like me.
I was 6 years old when Mrs Ford was diagnosed with breast cancer in her right breast. She learned the bad news on September 26, 1974, according to the First Ladies’ biographies website. Two days later, she underwent a radical mastectomy. She’d been the First Lady for a matter of weeks when she was diagnosed. She faced the situation with the candor for which she’d become known: she announced her diagnosis and surgery publicly and even invited the media into her hospital room and posed for photos. Here she is, reading a get-well card signed by Congress.
I have no idea if she realized how much of a trailblazer she was. It’s probably just how she was, and to her, being outspoken and honest about her “cancer journey” is “just what you do.” I can relate to that. I hope Mrs Ford realized the impact she had on breast cancer awareness, which is safe to say was nonexistent in the early 1970s. I think she must have, based on this quote: “Before I was ever out of the hospital, there were, on television, women checking in to have mammograms,” Ford said at the Gerald Ford Museum in May 2001. “It was kind of like, if the first lady can have breast cancer, anyone can have breast cancer.”
Mrs Ford underwent two years of chemo, and in the fall of 1976 her doctors declared her cancer-free. Someone once asked her if she felt sorry for herself after losing her breasts. I absolutely adore her reply:
“No! Oh no — heavens no. I’ve heard women say they would rather lose their right arm, and I can’t even imagine it. It’s so stupid.”
She believed that women facing breast cancer should “go as quickly as possible and [get the surgery] done. Once it’s done, put it behind you and go on with your life.”
It’s safe to say that Mrs Ford paved the way for countless women–including yours truly– who were diagnosed after her. She removed the stigma from cancer, and breast cancer in particular. Before she piped up, there was no breast cancer awareness, no public discussion, and certainly no pink-ribbon culture. Barbara Brenner, former executive director at Breast Cancer Action said that Ford “showed people that you can live with cancer, that it’s not a death sentence.” The Komen organization has similar respect for Mrs Ford. Their official statement says “Betty Ford opened the door for millions of women when she candidly acknowledged her breast cancer diagnosis at a time when we didn’t talk about this disease and untold numbers of women suffered in silence. She showed the world that breast cancer could be faced with courage, with humor and with great dignity.”
It’s also safe to say that Mrs Ford would likely be quite pleased with the advances that have been made in breast cancer treatment. Ironically, in the same year she was diagnosed, Tamoxifen was showing itself to be a wonder drug in decreasing breast cancer recurrence. Now it’s become a household name in the BC community, and it’s a daily part of my life.
I think I would have really liked Betty Ford. Not just because we’re both members of the dreaded pink ribbon club, either. Because she was smart, sassy, outspoken, and real. She was a survivor, in every sense of the word. She was beloved as First Lady, and used her role as a platform to educate the American public on controversial subjects such as abortion, marijuana use, and the Equal Rights Amendment. She made it clear that she and President Ford would share a bed in the White House (something not previously publicized, apparently), and when someone asked her about sleeping with the president, she said “I do–every chance I get.”
She was perhaps unconventional as First Lady, and I like how she shook things up a bit. I love this story about her, told by White House photographer David Kennerly. On her last day as First Lady, Betty Ford walked by the empty Cabinet Room and told Kennerly, “You know, I’ve always wanted to dance on the cabinet room table.” Kennerly said, “Well, nobody’s around.” Opportunity knocked, and the plucky First Lady took advantage.
Kennerly says she took off her shoes, hopped up there, and struck a pose. “She’s a tiny woman, really, in very good shape. Very graceful, as a former dancer with the Martha Graham company. She got up there.”
Speculating on why Mrs Ford would be compelled to dance on the table, formally set with notepads and ashtrays (yes, ashtrays!), Kennerly realized that very few women have had a seat at that table. “I bet you could count them on one hand at that point, and knowing her support for the Equal Rights Amendment”—she endorsed it—”she was tap-dancing in the middle of this male bastion. She was storming the walls of the gray suits and gray-haired eminences.”
“It was a wonderful and whimsical ending,” Betty Ford wrote, “to that magical time I spent as first lady.”
R.I.P, Betty Ford.
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.
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.