Back among the livingPosted: October 28, 2011 Filed under: Uncategorized | Tags: breast cancer, new boobs, plastic surgery, port-a-cath, postaday2011, Power Port, reconstruction, recovery, revision 9 Comments
I’m happy to report that today is a much better day than yesterday’s barf-o-rama. I lost count after the puking reached double digits, and admit to a moment of panic when I realized I hadn’t kept anything down all day. Not even a pretzel. I did learn that there is quite a hierarchy in grossness of what comes back up — some food items are way more disgusting than others when vomited up. And that’s all I’m going to say about that. By 9 pm I decided to throw in the towel and just go to bed. I won’t say I slept especially well, but I didn’t throw up any more so I’m calling it a victory.
The surgery was successful. Very successful. My doc achieved something I honestly didn’t think was possible — he sculpted, tucked, cut, and stitched to create exactly the look I was hoping for, but didn’t think would happen. The shape and symmetry are both very much improved, and instead of an elliptical uniboob, I now have two distinct and rounded boobs. My port is gone, and the ever-thoughtful doc even injected a little bit of fat into the port-removal site because sometimes after the device is removed, the skin collapses a bit to create a divot. But not for me, thanks to my forward-thinking surgeon. How nice is that?
I’m pretty battered and sore, and the port-removal site hurts worse than I expected, but I’m happy. I even told my doc this morning that as much as it pains me to admit it, he was right all along. He was right, I was wrong: he was indeed able to fix my messed-up chest, and his artistry certainly prevailed. I never expected the DIEP surgery to result in one-and-done results; I knew that revisions, plural, would be necessary. But I had fallen into the abyss of wondering if things would ever look right again. I can’t tell you how happy I am to report that I’m no longer in that abyss, and all is right in my world.
I’ve got to lay low and be very still for a while, as everything that was sucked out and relocated settles in. Thanks to everyone who checked on me, and thanks for all the prayers and good wishes sent from near and far.
Wisdom from the DLPosted: October 24, 2011 Filed under: breast cancer, Surgery, tennis | Tags: Dalai Lama, disabled list, Josh Beckett, Kevin Everett, Kim Clijsters, postaday2011, psychological effects of breast cancer, reconstruction, recovery, revision surgery, Sheryl Crow 8 Comments
I’ve been on the DL — disabled list — an awful lot since cancer came to town, and I don’t like it. I don’t like it, but I think I’ve gotten better at it. I’ll never be good at being a spectator in my own life, and I’ll never be one who enjoys the journey in my haste to get to the destination,but I have learned the value of time & place and that sometimes you have to be instead of do. I’ve learned to chant “It’s temporary” a thousand and one times to remind myself that while this is my life, it won’t always be like this.
Being on the DL has taught me a lot. Being forced to watch my tennis team while I waited for my body to heal enough to be able to play was one of the single best things I could have done for my game. If someone had suggested it to an able-bodied, healthy me, however, I would have laughed at the idea of sitting instead of playing. But watching helped me appreciate the game on a whole new level. I could focus on the strategies being employed, instead of being on high alert for the ball coming my way. I could study the nuances of each player’s serve, noticing how very different and personal a serve is. I noticed for the first time that everyone — even the best players on the court — makes bad shots. That was enlightening for an always-hard-on-herself player like me.
With my next revision surgery scheduled for the day after tomorrow, I prepare to go on the DL yet again. I played my last match of the season last week, and we played our usual Sunday morning 4 sets yesterday. I enjoyed both immensely, knowing that I won’t get to play again for several weeks. But this time, instead of being bummed about having to sit out again, I realized something. Something important. Like my cancer “journey,” being on the DL is temporary, and instead of being anxious and impatient to get back, I find myself contemplative and introspective about my game. It’s not about playing as much as humanly possible, it’s about playing the very best tennis possible for me.
This time while I’m recovering, I’ll be thinking about getting back to basics: swinging through the ball; having the discipline to not hit a bad toss; moving in on a high ball; shifting to cover the middle. I won’t be thinking about whether everyone on my team is improving while I’m standing still. I won’t be thinking about all I’m missing. I’ll be thinking about all I have. I’ll channel Sheryl Crow, who may not play tennis but has the wisdom to remind us: “It’s not having what you want, it’s wanting what you’ve got.”
I’ll never say that I want what I’ve got in terms of having been diagnosed with cancer at age 41, in the prime of my life AND my tennis game. But I can say that I’ll smoke ’em if I got ’em. I’ll make the best of my situation, regardless of how shitty it is and no matter how many times I go back on the DL. In addition to channeling Sheryl Crow, I’ll channel the wise & wonderful Dalai Lama and repeat a thousand and one times his mantra of “When we meet real tragedy in life, we can react in two ways–either by losing hope and falling into self-destructive habits, or by using the challenge to find our inner strength.”
I’ll be finding my inner strength.
CANCER SUCKSPosted: October 20, 2011 Filed under: breast cancer, cancer fatigue | Tags: cancer battle, cancer diagnosis, new boobs, postaday2011, psychological effects of breast cancer, reconstruction, recovery, the Big Dig 8 Comments
Cancer is so not fair.
It just sucks.
It’s such a bitch.
I hate it.
One badly timed comment; one errant remark.
That’s all it takes to go from normal to an emotional wreck. Suddenly I’m on the verge of tears–in front of other people, which is awful, and in front of one person I’d rather take a beating than cry in front of. Pride is a terrible burden sometimes.
Just one comment.
All was going according to plan at my pre-op appointment until one little utterance, slightly misinformed on the doctor’s part and hugely misinterpreted on mine, sent it all akimbo.
I was ready for this next revision. Six days and counting. Schedules rearranged, favors called in, sacrifices made…again.
I had signed up for this revision and was willing to go along with it quite voluntarily, even though it meant more pain and downtime and missing out on some important stuff. Well, important to me anyway: the annual Halloween tennis tournament at our club, which my runnin’ buddy and I won last year and hoped to recapture this year. The rest of the tennis season, for which I’ve only played 2 matches total for the entire season (and lost both, BTW, so suck it, everyone). Our regular Sunday morning match & beer-drinking with our buds Christy and John. Lots of tennis will not be played by me while I recover, yet again from yet another revision. The last-minute Halloween rituals, in which costumes are finalized and trick-or-treat dates are secured. All of this will be superseded by yet another recovery. The everyday, average tasks and duties of a regular life. All put on hold, in pursuit of a normalcy that seems ever elusive, just out of reach.
All I want is symmetry and improved shape to my newly created breasts.
Is that really so much to ask?
I’m well past the point of buying into the BS of “Bummer about the cancer but at least you get new boobs.” That dangling carrot didn’t quite pan out for me. Thanks to the ol’ post-mastectomy infection and a much-more-complicated-than-expected reconstruction known as The Big Dig, the prize at the finish line of my cancer “journey” isn’t much of a prize at all. It’s more a reminder that no matter how skilled the surgeon, no matter how many versions of revision I endure, my body is never going to be the same. It’s never going to look like it did before cancer shat all over my head at the ripe old age of 41.
I’m not stupid. I don’t expect my body to look like it did pre-cancer. I don’t expect my life to be carefree and manageable like it was pre-cancer. But I really didn’t think it would be this bad, this hard. I really didn’t think it would be so bloody difficult to deal with the reality of cancer day in and day out.
Sure wish someone would have warned me.
Because I bought into the “get through the scariest, worst experience ever and you’ll live happily ever after.” And silly me, I thought I was dealing with all the repercussions of the post-cancer life. I’ve faced the ugliness head-on. I’ve tucked my head and kept on truckin’. I’ve plastered a smile on my face and counted my blessings. I’ve poured out my feelings — good and bad — in an effort to “deal with it.” I’ve done the research and shown up for all the required appointments. I’ve endured more poking, prodding, and pinching. I’ve suffered through humiliations large and small. I’ve managed the pain and the crazy emotions. I’ve found myself smack-dab in the hell that is chemically-induced menopause and lived to tell about it. I’ve made a point to take my medicine, literally and figuratively, even when it tasted like poison and burned my insides to a crisp. I’ve learned to accept that schedules don’t matter to cancer, that there is no way to predict or prepare for the twists & turns that comprise this cancer “journey.”
I thought I was dealing with it all, and dealing with it quite well.
Thank you, google images.
All hail the Raiders!Posted: July 18, 2011 Filed under: baseball | Tags: baseball, cancer battle, cancer diagnosis, FCA All Stars, First Colony Little League, post-mastectomy, recovery, survivor 6 Comments
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.
Seeing the boys come together and play like champions was redemption for a crappy summer last year. That summer will go down in history as the worst one ever. This one will be remembered as the best.
No autographs, pleasePosted: July 11, 2011 Filed under: baseball, breast cancer, infection | Tags: baseball, breast cancer, cancer battle, First Colony Little League, hospital, infection, infectious disease, IV antibiotics, Little League All Stars, mastectomy, post-mastectomy, psychological effects of cancer, recovery, summer camp, Vancomycin 4 Comments
Today is a very good day, for 3 reasons, maybe more. #1: Macy started two weeks of Fine Arts camp, which she loves (and I’m rather fond of having a few hours to myself while she’s off doing fun projects that someone else cleans up, and by “someone else” I mean anyone but me). While she hasn’t gotten quite this messy in a while, she’s definitely still got it in ‘er.
#2: I did push-ups at the gym this morning. It’s been a long time since I’ve been able to do them, and there’s a bit of pride on the line since I was working out with my 12-year-old son. I wasn’t about to let him see me doing “girlie” push-ups with bent knees, so I tried the real thing, and while it didn’t feel great, I did it. Pre-cancer, pre-mastectomy, and pre-infection, I used to be able to do 50 push-ups like it was nothing, and while I’m not there yet, I’m getting closer.
#3: The article for which Payton and I were interviewed was published in our community newspaper. Corey the reporter was nice, and I think he’s a good writer. He has covered the district All Star games for all the ages, and he’s made the games come alive in his stories. P really enjoyed being interviewed; I like the drama of the article, especially the part in which I’m portrayed as “fighting for my life” (cue the dramatic music here).
It’s a good reminder to be careful what you say, too, because I joked with Corey about P having gotten his mad baseball skills from my side of the family. While it’s true–my dad’s baseball career started with PeeWee ball in 1948 and ended with him playing for the University of Tulsa–I was being smart-aleky, and Corey not only took it seriously but also included that in the article! I certainly don’t want to sound like one of “those” baseball moms. I think my kid is a good player who happens to have some natural athletic ability and a body built for taking some hard knocks. However, I’m under no illusion that he’s going to play ball for a living when he grows up, and his *$#& most definitely stinks.
While I can take or leave the publicity, reading the latest article did make me realize that a whole lot has changed since this time last year. And most of that change has been good. Really good.
This time last year, Payton’s All Star team was preparing for the sectional tournament, which they totally dominated, BTW. But I was fighting another battle against that damned nosocomial infection and was back in the hospital. Again. So after P’s team swept the sectional tourney, they were preparing to go to the State Championship in the lovely Tyler, TX. I remember thinking on that Monday, the day I was admitted to the hospital–again–that we’d get the infection under control, pump in some more vancomycin and I’d be on my way to Tyler.
Yes, I was that delusional.
Instead of the scenario playing out the way I’d envisioned, it went something like this: I was admitted on a Monday and didn’t get out until Thursday. An area that started as a red, streaky site on the mastectomied right chest wall had to be opened up, drained, excised, and packed with gauze. Repeatedly. The packing part was particularly brutal. See, there was a bunch of fluid inside my chest wall from the infection. Dr S cut a track–sans anesthesia, I recall–to open and elongate the drain hole, to let the fluid out. Once the track was there, though, it had to be packed with gauze to soak up all the nasty fluid. It wasn’t a quick process, because the hole and the track were small but had to be completely filled with gauze, for maximum soaking. Thus, a lot of shoving in an already sore, infected, and aggravated area was required. As was a lot of xanax. At one point, after Dr S shoved the gauze into the open wound, my blood pressure was 212/65. That’s a little high for me.
I survived 4 days of intense wound-packing and hard-core IV antibiotics. But just barely. I missed the entire State Championship experience, then put my kids on a plane for summer vacation, that I didn’t get to attend. I did manage to stay out of the hospital for 2 and a half weeks, but had IV antibiotics at home and a home health care nurse packing that wound. I was hoping to have turned a corner after all that (and more than once wondered what it would take to finally kick that infection) but was back in the hospital again the week before school started.
It was not a good summer, to say the least. This one has been much, much better. While the bar wasn’t exactly set very high after last summer, this one is pretty sweet.
A whole new ball gamePosted: June 30, 2011 Filed under: baseball, breast cancer | Tags: All Stars, baseball, cancer and young kids, cancer battle, First Colony Little League, hospital, infection, infectious disease, Ipad apps, Little League, moms with cancer, post-mastectomy, psychological effects of cancer, recovery, Salisbury Beach, West University Houston 9 Comments
I’m as nervous as a cat. On a hot tin roof.
Payton’s All Star team was one game away from being district champions last night, and they went down in flames. We’d already beaten the West University team but they came back with a vengeance (and their best pitcher). As a seasoned baseball mom who’s used to watching a confident & uber-talented team, I can usually get a read on the game and have a sense of how it’s going to end. Last night I didn’t have my usual “sixth sense” before the game, and even when our boys launched 2 homers in their first at-bat to take a 3-0 lead, I didn’t settle in with my usual feel-good feeling about the outcome.
My kid got hit by a pitch during his first at-bat. Not a wimpy pitch, either, but a smokin’ fastball. That fastball thumped his thigh, just above the knee, quite audibly. My mama- bear instinct kicked in and I was on my feet, wondering if my boy would crumple in a heap on top of home plate. Then my rational brain kicked in and reminded me that my boy is tough as nails and meaner than a red hog on the field. He takes pain like it’s a cool summer breeze, as if it’s a “woonty” on the shore of Salisbury Beach. His pain tolerance is incredible, and yes, he gets that from me. He’s the ideal football player — a coach’s dream — because he’d rather take a beating than admit he’s hurt. Most kids take a “test jog” down the right-field line after being hit by a pitch, to make sure they can still run without a hitch in their giddy-up. Not my kid. After being pounded, my kid just casually tossed his bat and trotted to first base. Not a wince or a whimper from him.
Here’s the after-effect. I expect it to become much more colorful in the coming days.
Payton’s teammate Gus responded to the bean-ball by hitting a homer off the pitcher who pegged my kid. Way to go, Gus!
Sadly, the First Colony bats weren’t as hot for the rest of the game, and we came up short. Errors in the field added insult to injury, and the boys in red got a long, stern talking-to from their coaches instead of a celebratory toast at the local pizza joint.
We face West U again tonight, and will likely bring a renewed vigor for victory. It’s winner take all tonight, so the stakes are high. Whichever team goes home tonight with a victory moves on to the sectional tournament, with hopes of progressing through that and onto the State Championship. Last year, that team was ours, and we’re all hoping for a repeat performance.
No one wants this more than me, since I missed every bit of it last summer. Thanks to a post-mastectomy infection, I was in the hospital instead of in the stands. The team honored me by wearing pink sweatbands throughout the summer, and Payton still wears his. We had to get a new pair, though, because the original pair was filthy. The kind of filth that repeated washings and soakings and pre-treating can’t remove. Lots of sweat but no tears last summer.
Apparently I’m a bit nervous , as I was awake at 4:20 a.m. thinking about tonight’s game. Someone asked me at the gym the other day if I’m one of “those baseball moms.” I wasn’t sure what she meant — the kind of baseball mom who attends all the games and cheers for everyone on the team? Or the kind of baseball mom who gripes at the coach and yells at the umpire about being unfair toward her baby? I’ve seen both kinds. I like to think of myself as the former, but I have been known to yell at an ump a time or two over a particularly egregious call. I am the kind of baseball mom who wears my kid’s jersey to the games, proudly displaying #11 on my back just as my kid does. I am the kind of baseball mom who decorates the car windows, as is tradition around here, so that everyone on the road and in the parking lot know that there’s an All Star on board.
I am the kind of baseball mom who feels deep pride at my kid being selected for All Stars. 20 players are chosen, then that group is whittled down to 11 or 12 for the traveling team. Lots of players — and lots of moms — would give their eye teeth to be a part of this team. Missing the games and the camaraderie last summer was hard. Really hard. I was able to follow along with the games via an iPad app that allows a user at the game to enter the pitch-by-pitch action so a user on the other end can follow the play-by-play. One of the moms asked me last night if it’s more nerve-wracking to follow along or to watch the game live. I said watching live is way more nerve-wracking. Sitting in a hospital bed staring at the iPad screen isn’t nearly as complete an experience as being in the stands, in the heat, with the roar of the crowd and the sounds of the game. I do have fond memories, though, of the nurses who were constantly in and out of my room getting involved and asking for updates on the game. And I distinctly remember forgoing pain medicine so I could be lucid enough to follow the game. This summer is a whole new ball game, for me.
Life’s a beach!Posted: June 24, 2011 Filed under: baseball, breast cancer | Tags: Beachside, cancer battle, girls' trip, Little League All Stars, recovery, South Padre Island, Zac Brown band 6 Comments
I’m on the 7th-floor balcony overlooking the beach at South Padre. The weather isn’t great, but the air is salty, the breeze is cool, the seagulls & pelicans are flying, and the sound of the ocean is magical. The most important part: I’M HERE! Cancer has no place on this balcony.
I’ve been here almost 24 hours and have yet to step on the beach, but no worries. Yesterday was consumed with airport transportation, procuring supplies, and waiting for the bridge to the island to re-open. While stuck in traffic, we noticed an older man riding a kitted-out scooter of sorts, bright yellow with “Granpa’s Hog” painted on the back. It has a lawnmower engine and he zips along pretty quickly. He had no traffic issues on the sidewalk. The best part: we saw him pull into the drive-through liquor store! Brilliant.
Editor’s update: Nancy texted me the pic and I’ve inserted above.
[I have a photo but can’t download it from my phone and upload it to my iPad. Advanced technology also has no place on this balcony; the photo can wait.]
Last night, Payton’s All Star team had another stunning win in game 2 of the District Tournament. The 18-3 game included a 3-run homer and some stellar plays by the boys in red. Next game, tomorrow night. I’ll be there in spirit, but like Zac Brown, I hope to have my toes in the water, ass in the sand, not a care in the world, a cold beer in my hand. Life is good today, indeed.
girls’ tripPosted: June 22, 2011 Filed under: breast cancer | Tags: breast cancer, cancer battle, cancer diagnosis, Fuqua School of Business, hospital, Houston, infection, infectious disease, IV antibiotics, MBAs, mycobacterium, older grad students, post-mastectomy, PTSD, recovery, South Padre Island, survivor, top-10 business school 8 Comments
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!
As if the tornado wasn’t bad enough…Posted: June 14, 2011 Filed under: breast cancer, infection | Tags: AL East, Alex Rogriguez, Antibiotics, Dustin Pedroia, Freeman Hospital, fungus, hurricane categories, infection, infectious disease, Jacoby Ellsbury, Joplin tornado, mucormycosis, mycobacterium, psychological effects of cancer, PTSD, recovery, Red Sox Nation, survivor, tornado EF-5 1 Comment
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!
As long as we’re digressing for baseball-related ramblings, I might as well post a pic of my boy-crush, Jacoby Ellsbury. It’s been a while, and I know my loyal readers have missed him. Here ya go.
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.
The battle of the K tapePosted: June 10, 2011 Filed under: breast cancer, tennis | Tags: Airrosti Clinic, breast cancer, cancer battle, cancer diagnosis, Cole Haan shoes, crocs flip flops, DIEP flap, Dr Scott Kelly, fascia, foam roller therapy, HOPE Lymphedema Treatment Center, infection, K tape, kinesio tape, Lindsey Lohan, lymphedema, lymphedema after breast cancer, mastectomy, mycobacterium, Name That Tune, physical therapy, plantar fasciitis, post-mastectomy, reconstruction, recovery, sports medicine, sports therapy, survivor, the Big Dig 12 Comments
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!