ReduxPosted: November 9, 2011 Filed under: breast cancer | Tags: baseball, breast cancer, cancer battle, mastectomy, post-mastectomy, postaday2011 3 Comments
I was mindlessly folding clean laundry this morning and remembered something from the beginning of my cancer “journey” that was so funny it warrants an encore. From my Caring Bridge journal, the precursor to this little blog, on Friday, May 26, 2010. To set the scene: Macy and I were at the ballpark, walking from the parking lot to the field for one of Payton’s baseball games. I was just shy of the 2-week mark since my bilateral mastectomy, and this was one of my first outings that didn’t involve a doctor’s appointment. My chest was flat as a board, but I didn’t care because the cancer was gone.
As we walked up to the field, Macy said totally out of the blue: “Mom — did they do something to your chi-chis? Because they look all shrunken.” My mind was racing at this point because #1, I have NO idea where this is going, and #2, I thought I’d explained the surgery to my kids. I have yet to find a parenting book or video that guides me through moments like these. So I told her yes, they did do something to my chi-chis: they cut them off! That’s what the surgery was all about. Then she says, “Well, are they going to fix them? Because they’re not looking so good.”
From the mouths of babes.
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.
Ice, ice babyPosted: July 6, 2011 Filed under: breast cancer | Tags: A Charlie Brown Christmas, anemia, aquaphobia, cancer battle, claustrophobia, Ferrex, getting back to normal after cancer, Hoshizaka ice maker, ice chewing, iron supplement, Lucy Van Pelt, mycobacterium, pagophagia, pica, post-mastectomy, psychological effects of cancer, Sonic ice, South Padre Island, Tervis tumbler, vegetarians, vegetarians and anemia, young women with breast cancer 8 Comments
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.
No, for me the agophagia manifests in a powerful addiction to ice.
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.”
Guess that means my ice-chewing obsession would be around a while.
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.
The much-anticipated results of last night’s gamePosted: July 1, 2011 Filed under: baseball, breast cancer | Tags: All Stars, baseball, breast cancer, cancer battle, First Colony Little League, kids and cancer, Little League, moms with cancer, post-mastectomy, psychological effects of cancer, West University Little League 4 Comments
It was do-or-die for the mighty First Colony Red Raiders last night, and the cause of my nervous stomach all day yesterday. I would love to keep everyone in suspense about the outcome, and bury it at the bottom of a long, blabbedy-blab post, but that would be mean, and while I’m not above being mean, I do believe in the great karma wheel and want it to spin my way.
So, without further ado….RAIDERS WIN!!!
The stands were packed, the tension was high, and the mighty Raiders were pumped. Lots of non-Raider First Colony families turned out to support the boys in red. That’s one of the great things about our league (besides our utter dominance thus far in the All Star tournament, with the American League 9, 10, and 11-year-old teams winning district); we support each other. We hear comments from teams we pummel into the ground about our league having a “A” team and a “B” team, but it’s just not true. Nothing but sour grapes. Our league is divided into an American and a National league based on geography, pure & simple. Where a player lives in relation to the dividing line determines whether he (or she) is on an American or National team. No gerrymandering at FCLL.
And now, back to the game…
We had our starting pitcher on the mound, fresh after a day of rest and reset pitch count. The West U team did not. We faced the same pitcher who started for the boys in green on Monday, in which we delivered a 7-4 victory.
Our starting line-up remained unchanged: Max, Cody, Payton, Mark–ready to slug it out. Then comes Gus, Kyle, Camden, Taylor, and Carl. Cooper and Anthony are ready to assist at a moment’s notice. The bats were hot and the Raiders took an early 5-0 lead. No sloppy errors last night, as our boys delivered some first-class fielding and shut the West U team down seamlessly.
Final score: 12-2 in a run-rule (for the uninitiated, in this tournament, it’s considered a run-rule if one team leads by 10 runs after the 4th inning. What it means is the other team can’t catch up, so the game ends early. It’s rather demoralizing for the team who is behind, and exhilarating for the team with the big lead).
Celebration abounded as the Raiders and their parents whooped with joy at the victory. If the baseball gods had not smiled upon us, we’d be done with All Stars for the summer, and a certain gamer at my house would be in a foul mood for the rest of the summer. All Star families pretty much plan our summers around the idea of going all the way in the tournament, which means daily practice from the first week of June to the State Championship at the end of July. I am so very glad I don’t have the entire month of July to fill. It will be baseball, baseball, and more baseball — just the way we like it.
Apologies for the crummy photo quality — the iPhone is a wonderful device, but even with all the improvements the camera still doesn’t handle motion well. You get the gist, though, even with less-than-stellar pics.
Payton receiving his district pin from the league pooh-bah (in the black shorts).
Close-up of the district pin, which is quite an honor to wear. And a mighty fine profile, if I do say so myself!
Getting congrats from the West U team and coaches (who were very nice throughout, by the way, and that’s not always the case with opposing teams. A couple of their players cried in the field when they realized their run to State was ending, but the parents and coaches were quite civil).
The ceremonial dousing of the coach with the water cooler. Craig is a very good sport.
One of my favorite family shots — with a victorious boy under the scoreboard (which I cropped out because the glare off the board was heinous).
Payton being interviewed by a local sports reporter. And yes, of course I will link to the story when it comes out. See this, though, for a previous game’s story.
Proudly displaying the district banner, which will be on display at our home field, hopefully surrounded by that of the sectional tournament and finally, the State Championship!
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.
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!
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!
SummertimePosted: June 8, 2011 Filed under: breast cancer | Tags: Antibiotics, bilateral mastectomy, breast cancer, egg salad sandwich, hospital, Houston, Houston Museum District, infection, IV antibiotics, JP drains, kids, mastectomy, Methodist Hospital, mycobacterium, new boobs, nosocomial infection, plastic surgeon, plastic surgery, post-mastectomy, reconstruction, recovery, Sam Cooke, school's out for summer, survivor, tennis, Vera Bradley 10 Comments
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.
This summer, I’m going to relish being home instead of in a hospital, staring at this:
I’m going to delight in the fact that I don’t have any of these attached to me:
I’m going to do a little dance about the fact that my sling bag isn’t carrying any of those icky things that are no longer attached to me:
and that I no longer need a collection of these to catch the collection of gunk that accumulates in those things to which I’m not longer tethered:
I’m going to breathe a sigh of relief that I don’t have any of these stuck to me:
I’m going to offer up a special nod to the fates that I won’t be going here:
However unstructured this summer is, it’s gonna be great. Summertime and the living is easy.
National Cancer Survivors DayPosted: June 5, 2011 Filed under: Uncategorized | Tags: breast cancer, cancer battle, cancer diagnosis, Deborah Lattimore, funny cakes, funny t-shirts, Lifetime for Women, loss, mastectomy, National Cancer Survivors Day, NCSD, new boobs, post-mastectomy, reconstruction, recovery, smiley face, survivor, The SCAR Project 9 Comments
Well, we have Mother’s Day and Father’s Day, Grandparents’ Day, and even Bosses’ Day for pete’s sake, so why not Cancer Survivors Day? Makes perfect sense, as there are millions of us around the world. I do wonder, though, why there’s no apostrophe in the title. I double-checked it on the NCSD website and sure enough, no apostrophe.
It’s today, by the way — I feel like I should wear a shirt that says “Kiss Me, I Survived Cancer” but I’m not really the kissy type. I guess I could wear my “cupcakes” t-shirt, which I love, but then it seems like my “cupcakes” get the credit for kicking cancer to the curb when really, they were the culprit in the first place. Without them, I never would have had breast cancer, so I’m not giving them the credit for having survived it. I will wear it to the gym, though, because I love the look on people’s faces as they read it, then do a not-so-subtle double-take at my chest.
So what is National Cancer Survivors Day all about, anyway? Probably something a little more meaningful than wearing a snarky t-shirt and giggling to myself as the shockwaves from said shirt ripple through the gym. According to the NCSD website,
“National Cancer Survivors Day® is an annual, treasured worldwide Celebration of Life that is held in hundreds of communities throughout the United States, Canada, and other participating countries. Participants unite in a symbolic event to show the world that life after a cancer diagnosis can be meaningful and productive.”
Well, I’m certainly proud to be part of an annual, treasured worldwide celebration of life. Although I think I missed the parade. Considering how many people are affected by cancer, you’d think this day would get a bit more press. There’s probably a Lifetime for Women movie about it and I missed that too.
As usual, I have lots of questions about this annual, treasured worldwide celebration of life. Who qualifies as a survivor? And when does survivorship begin? What time was the parade? The National Cancer Survivors Day Foundation defines a “survivor” as anyone living with a history of cancer – from the moment of diagnosis through the remainder of life. I think it’s perhaps a bit more personal than that. I also think it’s more than just surviving cancer. I also survived a nasty infection and a nearly year-long regime of some pretty bad-ass antibiotics. I survived a complicated and intense reconstruction process, and I survived yet another long, hard recovery.
I considered myself a survivor as soon as my mastectomy was over. Surgically removing the tumors, and thereby the cancer, from my body was when my status changed from “regular person” to “survivor.” So for me, I became a survivor in the late afternoon of May 13, 2010. Although I certainly didn’t feel like much of a survivor at the time, bandaged and battered, stitched up and sore. Moving my body at all was a seemingly unattainable feat, and raising my arms high enough to put chap stick on my lips was definitely unattainable. I wasn’t able to slick my own lips for a day or so.
At the time, I had no concept of what a double mastectomy truly meant or looked like. So focused was I on ridding the cancer that I gave zero thought to the aftereffects of the surgery. Even now, in the hazy afterglow of just one year’s time, I struggle to remember exactly what I looked like after that first surgery. In fact, when Trevor gave me The SCAR Project book for my birthday a few days ago, I looked at the portraits of mastectomied women and asked, were my scars vertical or horizontal? For a brief moment, I couldn’t remember. (They were vertical, BTW.)
That’s why I’m so grateful for things like The SCAR Project and for women like Deborah Lattimore. Like the women who were photographed for The SCAR Project, Deborah Lattimore didn’t want to forget what she looked like after being mastectomied. This defines a survivor, IMHO: facing a shitty situation with not just courage but with moxie. Reading Deborah’s blog, I’m so impressed and moved and in awe of her take-no-prisoners attitude. I immediately felt a kinship with her as I read what she wrote about her post-cancer silhouette soon after her bilateral mastectomy: “my body is still ‘re-architecturalizing’ and will for the coming year. eventually my chest will be completely flat and the scars will be an even line. i really love my skinny small body!” Cheers to Deborah on this annual, treasured worldwide celebration of life. Wish I could tell her happy National Cancer Survivors Day to her face, and to bask in the supreme power of a strong, confident, self-assured woman who tells cancer to bugger off then shows the world the true face of a survivor. No padded bras, no prostheses here. Not that there’s anything wrong with padded bras or cutlets. How we face the world post-mastectomy is an immensely personal decision, and I in no way want to imply judgement on how any woman makes that decision. For me personally, I applaud women like Deborah who celebrate their mastectomied bodies and view them as a badge of honor. In our breast-obsessed culture, this is no easy thing.
So happy National Cancer Survivors to everyone. I’m thinking we should all have cake. What kind of cake is appropriate for NCSD? Something festive, for sure (you know how I love celebrations). This one is nice:
Love the colors, but the pink butterfly kinda creeps me out.
Nah, I’m not much of a cat person, and it’s not a birthday cake I’m after, although I do love the idea of the cat eating a fish-shaped cake. Maybe we survivors should eat a tumor-shaped cake. Ewww, gross. Never mind.
Ok, so something breast-cancer related:
Or not. Definitely not.
This one is pretty, and the lemon filling looks yummy:
This one is hilarious, although not appropriate for the annual, treasured worldwide celebration of life:
Maybe something from this bakery:
Surely they’d have just the right kind of cake for the annual, treasured worldwide celebration of life. Something like this, perhaps?