Blogging beach-side

Posted: August 2, 2011 | Author: | Filed under: breast cancer | Tags: , , | 3 Comments

My toes are in the sand as I write this. The waves are crashing as the tide comes in; seagulls are squawking as they scrounge for breakfast. A few fisherman have set up long-cast poles, hoping the early bird gets the worm. I mean fish.

I kept flight attendants Scott & Devin hopping on the way here. They did a very good job refreshing my beverage and they served me a lovely salad topped with grilled shrimp with fresh fruit on the side. The fresh-baked white-chocolate-macadamia-nut cookie went straight back to my kids who were slumming in coach. My new flight attendant friends were bummed that they’d run out of cookies before realizing my kids were back there. I watched Mardy Fish trump Ryan Harrison on the tennis channel in flight, started a new book, and accepted cocktails from the dynamic duo. There was a slight miscommunication though, and Scott offered me one more as we started our descent, not knowing that Devin had already locked up the bar. I teased them enough that they sent me off the plane with a bottle of wine, wrapped festively in a cloth napkin. We drank it on the train and toasted my new friends.

Yesterday was one of the best beach days ever. Today looks like a repeat performance. I’ve had a cup of coffee and made a quick run across the state line to the nearest store to procure a few supplies we didn’t pack because we carried our luggage on. We had a quick turn-around between landing at Logan and catching the train to Newburyport. Despite my sage warnings yesterday, my kids got sunburned–Macy on her arms, Payton on his legs. My little darlings are accustomed to the aerosol sunblock, but were left to their own devices with the old-fashioned, rub-on kind. There’s nothing fun about getting scorched on the first day at the beach.

Our lovely hostess treated us with homemade lobster pie upon our arrival, after bubbly on the beach. Both were as decadent as they sound. Acutely aware of all that i missed last year, I’m savoring every crumb, every drop. Soaking up the sun, relishing the sound of the ocean and the feel of the cool breeze. Cancer and its myriad troubles are a long way away.

Vaca starts today!

Posted: July 31, 2011 | Author: | Filed under: breast cancer | Tags: , , , , , | 8 Comments

This is it. Today’s the day. I’m leaving the heat & humidity of Houston behind for 2 weeks of balmy-but-not-hot weather and cool ocean breezes. My right-brained son pointed out a few days ago that I haven’t been to Salisbury Beach in 2 years. Duh. Of course I knew I missed the trip last year — was painfully aware in fact — but hadn’t thought about it in those terms. So it goes without saying that I have a lot of making up to do. A serious re-do is in order, and it starts today.

We’ve been making this trip for a lot of years. My kids looked like this when we started:

We were much more bogged down with bulging carry-on bags to entertain these little guys on the 4-hour flight. Lugging diapers and endless snacks, as well as car seats, across the country while fretting about how to keep them still during the travel time.

Nowadays they’re much simpler (and thankfully out of diapers). They’re entertained by their iTouch or iPhone and can even load their own devices with songs and TV shows from iTunes. Now that’s progress!

We’ve been talking for days about hitting all our favorite haunts: Markey’s lobster pound, Dunlap’s ice cream shop, Willie’s candy store, the arcade, and of course Blink’s for fried dough. The order is always the same at Blink’s — chocolate frosting with chocolate jimmies. I try to talk the kids into sharing a piece every year, and every year they insist they need their own. Because fried dough hot out of the fryer and covered in frosting and sprinkles is a tradition at the beach, they win that debate. They’ll burn off the junk-food calories chasing waves in the ocean. The water’s a bit cool for this Texas girl to frolic, but it will make me happy to watch my kids battle the waves in giant tubes.

My heart is full as I gather my last-minute things and zip my suitcase. This time last year, I was learning the ins & outs of home health care and lugging a wound vacuum around while my kids flew across the country without me. I was learning just how insidious cancer is and the many ways in which it disrupts one’s life. I had wrapped my head around my diagnosis, endured endless testing, made heart-wrenching decisions, and faced a nasty surgery and long recovery. All of that was bad, no doubt, but the worst was putting my kids on a plane to go to our beloved beach without me. This time last year I wrote about it on my Caring Bridge page:

“The kids are excited, and they’ll have a fantastic time. I can heal in peace for 12 days with no one to think about but myself. That’s bizarre to me. After spending the last decade-plus taking care of my kids every day, minus a few days every year for a girls’ weekend, that’s kind of weird. If I miss them too much, I can always flip on SportsCenter of Disney Channel and leave a trail of dirty clothes around.”

No need to do that this year — I’ll be right there with ’em. Macy reminded me that we’ll be watching the sunset on the beach tonight. I might even get myself a piece of fried dough.

I’m definitely taking the advice of a very wise friend, who said “Drink cocktails. Eat lobster. Love life.”

Good fat

Posted: July 28, 2011 | Author: | Filed under: breast cancer, Surgery | Tags: , , , , | 5 Comments

Another thing to add to the long list of things to love about me: I have “good fat.”

googleimages.com

So sayeth Dr Spiegel, who recognized the high quality of my fat at first glance. So skilled in assessing fat is she that a physical exam wasn’t necessary. No need to grab the fat; she could tell the caliber of my chunky-monkey-ness just by looking.

That’s good, because I need that fat for my upcoming revision. While the Drs S did an outstanding, better-than-expected job at reconstructing my sunken, mastectomied chest, there are a few little tweaks needed before I am “done.”

One big lesson about breast cancer and reconstruction: you’re never really done, and it’s never really over.

Much like the plight of an at-home mom in a house full of busy, messy kids, there’s always something else that needs to be done. In this case, rather than errands, laundry, and getting people to & from activities, what needs to be done is correcting asymmetry, changing shape from oblong to rounded, and filling out a few collapsed areas. The best way to do this? Suck out some of that good fat from my hips and inject it up top. 

Remember the “dog ears” left on my hips after closing my 17-inch belly incision during reconstruction? Those pesky globs of fat have tormented me the last 4 months, since surgery. They’ve gotten a bit smaller as I’ve counted calories and gotten back into the gym and onto the tennis court, but they’re still there. At last they will serve their purpose.

I wanted to get Dr Spiegel’s opinion on the best way to go about this before I went under the knife with Dr S. Since the 2 Drs S worked so well together on The Big Dig, I coveted her advice on the revision. I also knew I’d get very clear answers to my questions, as she is very good at communicating and explaining options.

She had the same ideas as Dr S for how to handle this revision. That’s all the confirmation I need. While I’m not looking forward to it (more anesthesia, pain, and downtime), it’s one more step closer to being done. Or as done as a cancer patient ever gets.

Here’s the plan: I go on vacation to Salisbury Beach for 2 weeks, to forget all about the trials & tribulations of the last year. I soak up every second of my favorite beach in an effort to make up for missing it last year. I say yes to every adult beverage offered me, regardless of time of day, food consumed, or number of beverages preceding. I revel in the balmy weather, listen to the sound of the ocean, and relish my friends’ company. I eat lobster in some form each day. I savor the traditions this trip provides my family. I thank my lucky stars that I’m present for this tradition.

Then I come home–tanned, relaxed, refreshed & slightly worried about the state of my liver–and have 2 days before my revision procedure.

I know, I know — having fat sucked out of an area you don’t want it and relocated into an area you do want it sounds like a dream come true. In theory, anyway. I would find it a lot more dreamy if it didn’t involve tools that look like this

and this

and this

Thank you, Google images, for helping me visualize the method of extraction. I’ve been looking forward to bidding adieu to the dog ears since they became a part of my body and to finally having some symmetry to my newly constructed chest, but like everything in this “cancer journey,” it comes at a cost.

It’s all over except the crying

Posted: July 25, 2011 | Author: | Filed under: baseball, breast cancer | 3 Comments

It pains me to report such bad news. Real pain, and seriously bad news.

I’m guessing you can see where this is going.

The mighty Red Raiders went down in flames last night inthe State Championship in the great garden spot of Tyler Texas. I’ve been so busy sweating my fool head off in the 100-plus-degree heat and swilling beer after the games that I haven’t had much time to comment, and the news has not been fit to print. Yes, I know it’s a huge honor to even make it this far. Yes, I know the boys have a lot to be proud of. Yes, I know there are lots of teams in our district who would have happily come to Tyler, even if it meant going home with a loss. I get it. But I’m still disappointed.

I’m proud, but disappointed.

This team did make history in our neck of the woods. These boys were the first team in First Colony’s 25-year history to go to State two years in a row. That’s big. We have a competitive league, full of parents with the time and money to provide the kids with private lessons and coaching. We have several former pro ball players who coach and whose kids have grown up in the league. We have a whole lot of smart and dedicated parents serving on the league board, managing teams, running the fields, and cheering from the stands. So for this group of 11 boys to achieve such a back-to-back feat is worthy of notice.

But I’m still disappointed.

We dedicate our summer to baseball around here. We plan our vacation to Salisbury Beach around the potential of playing–and staying–in Tyler. For the duration of the tournament. But alas, this wasn’t our year. It was a great run, but it ended too soon. The same 4 teams from last year faced off this year, and our boys just didn’t have it. Scoring just 2 runs total in 2 games doesn’t cut it. Last night we were scoreless going into the 6th inning. Literally 0 to 0. We were starting to think about the possibility of extra innings, and wondering how much longer we would swelter in the vicious Tyler sun. Unfortunately, their bats came alive at the end of the game and ours didn’t. Landing in the losers’ bracket right off the bat is foreign territory for us. None of us–players or parents–likes it, but there are lessons to be learned from loss. Like how to be a good sport when what you really want to do is cry or cuss. Like holding your head high in the midst of crushing disappointment. Like the self-control required when facing frustration. Like the strength of character needed to dig deep and battle hard. 

Sounds a lot like the lessons I’ve learned this past year in facing cancer. 

The best team doesn’t always win in baseball. It’s a cruel fact. In baseball, and in life.

Tyler, day 1

Posted: July 23, 2011 | Author: | Filed under: baseball, breast cancer | Tags: , , , , , | 2 Comments

We arrived in Tyler safe & sound yesterday, just in time to have dinner with a couple of families from the team at Chili’s. Payton & I had lunch at Chili’s while we waited for Trevor to wrap up some business before hitting the road, so it was deja vu at dinner. I did not get my baby back ribs, as I eschew all foods from the mammalian category, but I did rock out on some guacamole and a cold Dos Equis.

Dawn broke clear, bright, and hot on Tyler, TX today–it’s currently 103 degrees. Gotta love July in the great state of Texas. Certain members of my family laughed at me for toting my Keurig coffeemaker all the way to Tyler, but as we enjoyed robust & delicious coffee in the room first thing this morning, there were no snickers from the peanut gallery. I have been pondering today the beauty that lies in having kids old enough to mainly fend for themselves. As Payton roamed the hotel with teammates, room key & iPhone safely tucked in his pocket, Macy and her two darling friends Mallory and Maddy swam in the pool with minimal supervision. I read my book while inhaling copious amount of chlorine fumes from the indoor pool and recollected on the events at this time last year.

I was not in the garden spot of Tyler TX in this great state’s piney woods, festively observing my firstborn’s maiden voyage of State Championship baseball. I was not languidly enjoying the comfy offerings of the Tyler Marriott, nor partaking of the fellowship of this fine team’s families. No, I was stuck in a hospital bed at the Methodist Sugar Land Hospital, enduring another round of battles vs the wily and energetic post-mastectomy infection. I was unlucky in that sense, but very fortunate indeed in that I had the intrepid Dr S caring for me all weekend, and my partner in crime Amy Hoover looking after me in the hospital. At this time last year, I was recovering from a nasty procedure to excise the infected tissue from my hollowed-out chest wall, along with an epic battle vs the morphine and barfiness that accompanied my formerly favorite pain reliever.

It was the beginning of a long and ugly stretch of history involving a lot of narcotics, a wound vacuum, and seemingly endless struggle. It did not involve watching my favorite boy do that thing he does best alongside the upper echelon of 10-year-old All Star baseball teams.

This time last year, I was going through a particularly challenging version of hell. Receiving a cancer diagnosis at the tender age of 40, with two children aged 8 and 10 and long memories of losing my sweet mama to the big C, was bad. Really bad. But I confronted the beast and did all the right things–schedule and endure all the testing, make the hard decisions, go through the surgery, and face the long, painful recovery. Being slapped with a nosocomial infection added insult to injury, for sure. Being slapped with a difficult-to-diagnose nosocomial infection was even worse, but missing Payton’s trip to the State Championship was the worst part of all.

All of that is behind us now, and I am here. “Here” in the sense of being present, and “here” in the sense of soaking up every second of the experience. Last year I was a distant spectator, following along with the games in a narcotic-induced haze. I was a long way from present, physically and psychologically. This year is a whole new ball game. I’m here, and I’m present in every sense of the word. It’s hot, it’s crowded, and there’s a lot of pressure on our team, but it’s all good. Last year the stakes were high: the boys wore their pink wrist bands in honor of me, and they wanted to win it all. Coming home with 2nd place was an honor to most but considered a failure to my kid. Seeing him walk through the door of my hospital room the day after they lost the championship was sweet for him and for me, but I could feel the weight of his disappointment. He wanted to bring the title home, and storm the hospital bathed in pride. Last summer was hard for all of us. Games were played, battles were fought, and lessons were learned.

This summer it’s all good.

Victory after tragedy

Posted: July 19, 2011 | Author: | Filed under: breast cancer, kids | Tags: , , , , , , , , | 6 Comments

I wanted to post something about British Open champion Darren Clarke on Sunday, when he won the tournament, but have been consumed with tournaments and champions in a different sport, so here I am.

I’m not much for watching golf on TV. It’s slow and to me, boring. I consider it an activity, not a sport, and I say that knowing full well I’m torquing a lot of golf fans by doing so. I don’t quibble with the skill involved, but to me if you don’t get sweaty & out of breath doing it, it’s not a sport.

Anyhoo, back to Clarke.

I didn’t pay him or any of the golfers one lick of attention over the weekend. If Freddy Couples isn’t playing, I can’t be bothered. 

Then Trevor told me that Clarke’s wife, Heather, had died from breast cancer. That got my attention. Heather Clarke died in 2006 at age 39 after a recurrence. Her boys were 8 and 5 years old when she died. 

That is my biggest nightmare. And I imagine it’s the biggest nightmare of every mother of young kids who is diagnosed with this damned disease. Recurrence is enough of a nightmare, but dying from BC with young kids at home is even more terrifying. Being diagnosed with cancer at a young age, with young kids still to raise, is hard enough. Worrying about and fearing recurrence adds to the terror that comprises this disease. I don’t care that my odds of avoiding recurrence are good, or that I’m doing all the right things to ensure that this cancer does not return. I was doing all the right things before cancer became the pile of poo in my path, and it still infiltrated my life. So while the numbers and statistics are in my favor, the fear is always in my heart.

During her battles with BC, Darren said of his wife, “My wife is a battler. She fights it so hard and I have so much admiration for her.” He too is a battler, having played in the Davis Cup 6 weeks after Heather died, and winning all 3 of his matches.

At Heather’s funeral on August 17, 2006, the minister remembered Heather as “an unpretentious, lovely girl, who was full of character” and said “that day in March 1996 when you married her here in this church, Darren, you really won the greatest trophy of your life.” The reverend made everyone smile by recalling how she loved to shop while her husband played golf. My kind of girl.

After accepting the British Open trophy on Sunday, Darren Clarke said, “It’s been a long and bumpy road, I have had some good things happen to me and some bad things, but I’ve had so much support from an awful lot of people.” He credited Heather with watching him “from up above” and said, “In terms of what’s going through my heart there’s obviously somebody who is watching down from up above. I know she’d be very proud of me. She’d probably be saying ‘I told you so’. But I think she’d be more proud of my two boys. It’s been a long journey.”

He seems like a really cool guy.  He likes to lift a pint or two, and he’s been known to enjoy a cigar after a round of golf. After winning on Sunday, he partied all night, and he started that party during the post-match press conference by drinking a pint of Guinness while being interviewed. I really like this guy. Being a good father is important to him (take a lesson, Tiger). In an interview with Golf Magazine, he was asked how long it took to return to normal after Heather died. His reply is so honest. Instead of platitudes and false courage, he says:

“Well, what’s normal? It’s still not normal. It can’t be normal when you haven’t got the mother of your kids and my wife at home. I was starting to get back to an even keel probably at the start of this year [2009]. It was a long time. There were some dark moments. God knows things have been difficult for me, but it has been even harder for the boys. It has been tough having to deal with things. And tough being thrown in to being 100 percent responsible for my two kids. I had to start making the decisions for everything for the boys. Making the day-to-day decisions for the boys has been a shock to the system. You don’t realize how much wives have got to do until you’ve got to do it yourself.”

When asked in the same interview if he felt angry about her death, he again answered honestly: “Probably. I’m sure anybody would. You know, Why Heather? Why? Why? Why? There are no answers to that.”

No, there are no answers to that.

Life is so uncertain

Posted: July 12, 2011 | Author: | Filed under: breast cancer, tennis | Tags: , , , , , , , , , , , | 6 Comments

Lyle Lovett said it best:

Lyle P

“Look,
I understand too little too late
I realize there are things you say and do
You can never take back
But what would you be if you didn’t even try
You have to try
So after a lot of thought
I’d like to reconsider
Please
If it’s not too late
Make it a cheeseburger.”

I don’t eat cheeseburgers, or any burgers, but I love Lyle Lovett, and his clever and playful lyrics have been running through my head all day as I contemplated my latest visit to my cutie-pie oncologist. Last time I saw him, we discussed whether I need yet another surgery, to remove my ovaries. See, those little suckers pump out estrogen, and estrogen happens to be fuel for the type I cancer I had. So the theory is this: cut off the fuel, starve the cancer and ensure it has nothing with which to reconvene. Since I wasn’t physically well enough to undergo the oophorectomy because of the post-mastectomy infection, we put that surgery on hold, but in the meantime I began getting a shot of Lupron once every 3 months. Lupron essentially does the same thing as removing the ovaries, which is to shut off the supply of estrogen.

I thought the plan was set: continue the Lupron shots until I was deemed well enough to undergo the oophorectomy, which would likely be in the fall of this year. Get the kids back to school, recover from the August 17th reconstruction revision, and get rid of the ovaries. I like having a plan. I like sticking with a plan. I’m not a fan of changing the plan.

Today, Dr Cutie Pie said he didn’t think I needed to keep getting the Lupron. I’ve been getting the injections for nearly a year now, so even though I was scheduled to get one today and was planning on getting one today, he thought I was done. The plan had changed.

Granted, I had complained to him about the major side-effects of Lupron: hot flashes and sweating like a pig in heat. It’s summertime in Houston. Not just regular old hot-as-Hell summertime in Houston, either, but record heat and record drought summertime. I can tell you with 100 percent certainty that hot flashes and Houston summertime are a wretched combination.

Do I think the hot flashes and sweating like a pig in heat are sound enough reasons to discontinue the current path of hormonal suppression? No. I haven’t murdered anyone (yet). Dr CP said there’s really not that much difference between hormonal suppression from Tamoxifen alone and suppression supplemented even further with Lupron. A year of Lupron injections seemed to be enough, in his opinion. The daily Tamoxifen will go on, though.

Disclaimer: I did not beg, whine, or persuade him to make that decision. Not like I did last summer with Dr S when trying to sway him to release me from yet another hospitalization or disconnect me from the dreaded wound vacuum, Sucky. I did not employ any such tactic with Dr CP today. He came up with the idea to cease & desist all on his own.

He also said maybe that oophorectomy isn’t necessary, either. While I’m completely in favor of eschewing yet another surgery, my gut instinct tells me to rip those ovaries out (gently, though, and with lots & lots of morphine).

Life is so uncertain. What’s the right choice? How does one make such a decision? Stop the Lupron or not? Pursue the oophorectomy or count my blessings that I won’t need another surgery? Where’s the Great and Powerful Oz to tell me what to do?

That’s the problem with cancer. One of the many problems. Big-ass decisions need to be made; life-and-death decisions. And while there’s research aplenty and resources available, there’s no clear answer. I like clear answers. And unchanged plans. Neither of which prevails in one’s “cancer journey.”

Nonetheless, we moseyed along through the rest of the check-up with the usual and quite popular assertions from Dr CP that my cancer is not coming back. I like that part. He says this at every visit, and I really like hearing it. He told me that my reconstructed chest looks fantastic, and I really like hearing that (even though I think he’s shining me on, because there is definitely some tweaking and fine-tuning that needs to be done). I still like that he says it, though, even if he’s shining me on.

We chitty-chatted about his new baby, my tennis game, and other pleasantries. He said he’s started playing tennis and is thinking about taking some lessons. When he told me he plays once a week, I told him he’ll never get better that way; it’s not often enough. He got all puffed up and said it’s enough for him because there’s such a thing as talent.

Oh. Well.

In the immortal words of Steve Martin, “Well, excuuuuuuuuuuuuse me!”

He even strutted down the hallway a bit, then turned to say something about how he’ll be ready in about 6 months to kick my butt on the tennis court. I said, maybe in about 60 years.

How on Earth do I manage to find such cocky doctors?????

We parted ways, him to daydream about beating me in tennis while I headed to the infusion room to get my port flushed. For the last time. Ever.

Yipee! That makes me very, very happy. I’ll get my port removed next month, when Dr S does my reconstruction revision. Can’t wait to bid adieu to that little guy (the port, not Dr S).

But while in the infusion room, I started to second-guess the decision to stop taking the Lupron shots. It didn’t feel right to me. The instant-gratification-girl inside me said, “Hell, yes, let’s forego the shot — that sucker hurts and leaves me bruised for weeks.” But the more-measured-approach-taking girl inside me said something doesn’t seem right with this decision. What’s the harm in continuing the Lupron therapy (besides the obvious, 20-gauge needle harm, that is, and the hot flashes and sweating like a pig in heat harm)?

Dr CP walked by a few minutes later, as I was discussing the pro’s and con’s with my patient advocate extraordinaire, Amy Hoover, and we grabbed him to say I’m not sure about the Lupron decision. He listened intently as we reviewed the pro’s and con’s and said there’s no harm in getting the shot. So I got the shot. Still not sure if it’s the right choice. No idea if it’s the right decision. My gut says yes, and my gut usually is right. However, the fact that it took 3–count ’em–3 tries to get the shot makes me wonder. The needle went in, but the Lupron wouldn’t go. Ow! 3 needle sticks with a 20-gauge needle could easily make a girl question her decision to question her decision. But, as Lyle Lovett says, “Life is so uncertain.”

No autographs, please

Posted: July 11, 2011 | Author: | Filed under: baseball, breast cancer, infection | Tags: , , , , , , , , , , , , , , | 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.

R.I.P, Betty Ford

Posted: July 9, 2011 | Author: | Filed under: breast cancer | Tags: , , , , , , , , , , , , , , , , | 8 Comments

Betty Ford died yesterday at age 93. I’m so glad it wasn’t the breast cancer that killed her. As a young(ish) cancer-chick myself, it’s depressing as all get-out, not to mention terrifying, to learn of other women’s death from the disease we share. When this damned BC menace claimed Elizabeth Edwards, I was saddened and more than a little sick to my stomach at the stark realization that this disease does kill, young or old, healthy or not. The fact that this dreaded disease claims some 40,000 women a year brings into sharp focus the loss of maternal love that comes with each BC casualty. Knowing how much I miss my own sweet mama, the idea of the motherless Edwards children weighed heavily on my heart for weeks after her death.

I was a kid when Betty Ford was in the White House, so I don’t have much of a reference point for her. I do recall a grade-school chant of “Ford, Ford, he’s our man; Carter belongs in the garbage can” during Ford’s bid for re-election, but like the other kids on the playground, I chanted that with virtually no knowledge of politics. I’m sure I knew that Richard Nixon had been president, but was much too busy riding my bike and playing cul-de-sac games to realize that Gerald Ford became president in August of 1974, taking the place of a disgraced Richard Nixon. Now I know that Ford had been vice president less than a year before being “called up”; he’d been chosen to succeed Spiro Agnew, who also left office in disgrace amidst accusations of tax evasion.

I’m sure I didn’t realize that Betty Ford went from a “regular person” to wife of a Congress member fast. Really fast. She married Gerald Ford a month before he was elected to Congress; in fact, he was late to their wedding because he was campaigning up to the last minute. When JFK was president, the Fords became friends with the Kennedys and attended several parties at the White House. When JFK was assassinated in 1963, Betty Ford lingered at the burial and was the last woman at the gravesite. Two years later, Ford was elected minority leader of the House, and was away from home a lot. That’s when her heavy drinking began, and it continued for more than a decade before her family intervened. After she conquered her addiction to alcohol and pain pills, she founded the Betty Ford Center, which opened in October 1982. Since then, some 27,000 people have been treated there, including celebs like Elizabeth Taylor, Mary Tyler Moore, and Mickey Mantle.

I didn’t think much about Betty Ford once I was an adult, either, since her time in the spotlight had more or less passed and she endeavored to live as a private citizen. She apparently shunned the spotlight yet was returned to it in December 2006 when the country entered a 6-day mourning period upon the death of President Ford.

Even then, I didn’t think much about her, until I was diagnosed with breast cancer.

See, Betty Ford was a member of the pink ribbon sisterhood, and she blazed a trail that has significantly benefited subsequent generations of women. Women like me.

I was 6 years old when Mrs Ford was diagnosed with breast cancer in her right breast. She learned the bad news on September 26, 1974, according to the First Ladies’ biographies website. Two days later, she underwent a radical mastectomy. She’d been the First Lady for a matter of weeks when she was diagnosed. She faced the situation with the candor for which she’d become known: she announced her diagnosis and surgery publicly and even invited the media into her hospital room and posed for photos. Here she is, reading a get-well card signed by Congress.

AP file photo

I have no idea if she realized how much of a trailblazer she was. It’s probably just how she was, and to her, being outspoken and honest about her “cancer journey” is “just what you do.” I can relate to that. I hope Mrs Ford realized the impact she had on breast cancer awareness, which is safe to say was nonexistent in the early 1970s. I think she must have, based on this quote: “Before I was ever out of the hospital, there were, on television, women checking in to have mammograms,” Ford said at the Gerald Ford Museum in May 2001. “It was kind of like, if the first lady can have breast cancer, anyone can have breast cancer.”

Mrs Ford underwent two years of chemo, and in the fall of 1976 her doctors declared her cancer-free. Someone once asked her if she felt sorry for herself after losing her breasts. I absolutely adore her reply:

“No! Oh no — heavens no. I’ve heard women say they would rather lose their right arm, and I can’t even imagine it. It’s so stupid.”

She believed that women facing breast cancer should “go as quickly as possible and [get the surgery] done. Once it’s done, put it behind you and go on with your life.”
It’s safe to say that Mrs Ford paved the way for countless women–including yours truly– who were diagnosed after her. She removed the stigma from cancer, and breast cancer in particular. Before she piped up, there was no breast cancer awareness, no public discussion, and certainly no pink-ribbon culture. Barbara Brenner, former executive director at Breast Cancer Action said that Ford “showed people that you can live with cancer, that it’s not a death sentence.” The Komen organization has similar respect for Mrs Ford. Their official statement says “Betty Ford opened the door for millions of women when she candidly acknowledged her breast cancer diagnosis at a time when we didn’t talk about this disease and untold numbers of women suffered in silence. She showed the world that breast cancer could be faced with courage, with humor and with great dignity.”

It’s also safe to say that Mrs Ford would likely be quite pleased with the advances that have been made in breast cancer treatment. Ironically, in the same year she was diagnosed, Tamoxifen was showing itself to be a wonder drug in decreasing breast cancer recurrence. Now it’s become a household name in the BC community, and it’s a daily part of my life.

I think I would have really liked Betty Ford. Not just because we’re both members of the dreaded pink ribbon club, either. Because she was smart, sassy, outspoken, and real. She was a survivor, in every sense of the word. She was beloved as First Lady, and used her role as a platform to educate the American public on controversial subjects such as abortion, marijuana use, and the Equal Rights Amendment. She made it clear that she and President Ford would share a bed in the White House (something not previously publicized, apparently), and when someone asked her about sleeping with the president, she said “I do–every chance I get.”

She was perhaps unconventional as First Lady, and I like how she shook things up a bit. I love this story about her, told by White House photographer David Kennerly. On her last day as First Lady, Betty Ford walked by the empty Cabinet Room and told Kennerly, “You know, I’ve always wanted to dance on the cabinet room table.” Kennerly said, “Well, nobody’s around.” Opportunity knocked, and the plucky First Lady took advantage.

Kennerly says she took off her shoes, hopped up there, and struck a pose. “She’s a tiny woman, really, in very good shape. Very graceful, as a former dancer with the Martha Graham company. She got up there.”

Speculating on why Mrs Ford would be compelled to dance on the table, formally set with notepads and ashtrays (yes, ashtrays!), Kennerly realized that very few women have had a seat at that table. “I bet you could count them on one hand at that point, and knowing her support for the Equal Rights Amendment”—she endorsed it—”she was tap-dancing in the middle of this male bastion. She was storming the walls of the gray suits and gray-haired eminences.”

“It was a wonderful and whimsical ending,” Betty Ford wrote, “to that magical time I spent as first lady.”

R.I.P, Betty Ford.

Ice, ice baby

Posted: July 6, 2011 | Author: | Filed under: breast cancer | Tags: , , , , , , , , , , , , , , , , , , , , , | 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.

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