Wisdom from the DL

animalluv.com

I’ve been on the DL — disabled list — an awful lot since cancer came to town, and I don’t like it. I don’t like it, but I think I’ve gotten better at it. I’ll never be good at being a spectator in my own life, and I’ll never be one who enjoys the journey in my haste to get to the destination,but I have learned the value of time & place and that sometimes you have to be instead of do. I’ve learned to chant “It’s temporary” a thousand and one times to remind myself that while this is my life, it won’t always be like this.

Josh Beckett all wrapped up, redsox.com

Being on the DL has taught me a lot. Being forced to watch my tennis team while I waited for my body to heal enough to be able to play was one of the single best things I could have done for my game. If someone had suggested it to an able-bodied, healthy me, however, I would have laughed at the idea of sitting instead of playing. But watching helped me appreciate the game on a whole new level. I could focus on the strategies being employed, instead of being on high alert for the ball coming my way. I could study the nuances of each player’s serve, noticing how very different and personal a serve is. I noticed for the first time that everyone — even the best players on the court — makes bad shots. That was enlightening for an always-hard-on-herself player like me.

Andy Murray joins the DL. gototennis.com

With my next revision surgery scheduled for the day after tomorrow, I prepare to go on the DL yet again. I played my last match of the season last week, and we played our usual Sunday morning 4 sets yesterday. I enjoyed both immensely, knowing that I won’t get to play again for several weeks. But this time, instead of being bummed about having to sit out again, I realized something. Something important. Like my cancer “journey,” being on the DL is temporary, and instead of being anxious and impatient to get back, I find myself contemplative and introspective about my game. It’s not about playing as much as humanly possible, it’s about playing the very best tennis possible for me.

Kim Clijsters succumbs, livetennisguide.com

This time while I’m recovering, I’ll be thinking about getting back to basics: swinging through the ball; having the discipline to not hit a bad toss; moving in on a high ball; shifting to cover the middle. I won’t be thinking about whether everyone on my team is improving while I’m standing still. I won’t be thinking about all I’m missing. I’ll be thinking about all I have. I’ll channel Sheryl Crow, who may not play tennis but has the wisdom to remind us: “It’s not having what you want, it’s wanting what you’ve got.”

Kevin Everett beat the odds, buffalospree.com

I’ll never say that I want what I’ve got in terms of having been diagnosed with cancer at age 41, in the prime of my life AND my tennis game. But I can say that I’ll smoke ‘em if I got ‘em. I’ll make the best of my situation, regardless of how shitty it is and no matter how many times I go back on the DL. In addition to channeling Sheryl Crow, I’ll channel the wise & wonderful Dalai Lama and repeat a thousand and one times his mantra of “When we meet real tragedy in life, we can react in two ways–either by losing hope and falling into self-destructive habits, or by using the challenge to find our inner strength.”

I’ll be finding my inner strength.


Never, never, never

My sweet friend and lymphedema guru Tammy has a sign in her treatment room that I’ve looked at a million times and always find strength in it. Since I’ve been having a rough go lately, I thought I’d post it but then couldn’t find the photo I have of it. So I did a google search, thinking I’ll buy the sign as a little pick-me-up for myself, a “love gift” as my runnin’ buddy would say. Can’t find it. Anywhere. If I asked Tammy where she got it, she’d probably give it to me, so I’m not going to ask.

I did find a reasonable facsimile, and here it is. Meanwhile, the search will continue, and I will refuse to give up.


CANCER SUCKS

Cancer is so not fair.

It just sucks.

It’s such a bitch.

I hate it.

One badly timed comment; one errant remark.

That’s all it takes to go from normal to an emotional wreck. Suddenly I’m on the verge of tears–in front of other people, which is awful, and in front of one person I’d rather take a beating than cry in front of. Pride is a terrible burden sometimes.

Just one comment.

All was going according to plan at my pre-op appointment until one little utterance, slightly misinformed on the doctor’s part and hugely misinterpreted on mine, sent it all akimbo.

I was ready for this next revision. Six days and counting. Schedules rearranged, favors called in, sacrifices made…again.

I had signed up for this revision and was willing to go along with it quite voluntarily, even though it meant more pain and downtime and missing out on some important stuff. Well, important to me anyway: the annual Halloween tennis tournament at our club, which my runnin’ buddy and I won last year and hoped to recapture this year. The rest of the tennis season, for which I’ve only played 2 matches total for the entire season (and lost both, BTW, so suck it, everyone). Our regular Sunday morning match & beer-drinking with our buds Christy and John. Lots of tennis will not be played by me while I recover, yet again from yet another revision. The last-minute Halloween rituals, in which costumes are finalized and trick-or-treat dates are secured. All of this will be superseded by yet another recovery. The everyday, average tasks and duties of a regular life. All put on hold, in pursuit of a normalcy that seems ever elusive, just out of reach.

All I want is symmetry and improved shape to my newly created breasts.

Is that really so much to ask?

I’m well past the point of buying into the BS of “Bummer about the cancer but at least you get new boobs.” That dangling carrot didn’t quite pan out for me. Thanks to the ol’ post-mastectomy infection and a much-more-complicated-than-expected reconstruction known as The Big Dig, the prize at the finish line of my cancer “journey” isn’t much of a prize at all. It’s more a reminder that no matter how skilled the surgeon, no matter how many versions of revision I endure, my body is never going to be the same. It’s never going to look like it did before cancer shat all over my head at the ripe old age of 41.

I’m not stupid. I don’t expect my body to look like it did pre-cancer. I don’t expect my life to be carefree and manageable like it was pre-cancer. But I really didn’t think it would be this bad, this hard. I really didn’t think it would be so bloody difficult to deal with the reality of cancer day in and day out.

Sure wish someone would have warned me.

Because I bought into the “get through the scariest, worst experience ever and you’ll live happily ever after.” And silly me, I thought I was dealing with all the repercussions of the post-cancer life.  I’ve faced the ugliness head-on. I’ve tucked my head and kept on truckin’. I’ve plastered a smile on my face and counted my blessings. I’ve poured out my feelings — good and bad — in an effort to “deal with it.” I’ve done the research and shown up for all the required appointments. I’ve endured more poking, prodding, and pinching. I’ve suffered through humiliations large and small. I’ve managed the pain and the crazy emotions. I’ve found myself smack-dab in the hell that is chemically-induced menopause and lived to tell about it. I’ve made a point to take my medicine, literally and figuratively, even when it tasted like poison and burned my insides to a crisp. I’ve learned to accept that schedules don’t matter to cancer, that there is no way to predict or prepare for the twists & turns that comprise this cancer “journey.”

I thought I was dealing with it all, and dealing with it quite well.

Silly, silly me.

Thank you, google images. 


13 facts about MBC

 Metastatic Breast Cancer Awareness day has come and gone , but it coincides with the anniversary of my mom’s death (from cancer, natch), so I didn’t get to really blab about it on the actual day. I want to do that now.

I’ve gotten to know some bloggers who have MBC, and I’ve learned a lot about it. I have an entirely new understanding of it, although I can’t really know what it’s like.

I think about MBC a lot because my brain likes to go to those dark, scary places sometimes when it’s not otherwise occupied with thoughts of what I can cobble together for dinner, whether there’s enough dog food to put off the Costco run, and transporting children to games, practices, and lessons.

When I was newly diagnosed and consulting with oncologists, one of the oncs I didn’t pick said something that has stayed with me. (I didn’t not pick him because he said this, by the way.) He said once a cancer comes back, it’s no longer curable. No matter what stage you start and how fortuitous your prognosis, once it comes back, you move from curable to treatable.

Whoa.

That is frightening.

It’s also true.

I think about recurrence all the time. As in, at least once every day. Not in a wringing my hands kind of way, but in a “this is my reality” kind of way. I’ve done my homework and I’m very realistic. I would be surprised to skate outta this life without cancer yet again crashing my party.

Even though I feel like I did everything right, there is no guarantee that I won’t face recurrence. Bilateral mastectomy at age 41 seems drastic, but I like slash & burn warfare. Even though I have no breast tissue, I am not guaranteed that breast cancer won’t come back. My rate of recurrence is low, statistically, but as I’ve learned the hard way, stats don’t guarantee anything either.

I’m not saying this to be negative. No sir. In fact, there’s a tremendous amount of pressure on cancer patients, especially those with breast cancer, to be positive, to be optimistic, to be chipper about the fight. The irascible Molly Ivins spoke on this topic better than anyone:

“I suspect that cancer doesn’t give a rat’s ass whether you have a positive mental attitude. It just sits in there multiplying away, whether you are admirably stoic or weeping and wailing. The only reason to have a positive mental attitude is that it makes life better. It doesn’t cure cancer.”

Amen to that.

Molly also said this about BC: “Having breast cancer is massive amounts of no fun. First they mutilate you; then they poison you; then they burn you. I have been on blind dates better than that.”

But my favorite thing she said about BC is this:

“Losing a part of a breast or all of one or both has, obviously, serious psychological consequences. Your self-image, your sense of yourself as a woman, your sense of your sexual attractiveness are going to be rocked whether or not you have enough sense to realize that tits aren’t that important. I am one of those people who are out of touch with their emotions. I tend to treat my emotions like unpleasant relatives–a long-distance call once or twice or year is more than enough. If I got in touch with them, they might come to stay. My friend Mercedes Pena made me get in touch with my emotions just before I had a breast cut off. Just as I suspected, they were awful. ‘How do you Latinas do this–all the time in touch with your emotions?”‘I asked her. ‘That’s why we take siestas,’ she replied.”

Molly Ivins died of metastatic breast cancer on January 31, 2007 at age 62. I miss her sass, her liberal bias, and her writing about politicians who are “too big for their britches.” Anyone who uses that expression regularly will always have a seat at my table. The following 13 facts are  in her honor. It’s not much, Molly, but I hope it’s something.

googleimages.com

13 Facts Everyone Should Know about Metastatic Breast Cancer

1. No one dies from breast cancer that remains in the breast. The lump itself is not what kills. The metastasis of cancerous cells to a vital organ is what kills.

2. Metastasis refers to the spread of cancer to different parts of the body, typically the bones, liver, lungs and brain.

3. An estimated 155,000 Americans are currently living with metastatic breast cancer. Metastatic breast cancer accounts for approximately 40,000 deaths annually in the U.S.

4. Treatment for metastatic breast cancer is lifelong and focuses on control and quality of life vs. curative intent. (“Treatable but unbeatable.”)

5. About 6% to 10% of people are Stage IV from their initial diagnosis.

6. Early detection is not a cure. Metastatic breast cancer can occur ANY time after a person’s original diagnosis, EVEN if the patient was initially Stage 0, I, II or III and DESPITE getting annual checkups and annual mammograms.

7. Between 20% to 30% of people initially diagnosed with regional stage disease WILL develop metastatic breast cancer.

8. Young people DO get metastatic breast cancer.

9. There are many different kinds of metastatic breast cancer.

10. Treatment choices for MBC are guided by hormone (ER/PR) and HER2 receptor status, location and extent of metastasis (visceral vs. nonvisceral), previous treatment and other factors.

11. Metastatic breast cancer isn’t an automatic death sentence. Although most people will ultimately die of their disease, some can live long and productive lives.

12. There are no hard and fast prognostic statistics for metastatic breast cancer. Everyone’s situation is unique, but according to the American Cancer Society, the 5 year survival rate for stage IV is around 20%.

13. October 13 is National Metastatic Breast Cancer Awareness Day. To learn more about it as well as resources specifically for people with metastatic breast cancer see www. mbcn.org. We appreciate your support on October 13 and throughout the year.


The ringleader

The last couple of weeks have been fraught with girl drama. I don’t like girl drama. Didn’t like it when I was in high school, and like it even less now that I’m old enough to have a high schooler.

Some people thrive on drama, feel energized by it. Like a vampire staring at a bulging vein, they swoop in and add fuel to the fire. Feelings get hurt, words get twisted, alliances shift, and everyone is miserable.

I made the very grown-up decision to excuse myself from the mean-girl games. I was done. Over and out. While the part of me that has a heightened sense of justice wanted to tell the erring party just where they were wrong, maybe even whip out an outlined, bulleted list of grievances, I decided to be the bigger person and let it go. Walk away from the fight.

But guess what? The fight followed me. The erring party spoke to several others with a stake in the fight and it all somehow circled back to me. The erring party made peace with the others, but the message she kept hearing from them was that it wouldn’t be over until she made it right with me.

Why me?

Because I have a big mouth? Because I tend to say what I really think, instead of cloaking the reality in niceties so that the reality becomes blurred? Because I no longer care whether people like me? Because I’m content to live my life according to the standards I set for myself, and as long as I’m being the kind of person I want to be, I don’t give one flip what anyone else thinks? Because watching my sweet mama be eaten alive by cancer made me realize that none of that stuff matters? If someone is going to believe another person’s version of who I am, rather than think about the kind of person I actually am and the way in which I conduct myself, I say have at it. I’m ok with that, and that person is not someone I need as a friend. I figured out a long time ago that I’d much rather have a small, true circle of friends than a gaggle of not-so-true friends. Quality speaks to me more than quantity.

And yet, I found myself in the unpleasant role of the ringleader in this latest girl drama.

That is so not fair.

But neither is life, and I learned that a long time ago, when I was in the 4th grade. The age my daughter is now. There was a Jewish girl in my class who got picked on. I was friends with her, but I was also friends with the people who picked on her. One day on the playground some boys pulled her pants down. She was mortified and cried her eyes out, as I would have too. Kids can be so cruel. Her mother had a loud conversation with the principal. I was brought in for questioning as the ringleader. I told the truth: the boys pulled her pants down. None of the girls were involved in the pantsing. Or is it de-pantsing?  I still don’t know.

Her mother thought the girl was being picked on because she was Jewish. The principal asked me if that was true. I didn’t even know what Jewish was. How strange to be thought of as the ringleader when I didn’t even know the victim was different. She was my friend. I didn’t care about her religion. I still don’t care about things like that.

Later the principal told me that I’d better get used to being thought of as the ringleader. That people will always look at me that way because I’m outspoken and opinionated. Because I’m a leader. I didn’t think of myself as any of those things at that age. But if the principal said it was true, it must be.

I didn’t think of it at the time, but I’ve looked back on that conversation a lot over my life and realized that there’s a heavy burden in being a leader. And that it seems unfair to place that burden on someone just because they’re willing to do something that others aren’t willing to do: lead.

Being outspoken and opinionated is not something I think about, it just is. Like how some people have red hair, or some people have long toes. It is an inherent part of me.

Sometimes it gets me in trouble. Sometimes people assume I’m involved in something when I’m not. Sometimes people assume I know something about a situation when I don’t.

I’m not complaining, that’s just the way it is.

That’s the price you pay for being the ringleader.


Swing for the Cure

A tennis tournament with my friends to benefit a cause near and dear to my heart? Sign me up!

Our club had the first annual Swing for the Cure this weekend, and what a fine time it was. The weather was sunny & warm, the mood was festive, and the teams were all decked out in pink. There was lots of bling, including some super cute blinged out fingernails.

There were so many different combinations of pink tennis outfits — tie dye, hot pink, light pink, black with pink…it was quite the rosy scene.

It seems fitting to have a tennis tournament that raises money for breast cancer outreach because both tennis and cancer can be epic battles. Hand-to-hand combat is required at times in both. Yannick Noah said once “I have always considered tennis as a combat in an arena between two gladiators who have their racquets and their courage as their weapons.” Guess what? Cancer required combat, too, and I’ve strapped on the gladiator mentality more than once, with courage as my main weapon.

I hadn’t realized just how many parallels can be drawn between tennis and cancer until now. Both require stamina and strategy. Both can be seen as a battle. Neither ensures any guarantees — the best player doesn’t always win, and sometimes the player does all she can and does everything right but doesn’t clench victory. Billie Jean King said that tennis is “a perfect combination of violent action taking place in an atmosphere of total tranquility.” Ever stepped into an infusion room of an oncology clinic? It’s serene with soft colors on the walls, nurses with soft-soled shoes, fluffy and warm blankets if you feel a chill, and it’s perfectly acceptable to close your eyes and doze off. Meanwhile, poison drips into your veins — literally — or an injection sends a powerful hormone into your muscles to circumvent the wiring in your system and shut down your ovaries. Violent action in an atmosphere of total tranquility.

Pete Sampras said “It’s one-on-one out there, man. There is no hiding. I can’t pass the ball.” Was he talking about tennis or cancer? Could be either one. Could go either way. It is definitely true of both. There have been few times that I felt like hiding along my cancer “journey” because I’m a “grit your teeth and get through it” kind of girl, but there’ve been plenty of times I wish I could pass the ball. Let someone else take over for a while.

My good friends at Fiat of Clear Lake were generous enough to sponsor the Swing for the Cure tournament this year. A very nice and much-appreciated gesture, for sure.

In addition to laying down some sponsorship cash, they also brought one of the special-edition Pink Ribbon Fiats out for everyone to see.

How cute is this car??

Fiat teamed up with the Breast Cancer Research Foundation to come up with this cutie. Available in white or silver, the Pink Ribbon Fiat features a pink stripe and a pink ribbon on each side of the 250 special-edition cars, along with super-cool interior designs. I may need to get a set of these floor mats for my car.

The pink stitching around the leather seats is so fine! It’s not on every area of stitched leather, so it accents the interior so nicely. Any more pink and it would seem overdone.

The pink ribbon along the side stripe isn’t in-your-face loud, but conveys the message quite nicely.

“The Fiat 500 Pink Ribbon edition offers a unique and stylish way to express their support, help fund breast cancer research and ultimately drive change,” said Laura Soave, head of Fiat North America.

My partner Julie and I were ready to drive change, for sure. We posed for our team photo then headed onto the courts to beat up on breast cancer.

Fiat is donating $1,000 per vehicle purchased, with a minimum of $50,000 to the breast cancer foundation.

I’m so glad Fiat chose to partner with the BCRF. I’ve said my piece about my disappointment with that other breast cancer organization. Yes, that other organization has increased awareness, decreased stigma, and paved the way for lots of effective change, but the BCRF wants to take all that a step further:

“The mission of The Breast Cancer Research Foundation is to achieve prevention and a cure for breast cancer in our lifetime by providing critical funding for innovative clinical and translational research at leading medical centers worldwide, and increasing public awareness about good breast health. Currently, over 90 cents of every dollar donated goes to breast cancer research and awareness programs.”

That’s good stuff.

Here’s more:

“The BCRF was founded in 1993 by Evelyn H. Lauder as an independent, not-for-profit organization dedicated to funding innovative clinical and translational research. In October 2011, BCRF will award $36.5 million to 186 scientists across the United States, Canada, Latin America, Europe, the Middle East, Australia and China. With exceptionally low administrative costs, BCRF continues to be one of the most efficient organizations in the country and is designated an “A+” charity by The American Institute of Philanthropy, the only cancer organization to achieve this.”

Great friends, a day of tennis, and a good cause — it doesn’t get any better than that.


2 friends

Two of my friends got the dreaded call from their OB-GYNs after their routine mammogram. The call that makes you sweat. The call that makes you wish you’d refused to pick up the phone. The call that makes you wonder how the person on the other end of the line can be so calm when you’re freaking out. The call that sets in place a chain of events that have the power to change your life forever.

How ironic that out of all the women in the world, and out of all the women I know personally, and out of all the women I consider friends, two of them got the call. On the same day.

It stinks.

It’s not fair.

I don’t like it.

But that’s the reality of breast cancer.

It’s indiscriminate. It cares nothing for age — both of my friends are under 40. It cares nothing for financial status. It cares nothing for how well or how poorly one treats one’s body. It strikes old and young, wealthy and struggling, health nuts and McDonald’s junkies. That’s the reality. There’s very little rhyme or reason to it. It’s a crapshoot.

I’ve said it before and will continue saying it: I’m so sick of cancer.

The reality of any kind of cancer is shitty. I can’t think of a better word for it. Any cancer is shitty. I speak of the shittiness of breast cancer because that’s the one I know, but I certainly don’t think it’s the only cancer that is shitty. Just a disclaimer and an affirmation that all cancer is shitty. And proof that I really like using the word shitty. And shittiness.

There is of course a good chance that both of my friends will escape breast cancer’s grasp. I’m hopeful that the follow-up ultrasound/MRI/biopsy shows nothing. Calcifications, fibroids, dense tissue, cysts. There are lots of things it could be, and the rate of false negatives is something to hang on to in these situations. The National Cancer Institute puts that false-negative rate at 10 percent. I’m hopeful. “False-positive mammogram results can lead to anxiety and other forms of psychological distress in affected women. The additional testing required to rule out cancer can also be costly and time consuming and can cause physical discomfort,” according to the NCI website. Really? Ya think?

That’s ok. Both of my friends can take the costly, time-consuming, and uncomfortable aspects of the additional testing. It’s the anxiety-causing aspects that are hell. The thoughts that run through one’s mind between receiving the dreaded phone call and getting the additional testing can make one crazy. Then there’s the infernal waiting period between the additional testing and receiving results. It’s a wonder we’re not all stark-raving maniacs popping sedatives every hour on the hour.

This is the reality of breast cancer.

Even when it hasn’t struck, when it’s a mere possibility instead of a certainty. Even when it hasn’t infiltrated your life for real, it has the power to mess you up.  Way before actual diagnosis, the reality of breast cancer is harsh and unrelenting. And guess what? Even after “getting through it” in terms of receiving the dreaded phone call, having the additional testing done, hearing the actual diagnosis, making the decisions necessary, and undergoing surgery and/or treatment, it’s harsh and unrelenting. Coming to grips with one’s new body. Dealing with the mountains of paperwork and bills. Keeping abreast (haha) of the latest research. Deciding what lifestyle changes to make or not make. Navigating the psychological fracas. Coming face-to-face with mortality. Moving through the treacherous stages of emotional distress. Facing the ever-present prospect of recurrence.

This is the reality of breast cancer.

One of my two friends fell victim to crappy insurance. She had some symptoms that caught her attention months ago but waited to get it checked out until the new, better insurance took effect. Even in the suburban bubble, where affluence reigns, insurance hassles prevail.

Which leads me to remind everyone to please take a few seconds out of your day to vote for The Rose in The Pink Well Challenge that I mentioned yesterday. The Rose helps women who don’t live in an affluent bubble get access to the breast health care that can make a real difference in their lives. If you’ve ever spent one second thinking how lucky you are to have whatever version of insurance you have, this is your chance to give back. If you have no insurance and you’ve spent more than one second worrying about that, this is your chance to help others in the same boat. If you have great insurance and have never had a health worry, I don’t want to talk to you right now but you can still help. :)

It’s easy to help, but time is running out. Click on The Pink Well Challenge link above or right here, click “VOTE NOW,” enter your email address, check your email for the access-granting link (do it now, not later because I don’t want you to forget), click the link, scroll down to charity #137, enter “10” in the box on the far right, and submit. Tell your friends and nag your family members.

And keep your fingers crossed for my two friends.


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