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.

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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.


The Pink Well Challenge

Houston philanthropist Lester Smith was on the Ellen show this week. I missed it, and I sure am mad — I would have loved to have gotten the word out earlier about Lester’s latest project: The Pink Well Challenge.

Lester and his wife Sue are both cancer survivors, and their foundation is ponying up big cake for cancer charities. The Lester and Sue Smith foundation is giving away $1 million to small cancer charities across the country.

There’s a contest to see how the money is divvied up, and you can help. It’s easy, takes about 10 seconds, and all you have to do is vote. I’m not going to tell you which charity to vote for, but if you’re not sure which way to go, pick The Rose.

The Rose is a fantastic organization that provides screening and diagnostic services to underprivileged women, including a mobile mammogram service.Created by two women who were inspired by a breast cancer patient & advocate, The Rose has a simple goal:  “to reduce deaths from breast cancer by eliminating barriers and providing access to essential resources. Women who are insured help The Rose care for those who are uninsured.”

The Rose does an awful lot in the greater Houston area. According to their website, last year The Rose delivered 90,067 services, including 19,053 screening and diagnostic procedures at no charge to low income, uninsured women. This program provides breast cancer detection services to those who cannot afford the costs of these potentially life-saving procedures.

See why you need to vote for The Rose to win Lester Smith’s contest?

And you need to do it now — voting ends tomorrow. Man, I wish I’d heard about this sooner.

Please, do me a favor and go to the Pink Well Challenge website and vote. Click here or type the website into your browser yourself: http://pinkwell.org; either way, please vote. Click on the “VOTE NOW” link on the blue box. I would love to see The Rose get a $25,000 grant. That would totally make my day. 

Did you vote yet?



6 years later…

Today is National Metastatic Breast Cancer Awareness Day. Congress said so, and in making such a proclamation, let’s hope we get some action. Action beyond pink ribbons and promotional tie-ins like toilet paper and cups of yogurt. The estimate is that some 160,000 women are dealing with metastatic breast cancer, but I suspect the number is much higher. Metastatic means the cancer has spread. Stage IV. There is no Stage V. Every BC patient’s worst nightmare. Because being diagnosed at all, regardless of stage, isn’t nightmare enough.

I’ll save the mets post for another day, because there’s another commemoration taking place today, and I won’t be able to rest until I get this post out of my head.

Or so I thought.

I sat down at my computer to mark this important day, but I got nothing. I am stuck. The enormity of the topic overwhelms me. I want to write just the right thing, but in my quest for perfection I’m struck down, unable to convey the importance that screams to get out.

It’s not often that I’m at a loss for words, particularly on this little blog. I rarely have trouble thinking of what to write, and most days the topic guides me. Sometimes a topic pops into my head and I have an overwhelming urge to write. My fingers on the keyboard can hardly keep up with my thoughts as they tumble out of my head.

But today, I’ve got nothing.

And rather than make myself crazy on this day, this important yet heartbreaking day, I’m going to re-run the post from last year. I added a few more pictures, because this time last year I was brand-new to blogging and hadn’t quite figured out how to manage the images in my posts. But more importantly, I added a few more pictures because I need to remember what she looked like.

My heart is heavy as grief once again rears its ugly head and reminds me that she is gone, forever. 
It’s been exactly 5 years since my mom died. Lots of people have written about loss & grief, and most of them have done it more eloquently than I. If you knew her, you loved her. Plain & simple. She was one of those people. She never met a stranger and could talk to anyone. The stories are endless, and if I think really hard I can conjure up the sound of her laugh. I have to work hard to remember her voice, though, because her “sick” voice is the freshest one. I also have to think back to how she looked, pre-cancer, before the dreaded disease ravaged her body yet was unable to extinguish her effervescent personality.

My mom was an incredible cook. She grew up on a farm and lost her own mom at age 13, so she assumed more responsibility than a middle-schooler should. She taught me a lot in the kitchen, although I’ll never match her skill with pie crust. I try every year at Thanksgiving and Christmas, and end up exhausted, frustrated and having used a month’s worth of curse words. One year at Christmas she gave coupons for a homemade pie, and those were highly prized gifts for sure.

She was a “white” woman who married into a Greek family. “White” means anyone who’s not Greek. Sometimes the Greeks aren’t happy about “whites” joining a family, because they want their kids to marry other Greeks. My mom didn’t let that stop her. She ingratiated herself into the lives of the Greek women and learned their culinary secrets. It wasn’t long before she was the best cook in the bunch. Not bad for a “white” girl.

My sweet mama was the quintessential suburban at-home mom: PTA president, Girl Scout leader, queen of homemade Halloween costumes. She put a homemade meal on the table every night for dinner, and I was halfway through elementary school before I realized that the homemade cinnamon roll that was my lunchbox treat was a rarity.

She had a love of learning that I see echoed in my own kids. I’m sure she flourished at college, probably thrilled to be responsible only for herself for the first time in years. She was president of her sorority and got this fancy necklace to wear during her reign. The look of pure happiness on her face makes me smile all these years later. In her typical over-achieving way, she graduated college in 3 years, then became an English teacher before she became a mom. My whole childhood, she had us look up words in the dictionary to learn how to spell. I won the spelling bee in 4th grade, and to this day am proud of being a good speller. She instilled a love of words and reading that I’ll carry with me my entire life.

When Trevor graduated from business school in 2004, she was as proud of him as if he were her own child. In fact, once he married into her family, she considered him a son. Not a son-in-law, but a son. She was sick at the time this photo was taken, but hid it well. She didn’t want anything to interfere with his big day.

She had a lot of success in life, but her greatest achievement was being YaYa. She loved her grandbabies to the max, and when she knew she was losing her battle against cancer, she spoke of her sadness in not being able to watch them grow up. She’s missed out on a lot. But loss is a 2-way street, and the 4 kids who were lucky enough to have her as their YaYa, albeit way too briefly, have missed out as well. As each year passes, and her grandbabies grow up, they change and take on new interests and habits. She would have loved every minute of it. Something tells me she would have been quite adept at navigating whatever stage those little darlins are in.

Here they are on the day of her funeral.

Andrew was 8, Payton and his cousin Megan were 6, Macy was 3 when YaYa died. She was 67. Way too young, all the way around.

Life isn’t the same without her. While the pain of loss has lessened over the years, it’s still there, and I suspect it never goes away. No one in your life loves you the way a mother does. And no matter how old I become, I will always miss my mother’s love. Oliver Wendell Holmes said that “mothers carry the key of our souls in their bosoms.” That certainly was the case with my mom.

Milestones are hard when you’ve lost someone so dear. Every year, the week or so leading up to the anniversary of her death has been miserable. I find myself transported back to the time of  illness and all of the unpleasantness that entailed. Taking care of her was both the hardest thing ever and the greatest honor. I went into it knowing it would be hard, but having no idea how brutal. Balancing that with taking care of my young family was grueling, no doubt. But I wanted to come out of it with no regrets, and I’m happy to say that I did.

This year, however, was different. I wasn’t dreading the date. Maybe because I’ve got a lot on my mind and a lot on my plate. Maybe because as I get ever closer to regaining my “normal” life after my own cancer battle, I have a new perspective. Maybe I’m just getting absent-minded in my old age.

For a while after she died, I looked for her in crowds: at the grocery store, at a baseball game, at any random gathering. I knew, of course, that she wasn’t there. At least my rational brain knew that, but I looked anyway. I don’t know when it was that I stopped looking, but at some point, I started to see her. Not really her, but glimpses of people or expressions on faces that recalled her: the woman at the gym who looks a lot like her from the back. The resemblance in my niece to my mom’s photos as a child. My aunt’s hands, which look just like my mom’s.

This year, today, on the anniversary of her death, I wasn’t looking for her, but she was there. Today in my much-anticipated first tennis match since my mastectomy, my opponents’ names were Barbara and Ann. Guess what my mom’s name was? Yep, you got it — Barbara Ann.


A day of docs

Yesterday was my regular check-up with my onco-crush, Dr D. 

He’s so young and so cute ya just want to squeeze him. And he’s a hugger, too, so squeezing him is definitely an option.  Me, I’m not much of a hugger, as my book club buddy Laura will tell ya. She manages to get more hugs out of me than anyone. I’m not very touchy-feely by nature, but I’m working on it.

I got a couple of hugs from Dr D yesterday, and since I won’t see him again until January, he said Merry Christmas and Happy New Year, too. That makes me panic a little, thinking the holiday madness is upon us and I don’t have enough time to engage in the consumerism that has become de rigueur. I also don’t tend to think that far ahead. I’m more of a small-picture kind of girl who’s learned not to look too far down the road, because there might be something wicked lurking, like a 15mm invasive ductal carcinoma and its nasty friends, DCIS and Paget’s Disease.

Dr D is very big-picture, though, and he’s not at all worried about something wicked lurking down the road. That’s one of the many reasons I like him — every time I see him, he tells me he doesn’t think my cancer is going to come back. That’s music to my ears and a balm for my worried soul. When I told him that I think about recurrence every single day, he tut-tutted and told me to think about something happy instead. Duly noted.

We had a long talk about my love affair with alcohol, as we do at every visit. He knows I’m a fan of the sauce and while he would like to see me cut back because of alcohol being a risk factor for breast cancer, he also advises his patients to live their lives, and he’s realistic about the studies being inconclusive about just how big of a factor alcohol is anyway. I pointed out the tragic and really-not-fair example of Linda McCartney, wife of the famed Beatle, who died from breast cancer even though she was a hard-core vegan, ate 100 percent organic, had no family history of the disease, and never drank. You can’t live much cleaner than that, and the bastard still got her. I’m not vegan, but I am hard-core vegetarian, I eat a lot of organic, I actually like fruits & veg, and had no family history of the bastard disease, so I’m going to enjoy raising a glass here and there. Not every day, like I would like, but that’s my choice. There’s nothing I like more than having a glass of wine while I cook dinner every night. I don’t do that anymore. But I’ll still say cheers to the freaky weekend. And if a certain someone shows up with an unexpected bottle of bubbly because it’s Tuesday, then I say life is for living and pop that cork.

Once we discussed and debated the effect of alcohol on BC patients, we (thankfully) moved on to other topics. He has a very nice bedside manner that involves him spending a good deal of time looking right in his patients’ eyes and asking how the feel. How they are coping. How they are emotionally. He knows that fighting the vicious beast that is cancer is way more than a physical battle, and he spends the time necessary to check on the non-physical battlefield. Smart man. In this process, however, he might have bitten off more than he wanted to chew by asking me if I’m happy with my reconstruction. Cue the $100,000 question.

Do I think my surgeons did a good job with my newly reconstructed chest? Yes. A fantastic job. Does it look 1,000 times better than it did pre-reconstruction? Way. But am I happy? Not so much.

See, we had a conversation very similar to the one last week. And I pointed out to Dr D, as I have to other docs, that I am one of the uncommon BC patients who was happy with her body before cancer ignited a stinking bag of dog-doo on my front porch. Sure there were some things that I wanted to tweak, after having babies, nursing babies, and turning 40, but overall I was happy before. That makes it kinda hard to then be happy with the after side of  multiple surgeries and their far-reaching side-effects. I predicted that long after my “journey” is complete and I go back to my pre-cancer life, I will always see the scars instead of the progress. Not to be a Negative Nellie, mind you, but because I am very realistic. I know that the 17-inch scar on my belly will fade. In fact, it already has, and it started out looking way better than a lot of what I’ve seen in doing my research. I know that the “flaps” of skin used to create my breasts will settle into the landscape of my battle-scarred chest. I suspect that some day I will be more “me” and less “it” when it comes to thinking about how cancer has changed my body. But I’m not there yet, and Dr D listened and counseled me.

He gave me a very good piece of advice. So good that Amy jumped up and wrote it down on a piece of paper towel in the exam room. He said, “Focus your attention on the things you have achieved, because you have achieved a lot, but you still have a ways to go.”

He’s right, of course.

I just don’t tend to think that way. I’m way too busy thinking in the here & now (do I have enough bread to pack the kids’ lunches? Did I move the clothes from the washer to the dryer? It’s Mary’s birthday tomorrow; where’s the card I bought for her 4 months ago?). I need to stop a sec and shift from the here & now and the never-ending “to do” list and think for a moment about how far I’ve come and what I’ve achieved. My “journey” has been far from ordinary, routine. As my nurse-friend Laura says, “Everything that could go wrong did, and you were as far from a textbook case as could be.” True dat.

Two really great things came out of my appointment with Dr D, besides the pep talk and his blessing to have a drink. The first is the end of the Lupron shots. Hooray! I endured a year of that blasted drug, and am thrilled to say adios to it. The needle was huge, the drug was of the ilk that burns like fire upon entering the body, and the side-effects were hideous: hot flashes often enough to power a small city. Sweating more than Leon Lett after his infamous fumble against the Dolphins. Mood swings that make people run and hide from me. Joint pain that sometimes catches my breath. Decreased bone density that I can’t feel but fret about anyway. Bye-bye nastiness. Of course the flip side to being done with Lupron injections for hormone suppression means that I have to get serious about the oophorectomy.  Gotta get those ovaries removed for good. As much as hate the idea of yet another surgery and yet another recovery, I am of the “slash & burn” mentality when it comes to cancer. Get ‘em out so they can’t cause any trouble.

Item #2 in the “this is really great department” was the very last port flush. Hooray! I’ve had my port for almost 18 months, and it has served me well. It’s made my life easier and saved my already-floppy veins from being blown out once and for all. It’s allowed me to endure so many needle sticks that a 20-gauger no longer makes my palms sweat. But I won’t miss it. I will happily bid adieu to the titanium disk sewn into my  jugular. I will not miss the monthly flushes with saline and Heparin. I will keep it, though, as a souvenir. As a reminder of all that I’ve achieved. Of all that I’ve endured. Of all the crap that was flung at me but how little of it stuck.

 

 


The reality of BC

No, I’m not talking about BC the comic strip; I wouldn’t waste my blogspace on that. I’m talking about the reality of breast cancer. The everyday effects of living with — and past — this damned disease. Case in point: I was dashing through the grocery store yesterday to grab a carton of milk (organic of course, because of all the hormones they inject into the poor cows to increase their production, and hormones scare me; and in a paper carton instead of a plastic jug because plastics now scare me, too. Thanks a lot, cancer, for turning me into a paranoid freak who can barely get through the grocery store. Oh, and the receipt now scares me, too, because the chemicals on that innocent-looking slip of paper can act like estrogen, which fueled my cancer. Then there’s the money to pay for the groceries: how dirty and/or chemical-laced is it???). It’s a wonder I can get out of the house.

Anyhoo, before the paranoia set in, I was assaulted by the plethora of pink products. They’re everywhere. Yes, I know it’s October, which means Breast Cancer Awareness Month. I should expect this, right? As I cut through the canned-goods to get to the milk, I see this:

Ah, yes. Pink-label soup. Fantastic. All that sodium doesn’t contribute to lymphedema, does it??

Right next to my organic, paper-enshrouded milk is of course the pink-a-palooza yogurt display.

Take a half step to the right and there’s the pink-ribbon-edition Milano cookies, to go with the milk.

In case you spill your milk, never fear: Brawny is in on the pinkwashing, too. 

So is Viva. You’ve got a choice. There’s pink-bedecked TP, too, in case the dairy upsets your tummy. Or in case you’re in the midst of long-term antibiotic therapy for a post-mastectomy infection and feel like your gut has been attacked by a roto-tiller. Nausea and diarrhea from chemo? No problem. Quilted Northern has got your back (side).

If the paper towels can’t contain your spill, never fear: pink Swiffer is here. I know I feel better with a pink Swiffer in my house. If only I could have Swiffered the cancer right out of my chest. Or spiff up the scars left from the multiple surgeries required by said cancer.

And in case you didn’t get enough calories from the milk & cookies, there’s always chocolate:

Pick your poison. Literally.

I guess the candy makers don’t know (or don’t care) that the majority of women fighting breast cancer gain weight — I know, how whacked is that??

Need some pampering? How about some pretty pink nail polish? No harmful chemicals in that. OPI’s “Pink of Hearts” is pretty as a picture, and goes right along with the soft, feminine image we breast cancer girls want to project. 

Or, if you’re feeling feisty, try the OPI “Pink Shatter” limited-edition polish.

We’re gonna shatter cancer, one toenail at a time. But wait — don’t put that polish on your fingernails if you’re going in for yet another surgery from breast cancer. The anesthesiologist needs to monitor your nailbeds, and the pulse oximeter may go wonky.

Being surrounded by pink products everywhere is making me claustrophobic. While I’m glad that corporations donate money to “the cause,” I would like to get through the grocery store without being bombarded with reminders of  this dreaded disease. Just in case I wasn’t thinking of cancer at that very moment, BAM! there’s the shelf full of pink-ribbon dog food to remind me. On the off-chance that I was freed from the worry and strife of my cancer “journey” for two seconds, WHACK! there’s the special-edition Morton’s iodized salt to reignite my struggle. Maybe I was consumed with thoughts of the grocery list instead of wondering if the asymmetry of my newly constructed breasts was obvious to a random passerby. Too bad, because KABOOM! there’s the pink-ribbon Downy fabric softener to bring me back to the reality that is living with the messy aftereffects of breast cancer.

All this pinkwashing has jangled my nerves. Maybe I can relax with a glass of cheap wine or a malt beverage. 

They’re for the cure, right?

Forget the yogurt and the cleaning products. Where’s the pink-ribbon-wrapped bottle of xanax, to quell the anxieties associated with fighting a deadly disease? Where’s the pink iTunes gift card to buy some relaxing music when the fear of recurrence grips us?

What we really need to see for “breast cancer awareness” is this: My flat chest after a bilateral mastectomy at the ripe old age of 41.

What we really need to see for “breast cancer awareness” is the array of home-health-care products required by a post-mastectomy infection and the confusion and fear their presences brings into an otherwise peaceful household.

What we really need to see for “breast cancer awareness” is a post-mastectomy infection site, finally finally finally healing after 3 surgeries to excise dead tissue. 

What we really need to see for “breast cancer awareness” is a young woman strapped to a wound vac, to suck out all the toxins and poisons created by a cluster of bad luck in the OR.

What we really need to see for “breast cancer awareness” are photos of brave women who’ve undergone mastectomies yet still pose for portraits, like in the SCAR project.

photo by David Jay

What we really need to see for “breast cancer awareness” are blogs from women like Deborah Lattimore who write honestly and openly about breast cancer, and are brave enough to post pictures like this:

photo by deborah lattimore

What we really need to see for “breast cancer awareness” are women like my blogfriend at The Pink Birdie, who has no use for a prosthesis but bravely faces the world in her post-surgery state. Her post “Awareness on the Move” says it all. Read it, then you’ll know why we rant about pinkwashing, why the bevy of pink-ribbon-bedazzled consumer products upsets us.

What we really need to see for “breast cancer awareness” are instances of women living their lives post-surgery, post-cancer.

googleimages

What we really need to see for “breast cancer awareness” are images of women taking cancer by the balls and saying “Not me, not now.”

 

There. Now don’t you feel  more aware?


Amy’s take

Hi,

It’s Amy H this time.  Guest Blogger, yet again.

Now before you get all worried that something has struck Nancy down or she’s in a morphine haze, puking or both as is the usual case when I blog for her, let me tell you that she is doing just fine…thankyouverymuch!

I have the distinct and unique pleasure of accompanying Nancy on her visits to the famous (or infamous?) Dr. S.  Just very recently, one of “our” visits happened.  Nancy & I connected the day before just to handle logistics.  Here’s the texts so you know how we figure stuff out:

Me on the day before:  “S at 2right?  Lunch?”

Her: “Yes!!  What works for you?”

Me: “Amy p wants to do lunch. you want to pick me up at 1245 and go get that good salad at the brew house?”

Her: “Perfect. Amy P meeting us there?”

Me: “I’ll tell her to”

That’s the extent of our conversation until she rolled in at 12:45 to pick me up…..in the Fiat…just sayin’….but with no top down….I should have picked up on the mood….

Hey, how are you??

“HORRIBLE!!!!” and then Nancy launches into a tirade that you won’t believe about her morning.  I won’t go into details, but let’s just say that things didn’t work out the way they played out in Nancy’s head for that morning, and not because she had unrealistic expectations. THEN she gets a text meant to alert her to some bad business. It was a nudge of sorts, to ask “have you checked this out?”…. again, not going into details except to say that there was a certain “liberty” taken which shouldn’t have been taken….and it affected Nancy….  Let me add that it’s just one of those “times” for Nancy.  And I don’t mean “time of the month,” just one of those times where there seems to be no one who understands the “journey” that Nancy has been on.  She feels alone.  So, the little, everyday, bad times are just the tip of the iceberg.  And then her frustrations with the cancer “journey” make themselves known through the everyday occurrences of her life.  She does such a great job holding things together and then some everyday, seemingly miniscule inconvenience is like the prick of a pin on a balloon.  Just so you know, it’s not an overreaction, mind you, because each of these events is definitely cause for frustration, it’s just that these frustrations allow her the liberty to vent when she typically holds it together.  Does that make sense?

So, we meet Amy P. at lunch.  Anything to drink?

Nancy, “I’ll have a beer.”

Well, alrighty then, twist my arm, I wouldn’t want you to drink a beer all by your lonesome at lunch time.

Hey, we’re sort of in a hurry so we are going to order, too.

Nancy says, “I’m not hungry, I’m just going to go with my beer.”

Amy & I echo, “What? We could have cancelled lunch if you  had already eaten….”

Nancy emphatically replies, “NO!! I need this but I’m just not hungry!”  We had a great girls’ lunch — talking about things, some everyday, some not so everyday.  Most people would look at our easy banter from afar and not realize that at times we were discussing surgery, doctors, treatments at other times carpool, dinner prep AND Nancy’s horrible morning.

We say adios to Amy P. then we head over to see good ole Dr. S!  We are greeted, as usual by Marcy & Brenda, Dr. S’s employees who have become our friends over the past year or so.  Brenda is ready for us to come back to the exam room and calls “Mrs. Hicks?” with a casual smile and ushers us out of the waiting area.  Brenda only uses formalities when other patients are in the waiting room.

Nancy always scoffs at this address when Brenda does that saying, “Puh lease, Brenda, really? It’s Nancy!”

I point out, “Nancy, you know she only does that when there are other patients waiting. Brenda needs to keep up the professional appearances!” (As an aside to the Dr. S. camp blog readers, Brenda is always professional, as is Marcy.  It’s just nice knowing that there’s a familiarity that allows them to give Nancy the comfort of addressing her by her first name.)

Brenda hands Nancy the not-so-customary white paper gown.  What happened to the fancy blue paper gowns?  Things are slightly amiss.  Brenda turns to leave with a chuckle and a twinkle in her eye, knowing Nancy well and her need for the familiar in this still unfamiliar medical world.

Marcy walks in, really to say, “Hi” but with Nancy’s thick file in her arms as the excuse to peek in. “Hey, how are you?” We all exchange pleasantries that seem simple on appearance but truly are fraught with more meaning.  We’ve shared more than the burden of Nancy’s “cancer journey,” and the four of us relish these stolen moments to catch up on each other’s lives outside of Dr. S’s presence and all under pretext of the “patient’s visit.”  I write this so you know how most of the office visits to Nancy’s caregivers go.  They become her friends.  They are the fabric of her life now, too.  Not just mere staff.  She’s concerned about them, bakes cookies for them, inquires about their families, knows their birthdays.

In strides the good Dr. S.  “Hi, Nancy!  How are you?” he asks with a big smile. This is the 4th visit in a row that it is apparent he is in a VERY good mood!  Nancy has barely had time to let us get her into the paper gown–opening to the front.  Marcy quick steps back to the front desk and Brenda steps out of the way in the exam room. Good, he’s on time and we won’t be late for carpool.  He knows how much she hates to wait, and I certainly am glad we didn’t have to resort to slipping a note under the other exam-room door to tell him to hurry up, as we have been known to do.

Nancy replies to his greeting, “I am having a TERRIBLE, HORRIBLE, NO GOOD, VERY BAD DAY.”  (She really didn’t say that but he got the point.)

“Why, Naancee?  Why are you having a bad day?” (sorry, not sure how to put his accent in there.)

I intercept this one, “Well, such and such happened and then something else.”  I actually used the actual incidences.

Then Nancy interjected, “About that something else……” as she discussed in more detail the latest angst of the day.  It was a bad day, mind you.

Dr. S slipped into exam mode, eyeing Nancy’s reconstructed body with a critical gaze.  I am amazed at how Nancy’s body continues to heal.  It’s been 2 weeks since I’ve last seen her in all her glory and the “17 inch scar–and I’ve measured it!” looks like the crease that your underwear would make on your tummy if it was too tight.  Really amazing.

Dr. S. steps back, looks at this, palpates that, getting a figure on how he’s going to finish the masterpiece.  He mumbles to himself and has me hold a hand mirror so Nancy can peer at his intended adjustments. She didn’t even want to look, but we made her.

As an aside, he mentions that he has had “two messages from us.  One from you.” Indicating me. “And one from her.”Indicating Nancy.

“When did I message you?”

“You know, you were going to meet me in Denver!”

“Huh?”  Come to find out our good doctor has misinterpreted his messages.  Nancy and I are planning to attend one of his local conferences on the fat transfer process and he thought I was meeting him at his recent Denver conference.  Yeah, right.  I’m a stay at home mom.  I don’t have the time or the budget to be hopping around attending the fat transfer conferences of fancy schmancy plastic surgeons outside of the Houston area!  And besides, I’d only texted him that one time when he was in New Orleans and I had a restaurant recommendation for him–which he took my advice on, I might add….

He quickly changes gears, “So, Nancy, you know…about this bad day….”  He then goes in, and with the gentleness of a long-time friend, conveys to Nancy what I’ve long known are his feelings. “You know, I could not have done the work I’ve done, if you were the type of patient who didn’t do her work.  I have been able to stand by you KNOWING that you were going to do your homework and do what I asked you to when it comes down to what matters.  You have allowed me to do my best. You know, Nancy, this day is just a bad spot, and that situation is just a situation.  If you allow it to control you then you have ultimately lost control and that’s not the Nancy I know.”  He went on to wax philosophical about a situation with a former patient and also his insight on the infection that Nancy had.  But ultimately it was the highest compliment that he could have ever paid her.  I was struck by his gentleness, sincerity, kindness and, dare I say it? Love.

In the midst of this conversation he had been commenting on her skin and I agreed with his assessment.  Dr. S doesn’t think he’s going to have to cut  and stitch an area on her revision because Nancy’s skin is so resilient.  He will just make some adjustments internally and that’s it, no cuts necessary.  Her skin will adapt.  Nancy will adapt.

I look back and Nancy’s eyes give her feelings away.  All the talk about how good the newly constructed chest looks was too much. It was the tipping point in this already-terrible day. ‘YOUJUSTDONTUNDERSTAND!!!!’ these eyes are shouting, and nearly overflowing with the tears that are threatening. “That’s easy for you to say with you both sitting over there without all of THIS going on!”  indicating her body. She actually verbalizes this. It’s a statement and a challenge. She adds that if the shoe were on the other foot, and she was looking at Dr S’s masterpiece-quality work on someone else’s body — anybody’s body but hers — she too would say it looks great. But it’s her body, not someone else’s. And no matter how good the masterpiece is, it’s never going to be the same. She has had ENOUGH of this day!  I know enough to steer Dr. S’s attention from her so she can blink her tears away without him seeing her angst.

He finishes the conversation with another compliment about her resilience and strength and then tops it off with a decision on a final revision date.  Oh Happy Day!  A FINAL revision date!  Did he say final??

We wrap up the visit with some yada yada yada and signatures over surgery paperwork, scheduling our next visit—Marcy kindly penciling us in so we can make it out again next time for carpool.  Marcy confiding to us in a whisper after we inquired about her. Nancy making some smarty pants remark about how she’ll cry in front of Dr. S over her dead body.  I called her on that one, “Oh yeah?  You nearly did it today!”

“Could you tell?” she quickly inquired with concern.

“I could….but not him.”

On the way home I could not even convey to Nancy how she is so right.  We aren’t in her place.  We truly DON’T understand–even those of you on your own “cancer journey” can’t really understand her unique “journey.” I hate that she feels so alone at times, probably most of the time. But we are here.  Trevor, her kids, you, me, all of us.  Even Dr. S.  And we all love her.


Facing the facts

I get a daily email with a breast cancer truth every day. Daily. Every day. Like when someone says 8 a.m. in the morning — daily every day. Today’s truth was about the rate of mortality being higher for African American women. I’m not African American, but I read the details anyway, because anything having to do with breast cancer has to do with me.

The emails come from the National Breast Cancer Coalition, and there are some interesting facts. Well, interesting to someone whose life has been affected by breast cancer. I’m unfortunately in that camp. Boo. I don’t want to be in that camp, but I can’t unring that bell. No one asked me what I want, sadly. Once you’re diagnosed, no matter how much you fight it or try to ignore it or don’t want it, you’re in that camp. So ya gotta deal with it, and one of the ways I’ve dealt with it is to immerse myself in fact, figures, and information. Not saying that’s the right way for everyone, because I know some people like to stick their head in the sand. I’m not judging the ostriches, just saying that they do in fact exist.

googleimages.com

Because I’m not an ostrich, and I feel the more info I have the better armed I am, I like all the facts, figures, and information. Even the scary parts. I tell my doctors all the time, just give me the info, including the ugly stuff. I can handle the hard truths, I just need to know that I’m dealing with. I do much better having the information. Like the statistic that says 65 percent of those diagnosed with breast cancer will have a recurrence. It’s scary, but I like knowing it. I need to know it. For me, the unknown is much scarier. The permutations my wild imagination comes up with are way scarier than the actual facts.

I fully expect a recurrence.

Not because I’m looking for the Grim Reaper or because I’m negative — neither of which is true — but because I’m realistic. Being diagnosed at age 40 with what was for me my second cancer (melanoma was the first), I fully expect to have to face this beast again.

With both the melanoma and the breast cancer, I got off easy, relatively speaking. The post-mastectomy infection gave me a run for my  money, but the cancers were easy to treat; the surgeries were awful but temporary. Man, that infection was a bitch. Who’d have thought it would be worse than the cancer and subsequent treatment? But it was.

But back to recurrence.

I fully expect it.

In fact, I recently mentioned that among a small group of my besties and was met with utter silence. Not one person piped up to say, “Nah — you’re crazy. You beat it and you’re done. Nothing to worry about.”

googleimages.com

Chirp, chirp, chirp went the crickets in the abysmal silence of no one sticking up in disagreement with recurrence.

I’m no fool. I know that having one cancer puts a person at a much higher risk of contracting another type of cancer (exhibit A: melanoma >> breast cancer). I expect that it’s coming. At some point, at some time, it’s coming. I can do the math and know that I will spend more years fighting cancer than I’ve been alive. That’s one of the many things that just plain sucks about being diagnosed young. Or young-ish, in my case. Yes, there are tons of people who are much younger than I was at the time of diagnosis. Hell, some of them are even kids. Little bitty kids, fighting a big, nasty disease. Plenty of people are young, not young-ish, at the time of diagnosis. And they will spend even more years than I fighting the disease.

Suck.

I had a fancy test shortly after my diagnosis, to identify the characteristics and risk factors of my cancer. The Oncotype gave very specific and very personalized information about my cancer. The test looks at a group of genes (21 genes total: 16 cancer genes and 5 control genes) to see what their activity level is. This test provides additional information — beyond the usual standard measurements such as tumor size, grade, and whether lymph nodes are involved — to give each woman a score that correlates to how likely it is that her cancer will return. The idea is to help make decisions on cancer treatment (chemo? no chemo? if so, what type and for how long?). Very useful information. Expensive (nearly $5,000) but useful.

oncotypedx.com

My risk factor for recurrence of this same cancer, according to the Oncotype, was low. Really low. Single-digits low. But that’s little consolation to me. It’s nice to see that low number on the report, but I’m no fool. I know how haywire cancer cells can be, and how one cancer cell is all it takes to wreak havoc in one’s body.

I think it’s safe to say that most people who have stared down cancer think about recurrence. I remember wondering how in the sam hell I would ever get through what was the worst thing in my life, and once I was through it, thinking how nice it would be to consider myself done, but no, there’s the thought of recurrence. I think about it every day. Even after everything I’ve been through.

Every single day.

The current pinkwashing that permeates every October gives the impression that once you fight your cancer battle, you’re done. It’s a glamorous, sexy disease, wrapped in blush highlights and tied in with lots of fun products, all wrapped up in a cute pink ribbon. Sure, you may lose your breasts and your hair, and you will most likely gain lots of weight from the hormone therapy necessary to fight this bastard. You may lose any shot at positive self-esteem and a happy body image, and your life will never be the same. You may well make yourself crazy with the wardrobe challenges involved in dressing around a mastectomy and reconstruction, and you may well be bankrupted from the surgeries and treatments (even with good insurance), but once you’ve slayed that beast, you’re done.

Right?

If only.


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