Never, never, never

Posted: October 21, 2011 | Author: | Filed under: Uncategorized | Tags: , , , | 3 Comments

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

Posted: October 20, 2011 | Author: | Filed under: breast cancer, cancer fatigue | Tags: , , , , , , , | 8 Comments

Cancer is so not fair.

It just sucks.

It’s such a bitch.

I hate it.

One badly timed comment; one errant remark.

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

Just one comment.

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

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

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 All of this will be superseded by yet another recovery.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

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

Is that really so much to ask?

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

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

Sure wish someone would have warned me.

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

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

Silly, silly me.

Thank you, google images. 

13 facts about MBC

Posted: October 19, 2011 | Author: | Filed under: breast cancer, cancer fatigue | Tags: , , , , , | 4 Comments

 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.

Swing for the Cure

Posted: October 17, 2011 | Author: | Filed under: breast cancer | Tags: , , , , , , , , , , | 3 Comments

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

Posted: October 14, 2011 | Author: | Filed under: breast cancer, cancer fatigue | Tags: , , , , , , , , | 5 Comments

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

Posted: October 13, 2011 | Author: | Filed under: breast cancer | Tags: , , , , , , | 3 Comments

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?


Amy’s take

Posted: October 10, 2011 | Author: | Filed under: breast cancer | Tags: , , , | 7 Comments

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

Posted: October 9, 2011 | Author: | Filed under: breast cancer | Tags: , , , , | 12 Comments

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.

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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.”

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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.

Pink party!

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

The only thing missing from this party was my cancer.

HA!

It was a great party (especially since the cancer — and its nasty friend mycobacterium — were nowhere to be found). Last year I had one foot in the grave and had a very small party to thank my friends who’d helped me in ways large and small through the most difficult experience I’d endured. The ways in which they helped were as varied as they are: a math teacher, a PE teacher, a realtor, a crude oil buyer, a builder’s sales &  marketing guru, a former hair stylist, a psychotherapist, a transplant nurse, a budding photographer, an HVAC business owner, a surgeon-wrangler, and several kick-ass SAHMs.

1st annual Pink Party! girls

This year, the infection is gone, the antibiotics are history, and the party is on, baby! The rules were the same this year: wear pink, eat, and drink. And celebrate life. Really celebrate life.

Last year, I felt pretty rotten, and wasn’t much in a party mood. It had been a long, miserable summer, and the misery dragged into the fall (or what passes for fall in south Texas). Who would have thought that facing cancer and having a bilateral mastectomy would be the “easy” part compared to the post-surgery infection? Now I know that the battlefield is treacherous, and the presence and comfort of good friends go a long way.

Things were certainly much brighter this year.

I’d had a bad week, though, leading up to this year’s Pink Party. A really bad week. The last few days were emotionally charged, big time. Drama on the tennis court, histrionics from a stranger blogger, and mean girls at play in my social circle sucked up more time and energy than I realized. Factor in an early-dismissal day from school on Thursday, and this party girl was running behind schedule.

Frazzled and scrambling (and more than a little pissed off at all the drama), I got my party prep done by the skin of my teeth. A custom piece of artwork rolled out the pink carpet for my guests (thanks, David!).

The well-dressed flamingo started happy hour before the guests donned my door. 

Some pink bling for the front door, and the entrance is all set. 

Don’t forget to read the plant tag!

Having a party gave me the motivation I needed to revive my sagging, heat-stroked flowerpots, too. We need some mulch, but there was no time for that. Get the plants in the pots and move on. The ladies will be here soon! I’m oh so grateful to my superstar gardener. Thank you, Eduardo!

Flowers on the outside, flowers on the inside.

Pink gerbera daisies and blush baby carnations on the kitchen table…

…and pink roses on the side table. Halloween decor mingled with all things pink is kinda weird, but the eyeball candle reminded me of the mycobacterium that disrupted my life so mightily and completely last year, and it provided a nice dose of reality to my pink plans.

Macy added the chalkboard sign…

…and Christy provided the other sign. Love it!True, so true! Pink’s not about Komen at my house, it’s about the party!

Once the feather boa goes up on the chandelier, it’s time to start the party!

And a close-up of the Hope angle floating just under the boa.

Her message was echoed by the sign on top of the fridge.

Another boas and some sparkly butterflies over the kitchen table.The paper lanterns were new this year.  Next year, we’ll light them.

I’m just sick that I didn’t take any pictures of the food this year. Once my girls started arriving and the drinks started flowing, I completely forgot. Let’s rewind to last year’s food and pretend. 

The menu was pretty similar this year: mostly pink foods. Salad with roasted beets, peel & eat shrimp, smoked salmon with capers, hot crab dip, strawberries & raspberries, and pink-ribbon sugar cookies with pink frosting. Oh, and the Corn Thing. Can’t have a party without the Corn Thing. It’s not pink, but it’s on the menu anyway. 

The corn thing (in the mostly empty dish) is always the first thing to go.

The other thing I completely forgot to do this year was give a toast. I wrote a few words about each party guest and had planned to tap my glass to shush the scintillating conversations and deliver the toast. Completely forgot.

Could this have had something to do with it?

Maybe.

A little.

We had a most excellent bartender.

Ok, girls, here ya go:

Amy H: you have led by example and taught me how to give from the heart, and to give what people truly need. You always seem to know just the right thing to say, like the dog whisperer, only for people. No one can wrangle Dr S like you!

Amy P: the abundance of food you delivered to my doorstep sustained both my body and my soul. Knowing that a good meal was right around the corner was such a relief, and it allowed my addled brain to focus on things like wounds and puss. Your nursing expertise was a huge help as well, and I’m grateful for the late-night house calls.

Christy: you went from “my babysitter’s mom” to “my friend” in one giant leap. You walk the walk and are the epitome of “it’s just what you do” and are the one person who cusses as much as I do. I appreciate so much your unflinching honesty and your endless compassion, to people and animals. My life is so much better with you in it.

Claudine: Through your diagnosis, I have come to understand the overwhelming desire to try and ease the patient’s burden. I’m honored to be in the trenches with you.

Jenny: you’re the trail-blazer and my mentor in all things survivor. You lifted me up each time you sent me a card and each time you reminded me that “this is temporary.” You have provided a stellar example of how to live a rich and full life after cancer. Can’t wait to be celebrating my 12 years of survivorship, like you, my friend! And many more.

Jill: you have a knack for making all the right gestures and for making all the right things happen. Whether sharing a meal or raising a glass, time spent with you is always a rich reward.

Julie: my wacky friend, I love knowing that no joke is too raunchy, no comment too catty to utter in front of you. What freedom to be exactly who I am — the good, bad and the ugly — with you and know that you love me just for being Nancy K.

Laura: no one else can talk me into giving up so many hugs. Each time you took time out of your insanely busy schedule to check on me, I was reminded of what a loyal and special friend you are. And a special thanks for all the electronic medical advice you provide…whether via text or email, I know you’ll send me the right answer.

Mary: you make it seem so simple to give freely and unconditionally, and every time I’ve asked you for something, you’ve not only said yes, but you’ve agreed with a huge heart. To know that you have my back, whether for carpool or child-care, is such a comfort.

Melanie: you reached out and seized upon my hair emergency. Offering to take care of my hair at home while I was healing is something I’ll never forget. By figuring out exactly what I needed, you taught me that accepting help from others isn’t just ok, it’s pretty great and mutually beneficial.

Melissa: When we first met, when P and H were in kindergarten, I knew I wanted to be your friend. Your wit and style were (and still are) so appealing, and I enjoy every minute I spend with you. You’re a pretty kick-ass lizard-sitter, too!

Michelle: My champagne sister! What a beautiful thing to find someone who is always looking for a reason to pop that cork. Not only do I love drinking bubbly with you, I also really like to stand next to you. Dynamite truly does come in small packages, my friend.

Nicole: your carefree spirit reminds me how vital it is to enjoy life and to not sweat the small stuff. My type-A self basks in your laissez-faire attitude and I aspire to live life with gusto, just like you.

Sharon: your visits were always perfectly timed: just when I needed a pick-me-up, you would appear on my doorstep. I’ve learned a lot from you, in Chinatown and on the tennis court.

Staci: from Day 1, you kept me grounded. I knew that if I needed to go off the rails, you’d get me back on track and charm everyone we met along the way. You taught me how to grease the wheels and to take time to talk, really talk, to the people who come into our lives. And somehow, all these years later, you & I always have something to talk about.

Yvonne: as my in-house counsel, you remind me regularly that it’s ok to feel what I feel and think what I think. You bring a calming presence to my calamitous life, and your good sense and fun-loving ways always make me smile. Just when I am feeling adrift, you call saying “I miss you!” and that makes my heart happy.

I’m already looking forward to the 3rd annual Pink Party, and I’m smiling really big at the idea of us still gathering every year in October when we’re old and grey. Hopefully by then, breast cancer will be a thing of the past — but the party will go on!

Blogging is the last thing I should be doing right now…

Posted: October 7, 2011 | Author: | Filed under: Uncategorized | Tags: , , , , , | 10 Comments

But in between tennis drill and the next chore on the list, I stopped by the mailbox. Haven’t been all week, and the box was crammed full. There’s the usual overload of flyers and junk mail, then a box from Amazon containing the book Payton has been waiting for, and way in the back of the box, a lovely surprise for me. 

I love getting surprises in the mail. 

I’m especially in love with the “Air Mail” sticker. Something about that “Par avion” seems so exotic and speaks of faraway lands interspersing with the everyday aspects of my home life.

Even the return address sticker is beautiful and exotic.The package was so pretty I waited a while to open it. And y’all know I hate waiting. 

The “Petit Paquet” label was so cute and charming that it deserved its own photo. Thank you, Maria, for such a lovely surprise in my mailbox.

After a sufficient waiting period (5 minutes or so, which is a long time for someone as impatient as me), I tore into the package. What a cute little box I found inside. 

I would have been perfectly happy to have a “build your own rocking rabbit” but what was inside the cute little box was even better.

It’s the artwork I ordered from Maria Pace-Wynters.

Oh. My.

It’s even more beautiful in person, and her blogsite blows me away every time I look at it.

I had to just stand there and stare at the cellophane-wrapped pieces for a minute.

And then I tore into them.

Couldn’t get them open fast enough, so I could behold their beauty and revel in the explosion of color.

I came across Maria’s artwork randomly, as I searched google images for an adornment for this post, a while back.

I promptly fell in love with her art. The colors. The composition. The little girls. The foliage. The dreamy quality. I could go on and on, but I’m gonna let the art speak for itself.

The smile on this little girl’s face is such a good antidote to the doldrums, the bad days, the things that go bump in the night. I sure wish I’d been gazing upon that face Wednesday after my terrible, horrible, really bad, no-good day (more on that later, once the stink of that day is fully gone and I can write about it without cussing too much).

Macy picked this one out, for her new room. Well, it’s the same room but we are going to re-do it. Give it a makeover because she refers to it as her nursery. Now that she’s all grown up and doesn’t need lilac walls and a lime-green ceiling, she’s trending toward a bolder wall color, like the vibrant blue of the birds in this pieces. She also really loved the “body art” (yes, she used that term, and she knows who Kat Von D is, so I’m scared, really scared). Nothing against Kat or the inked population, just seems a little freaky for my girl to be so well-versed at such a young age. 

I really did have every intention of putting this print on Macy’s wall, once we lose the baby paint and get the big-girl stuff on, but then I noticed how lovely it looks against the goldenrod paint of my dining room.

Oh, and it looks even better against the fireweed paint in my kitchen.

Come to think of it, they all look great in the kitchen.

I love how the girl’s red hair is set off by the red paint.

Oh, hers too!

But wait, they look pretty great against the olive green of my office, too.

I think I’m gonna need some more artwork.

 

 

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