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 All of this will be superseded by yet another recovery.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.

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 reality of BC

Posted: October 11, 2011 | Author: | Filed under: breast cancer | Tags: , , , , , , , , , | 9 Comments

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?

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!

The best photo

Posted: October 2, 2011 | Author: | Filed under: Uncategorized | Tags: , , , , , | 2 Comments

I posted tons of photos in yesterday’s post from the Race for the Cure. Many of them were touching, some were funny, a bunch of them were moving, and a few were even tear-inducing. My head is still full of the sights & sounds of the event, and frankly I didn’t expect it to affect me as deeply as it did. I’m still processing the swirling emotions involved in participating in the race as a survivor. Maybe I will sort these feelings out, and maybe I won’t.

One photo I did not post, however, demands to be seen. It was in the Houston paper this morning, and my race buddy texted it to me before I saw it myself. I’ve been thinking about it all day — through 5 sets of tennis & beers at the club, during my shower, while I started laundry, and as I absent-mindedly helped Macy with her career day project for school, then some more as I scrolled through the Chronicle’s online photo gallery of yesterday’s race.

So without further ado, here it is — the best photo from the 2011 Houston Race for the Cure. Photographer Mayra Beltran outdid herself with this shot. 

It’s not a gift, people

Posted: September 28, 2011 | Author: | Filed under: breast cancer | Tags: , , , , , , , | 13 Comments

I ran into a woman at the gym who I hadn’t seen in a while. She didn’t know about my little bout with breast cancer, and when she asked what I’ve been up to, I told her. I told her the truth, that it was a simple cancer that was caught early and is highly treatable. The cancer was pretty simple, but the post-mastectomy infection was very complicated. I’m still dealing with the mess from that damned infection.

She asked a lot of questions, trotting out the usual suspects. I don’t mind the questions, and I don’t begrudge her curiosity. Here’s how the conversation went down: How did you know you had cancer? I didn’t. At my annual well-woman exam my OB-GYN found a lump that I never felt, even when she put my hand right on it. Why didn’t you do a lumpectomy instead of a mastectomy? Because I wanted to slash & burn each and every cancer cell in the area. Do you regret having chosen such a drastic surgery? Nope, not one bit. Turns out there was cancer in the other breast, that didn’t show up in any of the pre-surgery testing. Do you have a family history of breast cancer? Not so much. My cousin Cheryl had it nearly 20 years ago, but my mom and her sister both died of different cancers. How old was your mom when she died? 67. Way too young, and not a day goes by that my heart doesn’t ache — some days physically but mostly it’s mental — from missing her, and while the grief certainly isn’t as raw after nearly 6 years, I don’t think I’ll ever stop missing her. How did you hide it from your kids? I didn’t try to but instead explained everything and reassured them that my cancer wasn’t going to kill me like YaYa’s killed her. 

It was a perfectly normal conversation — well, perfectly normal now that I’m among the 1 in 8 women who will contract this damned disease — and then she said it: the one thing that sets my teeth on edge, that makes me feel like steam is coming out of my ears, that makes me have to work really, really hard not to punch someone in the brain.

google images

She said, “It sounds like it’s been hard, but it’s so good to see you working hard in the gym. What a gift you’ve been given. Aren’t you so lucky to be so young and strong, and to have come out of this so well?”

I was speechless. I probably looked like a fish on a hook, mouth opening and closing, wondering what the hell just happened.

Of course I realize she was trying to say the right thing, and in all likelihood was even trying to compliment me with the “OMG, you look so healthy for someone who’s battled cancer” business. I know it’s a sticky situation, people, and that it’s hard to find the right thing to say. But really, is it that difficult?

I’m the absolute last person to look at a cancer diagnosis as a gift. It’s not. It’s a diagnosis of a terrible, terrifying disease. If you think cancer is a gift, kindly remove me from your list of people for whom you shop. I’m out. Yes, good things can come from a bad situation: new friendships blossom, existing relationships are strengthened, the depths of one’s character are carefully examined, yadda yadda. But at the end of the day, if someone tells me I’m better off for having had cancer, I call bullshit.

I recently read an interview with Melissa Etheridge about her breast cancer. She joined the pink ribbon club in October 2004, and has been quite outspoken about her “cancer journey.” I like Melissa Etheridge. I like her blatant feminism and her moxie. She displayed some rockin courage when she performed, bald, at the Grammys shortly after being diagnosed.

blogs.citybeat.com

Things like her bald performance are very good for cancer patients, no doubt. Her decision to not wear a wig forces people to see the harsher sides of cancer, and I applaud her courage in putting herself out there, even if seeing her bald head makes some people uncomfortable. Especially if seeing her bald head makes some people uncomfortable.

But she also talks about cancer about something for which she’s grateful. I guess that takes courage, too, but I have a problem with it. She says that when someone tells her they’ve been diagnosed with cancer, her reply is “Wow, great! Your body is telling you that you can’t go on like this and you have to change. You’ll look back on your disease and say ‘I’m glad that happened to me.’ ”

Well, guess what? There was precious little in my life that needed to change pre-cancer. I exercised 6 days a week, ate heathfully, drank lots of water, avoided toxins, and worked hard to have a balanced and healthy life. Cancer got me anyway. I certainly won’t look back on this — assuming it ever ends — and say I’m glad it happened to me. Uh uh. No sir. No way. I can’t imagine looking back on this and saying I’m glad it happened. That its was a gift. Not in a million years.

Listen, Melissa: someone who’s newly diagnosed — and most likely terrified, freaked out, and shocked — does not need to hear someone essentially say, “Oops, I guess you’ve been doing it all wrong and this is your fault.” I don’t care if you are a celebrity and a Grammy winner. Zip it. No one needs to hear that. And no one needs to hear that cancer is a gift, either.

Sheesh. I’m not even going to get into the whole mess of it’s easy for her to say that, she’s a star and has plenty of money/time/resources/help/clout. That’s a post for another day (even though it’s true). Let’s stick to the idea of how wrong it is to imply that the person with cancer is somehow at fault, that he/she did something or didn’t do something that caused their cells to go wonky and create a shitstorm in their body. Wrong, wrong, wrong.

I will never forget my sweet  breast surgeon Dr Dempsey looking me in the eye while holding both my  hands and saying, “This is not your fault. You did not cause this cancer.” Here’s that part of the notes that Boss Lady took for me that day (doesn’t she have nice handwriting?). I’m not a touchy-feely person at all, but Dr Dempsey is, and she did me a huge favor that day by looking me in the eye and telling me that this is not my fault. I’m all for accepting responsibility, but not here, not when it comes to cancer. It’s not my fault, I’m not glad it happened to me, and it’s not a gift.

Welcome to funk-ville, population 1

Posted: September 27, 2011 | Author: | Filed under: breast cancer, cancer fatigue | Tags: , , , , , , , , | 10 Comments

If you’re looking for a laugh or an inspirational story, you’ve come to the wrong place. I’m in a funk and there’s no amount of lipstick that’ll pretty up this pig (the funk, not me). My thoughts are scattered like leaves falling off a tree (if only that conjured up visions of the russet colors of fall, of leaves parachuting off of trees as they ready themselves for the change of season. That does happen in some parts of the world, but here, in the land of eternal summer, and in this infernal record-breaking, never-ending summer, the only leaves falling from the trees are brown and crackly, dead from the drought. How’s that for a cheery thought?).

I’ve been struggling the last few days. I’m frustrated with the pace of the healing from the latest surgery–yes, I’m a whole lot better, but I want to be done. I’m madder than a wet hen about the effect of the last surgery on my tennis game, and wonder if I’ll ever get my serve back. I’m worn out from the swirling, worrying thoughts of whether I’ll ever have the results I want. I’m both impatient for and dreading the next round of revision. I’m tired of being tired. I’m pissy about the fact that I’m still battered and sore. I’m ready to rip the port right out from under my skin because it catches on my clothes and shoots a sick sensation up my neck that reminds me the damn thing is sewn into my jugular vein. Oh, and it looks weird, too. I’m sick of cancer and all its many fallouts.

Normally, my solution to such a funk is alcohol. Lots of alcohol. Every night is ladies’ night when the funk shows up at my house. But there’s a niggling voice in the back of my head reminding me that alcohol is a major contributor to breast cancer, both initially and in terms of recurrence. And since not a day goes by that I don’t think about recurrence, perhaps I should avoid using alcohol as a balm for my beat-up soul. Dammit. Yet another way cancer has wreaked havoc in my world. If I can’t in good conscience comfort myself with booze, I’m in real trouble. This is no fun.

When I was diagnosed last year, Dr Dempsey gave me a stack of play money. She handed it to me and said it is very important currency. Each “dollar” bill was a free pass to be in a funk. To throw a fit. To have a pity party. As she put it, “to lay in bed watching Lifetime and eating ice cream.” I laughed and thought, pfffft! I won’t need that. I got this. Me and my positive attitude can kick this cancer no sweat. 

While I am happy to report I’ve spent not one day in bed watching Lifetime and eating ice cream since cancer shat upon my head, I’m thinking I may need to pull out one of those dollars. How crazy is that — after all the crap I’ve been through, after seeming like I was finally getting close to the finish line, now I fall into the funk?

Don’t worry, I’ve already run through all the reasons I have to be happy: I’m alive, the worst is behind me, I’m not in the hospital, I have neither drains nor a wound vac attached to me, I’m cleared for exercise, I have great doctors and comprehensive insurance, I have a stellar support network, blah blah blah. Yes, all of that is true, and I know in my heart of hearts that there really is more good than bad  in my life. I know that one day this whole “cancer journey” will be a speck of dust in my rearview mirror as I travel along the grand highway of a happy life. But right now, the funk rules.

Those of you who are within shouting distance have been hearing about it. The frustration, the impatience, the pissy-ness. What you won’t hear, though, is “Why me?” because really, does it matter why? Not so much. What matters is how ya sweep up the mess that’s dumped on ya, and most days I’m armed and ready with the broom & dustpan. But for now, I’m frustrated, impatient, and pissy. And mad. I’m mad, too.

I’m mad that this damned cancer “journey” has to be so hard for so long. I’m all for rolling up my sleeves, gritting my teeth and getting through it. I fully support Winston Churchill’s idea of “If you’re going through hell, keep going.” I believe Eleanor Roosevelt 100 percent when she said “A woman is like a tea bag — you never know how strong she is until she gets in hot water.” I gather strength from Robert Frost telling me “The best way out is always through.” But geez, does it really have to be this arduous? The ways in which cancer robs us are seemingly endless, and breast cancer in particular is a repeat offender, a pathological thief.

I just read this article, “What’s It Really Like to Live Through Breast Cancer?” Today especially, I needed to hear other women’s stories. Valerie, age 52, said that “she needed symmetry. She needed things to be as they should. She needed, after two years of surrendering to the opinions of doctors and the input of the cancer Web, to have an ounce of control over her body.” Yeah, me too.

Renee, age 47, said that “when I had her mastectomy sutures taken out, I asked the surgeon to remove the Sharpie mark she’d made—the black line that went across my ribs like a big smile—and the surgeon asked what line? I pointed. Her eyes got big and she said, ‘That’s your incision, Renee. We opened up your body. We removed a lot of tissue.’ ”

There are lots of Valeries and Renees out there. One in eight women will be diagnosed with this dreaded disease in the United States alone. Worldwide, there are 1.3 million new breast cancer diagnoses a year. That’s more than a million women who will endure this disease. Of them, some 465,000 will die from it. But even those who survive it, like me, will carry the weight of the disease. The physical scars Renee spoke of are nothing compared to the emotional ones. People say we’re lucky that our cancer occurs in a body part that can be removed. True, but it also means that we see evidence of that cancer every day; if I had a kidney removed, I wouldn’t be confronted by the railroad tracks of a long, harrowing journey every time I undress.

Sure, it’s better to be scarred than dead. No question. But being alive doesn’t mean I have to be happy all the time. It doesn’t mean I won’t get in a funk and be frustrated, impatient, pissy, and mad sometimes.

But the funk will pass, hopefully sooner rather than later. Like in Carl Sandburg’s beautiful little poem, the funk, which can come in like a herd of elephants or on “little cat feet,” will overlook my city “on silent haunches,” and then move on outta here.

(thanks to google images for making it so easy to pretty up my blog today)

I buried the lead

Posted: September 24, 2011 | Author: | Filed under: breast cancer | Tags: , , , , , , | 1 Comment

In my post yesterday I committed a journalism felony — I buried the lead. See, the lead is the most important part because it gets the reader’s attention. Typically the lead belongs in the first paragraph, to suck the reader in and encourage him/her to read the whole story. The Weekly World News and The National Enquirer have mastered the art of not burying the lead. I learned about that at the Paul Miller School of Journalism & Broadcasting back in the Dark Ages

I didn’t mean to tease you.

I forgot to mention something pretty important yesterday, and I thank the kind readers who expressed concern. I have been fearful of starting my period, but have absolutely no reason to think that will happen. There’s been no, er, physical evidence; nothing but my own cancer-fueled insanity to make me think this fear will materialize. I could imagine this bout of insanity becoming a sleeper sequel to the 2007 Daniel Day Lewis movie. Instead of the story (based on Upton Sinclair’s novel Oil!) of the early oil boom in Southern California, in this story, There Will Be No Blood.

There will, however, be insanity. Plenty of it.

 

 

 

Daymare

Posted: September 23, 2011 | Author: | Filed under: breast cancer, cancer fatigue | Tags: , , , , , | 5 Comments

What do you call a recurring nightmare that happens while you’re awake? Recurring daymare doesn’t sound right at all. Whatever it’s called, I’ve been having it. Guys, you may want to click on over to espn.com or continue searching for pics of Minka Kelly in a bikini because I’m fixin’ to talk about some lady stuff.

This blog has been my outlet for all things cancer-related: the good, the bad, and the ugly. Sadly, the latter two categories way outweigh the first in this trilogy, but that’s when you grit your teeth and plow right through it. There’s been much discussion on this blog about highly personal things, and lots of talk about boobs (sorry, guys; not the Minka Kelly type of talk). Such discussion is brutally honest and at times of the sort that makes people uncomfortable, but that’s how I roll. I could no more ignore the elephant in the room than root for the Yankees (dang, even the thought of that makes me sick to my stomach). I never learned how to sweep things under the rug or look the other way, and I’m not one bit sorry.

So, with the disclaimer out of the way, it’s on to the recurring daymare. Several times in the last few days I’ve had a moment of sheer panic when I think I’ve started my period. Not sheer panic in the sense of it’s gonna be a gusher and I’m in my white tennis skirt far, far away from any feminine hygiene products. No, this sheer panic is in the form of a stark realization that if I were to start my period again, after 17 months, that would signal the end of my chemically-induced menopause.

And that would be bad. Very bad.

Not that I love menopause, not by a long shot. I especially do not love menopause at the age of 42. Going through the ‘pause a decade early is cruel and unusual on many fronts: it’s yet another reminder of having been diagnosed with a potentially deadly disease while my kids were still in grade school; it sucks to be enduring it years before my peers; and it forces me to face all the unpleasantries of how breast cancer can destroy one’s self-confidence and body image at a time in which one should be living large in the prime of one’s life, to name of few.

But menopause for me means that the hormone suppression — which comes at quite a cost — is working. It means that the hormones that fueled my cancer are gone. There one day, gone the next. Hormone suppression causes me a litany of problems, but it means instant famine for my cancer.

If I were to start my period, it would be a red flag (pun intended) that my ovaries were pumping out the hormones that cause a technically-she-should-still-be-fertile woman to start her cycle. And while I’d love to return to that carefree time in which my ovaries pumped out whatever hormones necessary to keep me from being the withered husk of a woman that cancer tries to make me, it would be very bad news. I’m already on the short list at my doctors’ offices (plural) for being a troublemaker. The last thing I need is to ring my onco-crush, as Trevor calls him, to say, “Guess what? The ‘take one pill daily for five years’ Tamoxifen and the quarterly shots of Lupron aren’t working anymore.” I think that sweet man might have a heart attack. And I’d never hear the end of it from Dr S, who not-so-secretly thinks I invent symptoms to have a reason to go see my onco-crush, all the while shaking his head and muttering about what anyone could possibly see in a young, handsome, fit Peruvian doctor when there’s a much-older, much wiser plastic surgeon to adore.

This latest daymare is a perfect example of the PTSD that cancer patients endure. I imagine there are some cancer patients out there in this big, wide world who finish treatment and declare that chapter of their life closed, never to be stressed over or fretted upon again. I’m clearly not one of them. I hear tell that one day, this nasty cancer business won’t be in my forethoughts all the time but will be demoted to a back-burner status. I’m not there yet, but I’m hopeful. For now, though, the thoughts are there, and the fears are many. Things that used to scare me don’t scare me anymore (namely needles, but having been poked so many times I’m over it. In fact, I gave myself a shot the other day, like it was a normal, everyday event) but things I never knew were scary now scare the fool outta me. If that makes any sense.

The other day I was chatting with a friend in the parking lot in the brutal and ongoing Texas sun, and suddenly I felt something that flipped the switch from “I’m a normal person having a normal, non-cancer-related conversation with a friend” to full-blown panic, just like that. The feeling? Something wet was collecting, not quite pooling but definitely collecting, under my newly constructed right breast, site of the infection of the year that turned an average bilateral mastectomy recovery into a shitstorm, for lack of a better word.

I went on with my normal, not-cancer-related conversation, hopefully as if nothing was wrong, but was seriously panicked inside. Visions of hospital beds filled my head; the hospital smell that I dread more than words can say infiltrated my nose; and I could almost feel the 20-gauge needle puncturing my skin to access my port so the army of big-gun antibiotics could get in and fight the enemy. In my mind, I had been admitted and diagnosed with a recurrence of that damned infection within the span of a couple of heartbeats. In reality, it was a simple bead of sweat.

Ahh, yes, a simple bead of sweat. Such a common character in the land of perpetual sun, magnified a few million times by standing on a blacktop surface. A simple, everyday occurrence in the life of millions of Texans and citizens of other hot (but not as awesome) states in this fine country. One little bead of sweat that most people don’t even notice had the power to instantly transport me back to the hell that is included, free of charge, with a post-mastectomy infection.

Somebody wake me from this daymare.

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