Paying It Forward


Drawing by Allie Brosh, blogging at Hyperbole and a Half

Still Here To Bitch About It

Two years ago today, four words changed my life. Those words were, “Your biopsy is positive.” Words like that are very powerful. I wouldn’t be blogging if they weren’t. But in all honestly, I’ve heard a lot of other words in my life that have been a lot more immediately heart-breaking. Words like, “We found your mother; she’s dead.” Or, “I can’t be with you anymore.” Or, “Nancy won’t be coming in to work today. Her son went to that Station Nightclub that burned down last night and he never came home.” Or even, “A second plane has crashed into the World Trade Center.” All of these words took my breath away, altered the path of my life in some fashion, and left me with profound sorrow for months to come. But being told I had breast cancer didn’t break my heart. It broke something; it just wasn’t my heart.

There was nothing I could do to bring my mother back or to stop the 9/11 tragedy. But finding out I had cancer was just the beginning of a long journey, one that required me to chart a course of action. I would hear a lot of words over the coming weeks, advising me to endure one misery or another, a lot of them surprisingly unhelpful. A lot of the words I really needed to hear remained unspoken. Words like, “We’re actually going to cut off half of your breast, but we’re calling it a lumpectomy so that you’ll be horrified several weeks later when the swelling finally goes down.” And, “We’re going to fry you with ionizing radiation that might not in fact stop your cancer from coming back, but which will in fact leave you with permanent scar tissue.” And certainly no one said, “We’re about to change your life permanently, destroy your energy for the next two years, and force you to stop working full-time forever. But we’re not going warn you of these possibilities beforehand or help you deal with them afterward.” However unpleasant it would have been to hear these words or words like them, not hearing them prevented me from making fully informed decisions about my treatment. Instead, I was denied the opportunity to make different choices, choices that might have lessened the impact cancer has had on the rest of my life.

Do I sound ungrateful? I’m not. I’m very grateful to have a “rest of my life.” But I really had no idea what I was in for two years ago. I had no idea that I would only just now be starting to feel like myself again. I had no idea that I would only now be able to get through a day of work without having to collapse for the rest of the night at the end of it. I had no idea that radiation does not, apparently, kill off the cells that initiate breast cancer tumors, but it did leave me with lasting cording and shoulder pain and scarring on the outside of my lung. I had no idea that people who don’t have chemo end up with the loss of brain function usually called ‘chemo brain,’ or that there is something called cancer-related fatigue that is widely prevalent and poorly understood. Or that I would have to give up a full 20% of my income because of all of the above, but at least still be able to work at all.

When I’m feeling more philosophical, I sometimes think that if there is a Grand Design, then perhaps I was guided down this path of unnecessary shock and awe as ineptly as I was precisely in order to get me pissed off enough to start this blog. It has given me reason to try, as a writer and health care clinician, to ensure in my own small way that other cancer patients are not treated so inadequately. When I hear from someone who has read one of my posts and thanked me for explaining something her doctors haven’t told her, I feel like I’ve managed to turn the sour parts of my experience into something useful. And that helps me recover from it, bit by bit. But I wouldn’t have been able to heal at all if there weren’t other people out there who did the same for me.

I’ve said it before and I’ll say it again. I would not and could not have survived this entire sleigh ride had it not been for the dozens of women and men I’ve met in cyberspace on cancer forums and blogs. Before cancer, I did my social networking the old-fashioned way, i.e., mostly in person. But when I signed up with the online community at BreastCancer.org, No Surrender Breast Cancer Foundation, and other cancer networks, I discovered what is best about us humans. I cannot overstate the difference it has made in my life these last two years, and continues to make, to encounter the generosity, candor, humor, righteousness, wit, empathy and affection of all the women and men who shared all that and more with me and others in peer forums and on blogs. Thank you and bless you all. So many of you have become lifelong friends. It’s because of you that I am still here, with some sanity intact. It’s because of you that I scour the web, and sign up for research journals, and slog through articles and studies to understand some piece of this experience and bring that understanding back to you.

Because when you are fighting cancer, the most powerful and poignant four words you can hear are, “You are not alone.”


P.S. Thanks, Coco, for “Snoopy’s Happy Dance.”


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Standing In The Light

Battling Mutant Pumpkins

Next Saturday, on July 24th, it will have been two years since I was told I had breast cancer. It’s a strange sort of anniversary. At its most fundamental, it marks the triumph of life over death, and I’m delighted to be here representing us lifers. On the other hand, it marks a day of reckoning, the day that transformed the somewhat abstract notion of mortality into a tangible personal reality. Starting on that day in 2008, I lost the ability to take my body or my health for granted, and I could no longer regard medical care as just so much preventative maintenance. And with that realization, an awful dualism arose between my body and my psyche. However irrational I knew it was, I couldn’t help feeling like my body had betrayed me somehow, that my breast had treacherously allowed my body to be invaded by an alien life force.

The problem with feeling that way is that, however apt the metaphor, neither Ellen Ripley nor Princess Leia showed up with laser blasters to battle the alien for me. And despite all those radiation treatments, I didn’t turn into Ginormica, imbued with special powers that enabled me to battle it myself. The only part of me that swelled up to several times its normal size was my beleaguered right breast, which looked more like a mutant pumpkin by the time treatment was done. Despite these deficiencies, I did win the fight — so far anyway. And on balance, any day you beat cancer is a day worth celebrating. Yet the thrill of it is more the sobering delirium of relief, of having dodged a bullet which might not miss next time. The effort feels more like hand-to-hand combat than accomplishment, with all of the post-traumatic weariness to go with it. You’ve been through a war, and like the soldier you are, you share a bond with your sister and brother warriors unlike anything you share with anyone else. By all means, we cancer survivors deserve a parade, but we just might be marching with crutches and compression sleeves instead of special ops monsters or Han Solo.

Bittersweet

There’s an acute sort of emotional memory associated with a life-changing event that seems to reprogram your DNA. Even when you are not consciously thinking about it, your body remembers it, your cells remember it, and you feel yourself reacting to it before you know why you’re reacting. For years after my father’s death, which occurred two days after Thanksgiving when he had a fatal heart attack, I’d notice an amorphous sense of dread creep up on me by about Halloween. The feeling would spiral and intensify until I ‘remembered’ what it was that had happened a few years earlier. The first year or two after his death, I would be devastated all over again in November, and it would take all my willpower not to succumb to inertia. Gradually, over succeeding years, the intensity diminished, until finally I learned to remember my dad with a poignancy that still hurt, but sweetly.

The difference between that kind of loss and surviving cancer is that the dread never really lets up. Plus, there are legitimate reasons for that dread. It may recede to a large degree, and eventually you may actually be able to get through whole swaths of time forgetting that you ever had one of the more notoriously recurrent forms of cancer. But your next oncology check-up will bring it all back. For the rest of my life, there will be a part of me with an irrational hatred for certain addresses in Providence, addresses occupied by doctors’ offices, hospitals and cancer treatment centers. I’ve even come to hate a certain highway exit off of I-95. And picking up the phone to make an appointment for my next mammogram can make me feel faint. Once upon a time, mammograms were innocuous, if annoying, annual events that were simply part of the ritual of my annual physical, evidence of my being a conscientious steward of my own health. Of course, the reason I was getting them in the first place was to rule out cancer. But I certainly wasn’t worried about actually having it. Breast cancer? Me? Nah.

Better Get This Party Started

In the wake of all this ambivalence, I thought I’d start the celebration a little early, because I honestly don’t know how I’m going to feel by next week. I might feel like driving up to Boston and dancing in the streets, where I can hug a sistah and friend who will be wearing out some new shoes walking in the Susan G. Komen 3-Day Fundraiser. But I might also feel like laying low with a nice IV of Versed, taking a long dreamless nap, and skipping the whole damn thing. That way, I won’t have to relive that moment after I was told I had cancer, when I wanted nothing more than to crawl under the covers and never come out.

Who knew that even at age 54, a person can experience a loss of innocence? Just when I thought I’d pretty much been there, done that, life threw me the cancer curve ball. And you don’t ‘catch’ the cancer ball. You endure it. And with a little luck, you outlast it. Discussions of heroism in the face of cancer always make me squirm now. It’s not like any of us has a choice. I didn’t sit down, open my metaphorical hope chest and sprinkle the contents around like some pink fairy. I just put one red high-heeled foot in front of the other.

Pink This!

I will admit that perhaps my approach to fashioning the ‘right’ attitude was unorthodox. Simply put, I decided to act bratty. Cancer, I figured, is a big fat bully. And there’s nothing that forces a bully to step back like yawning in its face. Think you’re gonna make me feel bad by making me sacrifice a boob? Well, guess what, Jack? I’ll just show off my legs instead. Make me get tattooed for radiation? Then I’m getting myself a tattoo for my birthday and I’m gonna show it off and it ain’t gonna be no pink damn ribbon neither. Whoop my butt with poison and make me feel like a dishrag? Then I’m gonna lose the dishrag, wear a short dress and paint on my game face. Yo, cancer! I started a blaw-awg! And, oh yeah, I got on the radio and talked about YOU, turkey. Your cover is BLOWN, baby. Nyah, nyah!!

So, here I am two years later. And that bully ain’t showed its ugly face again. Don’t mean it ain’t gonna try to come back on me. But I’m ready. Got my gladiator shoes on, and I’m standing squarely in the light, ready to kick butt. Or, as my little-rock-sister-in-attitude says, “I’ll be burning rubber, you’ll be kissing my @ss.” Take that, mutant pumpkin!


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Click And Be Powerful

Sooner or later, each of us will find ourselves in a doctor’s waiting room with a clipboard in our laps. On this clipboard will be a very long form or three regarding our medical history. You will be asked if you’ve ever suffered from conditions you’ve never even heard of, and will puzzle over whether having a headache once in a great while counts as a regular condition.

Then you’ll come to the section about cancer. The thing you’ll notice about this is that cancer has its own section in the first place. The next thing you’ll notice is that you will be asked whether you are related to anyone who’s had cancer. If you answer yes, you’ll be asked more questions. The more yes answers, the more questions.

The reason for all this is, of course, the fact that particular types of cancers tend to run in families. If your Aunt Jane died of melanoma and your older sister who plays tennis has had a few cancerous moles removed, then you’ll understand why your doctor might encourage you to have a regular check-up with a dermatologist. But you probably won’t worry about every single freckle or rash, and you probably won’t get a genetic test to determine if you should use sunscreen. That’s because most cancers, even the ones with predictable lifestyle risk factors, are ‘sporadic’ in occurrence. They have no certain pattern to their incidence and no obvious genetic mutation that relates to them.

Breast cancer, however, is different. There are hereditary genetic mutations associated with the occurrence of certain types of breast cancer, as well as with ovarian cancer. These mutations appear most often in genes called BRCA1 and BRCA2. There are tests to detect them and to assess your likelihood for developing cancer from them. Even if you develop breast cancer with no warning and no apparent family history, you may be tested to see if you have these mutations. If you do, your sisters or daughters or nieces may want to be tested as well.

The average person cannot possibly navigate the minefield of hereditary genetic mutations without a lot of help. That’s where FORCE comes in. FORCE stands for “facing our risk of cancer empowered.” It’s an organization that’s a little like having Princess Leia on your side with a loaded laser blaster and a bunch of Jedi warriors backing you up. It provides women with the power of resources, information, support and options for exploring their risk for hereditary breast and ovarian cancer and determining what to do about it.

By clicking on this icon today, tomorrow or Monday, July 12th, you can give FORCE a chance to receive a significant infusion of funds through the Chase Community Giving Program for 2010. Chase’s Community Giving sponsors “will donate $250,000 to the Charity receiving the most votes, $100,000 to each of the four runner-up Charities, and $20,000 to each of the remaining top 195 Charities receiving the most votes at the end of the Program; provided each winning Charity meets all eligibility requirements and standards. Sponsor will also donate combined total of $500,000 to the eligible Charity or Charities who have received at least one vote and are chosen by an advisory board designated by Sponsor (the “Advisory Board”).” Clicking on the pink and teal icon will take you to a page where you can cast your vote for FORCE. Voting ends 11:59:59 p.m. ET on Monday, 07/12/2010. The votes will be tabulated on 7/13/2010 and the 200 top-voted organizations will be awarded their share of the donations.

It’s daunting to face the knowledge that you have a high risk for developing cancer. But it also gives you the power to head off the cancer monster before it strikes. So, warm up that index finger and click to help FORCE help a sister. Because the sister you help might be you. Hopefully, most of you will never need their help. But if you ever do, may the FORCE be with you.


Here’s a down-loadable PDF Fact Sheet from the National Cancer Institute about BRCA testing and cancer risk.


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