Yesterday walking out of yoga with my favorite girl, I was relaxed and refreshed and thoroughly enjoying the first day of spring break. On our way to the locker room, the woman walking ahead of us turned to compliment my girl on beginning yoga at such an early age. My girl beamed in her ineffable way and chatted politely with this woman while I, the eternal germophobe, washed my hands. My girl gave me a look that said, “Seriously, Mom, the only thing you touched was your own personal yoga mat, so why are you scrubbing your hands like that?” Such is life after a nosocomial infection.
My girl and the woman discussed their most-favorite and least-favorite yoga moves, and after a short debate on the wheel and the crow, the woman told us that she’s been doing yoga for 30 years. My girl’s eyes grew wide at this, and I imagined her picturing herself 30 years from now, a most experiences and tranquil yogi.
Rather than smiling at my girl’s fledgling love for yoga, I was struck by a moment of panic and a most unwelcome thought: Will I even be alive to do yoga in 30 years?
Not to be morbid, but this is life after cancer.
When I was diagnosed at age 40, my breast surgeon told me something that has stayed with me through the worst parts of fighting this disease. Worse than facing the reality of losing both breasts as I faced a bilateral mastectomy at a time when most of my peers were reclaiming their bodies after years of childbearing and breast-feeding. While many of my friends were undergoing elective cosmetic surgery to perfect their post-baby bodies, I instead was looking at pamphlets illustrated with grey-haired grandmotherly types considering their surgery options.
My sweet breast surgeon imparted a fact about my life after cancer: that I would spend more years fighting this disease–whether actively (swallowing an estrogen-blocking pill every morning for 5 or 10 years) or inactively (chasing fears of mets from my mind on a daily basis)–than I had been alive.
And that’s the best-case scenario, in which I actually live more than 40 years with this disease rather than succumbing to its terror, as is the case of some 40,000 women in the United States every year. Of course my sweet breast surgeon was thinking best-case scenario when she told me this, and at the time I had no earthly idea how much mental havoc this disease can wreak. Had my sweet surgeon predicted or warned me that on any given day, even years after I had allegedly slain the beast that is cancer, that beast would have the power to plant such thoughts in my head as that which brought me up short yesterday after yoga, I would have likely run screaming from the room.
Would I even be alive to do yoga in 30 years?
What kind of thought is that??? That, my friends, is the power of cancer. It can erase the calming, centering effects of yoga in a single bound. It can swipe the joy of the beginning of spring break in one fell swoop. It can plant a seed of recurring fear and doubt with the greatest of ease.
The Social Security Administration estimates that the average life expectancy for a female in the US these days is 85. Simple math tells me that best-case I’m looking at 45 years post-cancer. More years fighting it than years I’ve been alive. Even with low recurrence-rate predictors and stellar care from top-of-their class physicians and access to always-improving tools that monitor my cancer’s efforts to reinstate itself, the recurring fear and doubt prevail. Within two minutes of bidding my yoga instructor namaste, cancer had infiltrated my thoughts and led me to wonder what my chances are of being the grey-haired grandmotherly type rolling up my yoga mat and heading to class.
I know, I know, we residents of cancerland are supposed to think positive. We are advised by all manner of sources–both sought-after and unsolicited–to assume the best. We are told to visualize it and believe it and it will happen. We are told that what’s meant to be will be.
But that doesn’t stop the automatic response that cancer brings. I can think positive and assume the best and visualize and believe all I want. I can employ every cancer-fighting weapon from pharmaceuticals to superfoods. I can hope and wish and pray to the anti-cancer gods. But cancer will do whatever it damn well pleases, and if it wants to come back and rudely interrupt my life, it will. If cancer wants to cut short my plans of doing yoga for the next 30 years, it won’t think twice.
That, my friends, is the power of cancer.
I read a lot about breast cancer and how it affects those it strikes. Sometimes the reading is hard — like when an intrepid blogger dies from metastatic breast cancer — sometimes the reading is sad — like when a blogger pours out her heart on the topic of life and loss — but usually it’s uplifting, restorative, and comforting.
I’ve not done a good job in this space of writing about — and railing against — metastatic breast cancer, the kind that kills. MBC is every pink-ribbon girl’s biggest fear. Once that cancer leaves the breast and travels to points far afield, usually the liver, bones, and/or brain, the game changes completely. No matter what stage one begins the cancer “journey,” once the cancer spreads, it’s stage IV and incurable. Treatable, but not curable.
The stats on MBC are horrifying, both the number of women who are afflicted and the shockingly low percentage of funds allocated for research: 30 percent of women with early-stage breast cancer will develop MBC, and 90 percent of breast cancer deaths result from MBC yet only 2 percent of funds go toward research for it, according to metavivor.org. MBC is the pink elephant in the room. Or the elephant in the pink room, as the latest metavivor campaign calls it.
I encourage you to click on this link and go to the metavivor website. There are easy ways to get involved and ensure that more funds go toward research for MBC. Each time someone likes metavivor on Facebook, a dollar goes into the research pot. Share the image above on Facebook, add another dollar. Sign up to receive emails from metavivor and add one more Benajamin. Follow metavivor on Twitter, add one more, and mention it on Twitter with the hashtag #MBCAware for one more dollar donated. The money comes from Eisai, a research-based pharmaceutical company. I don’t know how to pronounce its name, but I like what it is doing for oncology research.
I think about MBC a lot. I’ve written about it a lot. Recurrence is the scariest part of the breast cancer “journey,” IMHO, and that’s saying a lot because this “journey” is full of pitfalls, roadblocks, speed bumps, potholes, and unpleasant detours.
Yesterday I read a fantastic post about MBC by Yvonne at Consider the Lillies, and one part really stuck with me. Much of the post resonates, but this part especially, as it perfectly describes the recurrence side of the breast cancer “journey”:
“I am afraid that the cancer that was removed along with my breast, will reappear in my bones or my brain or my liver. That it will sneakily take up residence in a vital organ. So every little headache is a warning bell, every twinge in my left hip is a harbinger of disease. The series of appointments with oncologists, plastic surgeons, breast surgeons is unsettling. Scribbled in a planner, the dates remind me that my life has been forever altered by breast cancer. I suppose I am doing just fine. I’ve even been told I look just like myself, that God would never give me more than I can handle, and admonished to put my “big girl pants on.” The thing is that those tests and scans shocked me once, and I have prepared a little space inside to be shocked once again.”
I pondered this for a long while yesterday, and realized that I too have prepared a little space inside to be shocked once again. It’s one of the many hard truths about the aftermath of cancer. On one hand, surviving such an ordeal provides a zest for life, a desire to gobble up life in big, gulping bites, to live it to the fullest, in whatever form that takes. But on the other hand, it’s hard to live fearlessly and zestfully while waiting for the other shoe to drop. It’s not a question of thinking positively or hoping for the best. It goes beyond having done the homework and made the hard decisions and undergone treatments to slay the beast. One can do all of those things and still lose this game. One can do everything right, yet breast cancer recurs. That’s why we prepare that little space inside.
In her post, Yvonne calls for an online revolution about the realities of breast cancer, especially the metastatic kind. I’m in. Me and that little space inside are all in.
Another story from our fine local newspaper. Yes, it’s about cancer, and yes, it’s sad. Consider yourself forewarned.
Last month, there was a wonderful story called “Shuffling the Pack” about a woman, Tina Borja, and her dog Buck. Two years ago, Tina found a lump in her breast and became one of the the “one in eight” women in the United States to be diagnosed with the dreaded disease. She endured the all-too-familiar treatment of lumpectomy, mastectomy, chemo, and radiation to combat her cancer. During the misery that is cancer treatment, as Tina grew weaker, Buck took over as the pack’s alpha. According to Tina, it was no longer her job to take care of him; he decided it was his job to take care of her.
Reminds me of my sweet Maddy, the All Time Ever Best Dog in the History of the World. She and my sweet mama got sick about the same time, and both were going downhill fast: mom’s cancer was eating her alive, and Maddy’s advanced age (98 in dog years) resulted in some nasty degenerative problems that no pet owner should have to witness. Long story short, my mom knew she wasn’t going to win her cancer battle and was heartbroken about the idea of me losing her and my beloved dog at the same time. The vet gave Maddy a few weeks to live, while Mom was given a few months. Darned if that dog didn’t defy the odds and live nearly 6 months past her predicted expiration date. She held on for several months after Mom died, then quietly let me know it was her time, too.
But back to Buck. And Tina.
After enduring treatment, Tina was pronounced cured of breast cancer. Not “in remission,” Tina says, but “cured.” Big difference. And one that this cancer survivor won’t feel comfortable assuming, ever. As I’ve written about here and here, “cured” isn’t something I consider. To me, “cured” connotes a permanent state, while recurrence is always on the horizon.
Tina looked at it differently, and didn’t think about recurrence. After being pronounced “cured,” she felt safe. She probably figured she’d endured so much hardship that she deserved to have a big payoff, i.e., a long, healthy life. Instead, she was hit with what every cancer patient dreads: recurrence. One day, out of the blue, she started having trouble with fine-motor skills. Everyday stuff like typing and signing her name became iffy. After the all-too-familiar scans we cancer patients endure, Tina learned she had four tumors in her brain. Her breast cancer was not cured but in fact had spread.
The icy grip of death got a two-fer yesterday. The world lost not one but two beautiful souls and because of this vicoious disease known as breast cancer, two important voices in the blog-o-sphere are forever silenced. Rachel Moro Cheetham, better known as Rach from the Cancer Culture Chronicles, and Susan Niebur of toddlerplanet both died yesterday. Rachel was the one who enlightened me to the appalling statistics that exist in the financials of the Susan G. Komen “For the Cure” organization [emphasis mine]. Rach is gone, but her tell-all pie chart will live on. Susan was an astrophysicist with NASA and mom to a 4- and 6-year-old boy who fought inflammatory breast cancer in her spare time. She compiled a list of science-related links, for kids and adults, on her blog full of science, parenting, and “the joy of life after cancer” that will no doubt become part of her legacy.
Rachel and Susan are beautiful examples of the pioneers in BC blogging. They blazed a trail and lit the way for newbies like me. They challenged and questioned and refused to wrap themselves in pink ribbons. They inspired me. By setting such a stalwart example, they encouraged me to do the same.
I’m not alone in my admiration for and my grief over these two women. A few blurbs from the BC world about them:
“Pretending that the pain isn’t here would be a disservice to the raw honesty of their voices.”
“I am stepping up to be a fearless & rebel friend. We need to keep their voices strong & heard by many.”
“If I could dim the lights on my blog, I would. We all took a big hit today.”
“I feel more resolve to stir the hornet’s nest.”
“CRAP CRAP CRAP.”
“Talk about hopes, dreams, plans, fears–then get out and live the life in front of you.”
“We will mourn and we will be sad and then we will become a FORCE that will not be turned back.”
Powerful words that befit powerful women.
When I created this little blog, it was initially to keep those closest to me informed of the steps and stages in my cancer “journey.” The plot thickened, however, and that “journey” became more perilous. A mysterious post-mastectomy infection, a month’s worth of hospitalizations that spanned the summer and three different hospitals in my great city, multiple surgeries to contain the scope of the infection’s destruction, two infectious disease teams, countless bags of antibiotics–both in the hospital and at home, and 267 days of oral abx gave me a lot on which to report.
Then came the harrowing process known as reconstruction. Thanks to the infection, nothing was simple, and what should be the final stage of the BC “journey” was anything but. Two revisions later, there’s still work to be done, and I’ve got many miles to go before I sleep. This little blog went from “Hey y’all, here’s what’s happening” to “y’all aren’t gonna believe this,” and in the process, this little blog morphed from a news bulletin to some serious therapy for its author and creator. Without the outlet that is publishing my most pressing thoughts, I could possibly be staring through the peephole of a padded cell instead of pounding out my latest missive on my iPad in the comforts of home.
I knew when I started this little blog that I would learn from my fellow BC bloggers, but I didn’t know I’d learn so much about this vicious disease that, for a time, took over my life and that has forever changed my life. As I put myself out there in the blogosphere and in the twitterverse, I found more and more blogs written by women like me–everyday gals from all walks of life in all corners of the globe confronting a nasty beast while also maintaining a career, running a household, and/or raising children. I’ve gotten to “know” some incredible women whose writings have educated, humbled, enlightened, and entertained me. Somewhere along the way, in between the updates and follow-ups that become the fabric of a cancer patient’s life, we became friends. United in our commonality of being members of a club we never wanted to join, we bond over blogs. We hold our breath as our blog friends report the news of the ever-ominous follow-up scans, willing it to be NED (no evidence of disease) news. We wake to the words on the screen written by fellow foot soldiers in this wrenching war. We cheer aloud in front of glowing computer screens late at night when there’s news of a final radiation session, and get teary-eyed as we envision our blog friend ringing the bell in the infusion suite to signify the completion of chemo. We nod our heads in tacit understanding of the trials & tribulations that are a cancerchick’s life. We lean on each other and support each other, hopefully in equal measure.
In the throes of my cancer “battle,” I had a hard time reading the blogs of the cancerchicks who were battling MBC, the acronym for metastatic breast cancer. I shied away from those blogs because they were living the life that scared me the most. See, in my naivete, I wanted to believe that a cancer diagnosis at age 40 was the worst thing I’d ever endure (even thought I knew that facing the death of sweet mama was a million times harder). I wanted to believe that my cancer was the good kind, the easy kind, the kind that would never come back, even though in my heart of hearts I fear that it’s only a matter of time. In the beginning, I read the BC blogs from the outside, looking in, but before long, I became one of them. Like Rachel preaching the deception of SGK and dreaming of escaping from it all in a red karmann ghia, and like Susan arguing with her oncologist and imploring him to discharge her from the hospital after too many days away from her precious kiddos, I became one of them. They led by example and encouraged me to widen my sphere of influence. They were like rock stars in the blogging world — I looked up to them. Like getting an autograph from an admired celeb, a comment from them on one of my posts on my little blog was a thrilling keepsake. That their comments are no more fills me with great sadness. Thinking about those they leave behind — Rachel’s scruffy little dog, Susan’s sweet little boys — sears my heart.
Ralph Waldo Emerson wrote, “Do not go where path may lead, go instead where there is no path & leave a trail” Rachel and Susan, you have my heartfelt thanks for leaving a trail.
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.
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.
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.