It's Not A Month. It's Our Lives.

My favorite month is October. It’s autumn here in New England, when the trees put on their remarkable display. The sky is a brilliant blue. The light is crystal clear. The air is warm enough to make you want to be outdoors, and cool enough to let you enjoy it when you get there.

October has also become Pink Month. There’s a lot of creative whimsy to behold during Pink Month, from art made out of bras, to public buildings being lit up in pink lights. But when you’ve been diagnosed with breast cancer, the flood of pink merchandise just leaves you feeling deeply disgusted that your disease is used as a marketing opportunity by the captains of corporate greed. It’s supposed to be Breast Cancer Awareness Month, not “how much pink crap can we unload on the public” month. I suppose in its own perverse, insulting way, all that pink crap does achieve the main objective. Stumble through any drugstore or supermarket or online advertising blitz for the next month, and you’d have to be deaf, dumb and blind to be unaware of breast cancer. But what about it? What kind of awareness is actually raised?

I’d like someone to interview me on the Today Show. Not Susan Love. Not Sheryl Crow. Certainly not Suzanne Somers! I’d like to hear someone like me talk about how breast cancer and breast cancer patients are really treated by the health care system. I’d like to know when partial mastectomies started being called lumpectomies. I’d like to know why I was not informed well before surgery that I was going to lose half my breast, why the spread of my so-called “early” in-situ cancer was not determined until an hour before I went under the knife. Had I known I was going to lose more than a “lump,” I would have been able to consider having a full mastectomy instead and thus I could have avoided radiation. I could have ended up with a different calculation for my recurrence risk. I might never have had to consider following radiation with hormone therapy.

And that’s another thing. What’s up with calling it “hormone” therapy? It’s anti-hormone therapy. Since a large percentage of breast tumors feed on estrogen, anti-hormone chemicals like tamoxifen and aromatase inhibitors are aimed at preventing estrogen from getting to breast tissue. The problem is, they also prevent it from getting to other places where it’s helpful. But the oncologists tend to be very single-minded about all this. You are no longer a woman; you are only a pair of treacherous boobs. And if they don’t think it’s enough to put you on something that shuts off all your estrogen, they’ll yank out your uterus and your ovaries, too, while they’re at it. Kill that estrogen! Estrogen is BAD, BAD, BAD!! Not a surprise that most of the doctors are men.

But it’s not estrogen that’s the enemy. It’s cancer. Estrogen is a very useful hormone and when you don’t have any, you lose bone mass, and your skin and hair dry out, and your joints get stiff and arthritic, and you get hot flashes and night sweats, and you gain weight that you can’t lose, and your mood plummets, and you don’t sleep well, and you feel exhausted all the time. And if that’s not enough, chances are your body’s immune system is in a state of turbo-drive from trying to fight off the cancer itself, plus the damaging death rays of radiation and the poison of chemotherapy and the tissue stress of surgery. Which causes extreme fatigue that goes on for months and often years, and is not even evaluated or treated by most cancer doctors. But nobody talks about that during Breast Cancer Awareness Month.

When I was getting radiation, no one checked my blood counts. Radiation is known to destroy blood cells and lower your white count in particular. But no one checked. During the second week of radiation, I developed extreme fatigue. I was getting radiation at one of the largest hospitals in the state, yet no one thought to check my white count. And when by the end of that week I developed a roaring upper respiratory infection, no one in a hospital full of doctors and nurses would write me a prescription for an appropriate antibiotic. Instead, they sent me home, sick and miserable, on a Friday, to see if I could get my primary care physician to see me at the last minute. They don’t talk about things like that during Breast Cancer Awareness Month.

They don’t talk about the office staff at the “breast health center” who made me sit for close to an hour, waiting for my medical oncologist to show up for her morning appointment, without telling me that she was stuck in traffic near a road construction site. When I finally went up to the front desk to find out where she was, I was only told, “She’ll be here soon.” I asked, “Why wasn’t she here an hour ago?” “You’ll have to ask her that,” I was informed. So I did ask her that, and she told me she’d called and asked the staff to let her patients know what had happened. I never went back to that “caring, comprehensive” breast health center again. And that’s nothing. You should hear what’s happened to some of my friends — the botched surgeries, the infections, the oncologist’s nurse who was calling my friend’s husband on his cell phone and flirting with him. You never hear about that kind of stuff during Pink Month.

Researchers have found that from one fifth to perhaps three quarters of all cancer patients suffer from Cancer Related Fatigue, and that it lasts anywhere from three months to ten years. Not one of my cancer doctors evaluated me for fatigue. And the one who finally did prescribe a medication for it never assessed me either, and doesn’t have much experience with it. I’ve taken the Provigil for four weeks and it’s not working anymore. So what am I supposed to do now?

I’ve already given cancer a year of my life, and I still don’t have it back yet. I’ve swallowed some of the most expensive drugs I’ve ever been prescribed, and the only benefit they seem to have provided is to fatten the drug company coffers. I have more doctors than I’ve ever had in my life, and while they’ve arguably helped destroy my breast cancer, they’re not helping me get well. I just got a call from a nurse practitioner at a breast health center to remind me to get my tamoxifen prescription renewed. She asked me how I was, and I told her I needed some help with my fatigue. She didn’t offer any.

While we’re out there raising the public’s awareness of breast cancer, maybe we should start with the people who treat it.

Please click on the post title or the comment link below to post a response.

This entry was written by Kathi, posted on Monday, September 28, 2009 at 12:09 pm, filed under Attitude, Diagnosis, Recurrence, Screening, Fighting the Pink Peril, Health & Healthcare, Life & Mortality, Making A Difference, Metastastatic Breast Cancer, Nitty Gritty, Research and tagged , , , , , . Bookmark the permalink . Post a comment below or leave a trackback: Trackback URL.

9 Responses to “It's Not A Month. It's Our Lives.”

  1. Once again, a profound, provocative and perplexing blog. There is no doubt that insensitivity abounds, but it’s regretful when it’s in the field of medical care. After all, it’s called CARE for a reason. I have so much love & respect for a friend like you who can really express herself in such amazing ways.

  2. That is absolutely horrible. Excuse me but that really hacks me off. I wanted to say something uglier but refrained. You are so right. I have never heard of any of these problems before.

    When my aunt who passed away last year was going through her treatments for a very aggressive cancer she ended up hospitalized several times due to what the treatments did to her blood. God love her spirit because she just kept right on going. I don’t know how she functioned.

    I really appreciate you blogging about this. This is so educational and informative. These ARE things that need to be researched. These ARE issues that need to come to light. These ARE conditions that need to be treated.

    I will keep you in my thoughts and prayers daily. I hope that soon you will have relief from these symptoms and be able to enjoy your life without feeling like you are dragging yourself through it.

    I hope you get rest and really enjoy your little vacation.

  3. Love you for telling the truth! I went through similar things in ’08…

  4. I wish I could say I’m surprised… healthcare seems to be lacking, enormously, the care portion. I’ve seen better care at the vets with my dogs then at hospitals/doc offices for myself. Not to say there aren’t a great bunch of people in the field but there’s just as many, if not more, of the not-so-great. One person stands out, the spray-tanned-Bob Barker at my local hospital… won’t elaborate. I’m just astounded, shocked, disgusted over the Cancer Fatigue. Three months to TEN YEARS???? OMG.

  5. Hi – I found your blog through Emily’s (American Amazon) blogroll. I have the BRCA1 mutation, but have not had cancer (preventative surgeries scheduled and coming up soon). I read your post and was rather horrified.
    As if dealing with breast cancer itself isn’t bad enough, to have to go through all of that other stuff on top of it is just terrible. Thanks for bringing up these things in such an open and blunt way.

  6. Speak the truth, my dear! Thanks for giving some insight on what women go through after diagnosis – the stuff the happy “Buy our pink socks and help rid the world of breast cancer!” marketing campaigns never, ever talk about. Right there with you, my dear, and my five year cancerversary is Sunday…

    Rock on!! (Points lighter to the sky)

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