Tuesday, February 4, 2014

Day 1,327: Debunking 15 Cancer Myths: World Cancer Day

Here we are again, on World Cancer Day 2014. The theme this year is "debunking cancer myths" and the aim is to educate the world population in general, and poorer countries and populations specifically, about things like the need to talk about cancer, focusing on healthy lifestyles, etc. I might touch on these themes a bit, but mostly I'm going to use this forum to debunk the kind of myths that impact my daily life. So mostly I'm talking about breast cancer, though some of this moves beyond the realm of cancer and into other subjects entirely.

1. Only unhealthy people, or old people, get cancer. Sorry, Charlie. I wish it were so. Some of us got cancer while weighing in at 117 pounds while standing 5'5", exercising multiple hours a day, and breastfeeding an infant 5 times in every 24 hours, while not drinking at all, overeating or doing anything particularly risky. Some of us continued along those lines, and we got cancer AGAIN. And taking stock of risk factors is just that--risk factors don't provide a view into prevention. For example, exercise is said to decrease your risk of breast cancer recurrence by 30% (one study has cited a 50% decrease, but 30% is used more often). So let's say you are me, diagnosed with stage 1 TNBC in 2010. After surgery with clean margins, extensive chemo and radiation, my chance of recurrence was given at 4-8%. All the exercise I did therefore lowered my risk to 2.8% to 5.6%. And I ended up in the 2.8% to 5.6% regardless. Scares you a little, doesn't it?

2. The treatment is worse than the disease. Nope. No matter how much cancer treatment sucks, especially chemo, the ravages of those beasts pale in comparison to what metastatic cancer does to your body.

3. If you are physically suffering, your life is about suffering. Also natch, nada, nope. You can suffer and be happy at the same time. You can be brought to your knees by physical ailments and resume your life as if nothing is happening. You can be bald and still look normal, you can be skinnier than you've been since high school and have people tell you YOU LOOK GREAT. You can be in the process of living and dying at the very same time.

4. Looking good during treatment makes you feel better. This might be true for some, but not for me. I looked like I looked and felt like I felt, and the two didn't necessarily intersect that much. Drawing in eyebrows doesn't make your neuropathy go away. A wig doesn't resolve your nausea or vertigo. Breast implants don't reverse the sexual dysfunction brought on by chemo-induced menopause. You get the picture. Hidden underneath this myth is the idea that if you are a cancer patient, especially a female one, you should give a shit about how you look and what others think of how you look. I mean, if men are still hitting on you, who cares if death is looming behind them?

5. People with cancer are fragile. Many people seem to believe this, and treat cancer patients with kid gloves. Some people stop talking to us entirely. But honestly? We are nothing if not tough. The toughness might be borne out of necessity, but it is there.

6. Cancer is a journey. Well, no. It's a disease. It kills people. It kills 75% of the people who contract it in the developing world and about 50% of the people who contract it in developed countries. It is not a life lesson. It is a thing that tries its best, that uses all its power, to end lives. It is not a thought process nor a meditation device. It is a disease, people, plain and simple.

7. You just need a positive attitude, and you will beat cancer. Cancer does not give two shits about your attitude. Your cellular dysfunction will not be resolved with a fist pump and a smile. In fact, many studies have shown that more ornery cancer patients have longer lifespans...because they stand up for themselves and demand things of doctors that would be denied them otherwise. I stand here today as a case in point. Also, if cancer is positive, what are puppies? What is love? If the human range of emotions doesn't allow for negativity toward a thing like cancer, there is no point in having emotions. Cancer is a huge load of bullshit and should be treated as such. The end.

8. If you don't have the "lifestyle risk factors," your cancer must be genetic. Or...not. Maybe it's just complicated. Maybe it's birth control (yep, TNBC, yep!), maybe it's pollution, maybe it just is. I swear to God I am waiting for the day when someone somewhere decides that breast cancer is caused by premarital sex, because by Golly we have to be at fault for this shit! We have to constantly ask ourselves what we have done to deserve this, instead of asking why this load of shit fell on us when we didn't deserve it at all. Such as it is for many things with women. Such as it will be, until we all do a 180 and stop blaming the victim or the patient.

9. Cancer changes you as a person, and makes you better. This could happen, I suppose. But it can also make you sad, afraid, depressed, isolated, chemical-dependent, and lacking in sympathy for other people's pettiness. The latter has happened to me. On more than one occasion I have said things like " I DID NOT SURVIVE CANCER TO TRIP OVER YOUR BIG ASS SHOES" all while threatening to throw said shoes in the trash. I do not love my family more because of cancer. I always loved them. I do not laugh or hug or screw more because of cancer. I do all those things all the time just the same as I did before I had cancer. I did not fundamentally alter my career, though I did start a new job right after a mastectomy and two rounds of chemo. I did not take a new lover, move to an exotic locale, or decide to stay at home with my kids. I just continued to live the life I had before, though I write this blog, which is different, I suppose. In all honesty, cancer didn't need to make me better. I was a pretty cool person before all of this, if I do say so myself.

10. Breast cancer is not such a bad cancer, and you get a free boob job! Um, breast cancer kills 105 women in this country every single day. This is a type of cancer for which remission doesn't exist, no matter what doctors and the media say. The best we can hope for is No Evidence of Disease (NED), and as some like me know, being NED means just that: no evidence, not no disease. I was NED for three years, and cancer was probably growing in my body the whole time. And the boob job? Please. Name me one porn star or stripper who is hanging out with no breast tissue at all--not even on the sternum (your breast tissue starts near your collarbone. They remove all of it, so you can see the bones protruding from your chest even if you get implants--at least you can if you are thin like me), with no nipple, nothing but a scar. Name me one woman who goes in for a boob job that is really ten surgeries scheduled over a calendar year. Name me one woman whose "boob job" involves removing muscle or fat tissue from another part of her body, a separate operation for which the recovery is months. Name me a woman with a "boob job" who needs to have necrotic flesh removed from her body, scooped all the way down to the pec muscle, which now sits unnaturally on top of a bag of saline. Name me one woman with a "boob job" who might be at risk of death just for having breasts in the first place.

11. All breast cancer is the same, and catching it early means you will live a long life. Sorry again, Charlie. Women with early stage disease, like mine, still have about a 1 in 3 chance of developing mets, which is incurable and will kill you eventually. For those of us unlucky enough to have triple negative breast cancer, for those of us unlucky enough to be diagnosed under 40 and even worse under 35, this disease barely resembles the disease evident in the post-menopausal, hormone-positive population. Little is known about what causes it or how to treat it. If TNBC metastasizes, women often die very quickly. This has happened to people I know. They die within months, sometimes weeks, of a mets diagnosis with TNBC. Their deaths are neither beautiful nor heroic. They are horrible.

12. You shouldn't talk about cancer, because it's personal. Clearly, I'm in violation of this one. Just because something causes others discomfort does not mean I am required to act as if it doesn't exist. I'm sorry if my life bothers you, but imagine how much it bothers ME. It's a part of me now. Deal with it.

13. Big pharma is out to get cancer patients and is doing its best to keep cancer alive. Oh, the bullshit. I have had some very egotistical doctors, even one with a straight up Jesus complex in my opinion, and none of these people wanted me to DIE. They wanted me to LIVE, if only for the chance to prove they knew how to cure me. These people were noticeably devastated by my recurrence and have begun to talk to me like I actually know what's up, because there is no conspiracy, people. I will not be better off giving $10k to some snake charmer who is going to give me coffee enemas than I am paying a total of $175 out of pocket for a $42k mastectomy.

14. Cancer is an opportunity; it might be the best thing that's ever happened to you! People who say this are clearly on drugs.

15. We are all going to die; cancer might kill you, but you could also get hit by a car and die tomorrow. OK. So. As someone who has been hit by a car, suffering extensive injuries, I am here to tell you this. If you survive an accident, you most likely SURVIVE IT. You might have lifelong problems from it, as I do, but once you are out of the woods, you are out. Cancer can come back at any time. It is like a timebomb but no one can find the trigger. Also, yes, none of us are getting out of here alive. But I have a much higher chance of not making it to 40 than you do, because I had an aggressive form of cancer twice, and the 1 in 3 chance I have of dying of this disease is much more significant and real than the potential 1 in 1,000 chance of you dying in a car accident on your way to work. Your death is an abstraction, mine is in my face. So enough of that.

There are things that are acceptable to say about cancer. It is not my job to say them. It is my job to say what I feel needs to be said. And so I will end by saying that I have had cancer, probably for going on 7 years now, and while it is a part of me and always will be, I wish it weren't so. I wish I could promise my family and the people who love me that I will be there for them, in the future, in the beautiful promise of thousands of tomorrows, but I cannot. All I can do is this, all of this, as long as I can, as best I can, as me as I can be.

7 comments:

  1. DITTO DITTO DITTO DITTO. So well said!!!!! Love it!

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  2. dear Katy,

    you could not have done justice in any finer way that you have with this list of cancer myths. I love that you wrote it in your own words, and from your own experience, with your eloquent and unique perspective.

    much love and light,

    Karen

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  3. That last part
    that's all I ask.
    Love,
    Mom

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  4. Thank you for this. I try, sometimes, to believe the myths. I especially appreciate that you called out "Cancer is a Journey." I mean, yes, on some level it's all a journey. But trying to call it a journey, or a 'cancer dance' as I sometimes refer to it, doesn't make it any less of a disease...it just helps me sleep a little better some nights.
    I needed to read this tonight. I have my first follow up scan results tomorrow since my NED in September showed stable scans. Stable. Hah. I feel anything but. I'm terrified, I freaked out on my partner today, and almost lost it with the vocational rehab lady I had to talk to from when I was on long term disability. I feel the dichotomy between feeling happy and suffering so strong tonight. Feeling grateful, healing from treatment, enjoying this ability to get back to life..and learning very quickly that it's not what it was, and it will never be again. The side effects of a double mastectomy and lymph node removal, knowing that I was one positive node away from the fast track application for SSDI (it takes ten). I don't even read the stats, I can't bring myself to add to my wondering and waiting for the shoe to drop.
    Some folks tell me they're long term survivors. Diagnosed a bit later in life, with a lower stage, perhaps no chemo necessary.
    But in my own personal experience, I've seen more life lost from cancer.
    So what do we do with it all? I go crazy, and then I remember that I'm still alive, even if I've got this shit disease that has cast it's shadow on the rest of my life. And remembering that I am still living well, and will continue to do so no matter what the dice roll says tomorrow. And continue to work on loving myself through the ups and downs, and understand that having to do things a bit differently than I anticipated is something I can live with.

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  5. maggie.danhakl@healthline.comFebruary 7, 2014 at 1:48 PM

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  6. Thank you for writing this, and with such wisdom and wit! :-)

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