Susan's avatarA4BC Founder's Blog

Yesterday I put an article in my Breast Cancer Newspaper about a federal committee of leading breast cancer experts that released a report about reducing our exposures to chemicals and radiation in our environment. Today I received an email from Jeanne Rizzo, R.N.
President and CEO of the Breast Cancer Fund stating that she is serves as a co-chair with the federal committee.

congressimagesThe report, “Breast Cancer and the Environment: Prioritizing Prevention,” concludes that “preventing environmental exposures is the most promising path to decrease incidence of the disease, and calls for a national breast cancer prevention strategy.”

The report’s first stop is the desk of U.S. Secretary of Health and Human Services Kathleen Sebelius, who must create an action plan to implement the report. This action plan can lay the groundwork for a national prevention strategy that will require commitment and hard work from the Obama administration and Congress.”

Write…

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On the Other Hand, Some of those “Inspirational Quotes” Are True!

The other night I perused a few online news articles and their comment sections. There was an article on CNN’s webpage called Let’s Talk About Sex…And Cancer.  One person who commented said a couple of minimally offensive things regarding the complaint that cancer patients have a hard time feeling sexual during and after treatment. This person said things like these are “First World problems” (implying that since we don’t live in a Third World country and have problems like starvation and war, cancer patients should just stop whining about surviving cancer) and “I really don’t think I would be too worried about sex if I was surviving cancer.” In the thread in which many objected to the latter remark, this person admitted to not having cancer. Duh, that was pretty clear.

At any rate, the stupidity of these comments distracted me from another well-meaning but ignorant comment, in the same article, made to a woman detailing how her mastectomy scars made her feel. The well-meaning person who responded said something like “oh so sorry, can’t you get reconstruction?” Ugh! Eye-roll, snort of derision (from me). The first person patiently explained how reconstruction isn’t some magical solution. But at lease the well-meaning, ignorant person had some compassion. It makes me re-think my complaints of all the stupid (but well-intentioned) things people say to cancer patients. I can forgive it if the comment comes from compassion. Comments like “I really don’t think I would be too worried about sex if I was surviving cancer,” when spoken by someone without cancer—not so much.

Sadly, this recent stupidity reminded me of something I read several months ago, in the comments to 10 Things Not To Say To A Cancer Patient by Suleika Jaouad, New York Times ‘Well’ columnist. One awful person commented that people should not have to walk on eggshells (meaning watching what he or she says) around those with cancer, and goes on to say things like “be brave & suck it up. Everybody dies.”

Wow. I wonder if these people realize how easy it is to say these kinds of awful things when they aren’t the ones doing the dying, the coping with cancer treatments. Or are they?

This is where the inspirational quotes come in for me. I think of a popular inspirational quote I’ve seen on Tumblr frequently, saying something to the effect that everyone you run into has fought or is fighting something, has experienced some modicum of struggle. I think the quote is supposed to make the reader less judgmental and motivated to show compassion, even when other people say or do stupid things—we don’t know what is going on with that person. I think back to my life before cancer. Did I have struggles? Absolutely, but they were nothing compared to cancer, cancer was bigger than all my previous struggles combined. OK, it is possible the commenters troubling me today survived rape/abuse, or drug addiction, or maybe another kind of life-threatening disease. But the insensitivity of the words makes me doubt that. I’m not suggesting that people who’ve gone through horrible things all wind up being compassionate people incapable of saying such ugly things. I mean hell, look at the crap I write, I can be pretty unafraid of confronting some awful truths, but I don’t think I am deliberately ugly or mean, I hope I do not come off that way.

Which brings me to a popular (on Tumblr) quote by Elisabeth Kübler-Ross: “The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen.”  The comments in my first paragraph lack sensitivity, compassion and concern, and were made by one who admits to not have faced cancer. The comment in response to “10 Things Not…” also lacks sensitivity, but the bitterness in the words might be because the person has suffered great loss and has no pity left for anyone else facing disaster. Or maybe I wish to make an excuse for his or her comment because my own suffering-induced compassion kicking in? I want to believe that this person is just bitter, and really isn’t that ignorant and cruel, but deep down, I would not be surprised if he or she truly is that ignorant and cruel.

Which finally brings me tone last inspirational quote, which only seems attributed to Twitter, saying “some people were born to be lucky, others were born to be fighters”.

So as a cancer patient I was born to not only to fight the disease, but idiot comments as well? Maybe. Many would say, so don’t read these kinds of articles and the comments that go along with them. But you cannot hide from stupid comments, I got them quite a bit in the early days of cancer and I was shocked and unable to respond. Now that I am wiser and more aware of the sheer amount of insensitivity out there, I can handle the day-to-day, face-to-face so much better; I mind the comments less, and have some prepared responses. Am I a born fighter? Yep, bring on the stupid comments, I got answers.

And

Ron Weasley (Rupert Grint): One person couldn’t feel all that. They’d explode!

Hermione Granger (Emma Watson): Just because you’ve got the emotional range of a teaspoon…

                        –from Harry Potter and the Order of the Phoenix (2007 film), in which Hermione tries to explain all the emotions felt by Cho Chang, causing Cho to cry while Harry kissed her.

I started looking into (breast) cancer blogs in search of solace from the forced cheerfulness of the pink ribbon culture. I was lucky to find a few, like thepinkunderbelly, unafraid to point out the un-pretty and unpopular thoughts, feelings, and facts about cancer. But I follow other blogs about cancer, often finding good tidbits of info, and sometimes I see disturbing stuff.

It seems the majority of posts I see include “inspirational” quotes. Lately I have seen a few that are “encouraging”, but in a chiding and judgmental way. I will not reprint them here, for fear of offending my readers who might have posted one of these quotes. Hey I’ve even reblogged a few myself, the ol’ cancer curmudgeon doesn’t mind a bit of uplifting inspiration once in a while. But one I did not reblog stuck with me. It implied that people in bad situations have a choice: they can be and remain angry or accept their misfortune (getting cancer). In fact, it implies that one must choose between being angry or accepting. To this I ask, why can’t I accept my misfortune, deal with it AND still be miffed, annoyed, yes even angry about it?

I do not understand this drive or pressure to turn cancer patients into a nation of Ron Weasleys. I feel many things at one time, thank you very much. I especially don’t get it when the pressure comes from fellow cancer patients. A few months ago at a retreat another patient told me I need to just accept how things are, because I can’t be angry all the time. I bit my tongue, thinking, “maybe you can’t handle anger, lady, but it motivates me to do something”. Why on earth does everyone want to tell me how or what to feel? And, while we’re at it, what makes this judgmental behavior acceptable in our society (people like telling others, especially women, how to feel and even what to do—just look at shit people say to pregnant women or women with toddlers)?

My emotional range far exceeds that of a teaspoon, or a cup, or even a gallon jug. Maybe an oil tanker would be big enough for my emotions, because, unlike Ron, I am so capable of feeling more than one thing at a time. The health care professional who runs the cancer support group I attend is fond of the word “and”, as am I, because to not say “and” is soooo limiting.

Here are some emotions cancer made me feel (usually considered negative):

Anxious, Stressed, Scared, Apprehensive, Overwhelmed, Weary, Intimidated, Depressed, Angry, Upset, Frustrated, Annoyed, Disappointed, Pressured

AND

Here are more emotions cancer made me feel (usually considered positive):

Happy, Delighted, Confident, Strong, Powerful, Determined, Humorous, Compassionate, Inspired, Relieved, Eager, Enthusiastic, Pleased, Proud

I often felt any number of these, from both the negative list AND the positive list at the same time, in any number of combinations.  Being angry, stressed, AND depressed may cripple other people but it motivates me to speak out, demand better medical expertise in the world of cancer, better prevention, etc. I am angry I got cancer AND I am grateful I survive. I am stressed and depressed about the events of the past 24 to 30 months, AND I am inspired and eager to become an advocate for others who will follow me into Cancerland. I’m all of these things right now.

Now one last word about the issue of acceptance, which was part of the quote I read that set me off on a tangent to write this post. I can accept that I am angry. I feel anger AND acceptance for my situation. To those who lecture about “acceptance”, why can’t you accept me and my messy, passionate overflow of emotions, of which I feel all at once? Why is passion such a threat?

It’s Only Weird If It Doesn’t Work

This is the rare post from the ol’ Cancer Curmudgeon in that it is not cranky and complaining. I daresay it will border on hopeful and magical, maybe a little silly. Blame it on local pride, I OD’d on it watching the Raven’s celebration parade yesterday.

Despite my post of the Ravens logo minutes after their Super Bowl victory, I am not much of a football—or any sports—fan. In past years, my primary interest was just the half time shows, and of course, who doesn’t love the commercials. But during cancer treatment 2010-2012, I was hungry for distractions; books, TV, or any kind of pop cultural entertainment (bless Charlie Sheen in winter of 2011, the ultimate distraction). And the Super Bowl, the way it is the defining national event, especially fit the bill.

I’m Maryland born and bred, so my obvious allegiance is to the Baltimore Ravens. And as a bonus, the team name is a reference to one of the greatest poems of all time, written by one of the greatest American writers. A macabre poem written by a drunk who married his underage cousin doesn’t seem a likely inspiration for the name of team in a sport like American football. Guess that is why they were underdogs, another thing I like about ‘em!

During cancer treatment I became aware that the Ravens seemed to have a knack for getting almost to the Super Bowl, and would lose that final game that could send them there. For the past two winters I grumbled if only they would just win that last play-off game and at least get to play in the Super Bowl, that would be cool, I could live with that. So, when the season started last autumn, I kept an eye on the scores, something I’ve never done in my entire life!

Before I continue, indulge me in a small detour into my twisted mind, so the rest of this post will make even less sense and get weirder.

Weird Thing #1:

Long ago I read “Animals as Teachers and Healers” by Susan Chernak McElroy (whose blog I just discovered, hurray!). In the book (or perhaps the one she wrote right after that, I read them over 10 years ago) an interesting concept is discussed that essentially boils down to this: a cultural belief that the rooster crows because the sun comes up and the sun comes up because the rooster crows. No, it does not make any scientific sense, but it is a fun and interesting concept anyway. I know how the earth revolves around the sun, giving the illusion that the sun “rises” each day, regardless of any earthling’s behavior. I also know absolutely that if the rooster did not crow, the sun would not rise. Odd thing to come out of the mind of the cranky pants, atheist mind of the Cancer Curmudgeon, yes, but it is true, I believe it.

Weird Thing #2

Apparently, a theme of this year’s NFL season was fans and how they support their teams: “It’s Only Weird If It Doesn’t Work”. I did not know that until I saw a news segment of the same name, previewing that Stevie Wonder Super Bowl commercial and showing clips from Silver Linings Playbook, in which Robert DeNiro has his son (Bradley Cooper) or his son’s friend (an amazing Chris Tucker) hold the TV remote in one hand and an Eagles scarf in the other, slowly rubbing the scarf. The point of all this is that fans have these little “habits” that they believe will help “their” team win. The behaviors aren’t quite symptoms of OCD, but they certainly look like it. Hey, I have OCD tendencies and I am proud! And yeah, I wore my 2012 Ravens t-shirt from early Sunday morning to Monday morning—never ONCE removing it. Stop laughing, they won didn’t they?

Because my interest in following football started while having cancer, the two things became entwined in my mind. As the Ravens recently approached the final play offs once again, I approached my 6 month cancer check- up. I’d been doing well since my July check-up, much like the Ravens were beating the 49ers until half time. On January 14, the mammogram and ultrasound showed an “area” to monitor. I worried I might be in danger, that cancer was sneaking up on me again. After the black-out, the 49ers began to creep up on the Ravens, like my cancer. January 21, after this close shave, my visit with the oncologist tells me I’m still doing ok, status still NED. The 49ers crept up on the Ravens, but ultimately the Ravens persevered, and were victorious, just like me.

My next words may be crazy, brace yourself. It is just like the rooster crowing to cause the sun to rise each day.

My all clear from the oncologist earlier this month caused the Ravens to win, and conversely, the Ravens’ win means I will remain NED this year. No, it isn’t weird, because it’s working. And it is why this Super Bowl meant so much to a non-sports, non-superstitious person.

And now, the next post will return you to your regularly scheduled snark and crankiness.

Accurate!

drkdhoffman's avatarHealth Communications and Health Advocacy

“Patient blogs reveal the true extent of the impact of cancer on finances, work practices, family life…they offer a window into the lived experience of the patient.”

~Marie Ennis-O’Connor

marie-ennis

When you are 34 years old, lecturing and working in Public Relations and Marketing at a University, you aren’t thinking about cancer.  Yet in 2004, Marie Ennis-O’Connor suddenly had to.  Her life changed with her diagnosis of breast cancer.

In a recent post on the International Journal of Public Health website, this Irishwoman writes, “A cancer diagnosis is not just a single event with a defined beginning and end, but rather a diagnosis [which] initiates a survival trajectory characterized by on-going uncertainty, potentially delayed or late effects of the disease or treatment, and concurrent psychosocial issues that extend over the remainder of a person’s life.”

The uncertainty, delayed effect of the disease or treatment and the possibility of recurrence are all…

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BcomingFree's avatarBcomingFree

داخل نفسي هو المكان الذي أعيش فيه وحده كل شيء.

Inside myself is a place where I live all alone.

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cfouryw's avatarC4YW

C4YW is just a few weeks away, and we are excited  to see all of the strong, thriving young women who are planning to attend! Today the C4YW Blog is happy to introduce Emily Cousins, another young woman working hard to better herself and other survivors for her first entry! Check back  as Emily shares with us her insights on the studies of the environment and breast cancer. Be sure to visit the website and register for this year’s event in Seattle!

Emily Cousins

I was diagnosed with breast cancer when I was 32 years old and in the ninth-month of my first pregnancy. I urged my doctors to give me aggressive treatment because I wanted to live for my new baby. Since then, I have religiously done follow up exams, had screenings, and undergone biopsies. Now, 10 years later, I am considering removing my ovaries to reduce the amount of estrogen…

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Susan's avatarA4BC Founder's Blog

Today is World Cancer Day. Go to their website and take a peak.You can sign for a cancer free world as well as learn myths and truths about cancer. Click on: http://www.worldcancerday.org/wcd-home

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YES!!

YES!!

Finally joy for this Maryland native!

AFTER CANCER, HOW BIG IS THAT PROBLEM REALLY?

I think sometimes I get too frustrated with simple annoyances in life. A fight with big chain stores because they failed to update my membership discount card, or because another store failed to register my warranty plan for an expensive item three times, are these major or minor annoyances? Or how about that grandest of irritations to some of us—the automated response I get when I call a company and the fact that no matter how many options offered, none of them match the problem I need to solve—look idiots, if I’ve broken down to actually calling you rather than submitting a question via your website, odds are my problem is more complex than the simple options I can select by pressing a suggested number, and I need a human capable of thought, with problem solving & customer service skills, who understands that not all problems fit into the narrow categories offered by the automated voice. Argh, stuff like that just eats time and energy!

I mean, I’ve had cancer, so shouldn’t I be handling all disasters, large and small, with a beatific smile, calm assurance, and stuff like that?

Or, how about my preferred way of looking at it, which is, hey, I have a cancer card that doubles as a get out of jail free card. I get a free pass for the rest of my life on these petty things. Now, let me have my way!

Ah, sweet fantasies!

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