Monday, November 9, 2009

Breast Cancer Awareness Year


While Breast Cancer Awareness month has come and gone, it is really vital that people be aware of this devastating disease year-round. Breast cancer affects everyone because, although the majority of its victims are female, the disease is also devastating to husbands, fathers, sons, and any man who has a woman in his life. And one out of 100 men get breast cancer, too.

And so, here are my tips for year-round health-care vigilence. Some have been stated before in my previous blogs, but one cannot emphasize them too much. So, here they are:
  • Do a breast self exam every month. This includes not only feeling for lumps, but doing the "mirror test," which is where you look in a mirror, raise your arms and look at your breasts to ensure there are no unusual flags, such as dimpling, puckering, inverted nipples, etc. It was the mirror test that saved my life.
  • If you find something unusual, even if you don't think it's a big deal, get it checked out as soon as possible. It's better to have it checked out and it be nothing than not to check it out at all.
  • Fire any doctor who tells you that you are too young, too old, to nice, etc. for cancer. They are not taking your concerns seriously.
  • After a mammogram, ask the technician and the radiologist if your breast tissue is dense. If the answer is "yes," then it's most likely difficult to see any possible abnormalities. Go to your primary care physician, or your gateway doctor, to get an order for an MRI or ultrasound. 
  • Eat right and exercise. Healthy living really doesn't prevent cancer, but it does help promote good mental and physical health. And that's always a good thing.
Beth L. Gainer is a professional writer and has published numerous academic and magazine articles, as well as an essay on her breast cancer experience in the anthology Voices of Breast Cancer by LaChance Publishing. She writes about a potpourri of topics, including motherhood and her Chinese adoption experience at http://currents-living-discovery.blogspot.com/, and her cat Hemi blogs at http://www.catterchatter.blogspot.com/. Beth teaches writing and literature at Robert Morris University in the Chicago area. She has a guest posting on The World's Strongest Librarian at http://worldsstrongestlibrarian.com/3597/sharing-a-loved-ones-pain-guest-post-by-beth-gainer/.

She can be contacted at
bethlgainer@gmail.com and gainercallingtheshots@gmail.com.

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Thursday, October 29, 2009

Breast Cancer Profiling and the Blame Game

As Breast Cancer Awareness month comes to a close, I want to express gratitude for all the trials, studies, and the women who suffered before me -- just so I and others could live. I also want to thank all the doctors who have worked tirelessly on behalf of breast cancer patients.

But....

You knew there was a "But" coming, didn't you?

I've noticed a disconnect between some doctors and patients.

As a breast cancer survivor (and thriver), I have the same concerns that many patients and former patients have: Will the cancer come back? Has it spread? What is causing my aches and pains -- cancer or arthritis? We live with the fear that, once again, chance will, perhaps, choose us to be members of a club that nobody wanted to join in the first place: The Cancer Club.

Yet when I hear doctors speak about breast cancer in particular, I notice an alarming trend. They cite studies that attempt to explain why women get breast cancer. And this is where things get dicey.

Risk Factors Behaving Badly

Reasons given for breast cancer diagnoses include Vitamin D deficiency, lack of regular exercise, lack of eating sufficient amounts of fruits and vegetables, having babies later in life or having no babies, having the BRCA1 and/or the BRCA2 gene, stress, and drinking too much alcohol. Studies show, for example, that super athletes (those who work out 4-6 hours per day) have a low incidence of breast cancer.

No offense, doctors, but I'm not buying any of this. Statistics can be manipulated to show a "finding" that is suspect at best. For example, maybe the super athletes tend to be very young and that's why they have a lower incidence of breast cancer? And what about Peggy Fleming? She is a super athlete doing a weight-bearing exercise.

She got cancer anyway.

And so did I, even though I was fit, exercised regularly, didn't smoke, had no significant family history of the disease, don't have the BRCA1 and/or BRCA2 gene, and was a non-drinker.

In short, I didn't fit the "profile" of someone who had breast cancer coming to her. And by providing general profiles of which women are likely to get breast cancer, doctors are doing breast cancer profiling and playing the blame game.

Because truth is, nobody takes care of him or herself 100 percent of the time. The truth is, nobody really knows what causes cancer; truth is, because breast cancer for each woman (or man) is as unique as her (his) fingerprint, generalizations don't work; and truth is, every person on Earth probably fits into one or more of the aforementioned risk factors.

A healthy diet and regular exercise are a must in order to help foster a viable body and mind. But to link everything back to causing cancer is a bit short-sighted. After all, my grandfather worked with asbestos, and he lived until a ripe old age. Had he died of cancer in his 40s, then it would've been attributed to his exposure to asbestos.

I'm not saying doctors are always wrong. It's just that the best doctors see the patient as human with unique attributes rather than a potential statistic to be presented at a forum.

Beth L. Gainer is a professional writer and has published numerous academic and magazine articles, as well as an essay on her breast cancer experience in the anthology Voices of Breast Cancer by LaChance Publishing. She writes about a potpourri of topics, including motherhood and her Chinese adoption experience at http://currents-living-discovery.blogspot.com/, and her cat Hemi blogs at http://www.catterchatter.blogspot.com/. Beth teaches writing and literature at Robert Morris University in the Chicago area. She has a guest posting on The World's Strongest Librarian at http://worldsstrongestlibrarian.com/3597/sharing-a-loved-ones-pain-guest-post-by-beth-gainer/.

She can be contacted at
bethlgainer@gmail.com and gainercallingtheshots@gmail.com.

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Saturday, October 24, 2009

Jubilation for Breast Cancer Survivor Stories


On Thursday, October 22, 2009, I was fortunate to participate in an event honoring breast cancer survivors. The event, Jubilation (Joy-Celebration), was held in the Radisson Hotel, Merrillville, IN, on a rain-drenched day.

But that didn't drench the spirits of participants.

Presented by the Barden Gary Foundation and the Friends of the Barden Gary Foundation, Jubilation was a huge success, thanks to the efforts of many dedicated personnel.

The basic concept behind the event was excellent: Breast cancer survivors and people who had not had breast cancer networked at the Radisson and at a local dinner destination.

The crowd was motivated by a kickoff speech by NBC's Dr. Sandy Goldberg, also a survivor, and the founder of A Silver Lining Foundation.

Then 10 stretch limousines each transported a group of 10 women to a restaurant for an intimate dinner and conversation. Each limousine went to a different restaurant, where a survivor would act as speaker and share her story, followed by a discussion among the group.

(I will say ours was the luckiest bunch of women, having Lionel Richie videos on the limo's TV screens on the way to the restaurant and a Jon Bon Jovi concert on the way back.)

In my group, I was the speaker and facilitator. After dinner, the limousine drove us back to the Radisson for more networking and a final candle-lighting ceremony honoring the survivors, followed by Dr. Goldberg's closing remarks.

What transpired during the event was simply magical, and I was fortunate enough to witness it. The limousines transported complete strangers to the restaurant and transported fast friends back to the Radisson.

For me, it was empowering to share my story and have validation from other women. There was one other survivor in our group, so she shared her story, as well. This was our chance to provide useful information about breast exams and medical self-advocacy to others.

What touched me was the ability to make a difference in people's lives. We were not just physically transported, but we were delivered to a higher plane -- that of friendship and comaraderie and community.

This event did what it set out to do: We shared stories and restored each other in the process, reminding me once again about the power of the human story to mend the heart.

Beth L. Gainer is a professional writer and has published numerous academic and magazine articles, as well as an essay on her breast cancer experience in the anthology Voices of Breast Cancer by LaChance Publishing. She writes about a potpourri of topics, including motherhood and her Chinese adoption experience at http://currents-living-discovery.blogspot.com/, and her cat Hemi blogs at http://www.catterchatter.blogspot.com/. Beth teaches writing and literature at Robert Morris University in the Chicago area. She has a guest posting on The World's Strongest Librarian at http://worldsstrongestlibrarian.com/3597/sharing-a-loved-ones-pain-guest-post-by-beth-gainer/.

She can be contacted at
bethlgainer@gmail.com and gainercallingtheshots@gmail.com.

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Monday, October 19, 2009

Breast Cancer Awareness Month and Real Men Do Get Breast Cancer


Well, it's halfway through Breast Cancer Awareness month, and I'm already really tired of the barrage of pink ribbons and pink everywhere in general.

Don't get me wrong; I'm very appreciative of all the support and awareness that this month has created. Years ago, one would be hard-pressed to find so much media coverage and general public awareness about this devastating disease.

I do want to address one major issue: While public support is rampant, somewhere in the world, there are families and friends rejecting people who have been newly diagnosed with breast cancer. This has happened to more people than I can count, and it has happened to me. Of course, many family and friends were there to lift my spirits, but there were individuals who rejected me upon diagnosis.

The rejection is more heart-wrenching than the breast cancer diagnosis itself.

And let's not forget the men who are afflicted with this disease. One out of a hundred men get breast cancer and, unlike women, they do not have the world rooting for them. In fact, I've heard from men with breast cancer, and they face a barrage of ostracism -- from "you're kidding" remarks to "men don't get breast cancer," to "but it's a woman's disease." 

What I would like to see is the support for men with the disease. Men have breasts, so why couldn't a man get breast cancer? That's the next public campaign that would be appropriate for Breast Cancer Awareness Month.

Beth L. Gainer is a professional writer and has published numerous academic and magazine articles, as well as an essay on her breast cancer experience in the anthology Voices of Breast Cancer by LaChance Publishing. She writes about a potpourri of topics, including motherhood and her Chinese adoption experience at http://currents-living-discovery.blogspot.com/, and her cat Hemi blogs at http://www.catterchatter.blogspot.com/. Beth teaches writing and literature at Robert Morris University in the Chicago area. She has a guest posting on The World's Strongest Librarian at http://worldsstrongestlibrarian.com/3597/sharing-a-loved-ones-pain-guest-post-by-beth-gainer/.

She can be contacted at
bethlgainer@gmail.com and gainercallingtheshots@gmail.com.

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Saturday, October 17, 2009

Tumbling Dice and Music Will See You Through


Life is a crap shoot. 

Literally. 

Sometimes the dice turn out in your favor, and sometimes they don't. And life gets really difficult and complicated when you are battling a disease or put through a series of scary diagnostic tests.

When I had to endure MRIs, I would get claustrophobic, and the loud noises the machine made would startle me. For the first MRI, I took a Xanax and asked for earphones with classical music. Though I love classical music, it wasn't enough to drown out the dreaded "boom, boom, boom" of the MRI machine. I almost pressed the panic button several times and was sick from stress for the next few days. 

The next year, I took a different approach: I brought one of my Rolling Stones CDs and told the technicians to blast it. They looked startled at me choosing something they didn't consider relaxing. But I knew otherwise.

The first song, ironically, was "Start Me Up," blasting in the control room and in my earphones at 6 a.m. I was still on Xanax, but I felt liberated because the Stones' wonderful music drowned out the MRI's awful noise and drowned out my inner demons, and I relaxed. This would become my tradition each year I got an MRI, and each experience was somewhat enjoyable -- all because I was able to cling to the music I loved.

Music therapy has healing powers. If it can't heal the body, it can heal the mind.

That's what the Rolling Stones did for me. And, yes, here's the part of my posting where I wax poetic about how wonderful this rock group is. 

I really liked the Rolling Stones before I was diagnosed, but after diagnosis and during treatment, it became clear to me how much I needed them in my life. I'd listlessly walk to my car, exhausted from low blood counts and collapse into the driver's seat. (Yes, I drove myself to and from chemotherapy and radiation treatments.) 

Sometimes I sat in the driver's seat and cried because I was so ill and fatigued. Other times I just felt sorry for myself. Other times I wanted to die.

But then I'd turn on the radio and more times than I can recall, there was a Rolling Stones song, and I would find my spirits soar and realized how beautiful life can be -- because their music has so much life to it. And every once in awhile, my favorite song, "Tumbling Dice" would play and transport me to a world where illness didn't exist. 

The Rolling Stones became my favorite group during this fragile period of my life because when their songs came on the radio, pure magic happened. I was transported. I no longer felt like a cancer patient; I no longer felt ill; I felt optimistic and happy -- and powerful. Their music is rife with life -- and fire and power and energy.

And when I was at my lowest points, the Rolling Stones lifted me to a place where illness didn't exist, and they did gimme shelter at a time when I was most scared, most sick, most depressed, and most filled with anxiety and dread.

This posting isn't about how great the Rolling Stones are (although if I've convinced some readers, that would be just dandy). It really is about the healing power of music. No matter what your medical situation, music can see you through the toughest of times. Music therapy isn't a new concept, but it's sometimes all too easy to give in to despair, rather than simply turning on an iPod or a radio.

Whether we are sick or well, music transports us to great places.

By the way, I'm still an avid Rolling Stones fan. 

And every so often, I think back to the time they transported me from a place of illness and despair -- to a place where I had the will to live.

Beth L. Gainer is a professional writer and has published numerous academic and magazine articles, as well as an essay on her breast cancer experience in the anthology Voices of Breast Cancer by LaChance Publishing. She writes about a potpourri of topics, including motherhood and her Chinese adoption experience at http://currents-living-discovery.blogspot.com/, and her cat Hemi blogs at http://www.catterchatter.blogspot.com/. Beth teaches writing and literature at Robert Morris University in the Chicago area. She has a guest posting on The World's Strongest Librarian at http://worldsstrongestlibrarian.com/3597/sharing-a-loved-ones-pain-guest-post-by-beth-gainer/.

She can be contacted at
bethlgainer@gmail.com and gainercallingtheshots@gmail.com.

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Wednesday, October 14, 2009

Medpedia Community


Hi readers,

You will notice that on the left upper corner of my Calling the Shots page there is a new logo. I am proud to announce that I am now one of the contributors to Medpedia, a site designed to educate people on various conditions, illnesses, and to answer questions in general. My Calling the Shots blog is now included as part of Medpedia.

During my short time on this site thus far, I have been quite pleased. I get to communicate directly with physicians of various backgrounds and meet experts in the field of breast cancer and self-advocacy.

I have found the staff and medical experts at this site to be kind and helpful.

Please check it out by clicking the icon. You'll be glad you did!

Beth L. Gainer is a professional writer and has published numerous academic and magazine articles, as well as an essay on her breast cancer experience in the anthology Voices of Breast Cancer by LaChance Publishing. She writes about a potpourri of topics, including motherhood and her Chinese adoption experience at http://currents-living-discovery.blogspot.com/, and her cat Hemi blogs at http://www.catterchatter.blogspot.com/. Beth teaches writing and literature at Robert Morris University in the Chicago area. She has a guest posting on The World's Strongest Librarian at http://worldsstrongestlibrarian.com/3597/sharing-a-loved-ones-pain-guest-post-by-beth-gainer/.

She can be contacted at
bethlgainer@gmail.com and gainercallingtheshots@gmail.com.

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Sunday, October 11, 2009

Civil Disobedience Revisited, or Float Like a Butterfly, Sting Like a Bee


In a previous posting, Who's Afraid of the Big Bad Administrator, I wrote about my refusal to tolerate rudeness from administrative personnel, as well as my refusal to sign a form that would potentially have me paying for a service that my insurance would cover.

Last week. Deja vu.

I had come to my hospital's lab to drop off my daughter's stool sample for a routine check. Because I had adopted her from China, the doctor wanted to rule out parasites. Pretty standard stuff. I had already gotten all the materials from the lab, which informed me that all I needed to do was drop off the sample, as I already had given the lab staff the doctor's order for the test to be conducted.

So imagine my surprise when I sat at the registration desk, and the woman there said that I needed a referral from the doctor -- not just an order -- in order for labwork to be processed. And this woman, one of the hospital's gatekeepers, was nasty. I don't know what kind of power trip she was on, but she could've easily called the doctor's office right downstairs and had a referral walked up, faxed in, and/or e-mailed, but instead, the registration clerk decided it would be more fun to give me a hard time.

She had no idea whom she was dealing with.

She told me that without a referral, I couldn't drop off the sample. Then she tried to publicly humiliate me with a barrage of condescending statements and questions, such as "You should know better, that a doctor's order isn't good enough; you need a referral," and "Why didn't you get a referral?," and the constant digs about my medical-system intelligence, which was the last time she dared say anything condescending to me.

When I told her that the lab said a doctor's order was all I needed, she said, "Don't you know that you need a referral for special procedures? Don't you know how the medical system works?"

That was when I started to make her really sorry and did like Mohammed Ali said: "Float like a butterfly, sting like a bee."

Except I stung like a wasp.

I immediately responded, "I had breast cancer, so I know full well how the medical system works! Don't you tell me how the medical system works. The lab told me that all I needed was a doctor's order and to drop off a sample, which I have with me today. When I was at the registration desk just a few days ago, no one told me to get a referral. If you want a referral, I suggest you get it yourself."

She did apologize for her tone, but she still was arrogant when she said she needed me to sign a form that acknowledged I had no doctor's referral.

That spelled trouble.

And sure enough, she handed me a form that looked familiar; it was the same form I discussed in Who's Afraid of the Big Bad Administrator, the form that says because there is no referral, I would agree to pay whatever insurance doesn't cover.

She probably thought I'd comply because all the verbiage on the form seemed intimidating. Maybe she thought I was stupid.

So I read the form through and then said, "I refuse to sign this. You can easily get a referral, so there's no way I'd ever pay for labwork that is covered by my insurance."

She said, "What?!," followed by some remark meant to bully me into compliance: "This form just says you acknowledge you don't have a referral."

I countered with, "But that's not what this form says. This form says that I will have to pay any costs if there is no referral. And I refuse to pay. In fact, rather than signing the form, I'm going to write on it an explanation of why this office has led me astray."

She looked on with horror, as I wrote my composition on the form under the signature line. (As a writer, I love to write, and the massive amount of text on the form showed that passion for my craft!)

I explained how a doctor's order was written for the labwork and that the lab said this order was all that was needed and the registration personnel never told me about a referral in the first place. I also wrote that if there was no referral, it was the fault of the lab staff for not telling me right away and that they have caused me a major inconvenience. I then signed that what I just wrote was true.

Oh, and I added the line, "I will not pay for services rendered because I had a doctor's order for the lab tests and followed the proper protocol."

The registration woman was shocked, stunned, horrified...

She started acting all nice to me and finally treated me with respect. She immediately called the doctor's office and asked for a referral. If she had done this in the first place instead of being lazy and looking to abuse someone, I wouldn't have felt the need to be so difficult.

When confronted with rude medical staff bent on making your visit miserable, there's only one good option.

Civil disobedience.
Beth L. Gainer is a professional writer and has published numerous academic and magazine articles, as well as an essay on her breast cancer experience in the anthology Voices of Breast Cancer by LaChance Publishing. She writes about a potpourri of topics, including motherhood and her Chinese adoption experience at http://currents-living-discovery.blogspot.com/, and her cat Hemi blogs at http://www.catterchatter.blogspot.com/. Beth teaches writing and literature at Robert Morris University in the Chicago area. She has a guest posting on The World's Strongest Librarian at http://worldsstrongestlibrarian.com/3597/sharing-a-loved-ones-pain-guest-post-by-beth-gainer/.

She can be contacted at
bethlgainer@gmail.com and gainercallingtheshots@gmail.com.

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