Reclaiming October

As is true for many affected by breast cancer, October has been especially rough on me.

How have I dealt with all of the pink hoopla invading this month?

Not very well, I'm afraid. But that is about to change.

For the first half of this month, I put myself into a self-imposed "house arrest," avoiding stores and having groceries delivered to me instead -- all because of that dreaded pink ribbon.

I couldn't bear seeing all the pink balloons, pink ribbons on various food items, and pink whatevers of any kind. My exile involved becoming hermitlike, avoiding TV. I couldn't handle seeing any more smiling people on breast cancer commercials, and I couldn't watch the news. I even couldn't keep up with the many wonderful blogs out there.

Right now, ignorance is  bliss to me. I have felt so inundated with pink, that it seems like someone vomited Pepto Bismol all over the world.

But then, something remarkable happened. I fell in love with October all over again. My "exile" and daily power walks helped me see the forest for the trees.

The trees' change of color and the sweet crunch of the leaves under my feet all overtook me. And I realized that, in the natural order of things, October is a beautiful month. In the natural order of things, October is not meant to be dressed in pink.

So I have decided that for the rest of this month, I need to take a break from blogging and focus on enjoying life. I need to focus on spending time with my wonderful daughter, going to fall festivals, and appreciating all the autumn colors and  beauty that make up October.

I am also spending the rest of this month working on my book proposal.

So, for now,, I am taking a break from the blogosphere. I hope my readers understand, but it's important I do this now. I will be back in November, but right now I am admiring the beauty of this month:

I'm writing a book titled Calling the Shots: Coaching Your Way Through the Medical System. Please feel free to subscribe to this blog by clicking the orange subscribe button. I am a professional writer and have published numerous academic and magazine articles, as well as an essay on my breast cancer experience in the anthology Voices of Breast Cancer by LaChance Publishing. I can be contacted at bethlgainer@gmail.com and gainercallingtheshots@gmail.com.

What Being a Breast Cancer Survivor Means

As a breast cancer survivor, I want to usher in Breast Cancer Awareness month by noting what I have to be grateful for.

A recent TV commercial features two musicians playing instruments and singing “Happy Birthday to You.” Afterward, a message appears on the screen that many people who have had cancer are still celebrating their birthdays.

I’m one of them.

Except I have had 365 birthdays per year since I was diagnosed with breast cancer in 2001.

My perspective has changed since I had cancer and went through chemotherapy, radiation, and, a few years later, a preventive double mastectomy with reconstruction. Before cancer, I took life for granted and didn’t appreciate even the smallest, precious moments.

Since cancer, I view each day as a gift, as another birthday. I now have an uncanny ability to slow down time and appreciate life. This is what it means for me to be a survivor and thriver: not merely to exist day to day, but to see each day as something to be savored because, truth be told, no one knows when his or her last day on Earth will be.

Oddly enough, I view my having had cancer as a gift, for it has taught me many life lessons. I have learned to make friends with quality people and not waste my precious time with those who drain my energy. I marvel at my daughter and know that my time with her is a precious gift, not to be taken for granted. I don’t allow obstacles to interfere with my dreams. I not only stop to smell the roses, but I savor the scents of each season in a way I never did before. I look up at the sky, even when it’s raining, and know that life is good. And when I have bad days like everyone else, I view them as good days in disguise.

This is what it means for me to be a breast cancer survivor: not just to survive, but to thrive by relishing life’s wonders.

Those two musicians singing “Happy Birthday to You” in the commercial lift my spirits. Because as a breast cancer survivor, I know that today, like every day, it’s my birthday.

This posting is an excerpt from my upcoming book, Calling the Shots: Coaching Your Way Through the Medical System. To obtain these excerpts regularly, please subscribe to this blog by clicking the orange subscribe button. I am a professional writer and have published numerous academic and magazine articles, as well as an essay on my breast cancer experience in the anthology Voices of Breast Cancer by LaChance Publishing. I can be contacted at bethlgainer@gmail.com and gainercallingtheshots@gmail.com.

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.

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.

A Curve Ball and The No.1 Exploited Disease

Lately, I've been feeling exploited.

As someone who tries to empower others to advocate for their own medical needs and health, frankly I get pissed off when I see companies exploit fear -- particularly as it relates to women -- to sell a product or service.

Take the "fitness" business Curves, for example. A few years ago in October, I was waiting for my train, when a woman came up to me with a flyer saying this flyer's message was in support of breast cancer. I took it and chatted a bit with her, telling her I was a survivor and how much I appreciated the support. After she left, I read the material.

I was horrified.

It was an advertisement for Curves, and the message basically said that getting a workout would help stave off breast cancer. I promptly threw it out, but I saw all these people at the station reading the same flyer as I had been. And I wondered how many of the women got sucked into Curves' message: "Come to Curves, and you won't get breast cancer."

How odious.

Companies of all sorts like to cash in on breast cancer. It's the cash cow of diseases. In my previous post, I mentioned how much it meant to me that there was this outpouring of support for the disease that would've eventually killed me had I not caught it earlier.

But there's another side to this outpouring. Only in October do we see pink ribbons galore on everything -- from frozen dinners, to balloons, to pins, to yogurt, to cookies, to....

I'd prefer fuschia ribbons, thank you very much. And I'd prefer that companies stop exploiting women by making them feel guilty for getting breast cancer or making them feel they can prevent it just by purchasing a product or service.

Disseminating the truth. And that's why throughout the year, and especially throughout October, I get annoyed because it's like breast cancer doesn't exist during any other month and women are constantly being manipulated and exploited. Hey, I was diagnosed in January. Happy New Year, and January should be my breast cancer awareness month.

I think I'll buy myself a pink Barbie doll. Do they have the Double-Mastectomy-with-Reconstruction Barbie?

So in honor of breast cancer awareness month this October, I decided to share some truths that might make some feel uncomfortable, but unlike Curves, who exploits women with its lies all for the big bucks, I'm really vested in helping people.

1. Mammograms are a good tool in detecting breast cancer, but not for women with dense breasts, which includes me and a vast array of others that will slip through the cracks.

2. Many young women get breast cancer, but many doctors falsely reassure them by telling them they were "too young to get breast cancer."

3. Working out and eating right are excellent lifestyle choices. They may help prevent cardiovascular problems and control/prevent diabetes. They may help you lose weight.

They do not prevent cancer.

4. One out of 100 men will get breast cancer. Men with breast cancer are really at a disadvantage. With all the focus on women, men get short shrift in this disease. I would love to see more support groups for men.

5. Breast cancer usually occurs in women with no family history of the disease.

6. Most women who get breast cancer do not have the BRCA1 and/or the BRCA2 gene(s). I didn't.

7. MRIs and ultrasounds are better diagnostic tests for women than mammograms.

8. If you get a mammogram, ask the technician AND the radiologist if you have dense breast tissue, and then get the copy of your X-ray film and look for yourself. If their answer is "yes," and the film looks all white, you have dense breast tissue, and your mammogram is rendered useless.

9. No, tofu and other soybean-based products do not cause estrogen-related cancers to creep up.

10. Support groups are great, but many participants will have weird ideas about preventing a recurrence or "curing" cancer. There is no cure.

11. Go to doctors regularly and, if you are younger than 40, insist on a mammogram and other diagnostic tests anyway. You are not "too young" to get breast cancer.

12. Live your life the best you can, and don't allow Breast Cancer Awareness month exploiters or various people in the media or support groups to inform you with nonsense.

Check out this article that I got from a wonderful breast cancer advocacy blog http://beyond-breast-cancer.blogspot.com/


http://www.boston.com/bostonglobe/magazine/articles/2009/10/04/sick_of_pink/?page=1


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.

Hello Again, Breast Cancer Awareness Month

Well, it's official.

It's October.

Everywhere I go nowadays, I'm inundated with pink ribbons and pink food packages. How I react to all of this pink stuff depends on the mood I'm in. Sometimes I have flashbacks of the harsh treatments I endured, the double mastectomy with reconstruction, and also the kind doctors who crossed my path. 

Other times I get annoyed. 

Still other times I cry -- maybe because I'm feeling sorry for myself, feeling overwhelmed, feeling sorry for my sorry body, the result of numerous invasive treatments and surgeries. And I often reflect on my young friends who died from the disease, and this is the catalyst to the pity party called Survivor's Guilt. 

 

But mostly, I feel lucky. I'm fortunate to be witnessing such a huge outpouring of support for a cause that is so near and dear to my heart.

I SURVIVED.

While I'd like to take all the credit for beating cancer, I know that my survival was partly due to luck. I have deep, honest gratitude each day. 

Because I lived. 

And I want to be an example of how to live a wonderful life after cancer. While my being at the other end of a cancer help line would be a huge mistake (I'm too fragile to do this), I am more committed than ever to be a voice of medical advocacy and to share my story with others. I use the written and spoken word to help others, which reminds me that it was a good thing I majored in English in college.

October is the month where I find myself the busiest in the writing and speaking circuit. A year ago, last October, I participated in a number of events, including a Borders book reading and signing of the Voices of Breast Cancer anthology, in which I published an essay. I also attended a fund-raiser, that raised some serious money to help disadvantaged and/or underinsured women get free mammograms. I was on a cable TV show as a guest, and I was one of many survivors honored at an event at my hospital.

Last year's fund-raiser was magnificent. While I watched attendees bidding on items and vacations I could not afford, my heart welled with joy. These generous people, in my mind, became ambassadors for this cause. Every time a bidding card went up to up the ante, gratitude filled me up, as I thought about how so many lives would change for the better. I was so grateful, I was rendered speechless.

This year, on Oct. 3, I'm attending the same gala and am sure I'll be equally choked up at the kindness and giving nature of others. Later in the month, I will be sharing my story in a public forum of breast cancer survivors. I am honored for the opportunity to do so. I don't think my story is any more special than those of the other survivors, but I'm hoping they are inspired by my story and are willing to share theirs.

That's how it is, really. By opening up and telling our stories, we help others and form a supportive community. 

Hello again, October. I am ready. 

And this year, once again, October is ready for me.

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.

A Train Car Named Quagmire

In a previous blog, I mentioned an instance where I aired my dirty medical laundry on a train car to get what I wanted and needed from the administrative side of the medical system.

This is that episode.

The drama unfolded with me as lead actor, director, and writer of my medical destiny -- oh, and a train car packed with complete strangers who had no idea that their ticket purchases to downtown Chicago included entertainment. Well, that day, they got a lot of bang for their buck.

The situation: I had an appointment with a mastectomy surgeon the next day. Her office had squeezed me in quickly, as my surgery date would be in two months. I had just found out about the appointment that very morning. Understandably, her office needed my medical records faxed from another doctor's office ASAP.

It took a 45-minute phone fight, with me as victor, and, as it turns out, a crowd of strangers cheering for me.

When it comes to advocating for yourself, you must be willing to shamelessly share your situation within earshot of strangers. This is because medical staff and each of us have limited availability, and, well, you sometimes have to snatch that narrow window of time you have to make that call.

Even if you are in a bathroom stall. Even if you are on a train car.

Here's how my drama unfolded that very eventful day:

Needing my records faxed and knowing I'd be unavailable the entire afternoon, I make the call while on the train. The prissy record gatekeeper is refusing to fax my records to my surgeon's office. By the time I make the call, I am pissed off, tired, and my frustration has turned to steely determination.

MissyPrissy says it normally takes a week or two to transfer medical records, and I'm, like, "huh?" Then she scolds me for asking for the office to fax the records the day before the appointment and says that I should know better. I calmly explain that this mastectomy surgeon's office fit me in at the last minute because of the urgency of my medical situation and that's why I need the records delivered on such short notice. I just found out this morning I am seeing her tomorrow.

To my dismay, she counters that there are protocols to follow and that the office can't just fax records willy nilly whenever a patient asks for them. I remind her that the surgeon is the one who wants to see me immediately and wants my medical records before my appointment. The administrator says her office's policy is strict, and if they make an exception for me, then they are going to have to make it for every patient. So sorry, but no tumbling dice.

I say, "OK" and end the conversation. I cry quietly -- after all, it's OK for the whole train car to know my breasts are coming off, but I don't want anyone seeing me cry. (Yes, I'm train car-decorum- challenged.) I feel defeated.

Then I think of that famous and my favorite poem "Don't Quit," and I recalled a line: "Rest if you must, but don't you quit." I had the wind knocked out of me. That was my rest.

I would not quit.

I call the office again. The Records Nazi recognizes my voice and is amazed that I have the audacity to come back for more abuse. As she starts telling me her office's decision is final, I interrupt her with a blitzkrieg of my own: "I don't want to speak with you anymore. Give me your office manager."

Shocked at my irreverence, she complies.

When the office manager gets on the phone, she tells me she cannot go against the office protocol regarding sending records to a doctor's office.

Suddenly, I take a different approach: emotional manipulation -- and this is the turning point that gives me the upper hand in getting what I want and need.

Although my chemobrain cannot retain information well, I do remember our dialogue verbatim:

Me (seeming to change the subject): "Do you know I'm adopting a baby girl from China?"
She (disarmed): "Awww, how sweet!"
Me: "Well, how would you feel if she no longer had her mommy?"
She: "That would be terrible!"
Me (not wasting a minute): "Well, that will happen if I don't get my surgery. Your office's refusal to deliver my medical records today may delay my surgery and ultimately harm me. How would you like to tell my daughter that she no longer has a mommy?"
She (emotional): "Please don't talk that way! We don't want your child to be motherless. Let me see what I can do to get your records to the surgeon's office."

I thank her and literally two minutes later -- no I really mean literally two minutes -- the Records Nazi humbly calls me back and says the records have just been faxed to the surgeon's office. My surgeon's office calls me a few minutes later to confirm this.

I am exiting the train in shock at my own power to advocate for myself -- and in shock that I'm able to stand on trembling legs and that I am evoking smiles and congratulations from so many people in the car. Then a gentleman who was sitting far from me on this journey approaches me. He says, "Ma'am, I hope you don't mind, but I overheard your entire conversation, and all I can say is, 'Good for you!'"

That's when I realize how loud I must've been. I thank him and apologize for being so loud.

He says, "It was great hearing you not taking nonsense from those people. Your health is the most important thing in the world, and it's about time someone put these medical people in their place! Good luck with your surgery; my thoughts are with you."

At this point, I'm reeling. I am happy to have such a fan base, but then I wince as I remember saying the words "double mastectomy" and "breast cancer" so often during my conversations on the train. Everyone on my car had heard the sordid details.

As I leave the train, I see a Breast Cancer Awareness Month ad on the wall of the vestibule. I remember it is October. And on that train car, in front of a group of strangers, it turns out that my face was the face of breast cancer. But it was also the face of self-advocacy.

And as I walk on shaky legs, but not on shaky ground anymore, I think that perhaps I became someone's role model and hero that day. And I realize I have become my own hero that day, as well.