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The Never-Ending Cancer Guilt Trip

As my gynecologist’s nurse struggled to explain why my mammogram was suspicious without once using the word 'cancer,' it slowly dawned on me that she was carefully measuring her every word to fend off panic.

People expect fear to ignite when cancer enters the picture. Of course I was afraid, but it wasn't fear that motivated me to do what I did next. I hung up the phone resolved to handle this alone.

Rather than immediately calling my husband, my plan was to return to the breast center for additional testing in secret. I absolutely needed his support, but I couldn't bear the thought of causing my spouse of 21 years the worry that phone call caused me. Like it or not, I was going to stay mum until I knew more.

Best case scenario, I would go to the breast center, get good news and tell him after the fact. Worst case scenario — well, I didn't actually have a plan for that.

A few days later while my husband was at work and our children were at school, I snuck back to the breast center. I was lying by omission and didn’t feel good about it, but being both the bearer of bad news and its cause riddled me with tremendous guilt.

It didn’t go well . . . Read more here.

Survival > Existence, 

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What I Learned in Therapy

"Think of your head as an unsafe neighborhood; don't go there alone." – Augusten Burroughs 

The room was barely big enough for two chairs, a desk and a box of tissues.

Every Tuesday at 10 a.m., I found myself there. Usually, I showed up with a specific issue I needed to talk about. Sometimes, I was just there to be there. Every time, except one, I left feeling better than when I walked in the door.

I’ve been very open about spending an entire year in therapy after my mastectomy. Without a doubt, it was the single best thing I’ve ever done for myself. I don’t know how I could have navigated cancer without it and cannot overstate this . . .

Click here to continue reading and learn how therapy saved me.

Have you been in therapy or are you considering it? Let's talk about it.

Survival > Existence,

Image courtesy Martin Heigan 

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Are You Rushing Your Body to Heal?

We were a small support group of women sitting around a table when she came into the room.

She didn’t even make it to a chair before she shared her distress with her doctor, who had "finally" cleared her for physical activity after her mastectomy.

As an exercise instructor, she had been crazed by weeks of inactivity and weight gain. As soon as she was able to exercise, she threw herself back into it with a vengeance. Now she was in a lot of pain, angry with her doctor and afraid she would never be able to return to exercising.

We’d never met before, but it seemed obvious she had the drive to return to her passion.

What she wasn’t able to do was give her body the time it needed to heal.

It turned out that we had the same problem. When I couldn’t stand upright after my mastectomy and reconstructive surgery, it was easy to sit still. But, as time went on, I also tended to push my body harder than was prudent.

Read more here.

Do you find it hard to give your body the time it needs to recover after cancer treatments? Let’s talk about it.   

Survival > Existence,

Image courtesy ^CiViLoN^

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Monday Morning Motivation

Happy Memorial Day to all who observe this day set aside to honor those who gave the ultimate sacrifice.

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New Study for People with Stage 4 Non-Small Cell Lung Cancer

There is a new clinical study looking for patients with Stage IV non-small cell lung cancer who have already been treated with chemotherapy. The purpose of this study is to compare the new investigational medicine versus the standard-of-care treatment with respect to life expectancy outcomes.

More about the study:

The study drug (LY2835219) is administered by Tablets, Pills, or Capsules.

At least 193 people have already taken this drug in clinical trials.
There will be 550 participants in this trial, at 20 sites around the world.
If you are interested, please find the full study details and eligibility criteria listed here.

Eligibility Criteria:

Participants must:

  • be at least 18 years old
  • have a diagnosis of stage IV non-small cell lung cancer (Stage IV means the cancer has spread to distant tissues or organs)
  • have tumors with KRAS mutations, if known
  • have already had chemotherapy for this tumor

Participants must not:

  • be pregnant or lactating
  • have HIV, Hepatitis B or C, or a history of cardiac arrest

Please complete the online questionnaire to check if you’re eligible for the trial.

If you’re not familiar with clinical trials, here are some FAQs:

What are clinical trials?
Clinical trials are research studies to determine whether investigational drugs or treatments are safe and effective for humans. All new investigational medications and devices must undergo several clinical trials, often involving thousands of people.

Why participate in a clinical trial?
You will have access to new investigational treatments that would be available to the general public only upon approval. You will also receive study-related medical care and attention from clinical trial staff at research facilities. Clinical trials offer hope for many people and an opportunity to help researchers find better treatments for others in the future.

Learn why I’m talking about Clinical Trials

Survival > Existence,

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Hope & Progress at the 2nd Annual Komen Blogger Summit

Two weeks ago, I attended my second, all-expense paid trip to Washington, DC, to attend the Annual Susan G. Komen Blogger Summit. I've been mulling over what I want to say about the experience and settled on the following:

  • The pinkification of breast cancer is still a major issue for Komen;
  • Komen still has a long way to go when it comes to reaching out to the metastatic breast cancer community, but a dialogue is hopefully starting; and
  • I sincerely appreciate Komen's attempts to meet the challenge of disparity within the breast cancer community.

On the second day of the summit, I walked the three mile Komen Global Race for the Cure at the National Mall. Of course, pink was ablaze everywhere. Although the ribbon (and its many pink mutations) has never been my thing, it was amazing to see thousands coming together like sports fans decked out in the team color.

If identifying with a team helps another patient/survivor/caregiver feel supported and part of something bigger than herself, I'm all for it.

That being said, Komen's latest blunder, acceptance of $100,000 from a company which proceeded to paint their fracking drills pink in "support" of breast cancer, most definitely came up during the summit. Marketing officer Norm Bowling admitted that the partnership with Baker Hughes, Inc., was a mistake and assured us Komen now has guidelines in place to make sure that future partnerships mesh with Komen's mission.

As to the mission, it was presented in three parts:

  1. closing disparities in the health care system for underserved communities;
  2. funding and encouraging the work of young researchers; and
  3. advancing research in the area of metastatic breast cancer.

It's about time the disparity issue got the attention it deserves. A few years ago, I volunteered as a grant reviewer for a local Komen chapter. Before that, I had no idea Komen made grants to agencies working with underserved populations to provide basic needs, such as child care, transportation, wigs and prothesis, education sessions, free mammograms, and navigation services.

Teena Francois-Blue, of the Chicago Breast Cancer Task Force (a Komen grantee), spoke at the summit and shared a picture of a mammography center in Chicago with an open sewer in the middle of the floor! The sad truth is that these communities don't have the same access to quality healthcare that many of us take for granted. It's also true that minority women are less likely to be diagnosed early and more likely to die of breast cancer.

Many of us have said that Komen should spend less on "awareness" and more on research because we're aware enough. What I haven't been aware of until recently are the very real disparities of care between the haves and the have-nots in our communities. 

I was beyond thrilled to see metastatic breast cancer research equally included in Komen's mission statement. That development and the inclusion of two stage IV bloggers at the summit shows real progress. I learned a lot about their concerns (their voices were sorely missed last year) and I'm hopeful the dialogue they started will continue and expand.

For a thoughtful report on the summit from the perspective of one of these bloggers, be sure to read Tami  Boehmer's Putting on my advocate hat for the Komen VIP Blogger Summit. 

Continuing with the focus on metastatic breast cancer research, we also heard from Dr.Daniel G. Stover, a Komen grant recipient conducting research in the area of triple negative breast cancer. He was joined by Komen scholar Dr. Antonio Wolff of the Translational Breast Cancer Research Consortium, a collaborative group founded to conduct innovative and high-impact clinical trials for breast cancer. 

At dinner the night before the race, we met with founder Nancy Brinker and Dr. Judy Salerno, Komen's CEO and President, who both spoke about their commitment to the metastatic community. Singer Matt Goss made a special appearance at the race and performed his song "Strong," inspired by his mother's strength as she battled and eventually succumbed to breast cancer. One of my fellow bloggers made a video of his performance, which you can see here.

Last year, I returned from the first Blogger Summit hopeful that Komen's new management team, headed by Dr. Salerno, would turn it in a new direction. I'm glad to report that I am seeing progress. Komen is a big tent, with the resources and heft to represent many different interests. I'm hopeful that its mission statement will continue to take it in a direction that satisfies the needs of all those afflicted by breast cancer.

Survival > Existence,

Related Posts:

My Secret Weekend with Susan G. Komen

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Tami Boehmer's picture

Just came across this when doing a Google search, Debbie. Good overview! I'm hoping we can get something together with Komen with more mets bloggers. It is so much needed!

Debbie's picture

Hey Tami!

Thanks so much! It was a very real pleasure to meet you at the Komen Summit and I certainly hope many more mets bloggers join us next year. See you next year! 

Take care,


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