Why Are You Doing This?

My mom had inflammatory breast cancer. She died in 1983.

The other night I participated in a free WEGO Health webinar: “Navigating Your Health Narrative.” Lisa Emrich, (MS and RA); and Jenni Prokopy, fibromyalgia; and WEGO’s Amanda Dolan offered tips for better health blogging. One basic question any health blogger should ask is “Why am I doing this?”

To paraphrase George Mallory: Because I am here.

Recently a schoolmate posted our first grade class portrait on Facebook. As I studied the faces, distant memories drifted back: Tom’s theft of my Husky red pencil; Scott’s thwarted attempt to cheat on a test and Fred’s pre-luncheon ritual of sitting on his daily baloney sandwich prior to unwrapping it.

What would they remember about me? Probably that I seldom spoke. I was very shy, a situation compounded by being one of three children born in the same year. (I have a twin brother and one who is not quite a year older.)

I used to have a defaced picture of The Haymarket Riot from my sister’s history book. Her friend replaced “Haymarket Riot” with “The O’Brien Family at Dinner Time.” It wasn’t far off the mark. Dinners at our house were raucous gatherings, with everyone competing for their share of attention and food. (Not necessarily in that order.)

Since two of my five brothers were in my class, I had no school news to impart–they always beat me to it. Most of the time I just enjoyed listening to everyone else. I was in awe of my older brothers and my sister. They were bigger, smarter and burdened with the task of setting good examples.

As a World War II and Korean vet, my father was old school all the way. In the early 1970s, hippies were still commonplace. So we heard a lot of anti-mope rants. (“Mope,” “dolt” and “chowderhead” formed my father’s great triumvirate of insults.)

Occasionally, my father would solicit my opinion. Inevitably, my twin, Kevin, would respond for me. “Do you mind?” my father would say, shushing him and signaling for general silence. “I am attempting to talk to your sister. Now, what do you have to say, Kathy?”

I was embarrassed to be singled out. I spoke softly and briefly. At school this often prompted the teacher to say: “Class, could anyone hear that? I didn’t think so. Now let’s hear that again, Kathy, and this time speak up.”

I was quiet like my mother but certainly not as self-effacing. If I was modest it was only because I was too timid to toot my own horn. In spirit, if not in deed, I was like my father–a bit of an intellectual show-off.

“It amused her that our ways were quite opposite,” my father wrote shortly after my mother died. “When I did [something] it would be followed by a detailed commentary on the difficulties of the task and the discomforts I had endured and the magnitude of what I had accomplished and its lasting value.”

If my father painted the back door he would tell my mother it would probably cause an immediate rise in neighborhood property values and make the door itself a place of pilgrimage for connoisseurs of well-painted doors who would come from afar to admire the genius of its brushwork.

“At such times the fond patient eye would fall upon me with a satirical look,” my father recalled. “Puffing out her cheeks to simulate the contours of the Irish face as it pleased her to display them, she would frown importantly and march up and down pointing to herself. My venture into pomposity and egotism would end, like so many of its predecessors, in delighted laughter.”

My mother was diagnosed with inflammatory breast cancer (IBC) in 1981. IBC accounts for between 1 to 5 percent of all U.S. breast cancer cases–NIH classifies it as a rare disease. Although some small progress has been made since my mother died almost 30 years ago, it remains the most aggressive type of breast cancer.

It is estimated that between 1% and 5% of all newly diagnosed breast cancers each year present as IBC; because of its rarity, it is listed with the Office of Rare Diseases at the National Institutes of Health.[1] While the number of cases of IBC is relatively small compared with the overall number of breast cancers, it is still a substantial number compared with many other rare tumor types…We cannot use the small number of cases as an excuse for the lack of clinical trials; rather, we should view it as a mandate for making novel treatment strategies available to all patients with this diagnosis.

via Have We Made Progress in Inflammatory Breast Cancer? Not So Fast – Cancer Network.

IBC patients’ median ages range between 45 and 55 years old. It occurs more frequently and at a younger age in African Americans vs. Caucasians. (See Inflammatory Breast Cancer Foundation – What is IBC? as well as IBC Support.)

I was 15 when my mother was diagnosed with IBC. Unlike other breast cancers, IBC typically does not present with a lump. The breast often looks swollen or red, a change that sometimes can happen overnight.

My mother’s treatment began with a mastectomy in our community hospital. In hindsight, I don’t know why my mother didn’t go to a university hospital–I can’t believe her small town surgeon would have seen many cases of IBC or even garden variety breast cancer for that matter. My parents went to the Mayo Clinic for a consultation. No one in our family had cancer. We didn’t know anyone with cancer. If you had a serious health crisis, everyone knew the Mayo Clinic was THE place to go.

But even the Mayo Brothers were no match for a disease where the five-year median survival rate is approximately 40 percent today. (It was worse in the 1980s. Today, IBC has a three-year survival rate of 42 % vs. 85% for non-IBC disease.)

Although 3-year survival from IBC has improved from 32% in 1975-1979 to 42% in 1988-1992 from the use of combined treatment modalities, women with IBC still have far worse survival than those with other types of breast cancer (all stages and non-IBC histopathological types combined [had a] 3-year survival [of] 85% in 1988-1992)
Source: http://www.ibcresearch.org/research/

From the community hospital, my mother went on to Lake Forest Hospital for in-patient chemotherapy. My older siblings were away at college leaving only my father two brothers and me to visit my mother in Lake Forest and remark on the amenities offered in a rich person’s hospital. (Mothers recuperating from blessed events could order lobster and there was a grand piano by the flight of stairs that led to the maternity ward.)

I hated going to visit my mother there. The nurse’s station had stern notices warning visitors against sitting on vacant beds. As we walked down the hall we would sometimes hear retching or terrible groans emanating from other patients’ rooms.

Our travels also took us to Lutheran General and Northwestern. I can’t remember where my mom had radiation–maybe at Lutheran General. There was a nurse she really liked at Northwestern–a very friendly young woman.

My father went to some of my mom’s appointments, especially if she were trying something new or meeting a new doctor. But most of the time my mother, who didn’t drive, asked which ever child was with her to remain in the waiting room while she saw the doctor.

My family in August, 1975. Nulliparity obviously wasn't a problem.

Oncology regimens have improved dramatically since the early 1980s. In my recollection, my mom’s treatments were on par with Civil War battlefield amputations. I think she had a radical mastectomy–which is no longer done. Today’s anti-emetics didn’t exist–my mom would throw up for days when she was having chemo. Later, when she had radiation, her skin was broken and oozing and her back–either because it was burned or itching or both–was a constant torment.

When I went for radiation treatments last year, I was terrified. I remembered my mother’s agony, how she would beg us to rub her back and how we did it so often for so long that we eventually rubbed a huge hole in the old navy blue cardigan she used to wear.

Thankfully, I suffered no side effects from surgery, radiation or other treatment. (I don’t have IBC, I have run-of-the-mill ER/PR+ HER2 NEU- breast cancer with a low volume of bone mets.)

In those pre-Internet days, there was literally nothing for women with IBC or MBC. General breast cancer information was restricted to large libraries or a few pamphlets from the cancer circuit rider AKA an American Cancer Society volunteer.

“In the mid-1970s, breast cancer was perceived very differently than it is today,” writes Barron H. Lerner. “There was no National Breast Cancer Coalition or Race for the Cure that encouraged women to talk about, and raise funds to control, the disease. Indeed, it was only in 1974 that breast cancer came out of the closet, with the highly public diagnoses of First Lady Betty Ford and Happy Rockefeller, wife of vice-president-designate Nelson Rockefeller. “

In the early 1980s, breast cancer was not daytime television fodder. “Mastectomy” was not a topic Merv Griffin, Mike Douglas, Phil Donahue or Judge Wapner broached. But in the early 1980s, it seems we had a perfect storm of launch vehicles for breast cancer awareness: Susan G. Komen for the Cure was founded (1982); Lifetime TV went on the air (also in 1982); and Oprah made her nationwide debut (1986).

You know what need now? How a little less awareness and a whole lot more UNDERSTANDING? Most breast cancer stories in print and on television make Horatio Alger Jr. sound as subtle as James Joyce. With luck and pluck, the brave breast cancer heroine carries on and ultimately kicks cancer to the curb.

Those are good stories. But that’s not my story.

Last November, I attended a panel discussion called “Many Faces of Breast Cancer: Living with Advanced Breast Cancer,” one of a series of national events AstraZeneca sponsored.

Dr. Sandy Goldberg, a nutritionist and weekend health contributor to NBC Channel 5, moderated the discussion. She told us she had experienced “everything you saw on the tape” referring to an AstraZeneca video featuring three women with metastatic breast cancer.

This set off enraged whispers in my row. Dr. Goldberg seemingly had an early stage cancer discovered in 2000. She did a 14-part, local-Emmy winning series on her breast cancer in 2002. But she apparently does not have metastatic breast cancer. It’s not clear what treatment she had, but at any rate it would seem her treatment ended at least six years ago. In 2002 she launched the Silver Lining Foundation to provide resources to those uninsured and underinsured individuals, often women of color.

According to the foundation’s 990 form, Dr. Goldberg receives a salary of $73,750 or 27% of the net revenues; $96,000 or 36% is spent on mammograms. The rest is spent on other administrative costs like rent, professional fees, salaries and benefits for those other than Dr. Goldberg.

The next day, we saw a student journalist’s online report. “The attendees wore mostly pink,” according to the student. “Some stuck to understated pink handbags or pink ribbons pinned to their lapels, while others celebrated in head-to-toe pink ensembles. They swapped stories, hugs and tears until the expert panel took the stage for the evening’s conversation.”

I spoke to six MBC women before the event began. We were all wearing earth tones: brown, black and perhaps olive green. None of us had any pink accessories. No pink ribbon pins. No one in my group hugged or cried and I observed no such carrying on as I looked around the room. I did see one elderly lady wearing a track suit which may have had pink stripes.

We are women with an incurable disease. Nothing said at this meeting offered any great epiphany. Maybe people were excited about the free food, but I found nothing to celebrate and there were certainly no high fives or fist bumps being exchanged in my corner.

Why would the student write something if it wasn’t true? She probably did see a couple of friends hugging. But, perhaps more likely, people have an idea of what breast cancer and breast cancer patients should be. They don’t like to let reality get in the way of a warm and fuzzy story.

We thought the presentation was going to focus on MBC. It didn’t. We complained to the organizers in person and later in writing. We felt brushed off.

Last October, my local paper featured a breast cancer awareness advertising section. All of the women profiled belonged to the “Treat it and Beat it” sorority beloved of reporters writing about breast cancer.

There was not a single word about recurrence. And yet, until a woman dies
of something else, there is always the possibility her cancer can come back, even if she was successfully treated for an early stage cancer and even if she completed her treatment as long as 25 years ago.

The special section had no insights for MBC women. The only oblique mention of Stage IV concerned a golf tournament named after a woman who died. Beyond the time, place and funds raised, we learned nothing further.

The day after Elizabeth Edwards died, “Today” show host Matt Lauer and Dr. Nancy Snyderman, NBC chief medical editor, recapped Edward’s cancer experience. Noting that Edwards was diagnosed with Stage 3 breast cancer in 2004, Lauer asked Snyderman about Stage 3 survival rates.

At no time, during their discussion, did Lauer or Snyderman mention that Edwards entered the metastatic ranks in 2007 and, in fact, died from metastatic breast cancer, AKA Stage IV.

Snyderman made it sound as though Edwards somehow died of Stage 3 breast cancer.

As if to avoid alarming Stage 3 women, Snyderman warned them not to compare their situations to Edwards’. She offered no such comfort to Stage IV women.

As the interview concluded, the doctor stressed the importance of mammograms and early detection. She said that the real issue is that we are still trying to figure out what causes breast cancer.

No kidding.

As we’ve previously observed, women with MBC literally don’t count. Some estimate that there are 160,000 people living with MBC in the U.S. The reality is we don’t actually know how many of us are out there.

“One hundred and sixty thousand is an estimate only,” author and advocate Musa Mayer told Elaine Schattner last year. “Nothing more definitive is available,” she said, explaining that because the NCI and SEER database record only incidence, initial treatment and mortality data, what happens in between — in terms of recurrence and the exact number of women living with metastatic breast cancer — is undocumented.

“It is as if these metastatic women are invisible, that they literally don’t count,” she indicated. “And when we don’t count people’s needs, we can’t provide or plan for them.”

Why I am doing this? Because I refuse to be invisible.

I will be seen and heard.

I will speak up and speak out.

I will make a difference.

Two of my nieces with their grandmother's high school self portrait.

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10 thoughts on “Why Are You Doing This?

  1. Eileen says:

    I’ve been discussing this issue (passionately) with my oncology counselor and anyone else who would listen – well, this and the whole ‘survivor’ label, how it affects folks with MBC. Interestingly enough, when I spoke to a group at a BCw/Mets retreat recently, the gals did express a fairly wide range of feelings on the issue. That said, they did all agree that we (and our needs) are largely marginalized by the media and the BC community at large. Thank you for being such an outspoken and articulate representative of our own little corner of the BC experience!

    • Ginny Knackmuhs says:

      What would that teacher say now about shy, quiet, retiring “Kathy”. I’m so glad you learned to SPEAK UP and be an inspiring, outspoken advocate for all of us with metastatic disease. Keep it up!

      • katherinembc says:

        She would probably move my desk–I would have to sit directly in front of her so she could keep an eye on the troublemaker…

        Thanks for reading!

        KOB

      • Laurie King says:

        I love what you wrote and especially loved the pictures of your family. I am so glad you and I have reconnected. I am inspired by you. You go girl!!!

        In regards to having to sit right in front of the teacher. Don’t worry I also belong to that prestigious group. Sister Rosalie at Carmel hated me. My desk was the only desk facing the window. Why? I still don’t know (at least I didn’t have to look at her) and she loved to stick her long red fingernails into my scalp as she would say, “nunca, nunca, nunca!” I hated that woman. Since when are nuns supposed to have long red nails? I was used to Sister Mary Margaret at Santa Maria who would bite her nails and spit them into the corner near her desk. Long live the nuns

  2. Anna says:

    I love your family photos and thank you for sharing the story of your mother. I can’t imagine the devastation for you and your family at losing her at such a young age. I’m with you Katherine. I will be counted and I will continue to speak out.

  3. nancyspoint says:

    Katherine, Reading your story about your mother broke my heart and reminds me how I watched my mother literally whither away before my eyes from stage IV bc. Like you, I used to be a quiet and reserved person. Now I can’t believe the things I am saying, or I guess typing. Typing allows us to say a lot more, don’t you think?? Anyway, keep talking. I will too. It shouldn’t matter what stage or type of cancer a woman (or man) has. It all counts. It all matters.

  4. HealingWell says:

    A very touching post. Thank you for sharing your story.

    I like you found the Wego webinar very thought provoking and helped me focus on why I blog.

    Peter

  5. ElleB says:

    Wow. Thank you.

  6. Gayle Sulik says:

    Yours is a story we need to hear. Thank you for sharing it. Thank you for raising your voice. Thank you for being heard.

  7. Amy Berman says:

    Katherine, I appreciate your writing about those of us with stage IV breast cancer. I completely agree that I don’t revel in wearing pink and cheering about survival when our group is considered incurable. Yes, I am living today and a happy person. But the focus on the cure negates our group’s current reality.

    Having been diagnosed with inflammatory breast cancer that appeared overnight and at stage IV, I am now steeped in the research. It’s not good.

    Inflammatory breast cancer (IBC) is an “orphan disease” poorly funded with little in the way of advances in the science despite being within one of the most highly funded diseases, breast cancer. Today breast cancer 5-year survival rates overall are at 87%. But that includes those of us with IBC who skew the odds. If we were not included that number would be over 90% survival. Yet fund and attention still go to the area were we have made strides and not to area that is the deadliest form. As a nurse and a person with metastic disease I call for a new perspective and a realignment of the national funding priorities.

    Thank you for advocating so beautifully on behalf of those who have metastatic breast cancer.

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