MBC: ‘A Constant State of Hopeful Dread’

Here is a post I wrote last October for AZ Connections:

At a 2009 breast cancer seminar, I met two MBCN volunteers: Joani Gudeman and Shirley Mertz. I had never met another person with metastatic breast cancer. Joani and Shirley made me feel less alone. Their activism inspired me.

In 2008, Shirley and her fellow volunteer Susan Davis launched MBCN’s drive to formally establish October 13 as National Metastatic Breast Cancer Awareness Day. In October 2009, they succeeded: The Senate and House each unanimously passed a resolution to support that designation.

“It is critical to the thousands suffering from Stage 4 illness and to the general public that the voices of metastatic breast cancer patients be heard,” wrote Joani.

I would like to add my voice to that chorus.

I will never forget the day in 2009 when I found out I was of one of 155,000 US people living with metastatic breast cancer.

The oncologist said my breast cancer had spread to my lumbar vertebrae:  “Hopefully the disease will remain under control for a long time although an ultimate cure is probably unattainable.”

You know how when you are going up in an elevator and sometimes it feels like the floor is dropping out from beneath your feet? That feeling lingered with me for weeks.

My cancer center’s library had two shelves of breast cancer pamphlets, mostly for women with early stage disease. One had chapters such as “Why You Should Get Prompt Attention,” and “Not All Lumps Are Cancer.”

Not very helpful to my particular situation.

I kept hunting through the shelves, the oncologic equivalent of Goldilocks sampling each bear’s porridge. Finally, I found a brochure that was just right: “Diagnosis: Metastatic Breast Cancer…What Does It Mean For You?”

This slim MBCN brochure promised “up-to-date facts — demonstrating that today, more women and men with metastatic breast cancer are living longer, productive lives.”

The brochure featured 15 questions and answers about metastatic breast cancer. Question No. 1 was: “Am I going to die?”

That cold and unspoken fear had permeated every cranny of my being for weeks.

“Though you may be concerned by statistics you have heard, keep in mind that every individual is unique,” advised the MBCN brochure. “Because statistics are based on the general population, they do not reflect the experience of any one individual. Each person brings to the table a unique set of characteristics that influence her or his experience with breast cancer. In addition, no really accurate statistics predicting survival for metastatic breast cancer patients are available today.”

Those few sentences gave me a lot of hope.

It’s been two years since my diagnosis. My treatment has been mild and I am very fortunate to be stable. But it’s a strange existence. The late Susan Davis, a tireless volunteer with the MBCN, said it best. Susan lived with mets for almost a dozen years. Although she endured progressively more grueling treatments, she said ultimately even the harshest side effects weren’t as difficult as the mental fight.

“I live in a constant state of hopeful dread,” she wrote. “I am hopeful I will be stable. I dread that my next test will show I am not.”

My mother died from inflammatory breast cancer a few weeks after I graduated from high school. Mom had no support group and practically no resources to cope with this rare disease. I have learned so much from other patients. I am grateful to have instant access to them via the Internet. Volunteering with the Metastatic Breast Cancer Network and other advocacy groups is very important to me. I want to help other patients and their families. I want the general public to be better informed about this disease. I want to make a difference.

The best thing you can do for someone with metastatic breast cancer is to be there for them—not just when they are first diagnosed, but for the long haul.

“I hate when people feel sorry for me and give me that look,” says one of my friends who has metastatic breast cancer. “We don’t have to talk about cancer all the time. Normalcy is great! I am still here—with hair or even bald. I’m here. Some days are harder than others, but I try to live as much as possible

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8 thoughts on “MBC: ‘A Constant State of Hopeful Dread’

  1. Cynthia says:

    I have recently been diagnosed for the 2nd time with metastatic breast cancer. First time was 2010 with spine and pelvic bone involvement. Radiation helped. I opted for no more chemo as my first go round with it was too gruesome for my particular chemistry. Been on Xgeva for a while now, along with Femara. This cancer is now in my liver and lungs. Small tumors…now am experimenting with various chemos – tried the stay-at-home oral xoleda (sp?). Intolerable. Now have had first dose of Taxol. Found a nurse in my practice who is willing to forgo another hideous port and is using a vein. So far so good though I will be losing my hair again. Fighting for my life and hating the facial flush and hairlessness. Crazy, right? PS I’m 63. First diagnosis 2007 Stage 1, full out chemo & radiation and Arimidex. Thanks for listening. I’m frightened depressed and continuing the “fight”. I’m a dove not a hawk. PS I’m scared.

    • katherinembc says:

      Hi Cynthia
      Thanks for writing. Sounds like you have quite a lot going on. I haven’t had chemo, so I can’t offer any advice. I did want to make sure you knew about the Breast Cancer.org discussion board. They have a special section for people with mets–I know there are many women who have been on Taxol. See http://community.breastcancer.org/forum/8

      You might also try the Y-Me Your Shoes Hotline:

      Y-ME maintains a commitment to its core mission of providing peer support for patients every step of the way..there is still no substitute for talking to someone who has been in your shoes after a doctor tells you that you have cancer. We remain the only place in the world where someone touched by breast cancer can call – 24 hours a day, 7 days a week, 365 days a year – and be understood in over 150 languages.

      We can also match callers with a peer counselor who has faced a similar breast cancer experience through our Survivor Match program. And the Hotline is not just for patients – caregivers, partners, and loved ones can also receive information and support through our Partner Match program.

      Y-ME Hotline peer counselors can be contacted by phone 1-800-221-2141 or by email, with real-time interpreters available in more than 150 languages
      http://www.y-me.org/about-y-me/Y-ME-hotline

      Hang in there

      • Mrs. Bono Vox says:

        Thanks for this marvelous resource. I am 42 and was diagnosed in Nov. 2010 with stage 1 invasive breast cancer. Found out I’m BRCA2+ also, AFTER getting cancer and after my mom, who is almost 73, had stage 1 breast cancer twice (2 separate occurrences/cancers). This month she found out her 2nd breast cancer has recurred in her bones and her liver. I am so glad to find a blog which combines useful links, facts and humor. I am so tired of hearing stupid remarks like “but your mom had a mastectomy” or “but wasn’t she stage 1”? Or even worse, “you never know, any one of us could be hit by a bus tomorrow.” Blah! Thanks for the opportunity to rant. At the moment I am OK, at least according to my oncologist, but who knows how long that will be? Or how long my poor mom can fight this for a 3rd time?

  2. You have done a terrific job of informing people how to help make a difference. Thank you.

  3. Great post. Thanks. My wife died n 2010, and only had metastatic breast cancer for 11 months. But everyone is different. Hope and battling must continue along with more $$$ for mets research.

  4. jeanne says:

    thank u so much for your blog. I was told i have stage four MBC in july 2010 after telling my doc for 9 months that i was in so much pain. i would call him on a week-end saying that my legs came out from under me and got know reply. i just kept going to see him he would tell me it was pulled muscles {all over} i would say. i begged for a MRI after the nine months because i could no longer sit up or sit myself down. he called back after the MRI saying when did u brake your neck? He was crazy for sure. wouldn’t i know it if my neck was broken?
    After some bone scans i found out my ribs sternum shoulder,pelvis was broken with 2 collapse vertebrata. there is nothing like the pain i just wanted morphine stat. when they gave me the morphine it didn’t touch the pain so the gave me something stronger and that’s all i cared about for a week or two.
    Since then my brain woke up and i had to try to comprehend what this all meant to me. I know I want to help others. I have received more help then i could ever ask for and even with all the help i am still upset all the time i cry more then any other time in my life not because I’m going to die but at the thought of what it will be like down the road just like your friend that said { i live in a constant state of hopeful dread.}
    there is a cancer group in my area that has asked me to help run and art therapy group which I’m so excited about maybe this will be the start of my giving back. please keep up your blog it is something i look forward to when i open my mail. it must be so much work for you so i wanted to let you know that it not only gives me info but any one else i bump into. I have never wrote to any before so this is the beginning. thanks again Jeanne

  5. jeanne says:

    oh another thing is i also could only find pamphlets on early stage the only ones i found on my stage pretty much just said get you things in order. Very frustrating to say the least.

  6. This is such a great post. Thank you for re-posting it. “Living in a constant state of hopeful dread,” that sums it up pretty well doesn’t it? Everyone is so much more than a statistic for sure. That gives us all hope and the freedom to be true to ourselves as well.

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