Katherine Russell Rich: 18 Years of Inspiration for People With Metastatic Breast Cancer

Doctors  called Katherine Russell Rich an outlier. People with metastatic breast cancer called her a hero.

Rich died April 3, 2012 at age 56. She lived with breast cancer for 23 years; and for 18 of those years she had metastatic breast cancer.

“When you’re diagnosed with stage IV breast cancer, the average life expectancy is two and a half years,” Jonathan Menjiver said during a January 2011 “This American Life” interview. “You meet women who have lived 5 or 10, but beyond that [according to Rich], there’s a tiny sub-category that lives 20 or 30 years. Just 2% of all cases.”

Rich, wrote two books: “The Red Devil: To Hell With Cancer and Back” (1999); and “Dreaming in Hindi:  Coming Awake in Another Langauge” (2010). Her byline appeared in the New York Times, the Sunday Times Magazine, the Washington Post, Slate, and O, the Oprah Magazine. She received a New York Foundation for the Arts Award, and fellowships at the New York Public Library’s Center for Scholars and Writer, MacDowell and Yaddo. She taught in the MFA program at Lesley University (Cambridge, MA).

Rich was first diagnosed with breast cancer in 1988 at age 32. Five years later, she apparently learned she had metastatic breast cancer.

Her treatments, according to Publishers Weekly, included a lumpectomy, radiation, several protocols of chemotherapy and hormones, a bone marrow transplant and alternative healing techniques. (Bone marrow transplants and stem cell transplants were common in the 1980s and 1990s . This treatment is no longer administered, because clinical trials showed such transplants were no better than  less toxic treatments.)

In 1992 she lost her job at GQ, and it was a year before she got another full-time job, as an editor at Allure magazine. Shortly after she started at that magazine, a routine CAT scan showed tumors in her spine.

“She endured back braces, paralysis and drugs that made her sick and caused her weight to balloon,” according to a People magazine article promoting Rich’s first book. “In December 1993 two vertebrae snapped when she bent down to pick up an envelope…Doctors told her that her only hope was a bone-marrow transplant. She began another round of chemotherapy to prepare for the transplant, which was performed in the fall of 1995.
“Though she was despondent, Rich fought on. ‘She was a young woman who never said, Why me?’ says her oncologist, George Raptis… ‘I felt belligerent about cancer,’ Rich told People. ‘You took everything, but you’re not taking my ability to enjoy life.'”

How did Rich live with mets for an amazing 18 years?

We don’t know.

“For all the pink-ribbon hoopla, despite the hundreds of millions that have been poured into breast cancer research, hardly anyone has looked into the why of longdistance survival; not one doctor has specialized in this field,” Russell explained in a 201o New York Times article.

According to Rich, the Two Percenters typically have estrogen-positive disease that has spread to the bone (vs.  lung, liver or elsewhere) and do well on antihormonals. She added: “But as Dr. Gabriel N. Hortobagyi at M.D. Anderson Cancer Center in Houston told me, you can also find women whose breast cancer spread to organs other than bone, for whom [anti]hormone therapy did exactly nothing, who had their lesions surgically excised and who have been free of cancer for 30 years. None of these women could have expected to live. You just don’t know, and neither, unfortunately, does the medical field.”

Rich refused to be defined by her disease. When she felt an ominous buzz in her bones or just plain uncertain, she would ask herself, “How am I right now?”

“And each time, the answer is, “Fine. Stay right here, in this day, stay right here in your mind.” That’s one of the things I say to counsel myself. Also, “Leave room for the God factor—no one can say, with ultimate truth, what will happen.”

And: “When you’re afraid to move forward, ask yourself what’s the worst that can happen.” One night, on chemo, I was comparing notes on the phone with a friend, another cancer patient, who said, “When you’re fighting the insurance companies, don’t you ever think, ‘What are they going to do, kill me?'” It is, I’ve decided, an exemplary motto.”

Dr. Raptis often brought med students to meet Rich. “He has me talk to them about going to India, about living my life,” Rich told Margaret Jaworski. “I was really grateful to him and to anyone who didn’t talk to me as if I was only a cancer patient,” she says, “because all cancer patients are other things too. They are full human beings.”

Advertisements
Tagged , , , ,

21 thoughts on “Katherine Russell Rich: 18 Years of Inspiration for People With Metastatic Breast Cancer

  1. Janis says:

    I am sad that she died, but hopeful that she lived so long with Mets.

  2. Thanks for sharing. This is one of those cases where the mind could have been the key to her living not only longer, but fuller.

  3. Cheryl says:

    This gives me hope that I will live more than 2 1/2 years.
    Such a loss.

  4. Thank you for sharing this, Katherine. The message of Ms. Russell-Rich’s story shouldn’t be lost.

  5. Katherine – As always, an excellent article. Ironically it comes on the day that this article appeared in my Google alert: http://www.medscape.com/viewarticle/761596. Title: Five Cancer Practices That Must Stop. Key points made.

    • They should limit MBC patients to three types of chemo: “If a patient’s cancer has grown during 3 different regimens, the likelihood of treatment success is so poor and toxicity so high that further anticancer treatment is not recommended,”
    • MBC patients and those likely to metastasize should begin palliative care at the start … or paraphrased …. should accept the inevitable and start working toward it. “Best practice would be continuation of palliative care started concurrently at the time of diagnosis for ‘any patient with metastatic cancer and/or high symptom burden,”
    • Those diagnosed early should be treated as cured. “The majority of patients with breast cancer diagnosed today present with early-stage, node-negative disease that is found on screening mammography,” “As a result of earlier diagnosis and the efficacy of adjuvant therapies…most of these women have a normal life expectancy and a low risk of recurrence.”

    As you well point out, we have no idea why some MBC patients live long and others do not. Drugs are miserable failures for some and keep others alive for years. And many patients, who are diagnosed early, are metastasizing. There is much that needs to be studied prior to making such recommendations.

  6. Tears are streaming down my face. As a metastatic patient myself I have clung to Katherine Russell Rich’s story as inspiration and I pray that I too will have a very long and full life. She will be sorely missed.

  7. What a courageous soul. Beautiful tribute.

  8. Laurie says:

    “because all cancer patients are other things too. They are full human beings.” Yes!!! And only others who walk this road can fully understand how meaningful that statement is to those of us with mets. 18 years would put me at just about Katherine’s age…thanks so much for sharing her story.

  9. I am so grateful that you wrote this…I will search for her writing…and by the way, your writing is wonderful!

  10. christy says:

    WOW! What a fighter! My sister Lori was diagnosed with Brain Cancer (GBM) on her 49th birthday in May. She did the usual Radiation & Chemo & fought hard and was doing quite well, until October when she was experiencing pain in her neck, back & arms. It was METS in her spine, they operated for 4 hours but could not get it all. She only lived 25 days after that. Her battle was shot, 6 months & 6 days. I wish it were more like Katherine’s……….I have her 12 year old daughter to raise now……We are involved in the bark for Life & Relay for Life w/ the American Cancer Society. We will continue to fight for Lori!

  11. […] across a post from fellow metastatic breast cancer warrior Katherine O’Brien on her blog ihatebreastcancer.  Then I started to […]

  12. Truly an inspiration. As someone who has MBC it gives me hope for a longer life. I certainly agree with “living” to the fullest as much as you can. It can be hard sometimes but I am going to keep Katherine’s story in my heart and mind. I’ve already beat the odds as according to one DR last January, I wouldn’t be here now. Well I am. I don’t agree with starting to live with the palliative care either. That just seems like preparing to die to me. One of my mantras is a line from “The Shawshank Redemption” that Red says, “Get busy living or get busy dying” I chose to work on the former. Sending my love and energy out to all other BC and MBC sufferers. Keep up the fight!

  13. Thanks for this wonderful tribute that once again emphasizes how little we know about metastatic breast cancer. I’ll be passing it along.

  14. Arun says:

    Thank you very much for sharing this…and i salute my heartful tribute….thank u

  15. […] Russell Rich, who died last week at the age of 56. As reported by Katherine O’Brien in the I Hate Breast Cancer Blog, Rich lived with metastatic BC (MBC) for […]

  16. Ally K says:

    My name is Ally and I live in Adelaide Australia with my beautiful husband and my 2 beautiful children aged 9 and 11. I had very early breast cancer 3 years ago – a frightening experience. My world stopped and so did my families. It wasn’t in the lymph nodes but to be on the safe I had a double mastectomy chemotherapy and tamoxifen. Fantastic results
    The surgeon said to me Ally, go and enjoy your life – you are.cured!! Which I did. I was so grateful so happy and so relieved. 3 years passed, 2 days before Christmas I was diagnosed with spots on my spine – it has spread to my bones. Bloods all good and body scan clear. I feel like I’m in a very dark place. I cry and cry. I get so sad. Not for me but for my children. I stare at there faces all the time and my heart feels broken. I have had adversity in my life so I know pain and recovery. But this is different. So different. I can’t run anywhere and find comfort. Everywhere I go is dark. My oncologist is treating me with hormones – I’m confused and lost – I only have this avenue of communication to hear from people who have hope to share. My heart is breaking and I need to get strong. My life was beautiful amazing fulfilling and my little children need me to love and comfort them. I know it has only been 2 days since hearing the news after scans etc but I don’t see a light or I don’t feel Gods comfort Please help me by sharing your stories of hope. I want to be strong. I want to laugh again. Thank you for listening. Ally xx

  17. Leelee says:

    I was diagnosed with DCIS in June, and fearsome as it was, I feel so blessed to have found it early. I started reading, and saw that beyond all the racing and walking and pink ribbons, there was another story that seemed to be staying in the background; the women with stage IV. So, I typed in “what is being done for stage IV”, and I just read Katherine’s story, and wanted to see how she was now. I cried when I found out she had passed away. I guess coming from an ignorant standpoint I am wondering if there is a way all or most women with stage IV can’t live with and manage it like a chronic illness. I wish there was more research being done; but like I said, I am really uninformed about any research that is being done for this specifically. God bless you, Ally.

  18. […] Metastatic breast cancer unfortunately is not among the metastatic diseases that can be cured–like testicular cancer.  Lance Armstrong had mets:   his testicular cancer spread to his brain, lungs and abdomen. He had his last chemo 17 years ago and, in all likelihood is cured. Someone with metastatic breast cancer would be THRILLED to have lived 17 years with metastatic disease–of course, on the downside, they would almost certainly have been on chemo for most of those 17 years… […]

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: