17 Years Later, Stage 4 Survivor
Within days, a thunderous chorus comes back, 200 voices, 300. A few of them ask, “How can this be?” Sometimes they begin, “I’m crying.” Many answer in kind: “I’m here, too. It’s now three years.” “Five years.” “Three months.” “Seven.”
What we’re doing, in a way, is checking for lights in the darkness.
Now there probably aren’t a lot of Web sites where the announcement that you’re around and breathing would cause anyone to take notice, let alone respond. But this is a site for people with Stage 4 breast cancer, something I’ve had for 17 years. The average life expectancy with the diagnosis is 30 months, so this is a little like saying I’m 172 years old: seemingly impossible. But it’s not. I first found I had the illness in 1988, and it was rediagnosed as Stage 4 in 1993. That’s 22 years all together, which is the reason I post each year on the anniversary of the day I learned my cancer was back: to let women know that it happens, that people do live with this for years.
I tell them that when the cancer returned, it came on so fast, spread so quickly, that I was given a year or two to live. Within months, the disease turned vicious. It started breaking bones from within, and was coming close to severing my spinal cord.
Nothing was working, till a doctor tried a hormone treatment no one used much anymore, and the cancer turned and retreated, snarling. It remains sluggish but active. Every so often, it rears its head; when it does, we switch treatments and it slides back down. In that way, I stay alive.
Two and a half years after the Stage 4 diagnosis, I confessed to my mother that the doctors had said I had two years to live, tops. I’d kept this information to myself because if you say it, it’s true. I told her this laughing, as if we were trading preposterous stories. “Well, I guess you’re going to have to hold your breath if you’re going to make that deadline,” she replied, in her slow Southern drawl when I gave my previously stated expiration date.
I spent the next five years holding my breath, then did the same for another five. I enacted every New Year’s resolution, past and future, all at once. Quit work that had grown stale and became a writer. Wrote a book. Went to India on assignment, fell in love with the language that was swirling around me, went back to live for a year and learn Hindi. Didn’t realize the reason I’d come to dislike that hyperbolically overachieving Lance Armstrong was that his behavior was too familiar. Take a nap, Lance! I’d think to myself, though in truth I couldn’t either.
But if I was verging on radical levels of life consumption, I had a reason: No one had told me I wasn’t going to die soon. About 12 years out, my doctor finally did.
The reason they can’t is that 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 long-distance survival; not one doctor has specialized in this field.
But as Dr. Gabriel N. Hortobagyi at M.D. Anderson Cancer Center in Houston stated, that you can find women whose breast cancer also spread to organs other than bone, for whom 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.
One reason, as the breast surgeon Dr. Susan Love told me, is that “many clinical trials are funded by the drug companies to run for five years,”obviously not enough if you’re investigating long-term survivors. But through her institute, the Dr. Susan Love Research Foundation, she has begun to conduct research.
I write to them (to myself) that of course this is tough: the waiting to see if the shadows are multiplying, the physical pain, the bouts with terrible blackness.
“Had a pajama party with my oldest friend, laughing through the night in matching pajamas about old times.”
“Came in second in a bridge tournament.”
“I went on a wonderful camping trip with my family.”
“Seeing my older daughter grow taller than me. She’s now 5-9.”
One thing I don’t ever think to say: When I was told I had a year or two, I didn’t want anything one might expect: no blow-out trip to the Galápagos, no perfect meal at Alain Ducasse, no defiant red Maserati. All I wanted was ordinary life back, for ordinary life, it became utterly clear, is more valuable than anything else. I don’t think to say it, and I never will.
Katherine Russell Rich (November 17, 1955 – April 3, 2012) was also an American autobiographical writer from New York City. Her first book, The Red Devil: To Hell with Cancer, and Back, told of a clash of cultures occurring when the author’s breast cancer treatment caused her to lose her hair just when both romantic and professional difficulties came to a head. She had wanted the book to be called Chemosabe.[2]
Her book Dreaming in Hindi: Coming Awake in Another Language, details a year she spent in India on assignment for The New York Times. Having been sent there to interview the Dalai Lama‘s doctor,[3] her assignment turned into a journey of linguistic awakening and of self-discovery.[4] It was nominated for the 2011 Dolman Travel Book Award.
Rich’s articles were featured in The New York Times, The New York Times Magazine, The Washington Post, The Oregonian, O: The Oprah Magazine, Vogue and Salon. She received several grants and fellowships, including ones from New York Foundation for the Arts, the New York Public Library’s Center for Scholars and Writers, the MacDowell Colony, Yaddo, and a Guggenheim Fellowship (2011).[1]
Rich was interviewed for and was the subject of the third act of This American Life radio blog Episode 425, which aired on January 21, 2011. [5]
References[edit]
- ^ Jump up to: a b c http://www.katherinerussellrich.com/bio_katherine_russell_rich.html
- Jump up ^ http://womenshealth.about.com/library/blchatrich.htm
- Jump up ^ http://www.publishersweekly.com/article/CA6658373.html
- Jump up ^ An excerpt: http://www.guernicamag.com/features/1070/dreaming_in_hindi/
- Jump up ^ http://www.thisamericanlife.org/radio-archives/episode/425/slow-to-react?act=3”
Within four months, her lung tumors started to shrivel. By late 2006, they were gone. Today Belvin, now 27, is off all treatment. She spends her time with her husband and 1-year-old daughter, Lilly Elizabeth, whom she calls “a miracle baby, after all we have been through.”
Why do some patients beat the odds? Some go on experimental medicines that help them, but few others. Others take novel combinations of approved drugs that are too toxic for most to endure. The most mysterious cases of all are so-called spontaneous remissions, where tumors vanish without any treatment. Only a handful of such cases are reported in the medical literature each year.
Each year, 566,000 Americans die of cancer. In 2004, cancer treatments cost $72 billion, according to the most recent National Cancer Institute report. And by all accounts, they have since soared.
The Agency for Healthcare research and Quality (AHRQ) estimates that the direct medical costs (total of all health care costs) for cancer in the US in 2014 were $87.7 billion. A 2014 study examining the costs of surgery involving various types of cancer found average costs ranging from $14,161 to $56,587. The costs included admissions, readmissions, physician services and other costs (outpatient visits, hospice care, home health agencies or medical equipment).
Latest Statistics at a Glance: The Burden of Cancer in the United States. In 2016, an estimated 1,685,210 new cases of cancer will be diagnosed in the United States and 595,690 people will die from the disease. ALSO This year on 2017, about 600,920 Americans are expected to die of cancer – that’s more than 1,650 per day. Cancer accounts for nearly 1 out of every 4 deaths in the United States. https://www.cancer.org/cancer/cancer-basics/economic-impact-of-cancer.html https://www.theatlantic.com/health/archive/2013/04/why-chemotherapy-that-costs-70-000-in-the-us-costs-2-500-in-india/274847/ ………..
That some patients respond better to certain drugs than others is a focus of furious scrutiny at top labs. The reasons include everything from the immune system, to the particular mutations in a given tumor, to the sensitivity of stem cells inside a tumor to treatment.
One big reason why some patients do better than others is that their tumors may have particular sets of mutations that make them exquisitely sensitive to one drug or another. These rare responders tell us that “there are some very unique, relatively tumor-specific mutations that must be occurring in these cancers that are therapeutically exploitable,” says oncologist Ronald Natale of Cedars-Sinai Medical Center in Los Angeles.
Researchers are just beginning to discover the gene mutations that influence drug response. For example, about 10% of lung cancer patients have certain mutations in a protein called EGFR that make them far more likely to respond to Genentech‘s Tarceva. Meanwhile, oncologists showed last year that about 40% of colon cancer patients whose tumors have a mutation in a gene called kras never respond to the popular Erbitux from Eli Lilly .
Some researchers are even working to personalize treatment by implanting tumors directly from patients into lab mice and then seeing which drug combinations work best. This method, says Johns Hopkins University oncologist David Sidransky, may allow drug companies to perform trials of drugs on mice with human tumors to help pinpoint which drug combinations will work best against which types of tumor mutations.
Scientists are also finding tantalizing evidence that the immune system sometimes kicks in to play a role in combating cancer. This has been hotly debated for decades–and indeed many scientists remain unconvinced. But rare cases of spontaneous remission sometimes do occur, particularly in melanoma, kidney cancer and a few other tumors.
That’s what Charles Burrows experienced. In November 2005, he was diagnosed with terminal liver cancer and given two months to live. Then, three months later, without any treatment, his tumor simply vanished. The case was so unusual that his doctors published it in a medical journal last year. Says Burrows, “I won a lottery, and I don’t understand why.”
While numerous explanations have been proposed for these mysterious remissions, one of the likeliest is that the body’s immune system gets involved.
A spontaneous remission is “either divine intervention or the immune system,” says Jedd D. Wolchok, an oncologist at New York’s Memorial Sloan-Kettering Cancer Center. It’s also possible that ordinary cancer survivors, people who beat the disease after getting radiation, chemotherapy or surgery, get an assist from their own immune systems.
Big drug companies, including Pfizer , Bristol-Myers Squibb and Sanofi-Aventis , are doggedly pursuing drugs that aim to boost the immune system to fight cancer. GlaxoSmithKline is in final-stage tests of a vaccine to prevent lung cancer from coming back after surgery.
Easier said than done, of course. Some patients, apparently, need only a small trigger to also propel a massive anti-cancer attack. With most others, the cancer cells fight back successfully and even co-opt immune cells to aid their growth. Some tumors may simply be more visible to the immune system than others. In addition, there are also numerous molecular brakes inside the body that keep the immune system from rampaging out of control; cancer cells evade the immune system by manipulating these brakes.
