I have used this blog to tell my cancer story. As my treatment fades into the background and my remission remains an open question, I am in that vague gray territory of Cancer Limboland.
Because of this, I read cancer stories avidly, enough so that I am going to deign to join the end-of-year summarizers that make picks for the year’s Big Stories.
Here are my picks for the Top Cancer Stories for 2011:
Targeted vaccines hold promise of cancer prevention –– and treatment. Gardasil, a vaccine for human papillomavirus (HPV), gained greater notice after Michele Bachmann falsely claimed that it caused retardation. In fact, Gardasil has been shown to be safe, and HPV prevention stands to decrease rates of cervical, oral and throat cancers. Many pediatricians are now recommending that pre-teens start on a schedule of vaccinations, potentially reducing the number of these cancers in the next generation.
Provenge, a vaccine to treat metastatic prostate cancer, came out in 2010 and has been shown to extend life expectancy on the average of four months. This has led to a heated medical ethics debate: is four months of life worth the almost $100,000 price tag? As insurance companies and academics weigh in, the company responsible for the drug has seen its stock shares plunge, potentially discouraging further research into vaccines for other cancers, including bladder, brain, melanoma, and blood cancers. (For a complete list, scroll to the end of this article.)
Chemo shortages effect cancer patients, prompting President Obama to sign an executive order to monitor production. I have pored over the stories (such as this one and this one) about chemo shortages. I know a number of patients who have had treatments delayed because of the underproduction of these drugs. Over 180 lifesaving medications have been unavailable, including ones used to treat childhood leukemia, breast, ovarian, and colon cancer.
The shortages are a multi-factored problem. The U.S. has a decentralized medical system, inconsistent insurance coverage rules, and a pharmaceutical production system that rewards the production and sale of new formulations over old drugs that can be sold as generics. In any case, the situation is dire, and lives are on the line. In November, President Obama took a step to issue an executive order to push on this issue. But clearly, more needs to be done.
While cancer survival rates increased, gaping disparities persist based on education, race, and income. In June, the American Cancer Society released statistics about cancer survival rates showing glaring disparities in subpopulations in the US. The heart stopping line of the news coming out of this report:
“If we eliminated both educational and racial disparities….what we’re seeing is we can eliminate 43% of cancer deaths in men and 30% in women.”
Cancer is disproportionately affecting –– mortally wounding –– some communities over others.
The number of cancer survivors increase, as do the number of survivorship programs. There are now 12 million cancer survivors living in the United States. In 2006, the Institute of Medicine recommended that all cancer patients receive a survivorship plan, individualized for their treatment and medical history, giving guidelines for maintaining and monitoring their health. In 2010, the Center for Disease Control introduced a National Action Plan recommending a Public Health Approach to survivorship care. Along with the Livestrong organization, survivorship is increasingly recognized as an important component of cancer care.
Survivorship care means a lot to me, because it gives people tools and a plan, and, ideally, the socio-emotional support they need. I would like to see these programs broaden their reach, touching more patients and their families and caregivers. This past year I heard of a woman committing suicide during treatment. I learned later that the suicide rate among cancer patients is double that of the general population, with men being at the greatest risk. Survivorship plans need to be initiated at the time of diagnosis, to help support patients through treatment. Support means compliance, which, in the best cases, means better outcomes.
Criticism of the Susan G. Komen Foundation pushes them to change the name of Breast Cancer Awareness Month to Breast Cancer Action Month. While this may seem like a small thing, to me, the name change shows that America’s favorite charity is yielding a little ground to critics (myself included) decrying corporate pinkwashing. As “Pinktober” nets big profits, it has been criticized by news outlets as disparate as the Wall Street Journal and the Huffington Post. Much of the outcry came at the end of 2010, when it became widely recognized that the Foundation was suing smaller organizations who dared to use its trademarked phrase “For the Cure,” resulting in ridicule from longtime supporter and comedian, Stephen Colbert.
Perhaps it’s wishful thinking, but I see Komen’s shift from the language of “awareness” to the more politicized “action” as a potential shifting of the tides. From the response to my own post, I think the public is wising up to empty consumer-oriented pink ribbon slacktivism and demanding research — and real cures.
Of course, if you or anyone you love has been touched by cancer, that is the biggest news of all.
I would love to hear your thoughts on the Big Cancer News of 2011.
I hope that 2012 brings you and your loved ones peace, love, and health.
For me, part of what it means to be Jewish is to live my life on two different calendars. There is the calendar of daily life and business, the Roman calendar that says today is October 13.
Then there is the calendar of my spiritual life, the Jewish calendar, that summons me to deepen my understanding of humanity and marvel at the miracle of existence.
The two calendars often clash, like when my work schedules meetings on Holy Days. Juggling these conflicts is a reality of being an observant Jew.
But sometimes the two calendars bring surprising confluences, resonating off of one another like notes in harmony.
Today is one of those days.
As I said, it’s October 13, which in my secular cancer world is Metastatic Breast Cancer Awareness day. In my spiritual life, it is the first full day of Sukkot.
My first personal experience with cancer came with my stepbrother’s diagnosis in 2006. I was at the hospital when he was handed the devastating scan that revealed a body riddled with disease. Metastatic cancer, for me, is not a hypothetical. I have seen it play out to its horrid and ugly end. I am very aware of metastatic cancer.
Sukkot comes right on the heels of Yom Kippur, a time of stripping one’s self down and coming to terms with our all-too-human imperfections. It is a time to confront our mortality and the urgency of righting our wrongs. It is a holiday of humility.
During Sukkot, we are commanded to dwell joyfully in a temporary structure, the sukkah, for a full week. Traditionally, people build their sukkahs the day after Yom Kippur, symbolizing the way we build ourselves back up after making ourselves humble.
There are many interpretations of living in the sukkah, but here is my favorite:
Spending time in the sukkah, one feels the raindrops, hears the crickets and birds, smells the falling leaves, and swats away insects. We are reconnected with the cruel, raw beauty of the natural world. We have to find ways to live joyfully in a fragile structure that barely shields us from its insults.
This symbolizes our own fragility, reminds that the permanence we feel in our comfortable, temperature controlled homes is a seductive illusion. Our bodies, our homes, our lives, all are temporary.
Four years ago, my husband did the annual hustle to get the sukkah up. It is never easy, never convenient. That year was particularly difficult, with my brother’s illness and our three small children, including a just-crawling baby.
One of the rituals of the sukkah is to shake the lulav and smell an etrog, a citron that symbolizes the potential for goodness in the human heart.
As it happened, we received a particularly large and fragrant etrog that year.
While I prepared a meal to eat with friends –– another tradition –– I got a phone call from my family. My brother was entering hospice. His cancer was no longer deemed treatable. We made plans to fly out the next day.
Can I possibly describe the poignancy of that moment? Leaving behind the temporary structure built with our own hands, we began the process of letting my brother go, confronting for the last time the temporality of his life.
“But you worked so hard,” I said consolingly to my husband. “I hate to let this go.”
“There is more than one way to find the meaning of this time,” he said wisely.
He took the lulav and etrog on the plane. We brought them to my brother’s cozy apartment that night.
At a certain point in the evening, my husband shared the lulav and etrog with my brother and sister-in-law. He explained the holiday, its meaning, its relevance to the moment. My brother, who was deeply spiritual although not religious, loved the symbols and the message.
Then my husband declared, “Tonight, this home is our sukkah. This is our temporary dwelling, just as our bodies are our temporary dwellings for our souls. Our spirits are greater than our bodies. We can recognize our impermanence and be joyful anyway.”
My brother loved this idea. He summoned a joy that still, to this day, amazes me. With his frail, pained body, he went through the ritual of shaking the lulav and smelling the etrog, beaming radiantly.
As we dined in our temporary dwelling place, the sweet smell of the etrog filled the air, reminding us of the potential for goodness of the human soul.
Everything is temporary. None of us is spared the fate of mortality. But we can be spared the harshness of this disease.
What separated my fate with cancer from my brother’s is the pathology of my tumors and the existence of a targeted treatment. When I think of my friends living with metastatic disease, I feel frustration that their experiences are marginalized during the Pink Festival of October. I am angered that potentially life-saving research — cures, not just more treatment — is underfunded.
We can do better. We have an untapped potential for good here, and we need to see it realized.
Here are some bloggers living with metastatic disease:
I can’t stop crying today. I finally decided to stop fighting it. So I made a slideshow of my brother’s all-too-short life. I know there are more pictures out there that should be included but this is what I had available.
I will always love you, Jer. I will always miss you.
His wife, Kim, is one of my friends. Our kids are roughly the same ages. Kim and I met one New Years Eve when we were both pregnant with our third children. Their community was my community when I lived in Seattle.
I want to honor him as somebody who had a big impact on me and has been a role model to me as a cancer patient. He was a huge support when my brother was going through treatment. Josh’s cancer battle was more protracted than my brother Jeremy’s. Jeremy stayed in treatment from the time he was diagnosed until he entered hospice less than 2 years later.
Josh went in and out of treatment several times. He had periods of remission. Enough time to build a family, to edit his movie about his second round of treatment with epitheliod sarcoma. That was the bout where he lost his left hand.
If you see Josh’s movie or read his blog, it gives you an inkling of how he managed to keep his humor and humanity. He used his cancer as an opportunity to dig deeper spiritually, to educate the rest of us about what it was he was going through. In this way, he was a role model for me. He helped me have the courage and commitment to share my own treatment with others because I knew how much I learned from what he shared. His honesty has helped me be honest.
As a blogger and filmmaker, Josh was a vigilante patient. He often brought his video camera to his appointments or hospital stays (sometimes to Kim’s chagrin). Once, he was hospitalized and the doctors were unsure of the cause of fluid build-up in his lungs. He was in his hospital bed, anxiously awaiting the results of tests that might clarify his situation.
A resident doctor came in to check on him. Josh caught on film this man’s utter ineptitude in interacting with him. To give you an idea of how bad it was, Josh put it on YouTube under the title “Doctor Asshole,” which was painfully accurate. In the clip, Josh was asking completely reasonable questions and Dr. A kept obfuscating, eventually becoming belligerent and rude.
Watching the clip, I kept saying aloud, “Just say, ‘I don’t know.’ Three words, dude. ‘I. Don’t. Know.’ And then say, ‘I’m sorry.’”
Josh’s hospital made him take the clip off of YouTube, but he knew that the doctor had been reprimanded and, hopefully, educated about why his approach was completely unacceptable. In this way, Josh contributed to improved treatment for all the patients that came after him in this young doctor’s career.
That was only one of the many ways Josh was courageous and heroic. To get to know Josh more, watch his film or read his blog.
