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Last Thursday morning, I woke up with a cold. My immunity has made a noble comeback and it was my first cold all winter. I felt badly enough to cancel out my day to rest and work at home.
Around 10 AM, I got a phone call. I saw on the caller ID that it was my uncle, my dad’s caretaker and somebody who never calls me. My heart sunk seeing his name flash on the home phone.
He was calling to let me know that my dad had just died. It looked like a heart attack.
After getting more of the details of what happened, what was going to happen, I got off the phone, let others know, and then felt the news sink in.
I went upstairs to the attic and pulled out a couple of boxes of loose photographs. My grandma had given me some family photos from her similarly organized collection before she died, and there was one in particular I was seeking out.
The photos were dots on the timeline of Dad’s life, and it was my job to try to connect them.
His life, once so full of potential, was cruelly derailed by mental illness.
He was the first of my grandparents’ three children. Born bright, beautiful, and precociously verbal, he was beloved by them both.
He protected his little brother in their New York neighborhoods. His friends described him as fiery and mischievous.
Moving across the country to Los Angeles as a teenager, he never lost his New York accent. I even called the hot morning beverage “cawfee” as a child. His precociousness played out, and he did well in school. He got into UCLA at 16, the first in his family to go to college.
There is a photograph that fits in this point of the timeline that I cannot find. It’s a picture of my 17 year old dad in front of his Volkswagen Beetle on a palm tree lined Los Angeles street. He is full of swagger, his long legs crossed, head tilted with his thick brown hair flopped to the side. The look in his eyes asks the world to dare him: he was game for anything.
I found that photo when I was younger and spent a long time staring at it, memorizing it. I imagined it was before he had his first breakdown. I always wished I could go back to that moment and figure out what I might do to save him from the demons that haunted him the rest of his life.
I was his daughter, loving and loyal. I wished I could save him from himself.
But I couldn’t.
Somewhere soon after that moment, my mother got swept up by the bright, handsome young man, meeting him on a beach. They married, had my brother and, soon after, I came along.
My parents divorced before I was two. My dad couldn’t hold a job and was increasingly tormented by his ailment.
He was my dad in spots and patches. A weekend dad for most of my childhood, there was a long period of limited communication between my 12th and 18th years.
He was a confusing father in many ways. His stories would crossover seamlessly into fantasy. It took some sorting to realize that Dad was not a veteran of the Vietnam war. I was suspicious from the outset that he did not single-handedly thwart the first Kennedy assassination attempt, although I have a detailed account of his heroic actions handwritten on yellow legal paper.
When he was manic, he would often leave me alone in his apartment, kept company by the shadows cast by the street lamps, while he walked for hours until the sun rose. When he was depressed, I would wait for him to wake, poking and jabbing him. When I couldn’t rouse him, I would forage in his understocked kitchen for something to eat.
Eventually, the court ordered that I could not stay alone with him. My grandmother had to be present to make sure I was cared for.
When we reconnected, I was in college. He was living in a psychiatric hospital at that point but soon after was discharged.
The greatest period of our relationship happened when I was between the ages of 18 and 35. I was independent enough not to need him much and old enough to have compassion for his situation.
I am like him in many ways. I was a precocious child. I love reading, ideas, and music. My grandmother recognized, with some concern, that I shared his “tender heart.” Like him, anger only increases my verbal acuity.
I admit, I never quite let go of the desire to rescue him from himself.
I spent a good chunk of time in my twenties researching mental illness, wondering where the ailment ended and the man began.
Was he like this because of the labels he had been given? Would he more truly be himself without pharmaceuticals? Is mental illness just nonconformity pathologized?
All the while, he would come and go, both literally and figuratively. He would have periods of descending into breakdowns, unreachable. He made it for some of my life events, but not for others. He loved being a grandpa and took delight in my children.
As sudden as death by heart attack is, I have been letting go of my dad for some time.
I started saying goodbye the week my stepbrother Jeremy was diagnosed with cancer.
They were not related, but I loved them both so these events are permanently linked for me.
The week Jeremy was in the hospital, my dad went AWOL from the board and care he was living at. He had been cheeking his medications and had gotten really crazy.
I went straight from the hellish week in San Francisco listening to Jeremy’s news get worse and worse, down to Los Angeles, where I bought a disposable cell phone and used the number on missing persons flyers we posted around my dad’s neighborhood. My husband and I slowly drove the alleys at night, checking out the homeless guys to see if we could find my dad. I made daily calls to the city morgue to see if any new John Does had turned up that fit my dad’s description.
It was horrible.
Dad eventually returned to his home two weeks later, having wandered miles on foot through a famously pedestrian unfriendly city. His psychiatrist said that after that much time off of his medication, his baseline would not quite be the same. The board and care said that they could no longer care for him given that he was now a flight risk.
Dad never fully recovered from that episode. To be honest, neither did I.
I still stayed in contact with him, but he never was quite the same.
When I was diagnosed with cancer, my uncle and I had a few discussions about whether Dad could handle the news. We decided it might be best to wait until my prognosis was clearer.
When I called him a few months ago, I was unable to have a coherent conversation. So I never told him.
I wish I could find that missing photograph. I wish I could show you just how much promise he had so you could join me in mourning not only the life he lost, but the life he never got to live.
Tags: coping, essay, grief, mental health, parenting
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Grief, for me, is a wee hours thing.
I wake, disturbed, and see the hour on my bedside clock glowing 4 or 5.
My heart is heavy, with thoughts of Rachel or her beloved Anthony. Once again, I feel the troubling dissonance between pink bows and teddy bears and the disfigurement and death that is the reality of this disease.
I feel pain at her loss, bewildered by my lack of space for grief. On the surface my life moves forward, but I know inside my friend is gone.
Mourning, for me, is done best in the comforting receptive presence of others. I have had to search for that.
Life online is good for building community and making friends.
But it is overfull with voices, noise, and words.
My loss is an absence in my virtual world but online life is a place that offers me little comfort or healing.
The greatest comfort has been my blog, which has given me the chance to speak my grief. The comments I have received feel the closest to comforting receptiveness.
Thank you for that. It means a lot.
Tags: coping, grief, social media, talking
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Last night I dreamt of Rachel. We were both young and healthy and on an adventure together. At one point it seemed like we were in the South Pacific, and at another it seemed like the Mediterranean. No matter. Our adventure was about meeting people and sharing experiences, not seeing the sights.
As my grief over her death sinks in, I am starting to see the shape of the hole it has left in my life. This dream offered me a clue. Our friendship took place through an almost unspeakable experience, not a fixed place in time.
If I were to answer the question, ‘What did you do today?’ most likely I would describe activities like running errands, shuttling children, going to work, and cooking dinner. Rachel was not a part of the identifiable, geographically-bound fabric of my life.
But if you asked me what was in my heart, where my mind was, what concerned or upset or preoccupied me, I would say the questions of my health and mortality, the pain and injustice of being young with cancer, the persistent experience of people misunderstanding this disease that has upended my life. It is there that you would immediately understand who Rachel was to me and the nature of what we shared.
If my life is a quilt, our friendship did not live in the panels. It lived in the seams.
In fact, I have never been in the same place at the same time as Rach. We had plans to meet in real life, in a gathering of our online friends, next month. Although we had never occupied the same physical space, we shared a frightening psychological one. We both had breast cancer at an improbably young age. I have not had metastatic cancer but I lost my 36 year old stepbrother to it less than 2 years before my own diagnosis.
So where did our friendship live? It was born on our blogs, blossomed over email and social networks, took root on skype and phone chats. We were friends in all the in between places of everyday life.
We shared this experience, this hell of cancer. We talked about many things but one of our recurring themes was the Stuff You Can’t Write About. Although we were both plain spoken and unflinching, there was still territory in this shitstorm too personal, too raw and devastating, to broadcast to outsiders. I knew I could share those places with Rach and she with me. Even if we did not know firsthand exactly what the other spoke of, we could count on each other to listen and understand.
The emptiness I am left with is distinctly modern in its shape. A void in my twitter stream; a dim bubble on my Skype. But the depth of our bond belies the superficiality of those electronic connections. Our friendship went beyond the physical to the realm of the existential.
My life may look the same on the outside but it is lonelier without Rachel around to share it with.
There have been many beautiful tributes to Rachel on different blogs and I am sure there will be more to come.
Here are some of them:
Rachel’s Obituary on her blog
Jody Schoger’s tribute
Gayle Sulik’s collection of Rachel’s incredible comments on the Pink Ribbon Blues blog
Marie remembers on Journeying Beyond Breast Cancer
AnnMarie talks about Rachel’s contribution to our community
Tags: eulogy, grief, loss, social media, support
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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.
Tags: advocacy, cancer headlines
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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:
Cancer culture chronicles
Dancing with cancer
Tags: coping, essay, gratitude, spirituality
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