Remember My Name
Cancer. For my father, mother, brother, and I, the past 16 months can probably be summarized by one word: cancer. It’s not that life stopped when cancer entered our home. It’s not that there’s something less in our lives now. It’s not death or a vacuum: there’s something more living with us, another member in our family. Our family of four has become a family of five. I feel it at the dinner table; I feel it in Los Angeles, Austin, or Montana; I feel it on the phone when my father tells me, “I love you my son” at the end of every conversation; I feel it, consistently present. Terminal cancer means you live life* with an asterisk.
My father was diagnosed with terminal cancer on March 19, 2014. At the time the doctors said we couldn’t expect more than 8-12 months. His cancer was aggressive, eating bone, brain, and most major organ systems throughout his body. I couldn’t help but wonder how the hell his little body could stand up to that assault. And then - between 10 hits of full-brain radiation and 18 rounds of chemotherapy - I couldn’t help but wonder how the hell his little body could stand up to that assault.
Throughout all of last year, my father continued to go to the office. Even on chemo days, even when he certainly felt like hell and wanted nothing more than to sleep, he went. Sometimes he’d sleep at the office, but he made sure to go if he could. I’m sure a part of it was role-modeling: to lead by example for some of the younger guys at the office. And to role-model for his sons. But I think the reasons he continued to work tirelessly weren’t as simple as role-modeling: he wasn’t willing to give in to that asterisk at the end of his life. He didn’t have a bucket list because, - as he put it last year - “I’ve lived an incredible life. God has given me everything I could ask for.” He found purpose in doing, purpose in creating goals for himself, and making sure that his family was taken care of after he could no longer work. Some men lose hope when they face finality. Some men deny reality. Some men cook meth, sell their souls for power, and become monsters. My father made the decision to continue living his life after diagnosis the way he did before cancer.
Today is July 8, 2015. Things have changed; life* is different now. Last October an MRI reading showed 22 lesions on his brain. My father and mother returned to the Mayo Clinic in Minnesota to treat those lesions with Gamma Knife Radiosurgery. We prayed that this treatment would hit the growths while minimizing the effects radiation had on his brain. In March it was clear the Gamma Knife hadn’t been as successful as we’d hoped, and so as a family we decided another round of full-brain radiation would be the next step. Both teams of doctors recommended this decision on the basis that this would be the best chance to maximize both quality of life and time; we were also told that this would inevitably lead to dementia. The brain can’t go through that amount of acute radiation without dire and irreversible side-effects. Dementia wasn’t simply a possibility; it wasn’t a negotiation with God: the more successful radiation was in treating his cancer over time, the more dementia would take him.
Within a month of the second full-brain radiation, the side effects became unexpectedly severe. He lost 20lbs in a month, showed extreme memory loss, mobility, and appetite. When waiting for months until the next PT scans & MRI’s, these signs become spiritually disheartening. And so we’ve all continued to hold our breath. Five weeks ago ASCO - American Society of Clinical Oncology - released groundbreaking results on the effectiveness of Immunotherapy (this treatment is revolutionary against certain forms of cancer), which his Oncologist immediately recommended with the hope for quality of life and extension of time; if my father decided to attempt this treatment, he would begin more or less immediately, but as a family we’ve each continued to weigh the potential negative effects that pursuing this treatment might incur on him: time vs. quality. Every decision now affects that balance between time vs. quality. And while he has gained much of the lost weight back since April and continues to show some signs of both physical and mental healing, we also see some less encouraging signs on a day-to-day basis. So everyday, we have to assess decisions by that scale: time vs. quality.
Two days ago we received encouraging results from his MRI reading: all brain lesions are in decline with one exception; the largest one - they believe - is similarly responding to the previous round of radiation. And while we are incredibly optimistic, we have to be realistic. While we continue to maintain hope for increased strength and mental capacity, medical predictions for brain and motor function following the 2 full brain treatments and 1 Gamma Knife treatment point to permanent, decreasing quality of life. We’ve been told in retrospect that he has essentially endured three full-brain treatments, because the Gamma Knife ended up being so extensive. Already the effects following April's treatment have been rapid and dramatic, and while we all remain hopeful, it’s also imperative for us to prepare in order to appropriately care for his needs and comfort during this next period that is taking shape.
So this is where we are over the last 16 months. And through this period we have watched my father continue to work to ensure that his family is taken care of. He continues to set personal & professional goals, lending to his strong sense of purpose & self-worth. He’s surpassed professional goals that most people in even the healthiest conditions wouldn’t have reached. And throughout this time my mother has been the bedrock of our family, fitting all the pieces together. Between daily obligations and big-picture objectives, she makes sure the mundane often under-appreciated needs get met. She doesn’t ask for thanks or acknowledgment; she doesn’t work tirelessly simply out of obligation or duty. Everyday she chooses to love him, regardless of the pain that comes with this process and the anticipation of grief. Instead of saying, “Why me?” they have both said, “Why not me?” Self-pity isn’t in their repertoire. Even this morning at breakfast they both thanked God for “this lovely day, this wonderful day.” Giving up isn’t in their repertoire. And I think that’s why completing this portrait series continued to tug at me for the last 16 months: my parents continue to approach an incurable disease without delusion, without self-pity, tirelessly with both strength and vulnerability. Is that worthy of remembrance? You’re G.D. right.
During this period, my family has been open to participating in different photo ideas to document this period. This series was different than the others; I meant it as something fun to work on in the wake of debilitatingly terrible news. I shot it shortly after the diagnosis in March 2014. At the time Breaking Bad was just wrapping; my dad and Walter White shared similar diagnoses so why not have a sense of humor with it? And then as the year progressed, I kept placing these shots on the back-burner. But completing the series continued to tug at me. There are clearly a number of reasons why I kept thinking about it, but there are two reasons that stick out the most:
1. My father’s initial response to the idea of shooting this series: “If we can’t have a sense of humor about cancer, then what’s the point?”
2. My parents have worked tirelessly - with dignity and grace - throughout his illness to ensure each other’s well-being and uphold their integrity and sense of purpose. It’s such a polar contrast I see between my folks and the characters in the show.
For anyone interested in the process of making them, each image is a combination of a studio portrait utilizing 2 strobes, a Nevada desert landscape I shot in 2009, and an Arkansas sky I shot in 2010.
Here is the original banner for the final season of Breaking Bad: