Friday, December 17, 2010

Hitch

Journalist and author Christopher Hitchens was diagnosed with esophageal cancer in June of this year and since September, he has been writing his monthly column in Vanity Fair about his experience. These columns have been endlessly thought provoking and relatable for me. I have read and re-read each one, with a deep sense that his words and voice have captured a side of my own cancer experience that I've been unable or unwilling to articulate: the cynical and sardonic side.

I have always found Hitchens' work of the non-cancer variety interesting, enriching, and most importantly, challenging. It occurred to me at some point during college that his nickname, Hitch, means to raise by pulling or jerking, which is sort of the perfect description of what his writing does for me. Never has that felt more personal or real for me than in his recent columns on cancer. At times, he's abrupt and startling, but after reading them, I feel raised up.

There is so much in these four columns that I want to talk about, extrapolate upon, relate to my own experience, that I fear this post could go on for the length of a bible (a comparison that would no doubt upset Hitchens) so I have tried to be selective in drawing out some favorite themes.

In Tumortown Hitchens talks about wading through the sheer number of choices in conventional and alternative cancer treatments. Further in, he talks about what it feels like to go through the rollercoaster of emotions around participating in clinical trials and beginning new treatments, when some are accessible and some are not, when some work out and some don't, and when some offer you the chance to serve humanity through participating, describing that unique bitterness when that opportunity is taken away. I originally read this piece shortly after my hopes of participating in a clinical trial of a promising new immunotherapy approach had been crushed. I felt like it was a sad summary of the emotional circus that the experience had been. Reading it again, now that I'm into my SGN-35 treatment cycles, (going smoothly thus far) I am reminded again that new and innovative options are blessings and burdens.

In his column entitled, Miss Manners and the Big "C," Hitchens tells the story of a woman at his book signing, over-sharing about her cousin's cancer, which was a different type and stage than Hitchens', and ended in painful death. She concludes the agonizing exchange by saying, "'Anyway, I just wanted you to know that I understand exactly what you are going through.'" This moment felt all too-familiar to me. After describing the encounter, Hitchens goes on to wonder if there shouldn't be "a short handbook of cancer etiquette." He writes, "One almost develops a kind of elitism about the uniqueness of one’s own personal disorder. So, if your own first- or secondhand tale is about some other organs, you might want to consider telling it sparingly, or at least more selectively. This suggestion applies whether the story is intensely depressing and lowering to the spirit—see above—or whether it is intended to convey uplift and optimism: 'My grandmother was diagnosed with terminal melanoma of the G-spot and they just about gave up on her. But she hung in there and took huge doses of chemotherapy and radiation at the same time, and the last postcard we had was from her at the top of Mount Everest.' Once again, your narrative may fail to grip if you haven’t taken any care to find out how well or badly your audience member is faring (or feeling)."

This feels pretty spot-on. I feel fortunate that those closest to me, aware of both my illness, but much more importantly, the rest of me, and themselves largely gifted with excellent social graces, tend to say just the right thing most of the time. It's usually the more random folks I interact with - the person at the checkout counter, stranger on the metro, random distant colleague, friend-of-a-friend-of-a-friend etc, who think that a scarf on my bald head is an invitation to discuss my cancer with me. In those moments, I badly wish there was a handbook of cancer etiquette outlining the best way to handle a given situation. (Though, until a book is published, I highly recommend this article from Cure Magazine, by Leslie Starsoneck, The Rules.)

In another post, Unanswerable Prayers Hitchens (a famously avowed atheist) weighs the complexities of those praying for him to live, praying for him to suffer and the role faith plays in any of it. I think that he poses many good questions without answering them, which feels consistent with my own theological approach to the power of prayer as well. I have lots of questions about it and fewer answers. As a brief preview to a very soon-to-debut post here on SWHAW, I will say that while there's no question that Christopher Hitchens and I have very different understandings of the role of God in our lives, we do have an extremely similar understanding of the direct role God has in our cancer diagnosis.

I could go on and on about all the large and small ways that Hitchens sheds light on some of the universals of the cancer experience, but I think I'd rather hear some of your thoughts on his columns when you read them, and hope that you'll share your views here in the comments. I hope that Christopher Hitchens experienced as much catharsis and healing when he wrote his insightful articles as I experienced when I read them.

Thursday, December 9, 2010

Experiment

It's weird to feel excited about cancer treatment, but here I sit, excited to start SGN-35 tomorrow. Up until this past year, my treatments had been conventional - following the same course of action that's been prescribed for Hodgkin's patients for decades. But with a rare second Hodgkin's relapse, my treatment plan ventured down a road less traveled.

Now, as I find myself preparing to begin a regiment that is so new that it's still being finalized and has yet to be fully FDA approved, I'm feeling a lot of different things. I'm a bit excited, to be one of the recipients of something so innovative, and to have my case be a part of something that will hopefully prove so essential in changing the conventional course of treatment for Hodgkin's. I'm a little nervous, to be the first person at the Northwestern clinic to receive this protocol, with the staff learning it as we go, unable to anticipate reactions or side-effects from experience. Above all, I'm grateful: for the access to this drug afforded to me by my doctor who fought for me to get it and the privilege that comes from being treated at such world-class institutions.

The phase II findings on SGN-35, which were presented earlier this week at the American Society of Hemotogy annual meeting, have been making major waves in the oncology world. Since my last post about the drug two weeks ago, there's been an explosion of new articles and blog posts about it, including in Bloomberg, Pharmesuetical Business Review, The San Bernardino Sun, and a series of shorter posts that offer interesting insight into the timeline of the drug's development on The Medical News, just to offer you a sampling.

I'll be in Chicago for just 48 hours to receive this first treatment, returning to Chicago every three weeks through January.