This is an extremely emotional topic for me; when preparing this column, I had to walk away from my notes several times. The stats say that 50% of us will be diagnosed with cancer at some point in our lives. 50%. That means that every one of us will have to deal with cancer directly or indirectly at some point. About 1/3 of us will die from cancer.
Keep those grim stats in perspective: those numbers are a little old, and fortunately many cancers that were incurable a generation ago are now quite manageable. If we wait long enough, those statistics should look better and better. Nevertheless, even based on the older numbers, about 1/6 of us will be diagnosed with cancer and survive it. These millions of people are my heroes.
Who is a survivor?
The National Coalition for Cancer Survivorship (NCCS) defines a survivor as “Any person who is diagnosed with cancer.” Their reasoning is straight forward: if you are alive and you have been diagnosed with cancer, you have suffered and belong to the club. Much better to be maximally inclusive rather than getting into technical details about whether you’ve finished active treatment, or whether you’ve crossed some arbitrary number of months/years since your diagnosis, normalized to the severity of the tumor. Also for many of us, there is always the risk that some renegade cell has survived all interventions and is lurking, ready to cause mischief again. That uncertainty is awful, but it shouldn’t take away from the triumph of people who have looked cancer in the eye and survived. Caregivers are also considered survivors, which I think is fair. Jing has suffered at least as much as me through this whole thing. I remember telling her that her three labors were worse for me than they were for her, since I had to experience and remember every last minute of them, all the while being largely helpless to make things go any better. We argue this point often, but the bottom line is that the supporting caregiver role is not an easy one and should be respected.
Parenthetically, I’ll add that my overriding professional ambition has been to be elected to the National Academy of Sciences. The highest achievement for my line of work is, of course, the Nobel Prize, but I’ve met too many scientists chasing that prize who have sold their humanity in the process. Besides, for Nobels, you often have to be in the right place at the right time. The National Academy seems to be a more wholesome and productive ambition; a reward for a long, successful career. I say this to make it clear that I have no deficit of ambition. That being said, my number one ambition now is to become a permanent, full member of the cancer survivor club. These are ordinary people who didn’t want a fight, who didn’t want attention, who merely wanted to be, and through no fault of their own ended up in a fight for their life and have won. That is heroic.
“What one man can do, another can do.”
Not a terribly feminist-friendly quote, but I took it from a movie — The Edge — that most feminists wouldn’t be caught within 10 miles of. The premise is that Alec Baldwin and Anthony Hopkins are stranded in Alaska, being chased by a murderous bear.
In this clip, Anthony Hopkins is trying to convince Alec Baldwin that rather than running from the bear, they should turn and fight it. His reasoning is that Eskimo and Inuit boys as young as twelve years old would hunt and kill bears as rite of passage into manhood, and therefore, survival against the bear should be feasible if they’re smart and brave enough. Anthony Hopkins, as expected, delivers an excellent performance. Alec Baldwin, also as expected, is entirely unconvincing. I include this clip, because I think it epitomizes two different responses to a cancer diagnosis; Anthony Hopkins’ version being the more productive of the two. This also gets at the real reason I love survivor stories: if one person can survive cancer, then others can, too. You may even be able to learn something from their approach. With that in mind, I’ve decided to compile some of the survivor stories that have come my way in the last couple months. Thanks to everyone who sent me these; they’re more precious than gold. I left out all the names of people who don’t write for themselves, because I don’t want to unintentionally disclose confidential health information. But for the record, I think cancer survivorship is the most impressive red badge of courage you can earn, and if I’m fortunate enough to become a member, I would encourage people to put my name on any story they retell, and even feel free to pass along my contact information.
1. A family friend and colleague of my dad’s was diagnosed with Chronic Myeloid Leukemia (CML) at age 25, over ten years ago. Since I was mixed up in the biomedical field at the time, my advice was sought, via my dad. This was one of the most satisfying professional experiences I’ve ever had, and the moment at which I was proudest to be at Harvard. At the time, I was working at Dana Farber Cancer Institute and taking classes from Tom Roberts and Chuck Stiles, one floor up from the labs that did all the foundational work on CML that helped Gleevec to be invented. I had the happy role of telling a new cancer patient all about one of the landmark achievements in chemotherapy and to reassure him (with suitable caveats) that his prognosis should be quite good. Moments like this are why we go into biomedical research, and I got to steal a little bit of Gleevec’s glory for myself. Since then, my friend has been through a number of chemo regimens (most recently Sprycel) and just posted to Facebook that:
“my PCR test is negative for the BCR-ABL gene which means no trace of CML in my blood. W00t! And a 5 month reprieve from the oncologist! That’s my longest in a while. So very happy. Sprycel is kicking butt and taking names.”
What a happy place to be — mid 30’s, with your whole life in front of you. I’ll also mention that during this decade-long battle, my friend got married and had two sons (fuck cancer, indeed). Besides touching me personally, this story is particularly dear to my heart, since based on everything I’ve read and heard, my tumor will probably follow a similar trajectory, and my oncologists seems to be settling into long term management mode. I’m gearing myself up for years (or decades) of watchful waiting and maintenance. A long, cold war against cancer. And hopefully, sometime in my mid 40’s, I’ll be able to see my whole life in front of me. The image is so beautiful, I tremble.
2. Another friend from Philadelphia writes to me about his grandfather who “also had an operable brain tumor. Following its removal, he made a full recovery and spent his retirement years gallivanting around the Caribbean.”
Full recoveries and gallivanting around the Caribbean… I would tip a pina colada to that, if I still drank.
3. A Connecticut friend’s mom had breast cancer and will be ten years cancer-free this October. Big party planned.
4. A friend and colleague from UMSL writes about one of her close friends who “had brain cancer, had surgery, went through rehab, and was fine thereafter – she is still alive and well some 32+ years later“. 32 years… whew. That’s unquestionably the long arm of OS curves.
5. A colleague in the circadian rhythms field made a point to call me up and say that his wife had brain cancer, had surgery, and is perfectly fine 10+ years later. He tells me that much of her positive outcome comes from a relentlessly positive attitude and eating lots of fresh vegetables.
6. A colleague of Jing’s writes about a patient who was diagnosed with GBM seven years ago (I should mention that GBM is a Grade IV brain tumor; there is no Grade V, and the median survival after GBM diagnosis is ~14 months), who has undergone two surgeries, radiation, and multiple chemo regimens, and is currently disease-free with a new baby, high quality of life, and good overall prognosis.
7. Another colleague of Jing’s writes about a close friend who is cancer-free six years after her GBM diagnosis and doing great.
8. A close friend tells me that his Dad was diagnosed with Stage IV lymphoma 10 years ago, and that “the diagnosis wasn’t good, and the prospects were brutal. Today, his recovery has been so complete that his oncologist no longer uses the word ‘remission’ – they say he’s cured.” I’ll add that this gentleman has lived to see his sons married and grandchildren born. That’s a big, big victory.
9. Cheryl Broyles. Cheryl was diagnosed with GBM 15 years ago, and has undergone SIX craniotomies to have recurrent tumors removed. She’s also written a book about her experience battling cancer, and she even climbed Mt. Shasta. That is one seriously tough woman.
10. Ben Williams: Ben was 50 years old when they discovered a GBM tumor the size of an orange in his brain. It could not be completely removed with surgery. Ben then put together a custom chemo regimen based on off-target drugs and various supplements which happily resulted in the shrinkage and eventual elimination of his tumor. That was 20 years ago. In his book (see nearby image), Ben calls GBM “the Terminator”. You have to be a proper bad-ass to terminate the Terminator.
I don’t know the clinical and interpersonal details of all of the stories above, but it is tempting to try to validate some of my approaches and mentalities based on what’s worked previously. I think I can say with confidence that the patients who do the best are the ones who keep moving forward, physically and mentally. Also, an “all of the above” approach to finding weapons against cancer seems to be a winner — check out Cheryl and Ben’s lists of supplements on their webpages. The very best bits of modern medicine are essential as well: Cheryl’s repeat MRI / surgery has clearly prolonged her life enormously. Gleevec is and always will be one of my favorite things of all time. Even Ben William’s story, which isn’t very kind to regulatory science, shows how much can be done making effective use of pre-clinical cancer research. Personality and mentality matter too; like Anthony Hopkins in the movie clip above, there’s a lot to be said for turning around and looking your enemy in the eyes.
Other survivor stories:
If you’d like to share your survivor story with me, please feel free to write me at “michael.evan.hughes -at- gmail.com”. I cherish these stories and would love to hear from you.