Wednesday, December 9, 2009


This morning, while standing and chatting in front of Jack's school, huddled with 2 friends under umbrellas in the driving rain, one asked about my book party and said how sorry she was to have missed it. Her husband hadn't been feeling well. After several back and forths she told us he has stomach cancer and is going for surgery next week. There was a palpable shift from imagining flu or a virus to confronting the reality of second opinions, stomach bags, chemo/radiation, long term prognoses. I then found out another friend, who moved out of the city recently and I ran into having lunch in a cafe last week, was in town for chemo. She was diagnosed with breast cancer at the end of the school year. Yet another mom I know, responded to my FLOW invite by saying she wished she could make the party but had inoperable brain cancer and was starting a new round of chemo that day.

It's amazing how in a second, a moment, a breath, everything is fine and then reality crashes into something else entirely. Something too scary and overwhelming and life-changing to absorb. And nothing is the same after that.

I can't begin to imagine what that's like for the person who's been given the diagnosis. Or their family. Cancer is just about the thing in life I'm most afraid of. I think it even trumps skiing (and that's a major fear). My father is an oncologist and I grew up with stories about patients and chemo, living wills, and grieving families. His detachment is how he survived a heart-breaking job. He learned to search out, and create, humor (often cringe-worthy), as a defense against the bleakness. And as a way of bringing a moment or two of joy to his patients. Distraction can be a powerful thing when life is crushing down with brutal force.

I am queen of distraction. I can entertain, tell a story, involve a room, get people laughing, talking, engaging. I can keep people, at least for a little while, from falling into the depths of despair, from spinning in the dark, from letting the terror pull them under.

I am terrified about when I have to confront it myself. For myself, my family. My veneer is so effective, but it's just show. I can pull it all together on the outside, people see me as ever strong and capable, but I know there are some things I can't handle.

I couldn't handle the seizures Jack had when he was little. Blood, hospitals, emergencies, I'm fine. But his seizures and the fear he'd have another paralyzed me for years. When he'd get a fever, which was often, I'd panic, barely able to get medicine into him, praying his body would handle it all and I wouldn't have to live through another moment when his eyes would role back into his head and his little body would quake until it fell so silent I'd have to check for a pulse. When he felt warm, I couldn't breathe. It got so bad sometimes I couldn't check on him during the night, even though I needed to know, every 10 minutes, if anything changed. I dreamed of making it to his 6th birthday, the time when febrile seizures apparently stopped. It's only been in the past couple of months, he's now 8, that I've been able to leave him alone in the bathtub. His next to last seizure happened there, as I was running out to get the phone. He was seizing, under water, when I got back, Iz screaming that he was turning blue. I remember the fire department, 13 men in smoky uniforms in my apartment, trying to help as I got him dried and dressed, still unconscious, Iz petrified yet excited to be in the ambulance. Going for food for her and finding out he'd had another seizure in the hospital, after I'd begged them to give him more advil and they'd refused. 2 seizures in 24 hours wasn't typical and so then we had to put him through far more extensive testing. In the end, all was fine. He never had another seizure. But I will never forget the fear that paralyzed me, turned me to stone. Fear that was so powerful I couldn't be present.

I'm afraid of that happening again. Hearing other people, other families, other friends being plunged into that terror, terrifies me. Our souls are so resilient, but I hate how beaten they have to be.


Julia Schopick said...


What a wonderful coincidence that I found this blog posting today. Seeing on twitter that you had written about “Fear in the Real World,” I was curious. But I had no idea from the title that I would find a posting about Cancer – and even more of a coincidence, that I would feel compelled comment! (By the way, physician/author Bernie Siegel once told me that there are no coincidences, only “God-incidences.”)

You see, my husband Tim died four years ago at the age of 56. At the time of his death, he was a 15 year survivor of a cancerous brain tumor, outliving his 3-year prognosis by 12 years.

Since that time, I have been on a mission to get the word out about some lifesaving treatments I discovered along the way, which the medical profession often doesn't know about. However, these treatments have been helping patients for many years, successfully alleviating – and in some cases, curing - extremely life-threatening diseases and conditions, such as cancer, MS, liver disease and epilepsy. (No, no one treatment cures all of these diseases! Wouldn't it be great if such a “cure-all” existed?!)

Unfortunately, these treatments I am so passionate about are often (unfairly, in my opinion) called “anecdotal” by doctors. I prefer to call them PEBM: “Patient Evidence-Based Medicine.”

I am in the process of writing a book about 4 of these PEBM treatments. Ironically, some of them could help the friends you wrote about in your posting today.

For instance, Dr. Burt Berkson (MD, PhD), one of my “heroes,” has successfully treated some recalcitrant forms of cancer (including the “incurable” pancreatic cancer) with a combination of intravenous alpha lipoic acid and oral low dose naltrexone. You may listen to my interview with him, as well as read the transcript of the interview, on (Just scroll down on the home page to find it.) In this interview, Dr. Berkson talks about how these two treatments have helped hundreds of his patients, and gives his take on why most doctors aren't aware of treatments like these.

And, your mentioning your son’s seizures brings to mind the Ketogenic Diet, which has successfully been used to treat epilepsy in children since the 1920s at John’s Hopkins and other institutions. In fact, this diet was more widely used before anticonvulsant medications came on the market. Once there were pills, most doctors stopped prescribing the diet. (By the way, the diet still has a better track record than anticonvulsants, but it is much more difficult to administer. Today, more parents are finding out about it, thanks to the work of Jim Abrahams and The Charlie Foundation.)

The Ketogenic Diet is another of the treatments my book will feature.

You may read about all four of these treatments in my article, “Four Lifesaving Medical Treatments: Not So ‘Anecdotal,’ After All!” at .

I could not end this comment without providing one other useful resource for your friends with cancer. Nutritionist Dr. Jeanne Wallace was one of the people my husband and I felt contributed to his long survival from his brain tumor. Her website,, contains several very useful articles on the use of diet and supplements for people with cancer. She works with patients who have several kinds of cancer, including brain, breast and colon cancers, to help them to withstand the effects of the chemo and radiation, as well as to increase their overall health – and hopefully, their survival.

I hope this comment isn’t too long. More important, I hope it helps some of your friends – as well as others who read your terrific posting.

Julia Schopick

Whymommy (Susan) said...

Don't be afraid. So often, listening is the greatest gift you can give. Come meet a few of us online if it's easier ... Come meet the ladies at MothersWithCancer dot com!