I've got an op-ed in today's LA Times about the Abraham Cherrix case. (You can read it below by scrolling past the explanatory pre- or post-text and clicking on the post-continuation).
It was an honor to write, but I should reiterate and/or expand upon a few things where I have the space.
1. I do, of course, realize that the Hoxsey Herbal method has been proven ineffective by many. Still, I view the issues in this case--that any government can control how a family treats a mature, young man's body, and that said young man may be forced to call the county his parent--absolutely worth serious discussion. Having gone through chemo, I do not, as a rule, view Cherrix's parents as trying to help their son euthanize himself. And neglect? Well, I definitely believe in many of the chemotherapeutical treatments available--and certainly, the main Hodgkins protocols have proven themselves time and again--but once more, we are all allowed to make choices. And with parental consent, an articulate 16-year-old may certainly choose another path without governmental intervention. This is America.
2. I did, in fact, receive a stem-cell bone marrow transplant, and this treatment, along with radiation, did send my Hodgkins into what I hope will be a permanent remission (so far, so good after nearly 10 years). However, the stem-cell transplant I received is what's called an "autologous" stem-cell bone marrow transplant. What that means is that my doctor extracted baby cells from my blood in a process called aphoresis, and then infused them after high-dose chemo knocked my blood cell counts down to zero. The important fact being that these were my stem cells, and that this isn't the sort of stem-cell therapy that may be available if we can help overturn George Bush's very stupid recent decision.
That said, transplants like mine are solid proof that keeping those controversial stem-cells alive will likely cure many diseases. I'm a walking piece of evidence.
Now you may be thinking: Great, Adam, but how then can you make a case for Mr. Cherrix and his family? Well, here's how: I didn't say that chemo wouldn't or doesn't work. All I said is that the Cherrixes should be able to choose the therapies they believe in. And hell, the kid already went through chemo. It's not like the people called Western medicine stupid from the get-go and asked their kid to munch on basil, singin' everything's gonna be alright. Telling a young adult what medicine (s)he needs need to take, and then legally disowning him or her (even 50%) from his or her parents, is inane -- and no less serious than telling a woman she doesn't have the right to choose.
3. I love my parents, and do not harbor any resentment about medical choices made in my past. But it needed to be mentioned that these decisions were made for me as a young man with Hodgkins. And that the treatments chosen come with some of their own long-term effects. Just like the disease. Just like marijuana. Hell, just like tomato sauce.
4. To answer some reader and friend/colleague questions: I am gettin' by in spite of all the doctor visits and strange effects. I am aware of probiotics, enzymes, etc. And I am behind mind-body and Eastern medicine. I actually treat myself with many alternative therapies--including exercise and healthy eating-- in concert with Western medicine. Just in case that wasn't clear.
5. My long-time oncologist is a wonderful man and doctor, and the original version of my article contained a line about how he's become a friend and mentor I trust deeply. I also value many other doctors who have helped me and continue to try to help me.
6. Thanks for reading, and if you're new to this blog, please stay tuned for more opinions on health, politics, culture, as well as personal tales of comedy, irony, triumph, self-discovery, and ocassionally, a little hardship.
Fighting to Say No to Chemo
By Adam Baer, ADAM BAER is a writer in Los Angeles. He blogs at glassshallot.com. July 29, 2006
A TRIAL NEXT month in Virginia will determine what kind of medical treatment Abraham Cherrix, a 16-year-old with Hodgkin's disease, will receive. At the same time, the case will call into question the definition of "alternative" medicine and just how much of a role government should have in our private lives and medical decisions.
Cherrix has already had one debilitating course of chemotherapy. Nevertheless, a juvenile court ruled recently that he must undergo a second course instead of following the organic, herbal treatment he has chosen with his parents' consent. A circuit court judge this week suspended the ruling and ordered the trial.
According to a recent story on Cherrix in USA Today, chemotherapy rendered the 6-foot-1 teenager so weak that he couldn't walk from his car to his home. He felt deathly ill after treatment and feared at times that he wouldn't make it through the night. So Cherrix did research and found an alternative — the "Hoxsey herbal treatment" — administered by a clinic in Mexico. It calls for a diet of organic food and herbs, eliminating, among other things, sugar, tomatoes and white flour.
His parents supported his choice despite the American Cancer Society's opinion that "there is no scientific evidence" that the Hoxsey method treats cancer effectively.
Together, a family believed that they might have found a less harmful answer to their problem and that they had the right to pursue it. It turns out they were wrong — at least in Virginia, where even your medicine and family structure may be regulated by the county.
Of course, Western methods of treating Hodgkin's disease offer patients an 85% survival rate after five years. This fact alone calls into question Cherrix's decision. Still, although chemo and radiation protocols may be more cut-and-dried now, varying formulas and blends remain. And it's still a crapshoot how a person will respond to any treatment and what the long-term side effects will be.
Unfortunately, the concept that a mature teenager might choose a so-called alternative path for himself with parental support was so offensive to the Accomack County social services agency that Cherrix's parents were ordered by the juvenile court to share custody of their son with the county and face punishment for medical neglect. The circuit court ruling ended the joint custody.
All I can say is how dare they?
As an 18-year-old, I had the most dangerous form of Hodgkin's lymphoma, and I wasn't given treatment options either. My parents and doctors told me I was sick, and I followed instructions: six months of chemo, then radiation.
I was then told that I was cured, even though I now see in my records that my white blood cell count was elevated after the "cure."
Only two years later, when a lymph node the size of a golf ball appeared on my neck, was I re-diagnosed. I followed orders once more after my parents chose a new doctor, who prescribed more chemo (ineffective) and a stem cell bone marrow transplant.
I'm 29 now and thankful that I'm here to tell the story. But I face many long-term effects from the "sublethal" treatments I endured. I must see neurologists, neuro-oncologists, neurosurgeons, rheumatologists, dermatologists, endocrinologists, gastroenterologists and other specialists. The consensus: 10 years later, I have mysterious health issues that are most likely the results of my so-called cure. And no one knows what to do.
Do I wish I had tried something else in the past? Maybe, but probably not. I was in a near-emergency state. I needed serious help, and quickly.
I do, however, recall feeling trapped with few choices — not even able to choose one hospital over another. My family and I were aware of alternative treatments that we had found in books. But they weren't considered options. We felt too scared to abandon Western medicine — perhaps more scared than necessary because of the sway it holds over America's cancer culture.
Now I see that these paths might have helped me. I now employ many "alternatives" to help treat my current condition while I wait for Western medicine to say something — anything.
So what constitutes "alternative treatment"?
The chemo-and-transplant combination that I received was developed by an expert renowned for his medical protocols. But there are others I was never told about. And who's to say that his method wasn't "alternative"? When he came up with it, it certainly was. Would the social services agency step in if Cherrix had found a pioneering doctor who had concocted new mixes of pharmaceutical-grade chemicals to fight Hodgkin's disease?
To be sure, patients with serious or potentially fatal illnesses who circumvent Western medicine run a serious risk of missing out on a cure. But spontaneous remissions occur every day, baffling doctors. And many of the doctors I see regularly, post-Hodgkin's, have no official explanation for what's going on in my body after all the chemical and cellular experimentation.
I say that if doctors are allowed to send you home without diagnoses after all their expensive, painful tests — and troubling test results — everyone, even a mature, educated teenager, especially with parental consent, should be able, without governmental intervention (or more obscene, punishment), to take his health into his own hands.