I read a lot of commentary slamming alternative healthcare with very generalized statements. But beyond that, not just slamming that, but the people who utilize alternative healthcare treatments. I am one of those people and I want to tell you what that feels like when I read material like that.
First of all, it hurts your feelings. Some of you might remember a time when I posted a lot more diaries and was more active on the KOS, and then I got a diagnosis of cancer. I went through some conventional treatments and some alternative treatments, and I have been just trying to hold my own. I stopped posting on the KOS for a very long time, not because I didn't have anything to say, but because I felt emotionally unsupported in my attempts to find care and healing through this difficult time. I sometimes felt attacked.
Every experience that I communicated, about the problems I found with healthcare, especially those dealing with women's physiology, gender bias, and just plain profit driven shittiness have been attacked and me along with it at times. And maybe it shouldn't bother me, but it does. I have feelings.
Some will say--oh well if you can't take the heat, stay out of the cauldron.
My reply is: Remember that when it's your turn.
But most of all, I feel like there is an attempt at a sort of ideological cleansing, to rid the KOS of people who like me, who use herbs, supplements, acupuncture, and other alternative treatments, because somehow we are supposed to be less authentic democrats.
Something that I have learned in this whole process is that when most people become afraid, they like to look for some kind of authority to lean on. Someone who can act as their loco-parentis and make all the boogie-monsters go away, be it cancer or terrorists, or herbalists. I understand.
Cancer is scary. It is fucking scary when you have it or are dealing with it directly in some capacity. And scared people like to find a place of certainty, so they can shed that uncertainty that causes so much angst.
I am wired differently. Yes I get scared. And there are forms of uncertainty I don't care for. But where there are no answers, there lies hope. It's an open window if you are brave enough to walk up to it and take a gander in spite of all those locked doors around you.
I have found precious little comfort in authority figures as a woman. I have experienced lots of scientific and religious paternalism--which to me are pretty much the same in flavor and texture. But rarely do I find many individuals that I willingly defer to completely on any topic.
Thinking for myself has been my most effective asset in this life--an adaptive, survival trait that has served me well and still is after all these years. Thinking for myself doesn't mean wholesale rejection of all that is conventional. But it does mean putting certainty and uncertainty, security and power in their proper context.
What we derive security from doesn't always truly convey certainty or security objectively. This is the source of the notion: Hindsight is 20/20. Throw cancer into the mix and things get even stranger.
The point here is, no one deserves to be emotionally sabotaged when they are dealing with cancer. Not one person. And yet I see that frequently, directly at people like me or directed at people who might be starting to think in those terms. Scaring them, misinforming them--even if you have the best of intentions is only crass manipulation of an already emotionally vulnerable, stressed out person. Behavior usually reserved for quacks, but no more. It's a backdoor exploited by many people whose good intentions rest on nothing more than theoretical knowledge, that fall very short of direct experience.
Every person with cancer is unique. They are unique in their psychological profile, in their cultural conditioning and in their physiology and genomic code. Even their cancer has unique genes. I know that those looking for cookie cutter certainty, dispensed from the paps of institutional authorities will find no comfort in this reality.
What works for one cancer patient, may not work for someone else. This has become such a big problem that some have developed genomic testing for patients and their cancers in order to create more personalized care.
Now before you get all up on your hind legs about boutique medicine and other perceived frivolities, I would offer to you that these tests were developed and performed because, it is easier on a patient's body to find medicine that won't kill them quicker than the cancer, and hopefully does kill the cancer quicker than the patient.
Cancer treatments are fucking hard on the body. Emphasis on fucking.
After surgery, you can look forward to the possibilities of real long lasting side effects like neuropathy, permanent digestive problems, chemo-brain, a host of other illnesses due to a suppressed immune system due to medicine and not necessarily the cancer. Some cancer patients become disabled by their treatments alone and not by the cancer itself. Or are damaged and disabled by both simultaneously. Some people seem to do fine. No one knows where on the cancer-roulette wheel they will land. It sucks but it is true.
The American Cancer Society says this:
Some types of chemo cause long-term side effects, like heart or nerve damage or fertility problems. Still, many people have no long-term problems from chemo. Ask your doctor about the long-term risks of the chemo drugs you’re getting.
Surgery carries risks as well as radiation and there are risks for reactions to more conventional drugs too. Side effects from those as well. Some supplemental treatments can reduce side effects or eliminate some of them. What would you do to reduce the side effects of chemo or radiation? What would you do to reduce pain from nerve damage?
None of this is to say that people should not seek conventional treatments. But it is a gentle reminder to all you monday-morning-evidence-based quarterbacks out there, that there is a helluva a lot more to deciding treatment options than a binary block diagram where you either check life or death.
Different cancers have different growth rates and risk factors--that alone can be a big determinate factor in treatment options.
There is more to life than just breathing. People facing serious, deadly chronic, potentially disabling diseases learn this in short order. Because the health choices we make do not carry with them, the certainty that is fantasized about on television.
House-MD doesn't show up and diagnose our mysterious illness in an hour or less, or our pizza is free. We often sit for weeks or months waiting to get definitive answers, all the while being offered invasive treatment options that might work if the Doc's best guess is correct.
And sometimes, the Doc--no matter how good they are, can only offer you a guess. And sometimes no matter how much that Doc likes you, they guess wrong.
These people who like to slam me and others for using supplements, nutrition, juicing, and spirituality and other alternatives for integrative treatments--here it is in a nutshell.
1. You are not the boss of me. Just like all those anti-choice people out there, you don't get to choose what I do with my body. MY BODY--Not yours. Get your own.
2. You are not here to hold my hand. You do not go to doctor's appointments with me, you don't tell me jokes while people are drawing blood. You aren't feeding me ice chips in post op, you aren't up at 2 am, consumed with anxiety reading the most depressing shit you can imagine, trying to figure out what to do, because no one else knows either. You aren't there to remind me to breathe when I am opening the mail that gives me test results.
3. You don't pay my bills.
4. You won't be here for my kids or my spouse after I am gone. You aren't here to fill in for me when I am sick and laundry needs washing or floors need vacuuming.
You are just a person on the internet picking on a cancer patient for choosing a treatments you don't approve of. That is all you are.
It would really cool if you would reconsider how you discuss these issues. Unlike you, I won't tell you what to think or what to say. I will simply say that your words are hurtful and unnecessarily so.
You would do just fine, to promote what you perceive as cutting edge breakthroughs in medical science, without having to emotionally and socially sabotage people who have more than enough of the trouble-food-group on their proverbial plates. Generalized attacks on integrative and alternative care do not make conventional options look better. Its just you spouting off your opinion based on what? nothing. Even cancer patients need to be nice to each other when discussing treatment options, because once again--what works for one might not work for someone else. Each patient is unique and each cancer genome too.
Because I won't change. I won't stop eating healthy because of you. I won't stop juicing or getting acupuncture treatments or EMDR either. I won't stop exercising or meditating. I won't stop taking supplements either.
I won't stop growing my own mint and rosemary or consuming my own propolis from the hives of my own bees.
Because even though you hurt my feelings, that is the only power you have. It's to be hurtful. But at the end of the day you don't own me and you have no authority to force or withhold treatment options period.
If you want to help cancer patients, push for more supportive care. Push for more regulations on chemicals and pollution. Push for better workplace safety. Push for drugs and diagnostics that don't themselves cause cancer in their application.
Most of all be compassionate, because there are days when none of our choices appear to have good or normal outcomes. And anything feels better than sitting there just waiting for death.
7:55 PM PT: Last weekend I listened to this episode on Ellen Langer, on the Science of Mindfulness at a site called On Being. She had some fantastically interesting things to say about the placebo effect. So if you have time, I recommend this pod cast collection. Here is the address for the podcast http://www.onbeing.org/.../...
And here is the address to the main page, index for the Ellen Langer pieces. http://www.onbeing.org/...
She talks about Mindfulness and Mindlessness. Really interesting stuff, that can be perhaps a spark for people who think like this or who are open to thinking like her.