Tomorrow we travel to Portland to visit with both Compass Oncology for a blood draw and check up, and to Hai Shan clinic for acupuncture and a reset of my swamp tea formula. The two sides of my treatment coin at the moment. After watching the huge TTAC documentary a few weeks ago, and then trying to research numbers about Tamoxifen, it has really been noticeable that the discussion around healthcare choices is often fraught with mud slinging and intolerance.
Perhaps I can write from a more open position, as someone who has used both conventional treatments and a whole host of complementary care options. It occurs to me that there is no one way to address cancering, but many. It also seems like there is a lot of pressure both internally and externally to toe the party line, and do things strictly the conventional western medical way.
More people could be helped by complementary care, and could have better care with western doctors if we could have a rational discussion about all of this. The media is demonizing, belittling and insulting in the portrayal of anyone not going all western. There are even reports of alternative doctors being murdered. This is serious stuff. We need to call for greater transparency, when a multibillion dollar industry has so much to gain, often at the expense of individuals, there is danger for all of us.
Getting a serious diagnosis is overwhelming, if you don’t feel like you can trust anyone it becomes terrifying. The good news is you don’t have to find one “true” source. There is so much information out there, you only need to use your discretion. The health of our body/mind/spirit, has many unique contributing factors. I have made choices every step of the way with my treatment plan, based on what resonated within myself. It is not my intention to direct or judge the treatment choices of others. I do hope that starting a conversation will encourage others to explore and make the choices that are best for them.
Standard of Care
Bearing witness to the dying process of my friend Meg both showed very clearly that there are no guarantees, and validated the importance of choosing your own way. We all die. When someone dies after receiving standard of care, they are blameless, when someone dies after exploring other options, like Steve Jobs, they are considered foolish. I have known people to die on both sides of that fence, and they are equally dead. It seems like judging people for their treatment choices is not very life serving. After all people have gotten better both with and without western treatments.
This is a dicey thing, in an age in which any thing other than “standard of care” is considered quackery. I would like to give voice to the idea that when standard of care trumps individual care we undermine healing.
What if not every aspect of standard of care is right for each individual? What if adherence to such could do more harm than good? What if complementary care can reduce suffering, or illuminate blind spots, or enhance the benefits of the standard of care? The trouble is that Medical doctors are legally obligated to offer standard of care, to do otherwise could be considered malpractice. It needn’t be all or nothing.
For Instance Mammogram
When I received my first post treatment screening mammogram in February 2015, the report came in the mail- with the sage advice that I have dense breasts, and that follow up breast ultrasound or breast MRI might be appropriate. The MRI that was already scheduled, as it was already known before I even got the mammogram that I have a dense breast. This would be funny, except that it’s not.
This seems like an case of “If you are holding a hammer everything looks like a nail.” Mammograms, even when questionably useful, and though they dose healthy tissue with radiation, are still considered essential. “Safe” though apparently ineffective for many premenopausal women.
Before being Zapped in 2015 I questioned the validity of mammogram for my known dense breast, which was enough to freak out my surgeon and oncologist. “Mammograms are safe blah blah blah.” I again questioned it this year, and the party line remained the same. It is only now that I am doing medical referrals for a living that I know they can’t get insurance company approval for an MRI without inconclusive mammogram results to validate the expense. Which is pretty stupid, given that it would save them hundreds of dollars to just skip the mammogram. The degree to which insurance companies dictate care choices is alarming, and concerns all of us.
People vs Profits
We all need to find what works for us, and the legal designation of STANDARD OF CARE does not allow for that. My neighbor Ann died of her colon cancering earlier this year, one of the things we talked about the last time I saw her was that her daughter, a cancer research worker, had encouraged her to get a test to determine if she was being helped by the particular chemo she was being given. She had to fight with her insurance company to receive the test, and as it turned out, the chemo she was being given was the wrong fit for her body – in fact her liver lacked the enzyme needed to transform the chemo into the active form.
The Question is why wasn’t that test performed as part of standard of care prior to administering the drug? If a blood test can determine efficacy, than isn’t giving someone a poisonous medicine their body can’t use criminal? Did her doctor not know about the test? Why wasn’t she given it before she was administered the drug for months?? It boils down to a numbers game being played by actuaries.
Which leads me to my fierce belief, that we must be advocates for our own health, and that we need help with that. In the words of my friend Betsy. “Iris you don’t have time to get a doctorate degree before you make treatment decisions.” And we don’t, but as Meg told me “Your doctor is seeing lots of different people with lots of different kinds of cancer, he doesn’t have time to be an expert on everything- but you can become an expert on your specific pathology, and you can help him give you better care.” So we need to be advocates for ourselves, and get help from others.
There have been many things I have chosen to do based on information given to me, and many things I chose not to do, in both the western medicine front and alternative therapies. The blind adherence to Standard of Care, and the demonizing of alternative treatments prevent people from getting individual care. It prevents people from even considering alternatives- and given the tremendous profits involved I think we need to be more critical of why that is.
On the ground level oncology doctors and nurses are doing the best they can, mine are passionate advocates for their patients, including me, even though I don’t always agree with them. However it is not paranoia to suspect that somewhere in the decision making chain of command there are choices being made that prioritize profit over people. Remember the Tobacco companies suppressing studies showing the dangers of smoking their cigarettes? We know that the choice to prioritize profits is being made all the time. We are talking about a multi billion dollar industry, that profits from human suffering, it behooves us to question it.
Cancering is complicated, and it calls for us to treat it with a wholistic approach, that takes into account nutrition, moving our bodies, and doing emotional work. All of which is not included in standard of care, despite countless research studies that show a clear connection between food, exercise and emotional connection to health and longevity. Like standardized tests, which often miss the wild creative intelligence of our children, the standard of care model of medicine misses a big part of the individual healing picture.
I encourage anyone to listen to your gut, your body is an incredible barometer on what is good for you. If when you are reading something you feel afraid- take a step back. If something you learn rings true- look a little deeper. Find someone to be your advocate when you go to your doctor – someone who can help you process the hoards of information you receive.
Give yourself some space to make your decisions. It is actually really really rare that someone needs to have surgery or any treatment immediately. Ask for space. I took a week to decide whether I wanted to do chemo. Which was good on a few fronts, ONE, I felt ready to think positively about it, and TWO, they received new information about my pathology during that week which radically changed my treatment plan.
Take time to breathe.
Take time to listen to your body.
Ask for help and explore your options.
May the forces of good and healing surround you.