Saturday, December 24, 2011

Control C

When I first found out I had cancer, I spent a lot of time contemplating the idea of control. My initial feeling was one of helplessness, a loss of control. Naturally, I had a very brief, but very real, and deeply genuine thought: "why me?"

I started thinking about things that have been shown to have a direct correlation to cancer: Abusing alcohol, smoking, drug use, poor diet, lack of physical activity, exposure to chemicals. None of these applied to me. Like most who probably get diagnosed, I always felt like I would never be a part of that statistic. And certainly not at 28.

Then I started taking my diagnosis personally.

I believe in Karma. I treat others as I want to be treated. I put others first. I don't judge. I'm a NICE person.  So, yeah, why me? Why not the bitchy girl we all know. Or the guy that's a jerk to everyone. How is it fair that I am the one that ended up with cancer?

But it turns out, cancer isn't fair. And it doesn't discriminate. It doesn't matter that you're a good person, that you make all the right choices (most of the time). Sometimes you just can't control cancer. 

Or can you?

I've spent the last two weeks endlessly researching an alternative treatment to chemo. I WANT to believe the doctor's when they tell me that “this,” whatever they say “this” path is, is the best option. The only option. I crave staying the rule follower that I've always been. But I know that even the all mighty doctor doesn't have all the answers. They don't know everything. The reality is, chemo is not effective for most cancers. In fact, according to International Cancer for Nutritional Research, “Chemotherapy contributes just over two percent to improved survivial in cancer patients.”  Only benefits TWO PERCENT of cancers? How can that be enough to stake my life on?

Almost always, however, We just don't have a better option. The reality is, more often than not, chemo does more harm than good. But it is human nature to need to do SOMETHING instead of nothing, even if that something involves pumping your body with drugs so toxic, that they themselves cause cancer. But as my doctor said, we deal with the cancer you have now instead of worrying about the potential cancer you'll get down the line. Super reassuring...

I can deal with the hair loss, the nausea, the fatigue. But when I'm told that the treatment -- THE "CURE" to my current cancer -- will significantly increase my chance of eventually getting heart disease, breast cancer, lung cancer, leukeimia, thyroid issues, as well as a host of other life threatening diseases, I can't just blindly accept what the doctor says is right.

I realize this sounds crazy to most people. I repeat, I realize this sounds crazy to most people. I’m not trying to justify the position, but I’m deflecting the other radical position in this debate too, namely that "Doctors are trained professionals." "This is their job." "They treat people like you every day." "Just listen." "Just TRUST them."

Fact check: this is my health. My life. My body. And I've never been very good at immediately trusting people in the past, so why the hell should I start now?

So I researched. I've read countless stories of people with incurable cancers curing their disease with alternative medicine. I've watched documentaries on how changing your lifestyle and diet alone can shrink tumors. (Burzynski: The Movie, Forks Over Knives, The Gerson Miracle).

I've learned that statistics are misleading. That my 85% cure rate means that more than likely I'll survive five years. FIVE years. Great, I'll make it to my 33rd birthday. I won't even be old enough to go through my mid life crisis where I can buy some outrageously flashy convertible to prove how young and cool I am. So what if I make it to 33? And then what? If I die after five years and one day, I'll still go down in the records as being cured. Even if I then die of cancer. Officially, I will have been “cured.”

I've also talked to experts who have told me that the American Cancer Society, the American Medical Association, the Pharmaceutical companies, and the FDA all benefit from cancer patients. How they would lose billions of dollars a year if a cure to cancer was found. And as fucked up as it sounds, that these industries benefit from people having cancer. In fact, we are no closer to curing cancer than we were 50 years ago. Even though the American Cancer Society has an "any day now" message in the media. That message is starting to get old. Decades old.

I've even found out that Oncologists financially benefit for every patient that gets administered chemotherapy. One article in the New York Times said this:

"Unlike other physicians, a cancer doctor can profit from the sale of chemotherapy drugs in a practice known as the chemotherapy concession. These doctors are paid for the cost of the chemotherapy drugs given intravenously in their offices — even though they frequently purchase the drugs at lower prices than the amounts they are paid in insurance reimbursements.

One government study said that cancer doctors, or oncologists, were receiving discounts as high as 86 percent on some chemotherapy drugs. The doctors then pocketed the difference."

I'm not an expert and I am well aware that there is A LOT of false information on the internet. But one thing that has been made clear in my research is that none of the experts are 100% looking out for my best interest. Everything is political. Even the anti-chemo videos have their own set of motives that don't always benefit the patient.

The reality is, I am the only one who is responsible for looking out for myself. For getting all the information. For making the most informed decision possible. I have control over my own treatment plan and it's okay to question the doctors, even if their fragile egos disagree. But again, this is my life and I'm okay pissing off my doctor if it means a better outcome for my own treatment.

I've also learned that all of these "experts" - oncologists, radiologists, nutritionists, Ph.D biochemists, etc. - all think their way is the right way (which I totally get. I'm always right too - just ask my husband). But what I've learned is that when it comes to cancer treatment, there is no "right way." I've learned that what is right for me might not be right for the guy next to me that also has Hodgkins Lymphoma. We're all different, so how do we expect the same set of drugs to treat us equally?

So my dilemma over the last two weeks has been whether or not I go the traditional route and fill my body with toxic drugs that have a host of severe short and long term side effects or take a risk and try an alternative treatment that may not be "officially proven" and may do nothing but waste time and allow my cancer to grow? And with so much information on the internet and so much conflicting information, how do you make that decision?

Recently, it was suggested to me to check out the non profit, People Against Cancer. The woman who recommended them is a friend of the family and who I would consider an expert in the field of cancer, not only professionally but as a cancer survivor herself. So, it was extremely helpful to me that she pointed us towards People Against Cancer.

What the organization does is help with the overwhelming research process and help illuminate the best path of treatment for each specific patient. They don't just look at the cancer, but the whole person. Their job is to ultimately help minimize the risks and maximize the benefits of the chosen treatment plan. And, in all of my research, they seem to be one of the few organizations that is willing to engage multiple treatment options from the different fields of both traditional and alternative treatments, and is willing to let the patient decide for themselves based on the several options presented – what option is best for me?

More than likely my treatment will involve a combination of treatments. It will be integrative too.  But, I’m almost certain (but not yet truly certain), that it will include both chemo (because lymphomas are included in the 2% that do benefit from chemotherapy) and alternative therapies like acupuncture, yoga, massage, and nutrition. And, as my husband promised, RETAIL THEREAPY. (Good things can come from cancer!)

It's unfortunate that these alternative treatments aren't first brought up by my oncologist - that its the responsibility of the patient to raise the concern about nutrition during chemotherapy. That they don't tell you about what would be helpful to avoid as a person living with cancer. For example, cancer feeds on sugar- the PET Scan that measures cancer is radioactive glucose. Glucose. Aka Radioactive Sugar. And yet, when you’re doing chemotherapy, the doctors offer you cookies and fucking lollipops. Hello? Here you go cancer, get nice and strong on these sugar cookies.

But to an oncologist, getting rid of the current problem, the cancer, is considered a success. And it doesn't matter how much it destroys the body in the process or if you’re literally feeding the cancer with sugar as you're essentially destroying my body’s natural defenses. Talk about feeding the beast.  Literally. Again, fact check. This is my body. My health. My treatment plan.

According to the oncologist, if you're alive at the end, it's a win. But me? I plan on taking more control. I plan on not just being alive, but being a healthier, more informed version of myself. I don't want to ever again wonder "why me?". Life isn’t fair, so fuck it -- I’m going to make sure I've controlled every piece of this process to ensure the only "C" I celebrate next year (and way more than 5 years after that) is Christmas.

Merry C everyone!

1 comment:

  1. You go girl! Just catching up and wishing you and Brad a verrrry merry C. Also, you are a phenomenal writer, I enjoy reading every minute of your delivery despite the difficult message embedded in this challenge. And Cheers & support to you in your efforts to provide holistic health to/for your bod girl! Champagne toast to you, and another to you and the hubs. Lots of love!