Tuesday, September 6, 2016

First Drafts - Goldilocks & the Three Diets

Trying something here. Since I'm busy plugging away on my Kicking Cancer's Ass memoir, I thought I'd post some of the first draft versions of some of my chapters. This one is about my medical oncology visit in July 2015.

Despite having to start with my favorite thing, a Needle Encounter and blood draw, my first meeting with my medical oncologist went well. Dr. Julie Dunhill, who would serve as the head honcho, in charge of the medical branch of Team Tiara, is beautiful. She’s a trim, petite woman with gorgeous Goldilocks hair. I like her tremendously.

While she felt that there wasn’t too much to be concerned with re: my still very pink boob, she prescribed antibiotics anyway, just in case there was an underlying infection. She wrote me a prescription for Tamixofen, to start after I finished radiation, whenever I felt recovered from that and ready to start Adventures in Medication.

Also, she wanted me to lose weight.

In a very gentle, non-judgmental, I-just-want-to-help way.

Shit, I want to lose weight, just for the aesthetics of it.

And I know how to lose weight. Haven’t I done it three or four times previously?

That’s the problem. I’ve been studying the HAES® (Health At Every Size) model, which offers rather convincing evidence that 95% of people who set out to lose weight, may take it off short-term, but even with the most strenuous efforts, over time they gain it all back, and usually more.

That’s certainly been my pattern. Dieting, even slow dieting like I’ve done, does shitty things to people’s metabolism all by itself. And, surprise! There’s increasing evidence that being overweight or obese (according to BMI standards, which are pretty much ridiculous horseshit), is actually healthier than being “average” or thin.

The diet industry makes not merely a boatload, but an entire armada of money convincing the American public that fat = unhealthy, and to buy their products. Unlike the tobacco industry, whose customers die off, people who have weight-cycled keep plunking their money down to try the latest diet food or plan or support or tracking system, hoping that this time, it’s going to stick, unlike the last time. Or the time before that.

There is a correlation between obesity and breast cancer, according to my research. But correlation is not causation, and blaming cancer on fat is the quick and easy answer. The culprit might be weight cycling itself – losing weight, gaining it back, over and over. Or perhaps the damage is done by the extreme things desperate people do to lose weight, from crazy medicinal aids and supplements, to fasts and cleanses, to enemas, to bariatric surgery. Very few fat people haven’t tried at least one of the above methods to lose weight.

I did the math, based on my research into breast cancer growth rates, and the lab results on my personal tumor. By all indications, my cancer was “born” at a time when I was not overweight, but was in a toxic, emotionally stressful relationship. Somehow, even though I kept piling on the pounds, before and after that relationship ended, my fat didn’t seem to have speeded up the cancer growth.

Medical science has its biases, its mistakes, and wrong turns. All new moms around the time I had my son were advised by medical professionals to always lay our newborns on their tummies, not their backs, because Sudden Infant Death Syndrome. And now we know the exact opposite is true, babies should be laid on their backs. Fat people are often advised “just lose the weight,” as if that will make everything better. Like coconut oil, being thin is magical! Thin people don’t die of heart disease or get cancer.

Except they do.

Medical professionals too often stop at, “Welp, they’re fat,” and don’t dig deeper for the actual problem. I encourage everyone to read my friend Rebecca Hiles’ blog post on how medical fat-shaming almost killed her. They say being fat increases the risk of diabetes, but I’ve known plenty of thin people with diabetes. Why do they get it? Why don’t all fat people get diabetes? If being fat causes high blood pressure, why has mine always been low to normal?

When my mother was dealing with her breast cancer, originally they told her to stay on birth control pills, because “You certainly don’t want to get pregnant now.” Later, they took her off them, with a dim inkling that her cancer was related to female hormones. So they gave her testosterone, because that’s the opposite of female hormones, right? They were trying to do something, because something was better than nothing. I’m not blaming them, they didn’t know any better. But in retrospect, my mother went through a lot of needless torture, beginning with the savagely radical mastectomy that was never going to save her life.

One theory about why obese cancer patients risk recurrence or lower survival rates is that as many as 40% may have received too little chemotherapy for their weight. Many chemo doctors often practiced something called dose-capping, afraid of going too toxic, although there’s no evidence that dosing patients by weight creates any worse side effects. Maybe some thought they were doing the right thing, maybe some were trying to cut corners and save on the expense of the extra chemo drugs. But it makes sense that somebody who weighs 250 pounds needs more drugs than someone who weighs 150 pounds; chemo, pain meds, or anything else.

Chemotherapy isn’t a factor in my personal cancer journey, because I didn’t need any.

So much of what is going on with cancer treatment today is a thousand times better than it was fifty years ago, or even ten.

But there is still so much we don’t know.

I’m doing my best to help the process along, and my blood draw was also coordinated to give the RISE study people the samples they needed. I also turned in my saliva samples to Carly, one of the RISE volunteers, who is an absolute doll.

I do wonder how many of the health problems of fat people can be linked to social shaming and ostracization, to self-loathing. I remember all too well the thrill during my dieting days, when the scale gave me “good news.” The widespread social approval and praise I earned by being a more “acceptable” size. And the horror and shame I felt when the numbers on the fucking scale slowly, inexorably crept upward.

Cancer – abnormal cells, that don’t perform their intended function – happen in our bodies all the time. Normally the body’s immune system recognizes and destroys the baddies. When they don’t, that’s when cancer establishes a foothold.

Or a boobhold, as the case may be.

We’re coming to recognize that not only genetics and environmental toxins make us more vulnerable to disease, but stress and emotional pressure impacts our immune systems. Could it be that the lifelong societal stress of being treated as “other” is why POC (People of Color) in America almost always have worse medical outcomes than white people with the same conditions, even when economic class, quality of care, and other variables are factored out?

Estrogen feeds an estrogen-receptor positive cancer, like my breast cancer. Hence, the Tamoxifen I would be starting in a few months, which helps block estrogen released from the ovaries. When my ever-loving ovaries stop plugging along, Dr. Dunhill will put me on an AI, aromatase inhibitor. Because when the ovaries quit, that’s when the adrenal glands step up, and start converting the body’s fat reserves into estrogen. An AI helps interfere with that process. That’s the logic in the “get rid of the fat” pressure, because if they don’t have fat to convert into estrogen, any cancer cells that depend upon estrogen will be starved to death.

But. Even Olympic gymnasts have some fat reserves. Does it really make a difference, if a person has X amount of fat, or XXX amount of fat, if all the adrenal glands need to make estrogen is X amount? I’m pretty sure that having a body fat percentage of zero and still being alive are incompatible goals.

According to Cancer Today Magazine, “evidence currently doesn’t exist to say unequivocally that weight loss itself helps survivors live longer or free from recurrence.”

It’s a very weird position to be in, to like and trust my doctors, and at the same time, feel so skeptical about this part of their treatment and advice. After all, I’m not a doctor. Am I trying to cherry-pick facts, like an anti-vaxxer? Or is my skepticism something that makes sense?

I am 100% convinced that all my doctors are well-educated, highly competent professionals who want me to be happy, healthy, and disease-free. I am also convinced that being an American in today’s culture influences everyone, including medical professionals, to subconsciously be biased and to believe that thin = healthy/attractive, fat = unhealthy/unattractive. I know I am biased.

If I have to base my self-love and self-compassion on learning to love my rolls of fat, that’s gonna be a fail. If the Body Size Fairy boinked me on the head with her magic wand, and I could be healthily thin for the rest of my life, I would be ecstatic.

Even if being fat does put me at higher risk, I am not at all confident that this time I have a real chance at being among the five percent who take off the weight and keep it off, long-term. I am terrified, frankly, of “doing well” at weight loss again for a few years, but in the long run, ending up even fatter than I am now.

My compromise is to strive for what the nutritionist advised: 6-7 servings of fruits and vegetables every day. Yoga and meditation and comedy to deal with stress. Seek to swim ride my bike as often as possible.

Because Dr. Dunhill advised, better not to task my skin with chlorine and harsh chemicals until I was fully recovered from the radiation treatments.

No pool for me!

Your thoughts?
P.S. I CAN get in the pool now, yay!

Tuesday, August 30, 2016

Team Gilda or Team Karen?

A black-and-white photo of Wilder smiling
Gene Wilder via Wikimendia Commons
In the wake of Gene Wilder's death this week, an interesting thing is happening on the Interwebs.

Most of us were aware of Mr. Wilder's marriage to brilliant, beautiful comedian Gilda Radner, cut short by her death of ovarian cancer. Less aware of his two previous marriages, to Mary Mercier and Mary Joan Schutz. Or of the love he left upon his death, Karen Webb Boyer, to whom he'd been married for 25 years.

People wrote and talked of how he and Gilda could "be together again" now. Others talked about how hurtful  and disrespectful such an expression could be to his widow, Karen. As if we all had to choose teams, Team Gilda, or Team Karen, because in the afterlife, There Can Be Only One (Love).

Why? Why isn't it entirely possible, that even as Gene found new love with Karen, he continued to love and mourn Gilda? And perhaps even his previous two wives? Why do we assume the heart - or the afterlife equivalent thereof - is only big enough for one romantic love at a time?

We don't assume this about any other relationship. Beloved pets, grandparents, siblings, parents, children, dear friends... When we imagine Heaven, don't we imagine all our loved ones will be there? Would it even be Heaven if we had to choose: one child, one pet, one parent, one romantic love? One musician or rock band? And only one?

I know many who still love Elvis, even though he left the building a long time ago. And they went on to love other musical acts.

As someone who practices polyamory, the idea of Only One - even in this life - seems silly. There have been times in my life when I've had no current loves. Other times, several simultaneously. Yes, it's more complicated. Of course, time and financial resources are a finite commodity, whether we are talking about children or romantic interests or cats.

But love? Does anyone truly believe that Gene's love for Gilda cut off like a spigot when he met Karen? Or did she accommodate and make room for it (as perhaps he did for her past loves), secure in the knowledge he loved her just as much, if differently?  They moved into the house he shared with Gilda, she must have come to some peace with that very public relationship.

I've found my love doesn't shut off like a spigot, even when I was trying and failing at monogamy. I could make myself conform to society's norms - only one penis granted access to my genitals for a set period of time. But my heart loves who it loves, when it chooses to love them, regardless of sexual activity. I've continued to have feels for men with whom I am no longer sexually involved, sometimes for decades.

I think, I hope, that this sad event [full disclosure, I had a huge ladyboner for Gene Wilder before I even knew what a ladyboner was] will spur people to contemplating more about the limitless nature of love. Perhaps to understand those of us who identify as polyamorous a little better.

We're not so different from Gene & Gilda, or Gene & Karen. We simply don't require our loves to be divorced from us or dead, before acknowledging that a new love has entered our loves. Without taking anything away from the love that already existed. We have learned, are still learning, to share heart space.

Living a polyamorous life can be challenging. There can be jealousy to be worked through (please note, there's plenty of evidence that monogamy does not magically cure jealousy), conflicting desires, and complicated schedules.

But life is short. Let's all acknowledge the love we have in our lives.

Your thoughts?

Tuesday, July 12, 2016

I'm Not a Racist, BUT... #BlackLivesMatter

If you're in the mood to read happy fluffy stuff about the care, feeding, and birth of an anthology, that post is over on Susan J. Berger's blog. In it I discuss what reasons are good for a group to put out an anthology, what benefits it brings to already established, best-selling authors, and what I learned during the process, please check it out.


7 Ways to Support #BlackLivesMatter and Be a Good Ally (for my white friends)

1) It's not about you, and it's not about your husband/brother/other loved one who is a conscientious and careful police officer. #BlackLivesMatter doesn't mean ONLYBlackLivesMatter, or that it's #BLM vs. the police. You can support the police, not want them to be killed, AND want there to be police accountability, better training, and that those who mistreat POC, the mentally ill, and others get kicked off the force rather than be protected by the thin blue wall of silence.

#Black LivesMatter is about drawing attention to and trying to change the ongoing, systemic racial bias that impacts policing, the judicial system, employment, housing, and and and.  Here's an excellent post with statistics by J.B.W. Tucker.

Borrowed from onsizzle

2) Self-educate on the issues and how you can help. Our exhausted friends who are POC don't have the time and energy to spoonfeed us anti-racism 101 (though they are trying gallantly, anyway).

3) Don't cry, excessively apologize, or in any other way seek attention or a gold star on your mental "good person" chart from a POC. They are suffering grief, pain, worry, and PTSD. They don't deserve to be saddled with comforting white people because we have uncomfortable feels right now.

4) If you are white, you might be sick of hearing about white privilege and being asked to check it. Trust me, POC are even more sick of living without it. Too often sick or injured, literally to death.

If you have ever been the lone white person in a group of black, Hispanic, Asian, or other not-white group, how unsettling did it feel? Now imagine that is your life, every single day, and you have a little glimpse at what it's like to be a minority person in America. Except that instead of mere discomfort, your life and those of people you love are at higher risk.

5) If you like to think of yourself as a "good person," but "don't want to get involved or be RUDE," by calling out the openly racist people you know on their shit, you might want to rethink that. If you believe in "Keep America Beautiful," but don't speak up when you see your friends litter, you're tacitly approving and endorsing that behavior.

6) If People of Color are speaking, STFU and LISTEN. Do not talk over, interrupt, or otherwise marginalize POC, especially right now. Put your hand over your mouth, or step away from your phone or keyboard, if you have to.

7) Limit as much as possible your whitesplaining to forums where you are a white person talking to other white people. Instead, as much as possible, support and amplify the voices of POC by sharing their experiences via social media and in conversation to other white people.

Closing with something from Sex Positive World:

We are living through painful and challenging times.

Forces for positive change are clashing with older, repressive cultures who refuse to accept change. People are dying as a result of hate-filled actions. Muslim people in Turkey, Bangladesh, Iraq and Saudi Arabia; LGBTQ people in Orlando; cafe-goers in Paris, police officers in Dallas, American People of Color... everywhere. Our hearts ache with the weight of every death, every one of these ridiculous, needless acts of violence.

Sex Positive World believes, as Maya Angelou said, that Hate has caused a lot of problems in the world, but it has not solved one yet. We believe in human connection, in love, in juicy sexual connection, in active consent and consideration of all human beings for one another.

We encourage all our members to check in with one another and offer love, consideration and support to anyone who is personally touched or triggered by these traumatizing events. We encourage our members to take a social media hiatus, if necessary - and good for you for taking care of yourselves! Or, please, ask for support from your SPW tribe, if you need it.

People may say things at this time, without fully considering the impact of their words. Please try to give the benefit of the doubt, and assume positive intent. Ask for clarification (did you actually mean XYZ?) when unsure. Allow for the fact that some might blurt out words of frustration and anger. Maybe respond with a hug?

We encourage all our members and friends to be kind, sensitive, and loving to everyone we can, during these challenging and painful times.

Please count this post as me checking in on you.
How are you feeling in these emotionally rough times?
Your thoughts?