Tuesday, September 27, 2016

Unpacking the Lessons of CatalystCon

Just when you think you have no more virginities left to lose gleefully shatter...

Sept 16-18, I attended - and presented panels at - my first CatalystCon.

What is CatalystCon?
CatalystCon is a conference created to inspire exceptional conversations about sexuality. It is about reaching out and stimulating those who attend to create those important conversations in their own communities, changing how we as a society talk about and treat sexuality.  It is about stimulating the activist that is within all of us and sparking transformation in the way our friends, neighbors, children and even politicians discuss one of the most important aspects of humanity.

So, okay we can (most of us) accept that this is a conversation that needs to be stimulated. What does that look like, feel like? Who's at such a conference? And what can we learn?

Lesson One: The Hurrieder You Go, 
The Behinder You Get

For starters, it felt like me rushing to my car Friday morning, painfully aware that my friends from SPLA were waiting for me to arrive with our swag, the banner for our table, and other printed materials, which were all in my vehicle.

Our table did look nice. Partly because of volunteers like Patrick, Jules, and Mina.


I next became even more painfully aware of dropping my full, 24 oz. water bottle, directly on my big toe, while rushing to get into the car. This did not benefit my fresh pedicure or my water bottle.

Also, owie owie owie!

Lesson Two: In Any Situation, You Will Find People and Situations You Did Not Expect


Arriving at the area set aside in the hotel for us, it was highly amusing to find that our convention, including hundreds of sex workers, sex toy salespeople, and sex educators, had been placed next to a yo-yo competition, mostly young men in their teens and twenties. At least one of our conference goers, who appears in adult video entertainment, was recognized by some of her yo-yo'ing fans.


Lesson Three: If It Involves Technology, 
There Will Be Difficulties

When I created my PowerPoint slideshows on my desktop computer, everything looked great, but when I transferred them to my laptop, all my hot pink accents turned... purple. This was a problem as it totally clashed with the hot pink logo on most of the slides. Was able to fix that..

But despite locating the A-V tech, discussing cords and hook-ups and stuff the day before, (mine was one of the first panels on Saturday morning), and arriving that morning fifteen minutes early to get everything hooked up, we still had technical difficulties.

My awesome panelists: Dr. Victoria Reuveni, Dr. Jennifer Lang, Mina Harker,
plus me and Tony the Technician

Lesson Four: When You're Up On The Dais, 
No One Can See The Screen

Although I had discussed the subject matter with my panelists, and sent some of them the materials to review, add suggestions, etc., I did not realize I would have to guide them through it. Because the slides were projected on the screen behind us, and nobody else had a good view of my laptop.

So I felt like my presentations were too much my voice, though others said they went fine.

When I do future panels, I will make sure to print out hardcopy of each slide and share with the panelists, so they can chime in more spontaneously.


Lesson Five: You'll Want To Hang Out With Everybody, But There Won't Be Enough Time


One of the best things about a national conference was getting to see long distance friends again, and to meet those I hadn't yet met in person. Also, getting to fangirl over some of the rockstar educators in the sexuality field was awesome.

Caroline Ryan, who came all the way from  Ireland

Antoinette and Kevin A. Patterson of PolyRoleModels

Walker J. Thornton, Author of Inviting Desire

However, the dinner or lunch I'd hoped to have with some long distance friends didn't happen, and during chats over dinner before the keynote presentation, it was impossible to converse with everyone at the table; too much noise. Besides my immediate seatmates, it was mostly a matter of "Just smile and wave."


Lesson Six: Pervy Pin Collecting Is A Thing

I collected some I really liked,



If not as many as my friend Dana.


We've all heard of sapiosexual and pansexual.
Now introducing: PINsexual.


Lesson Seven: It'll All Be Over Too Soon

I really had a blast, and so did my tiara. I had been warned about, and luckily, did not experience much ConDrop (a term for the psychological letdown experienced by many following an exciting conference). I did my best to stay hydrated, eat healthily, and checked in with myself and rested rather than staying up half the night partying (though I heard there were some amazing parties).

Dee Dennis and the other organizers did an incredible job. I am so grateful for the experience and looking forward to doing this again.

Have you ever been to CatalystCon, or other conventions?
What were your take-away lessons?
Your thoughts? 

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?