Boss Up with Bevin Your dream life is at the end of your comfort zone

2017-03-28

General Life Update

Beloved readers, here’s what’s been going on in my life lately. Anyone following me on Instagram probably knows about what doozies life has been hurling at me lately.

Me and Dara at the Cuties fundraising carnival on Sunday. Their fundraiser is going on for a few more days, you can still donate to this vital safe(r) space for queers in LA!

Your Girl is Getting Great Press

I’ve had a couple of fabulous interviews come out in the last week!

Fat Sex Week XXL is coming! It starts on Thursday and I’ve already gotten press about it. I love serendipitous press. I was nominated as a Sex Hero and I was already thinking about another Fat Sex Week because a lot of great content was floating my way and poof! Check out this fabulous chat between me and Noah Michelson Editorial Director of The Huffington Post Voices about fat sex, why Fat Sex Week matters and what you can expect! (Spoiler: Fat Sex Week is always fatter than a regular week.) What an honor to be called a Sex Hero!

Me, April Flores and Tristan Taormino, also big time sex heroes!

I’ve been telling everyone about Jeffrey Marsh’s incredible book How to Be You (seriously should be required reading in high school) and so admire their work helping people to love themselves. Jeffrey and I have such in sync life purposes.

I was totally thrilled to be interviewed for their new Facebook fan page. We had such a beautiful conversation about how I came to be a body liberation activist and how my turning points to love myself came about. Check it out here and be sure to like their page! (Like my fan page while you’re at it! I’m always popping in great articles and self empowerment.)

I Started Fat Kid Dance Party

A month ago I launched my new dance aerobics class Fat Kid Dance Party (For All Sizes to Heal from Body Oppression). When I heard about EVERYBODY the new body positive gender inclusive gym opening up just six minutes from my house I had to figure out how to get involved. I started taking dance aerobics in LA and was frustrated that the classes were so fast-paced and not really open to all levels, even though they said they were. So I decided to do it my way. I had been producing body positive queer dance parties, this just meant that I was not only Femmecee and Producer but I was the choreographer and DJ, too.

This is what a gender neutral locker room looks like! Now if only they would install in a make-up mirror/vanity for the Femmes of all genders who want to put on their face/take well-lit selfies.

I spend hours on this every week as I learn this new art form and healing modality. I’m so excited how I’ve been able to use the concepts I’ve incorporated in the workshops I teach about body positivity into lessons during aerobics numbers. It is a very unique class and, I think, very healing with high joy vibrations. I’m getting great feedback from folks coming (bring friends, it’s so much fun in a group). Last week we did a cheer dance routine to all Missy Elliot songs, we did an aerobics dance for peace, a Prince song exploring body postures that give confidence, a 90s dance retrospective to Vanilla Ice and more. Every Thursday at 7:30PM! When you sign up online ahead of time, your check-in at the gym will be very fast.

My philosophy is if I would go to a dance party wearing it, I can use it to teach class. I love wearing overtly political shirts to teach aerobics. You can grab this and many other fabulous shirts/tanks/onesies from Genuine Valentine!

Since I often use exercise to prevent depression, I think my partner Dara genuinely believes I am going to be a happier person because I’m an aerobics instructor. Using an actual line of factual reasoning from one of my favorite movies, Legally Blonde.

We’re Finally Moving

My beloved Grandmother POTSA (Passed On To Something Awesome) on January 26, exactly a year after our lease on our little house in LA began. Two days later our landlady told us she was selling our house. Things here haven’t ever been great—it’s an old house and took a lot of work to become comfortable. We put heart and soul into it and even did a very DIY remodel of the attic to create a Mariah Carey closet for my clothes and Femme accoutrements.

Photo by Jes Baker of the Militant Baker. I’m still working every weekday monitoring her social media.

Our landlady used to live in the house behind ours that shares our driveway and while she was there with her grown children it was chaotic but not awful. We even had some really sweet holiday gatherings for Seder and the High Holidays in the courtyard between our houses. However, she moved out in October with her son and things got way worse. Basically, her daughter is selling meth and we suspect that at times have been cooking it. (Based on tells, like rotten egg smells, SO MUCH GARBAGE, etc…)

This is the Epic High Holiday. I used glitter burlap to artfully cover their weird pile of junk that included three old TVs (one was a big screen) that sat there for months until they cleaned it out and immediately replaced it with a broken down convertible that is now collecting a different pile of junk. But this pic is a great example of that old adage “When life hands you a pile of junk in the middle of your event space, break out the dreamy twinkle lights and glitter burlap.” Photo by Rick Sorkin.

I’m a person who believes really strongly in body autonomy and people getting to make their own choices about their bodies and what they do to them. That’s why I don’t shade fat people who make choices about weight loss and that’s why I don’t shade folks who use whatever drugs they want. However, one of the first things I learned as a young adult was “Never trust a tweaker.” That’s really stuck with me and I keep my distance. I also work hard at a 12 Step program for families and friends of alcoholics and drug addicts and I know the realities of that life very well. It’s been hard to have that energy so close by, the Trigger Train is making all stops.


The foot traffic next to our house has been rough. Imagine strangers constantly streaming past your living room and kitchen windows. It’s like having a coffee shop open up but not exactly coffee. The worst part is Macy, my dog, now has cancer and I highly suspect it’s from the stress and energy of the people passing. If you’re not a spiritual person, from an earthly logic place any dog would get stressed by so much foot traffic. From a spiritual place we had Syd, our energy healer, come by to do a healing for Macy and Biscuit Reynolds and she described the energy of the person walking by as being “hit by wasps.”

Things got to the biggest breaking point when we were up in San Francisco for my friend Amanda’s memorial. The folks in the back house had a party and someone was screaming about a gun. 9 cop cars and 2 helicopters later our pet sitters left Macy alone in the house overnight and I just hit my own breaking point. I knew I couldn’t be present for a memorial while scrambling to coordinate pet care from afar. We turned around and drove home the next morning. (Only one arrest, they are very good at hiding their drugs and guns.)

Anyway, we’re happy to have finally found a place! It was a difficult search. I’ll write a post about it in the future, but we were looking at a leap in rent no matter whether we got a smaller 2 bedroom house or a bigger 3 bedroom house. We could say yes to this paradise in Eagle Rock because it is well set-up for a room to be an occasional air bnb, which will help with our rent jump until Bevin’s Tea becomes wildly successful. And once we get the motor fixed, we will have a hot tub! Healing Oasis!! Thank you to everyone who sent us good vibes, woo, and prayers that we would find a great place!

I’m Throwing Myself into Spiritual Work and Grieving

Clinging to anything leads to suffering. I know that intellectually but I struggle with that a lot in grieving. I’m definitely still mourning my Grandmother big time but without a lot of capacity to do so because of the new aerobics class, house chaos and the moving. I’m also grieving all the stuff I wanted to do in our current house to bring it to fruition that I don’t get to finish.

I have been struggling to stay in faith these past two months about finding a place that works for us, and trust that something better was coming along. Many thanks to Alex, my fabulous psychic, for the pep talk that there was something better.

A quick trip to Sacramento last week while Dara attended a conference was just what I needed. My bestie and soul sister Spunky just moved to a fabulous new apartment in Sacramento. We toasted to NOT SETTLING and trusting the Universe to always deliver bigger and better with change.

Energy healing, going to an astrologer, card reader or psychic, or attending a class like a sound bath meditation, yoga or any of the Heal classes at EVERYBODY is a combination of therapy and spiritual practice. I have been throwing myself into all of these things because I know they help and will help me keep my energy moving. Grieving is part of life, and as someone with a lot of losses I want to do my best to process it and still really LIVE. It’s hard to live when you’re stuck in grief and sadness. This blog is a chronicle of my relentless pursuit of joy and I believe you can have joy no matter what, but that you gotta look at and acknowledge your darkness and sadness in order for it to pass.

When I know I’m not processing my grief enough it is really helpful to throw myself into healing modalities. It’s a thing you can do helps to turn on a spigot and let all the feelings out. About a month after Grandmother POTSA, I realized I was constantly in classes and environments where people were guiding me in taking deep breaths.

I’ve been enjoying Jasmine Danielle’s classes at EVERYBODY. They are strengthening, Barre, and yoga infused and so great. A three pound weight packs a bigger punch than you think!

If you feel so moved, take a deep breath right now. Breathe in for four, hold for four, breathe out for four, four times. This Four by Four breath I learned from Tara Magalski, is a real savior in centering.

The next big spiritual work I am going to do is to let strangers pack my house. I will leave my current house with Macy and Biscuit Reynolds on Sunday, let Dara supervise the packers we are paying to pack up our house, and come back with the pets on Monday to the new place. We both have had a lot of work taking up our time, we knew getting packers was essential to our being able to move quickly. Dara said I should just leave and let her handle it (she admitted later it was both a gift for my sanity and it will be easier for her without me around).

California is gorgeous right now. Due to all the rain this Winter the wildflowers (and bugs) are poppin! The hills look like they’re painted orange but these are just swaths of flowers. So beautiful.

I’m a controlling Capricorn and have serious issues with people moving my stuff around but I also know this will open up my capacity to write more and get more done. I can heal more folks and do more work in the world if I learn let other people do things that bring me stress. Plus, my friend Katy is in town and was just going to chill at her pet friendly hotel all day and invited me along. Yes please, Universe, I will accept this gift and learn these lessons while being a fat babe at the pool with Katy.

Bevin’s Tea is Still Brewing

I’m still hustling my tea business, though much of my business development was put on the shelf in October when Grandmother was diagnosed with lung cancer. Right now I’m kind of a low-key tea dealer, selling to my friends and folks through my blog. Soon I’ll launch on Etsy, once I have the photos done and new labels designed. I am thinking about investing in a fancy label printer and I’m also deepening my work as a healer so that the blends become even more powerful energy healing. I want to return to blogging the process of developing a product based business, because the more work I do with Marie Forleo’s B-School the more I realize how much I benefit from reading other people’s small business journeys.

Got to hang out with Jes Baker a couple weeks ago when she was in town for a speaking gig at a college!

So, beloved readers, get ready for the launch of Fat Sex Week XXL on Thursday! It’s going to be fatter and louder than ever before. For now catch up on the last Fat Sex Week!

2016-11-10

Four Strategies I’m Using to Move Forward in the Wake of the Election

Last night I was at Trader Joe’s and the cashier asked me how my day was going. I have a standing principal of authenticity and I don’t say “fine” unless it’s true. I try to give an honest answer. So I answered, “As a Gay American I’m really struggling in the wake of the calamitous election results.” He was not prepared for my answer and I watched him having a lot of Feelings as he rang up my groceries. I didn’t realize that my honest answer might be triggering to him, but sometimes I think cisgender White men need to be reminded of inconvenient truths.

And the inconvenient truth is, even as a Gay American, I’m a person with a lot of privilege, specifically White Privilege. I know the results are even more terrifying for people of color. I’m struggling in the unknowable future of a Drumpf* presidency. I don’t know what comes next for Muslim-Americans, undocumented people, people of color, gender non-conforming people, trans people, women, people of size, disabled people, any people dependent on Obamacare, and all of the other bodies of Americans that man metaphorically stood on top of or discarded while he used hatred to galvanize support.

I am remembering the legacy of resistance I come from. Before every event and performance I produce I do a circle prayer/offering of good intentions where I honor our queer ancestors. (If you’re curious what that looks like skip ahead to minute 9 of this video.) I don’t take for granted my ability to be a fat queer flamboyant femme, I know that just thirty years ago I wouldn’t have this access to express my authentic self. The ease I have being a weirdo in this world is because of the blood, sweat, and resistance of those people that came before.

It looks like it might get harder to be a weirdo for awhile. And at least I know that we have communities and we can create some really beautiful shit. And grass roots works a lot faster than government, the glacial pace of regression under Drumpf won’t be able to move as fast as we will. We can support each other and we can continue to make change.

amberhikesFrom my friend Amber Hikes: “I, for one, am not done fighting. There’s not one aspect of my identity (Black, Woman and Queer) that gives up and goes quietly into the night. We ain’t going out like that. Game on.”

I’ve been working with the spiritual principal “Pain is inevitable but suffering is optional,” and thinking through the ways I allow suffering into my life. I know that the pain from this election is real but I do not want to suffer. However, it’s super important to acknowledge our Feelings and process them, otherwise we end up just feeling them later—and paying interest.

Here are some strategies I’m using now to cope with all of the anger, grief, guilt, sadness, rage, and shock. I offer them to you as ideas. Take what you like and leave the rest.

Belief in my friends who are changing the world.
Giving me the most hope right now are my friends. When I start to spiral out into the what-ifs and the horror of 50 million people voting for someone who stands for so much hate, I can picture a friend and think about the ways they work to change the world.

I have surrounded myself with people who have big hearts and are bad asses, who see problems and dive in. These are people who work at non-profits or people who have corporate jobs and big volunteer lives. Who are artists who use their art to amplify anti-racism, experiences of marginalized people, who change people’s hearts and minds through self-expression. People with financial privilege that have a strong ethic of giving back and empowering people who don’t have the same privileges.

Especially people who are just everyday folks who speak up at the work lunch table or wherever to interrupt food shaming, racism, or “locker-room talk.” Frankly, I think that’s the most effective form of activism, one to one relationship-based conversations that help people have more compassion.**

It’s horrific to think about all the people who voted for hate (even if they couched it in different reasoning to make themselves feel better, a vote for Drumpf was a vote for White supremacy), but I believe so strongly in the people I know doing good it helps me have the faith to move forward.

halanbevincoffeeshopMy friend H. Alan Scott writes, “The Talmud says, ‘When the castle goes to ruin, castle is still its name; when the dunghill rises, still it is a dunghill.’ Drumpf is temporary, but if we focus, as a community, we’ll make the castle rise again.”

Have Faith Not Fear.
Earlier this year two people I knew had second bouts with cancer. This flipped me out because my partner is a cancer survivor. I started thinking about strategies to move forward without being afraid she’ll get cancer again. I could be worried and fearful 100% of the time if I let myself go into that thought spiral. I had the aha moment that I needed to remember to replace that fear with faith.

I have so much fear about the future of our country but I am choosing instead to have faith. Not faith in outcomes but faith moreso that we are going to work. I hope that people are galvanized enough to keep doing the work, keep having the uncomfortable conversations with people, keep standing in support. (Hey White folks who want to be in solidarity, here’s a great article about how to have those uncomfortable conversations with other White people. Here’s a great cartoon about how to interrupt Islamophobia.)

Remembering times we had a dip in social progress and we came back.
When Prop 8 passed in CA and it outlawed gay marriage, everyone was so mad! There were protests in solidarity all over the country! But the thing I couldn’t forget in that time (2008) was that when I was in college there was a similar referendum on the ballot (Prop 22 in March of 2000) that passed with a 10% greater margin. I was sad that gay marriage was still outlawed in CA but at the same time also impressed at how much the margin had changed. Prop 8 passed by only a sliver.

I genuinely believe social progress is the way forward and that our social justice work is working. I think the Drumpf election is a setback and a wake-up call to apathy and White complacency. If you feel you didn’t do enough work on this election, you can pick it up now and start working on ways to shift the world. (10 Simple Ways White People Can Step Up to Fight Everyday Racism.)

I remember when Bush won the election in 2000. I was 21 and we thought we should all move to Canada. I don’t think that anymore, I am going to stay here and fight because I believe we can continue to move social progress forward. I’m going to tap my mentor activists for their experiences of hope and how they moved forward during the GWB years. This is worse, but we have so much we can build on.

I also believe that the amount of talk about rape culture going on in the election has helped shift the conversation, emboldened women and is teaching more consent on a wide scale. A silver lining from this traumatic election cycle.

daniellemannafromheavenMy friend Danielle Berrin is a Senior Editor at the Jewish Journal, pictured here delivering “Manna from Heaven” after blessing the Challah at my Epic High Holiday Shabbat dinner. Because of the talk of Drumpf’s sexual assaults, she chose to come out in her newspaper about having been sexually assaulted during an interview with a prominent journalist. She put herself at personal and professional risk to do so, since women are so often lambasted for talking about sexual assault experiences. Her story has had an a-typical result, with the assailant outing himself and ultimately resigning from prominent positions. I was surprised and grateful that Danielle has received so much support. This is a new era where sexual assault survivors are becoming more and more supported. The more of us who speak out against rape culture and sexual assault the faster we will change things so entitled men like Drumpf don’t just get to grab whoever they want whenever they want. Photo by Rick Sorkin.

Channeling rage
Rage and anger are totally valid emotions. So is a feeling of powerlessness. The first step to processing pain is validating your feelings. Protests are a great way to channel anger, so are art projects, cooking, and exercise. Figure out what you need to do to identify the feelings you’re feeling in the wake of the election and figure out a way to channel them so that you can refresh yourself for the work ahead.

Self Care
Whenever I go through loss or get hard news my first stop is self care. After Grandmother’s recent lung cancer diagnosis I committed to a daily meditation practice and I’m proud to say I’ve been consistent for 25 days and that’s my longest daily meditation stretch so far.

In a world and culture that doesn’t value my body, my gender or my sexuality I know I have to value it the most. Self care is an act of resistance and it is really important that we prioritize this.

I encourage you to do a self care inventory. How are you caring for yourself? What ways can you adjust your life to make room for the things that increase your capacity to care for yourself? Self care stretches time and enables your fuel for the revolution. Make self care dates with friends and check in with each other about following through with self care.

Right now I’m in a “detox from America” and am doing all I can to cleanse my mind from this stuff and support my resilience.

Kate Bornstein says this about suicide—do whatever you need to do to stay alive, just don’t be mean. Figure out what you need to do and do it, because we need you to stay alive.

magalybevinatweddingFrom my friend Magaly Ickes-Jones: “My first generation Cuban/Nicaraguan-American, gender non-conforming, queer, Latinx, veteran, political scientist lover of the U.S. Constitution heart is bruised and battered by the unamerican hatred, ignorance, and fear that fueled American voters yesterday. I’ll heal and it will get better. I appreciate the comfort of my loved ones and these words and the promise that can’t be taken back: ‘We the people of the United States, in order to form a more perfect union, establish justice, insure domestic tranquility, provide for the common defense, promote the general welfare, and secure the blessings of liberty to ourselves and our posterity, do ordain and establish this Constitution for the United States of America.’ -Preamble to the U.S Constitution”

I am going to do what I know to do and look for support from my loved ones as we hold each other up. I’m going to stick to my faith. I believe we are going to work together stronger. We’re going to be okay. It’s what I have to tell myself every time a new cancer diagnosis comes into my life, every time I mourn a friend, every time I try something and fail. I remind myself that everything is okay in the end, and if it’s not okay it’s not the end. It’s not the end.

*I installed that app from the amazing John Oliver video “Make Donald Drumpf again” and so now all I ever read is Drumpf online and it makes me feel good. Thought with 30 million views it sadly still didn’t change the election results.

**I like the idea of spreading kindness rather than calling it “political correctness.” My work in the world is to support activist resilience and I want to help people do this work more effectively. If you have questions about how to do that, hit me up and I will work to get it answered.

2016-10-21

You are Stronger Than You Think: Grief, Resilience and Capricorn Resistance

Last week I was shaving my newly adopted cat’s legs in an effort to mitigate his pee smell from peeing on his legs. “Shaving Day” was not a success and continues to be the official low point in our three week relationship. Lucky for me, it was a very consumptive process because I missed the texts from my mother when Grandmother went missing.

biscuitreynoldsHe’s so cute but the pee smell is so gross.

After I released Biscuit Reynolds to his 18 hours of post-shave sulking, I checked my phone. Mom’s series of texts were heart-wrenching, but I was already relieved to have read the most recent one. “I called Eisenhower and talked to Grandmother. She was in the hospital getting tests. She’s being released right now.” The first texts talked of asking me to join the hunt looking for Grandmother. She lives independently and doesn’t love her cell phone so we have to catch her at home in order to reach her. Mom hadn’t reached her in too long and got worried. On a whim she called Grandmother’s favorite hospital and asked for her room—and got her!

bevingrandmothermay2015Me and Grandmother in May 2015 on a visit from NYC. Being closer to her geographically was a big reason I wanted to move to LA.

I’ve been kind of wrapped up in my grief around Amanda’s suicide, so I was glad for a happy and swift resolution. Then I recounted the story to my partner Dara and started weeping. A coping strategy I have from my traumatic childhood is to be able to stay separate from my Feelings during crisis. I’m a complete rock star in crisis, I can solve shit, I can organize, I can motivate—I know how to stay safe and I know how to keep other people safe. This is a great skill but not great for emotional health and the Feelings always come. The weeping while I was telling Dara gave me the warning bell that I wasn’t done having these Feelings about Grandmother going missing.

Later that day I walked into Target and then started melting down. Have you ever sobbed at Target? It’s not cute. Part of what has been hardest for me with Amanda isn’t just the loss of her, it’s how much I identify with her and it’s scary. If the world was too hard for Amanda, will it be too hard for me? This thought often propels me to make the phone call even though I feel awkward talking about my Feelings in Target. I know I need to not isolate and I need to ask for help. So I called Bridget (she’s been so amazing this past month).

grandmotherbevinshermansMe and Grandmother at Sherman’s on Friday. When I asked the waitress for Shabbat candles for the table she was very confused.

I got through everything and then talked to Grandmother. Her test was a biopsy on a mass on her lung. She had gone to urgent care because she was coughing up blood and then they sent her right to the ER who admitted her to find the mass, do the biopsy. Grandmother didn’t call us because she doesn’t get a cell signal at the hospital and “didn’t know anyone’s numbers by heart.”

The fact that Grandmother might have cancer was a lot for me to take. Dara just celebrated two years out of cancer treatment in August. I, unfortunately, know a lot about cancer from supporting her through it. In spite of looming work deadlines, Dara offered to come with me to Grandmother’s the next morning to keep her company while she got the biopsy results from the doctor.

cancersurvivorpark1In May 2015 we did this photo shoot at the Cancer Survivor’s Park in Rancho Mirage, CA. We had NO idea Grandmother would have cancer–that’s the one thing that doesn’t really run in our family.

That night I was snuggling with Dara in “the nook.” My thoughts started floating to the grief places and I was crying. I realized I was soaking her shirt with my silent tears and I rolled over to my side. I felt like I was getting away with something. When you’re grieving sometimes you think your sadness, hurt, confusion, anger, depression is too much for your loved ones. Because often, it’s too much for you. Normally I spit in the face of anything that says I’m “too much” but I’m an independent Capricorn and sometimes I like to seem more together than I really am. Crying silently on my side of the bed felt like I could be more of a mess than Dara thought.

I instantly related to Grandmother. Like me and Dolly Parton, Grandmother is a Capricorn. So is my Great Grandmother and my Great Great Grandmother. An epic line of Capricorn women who in each past generation with deepened misogyny had to seem together and not lose it in front of anyone about grief and abuse and alcoholism and who knows what other trauma legacies are in there. Capricorns are the goat climbing the mountain. Persistent, ambitious, success-driven, not showing weakness. The cardinal Earth sign. The Keep It Together and Look Good Doing It sign.

I understood Grandmother’s reticence to ask for help when she got swept away to the hospital, to sit in a bed by herself and not call her kids or grandchildren. Just to do it on her own and not bother anyone. Getting away with not seeming like a mess or like she needed anything.

cancersurvivor2

I felt glad to relate to her and understand her motivation to isolate. I understand it with love and not judgment. I was also glad to be forcing myself on her to support her through the diagnosis the next day. I was sure she didn’t need someone to be there. She is always so happy and grateful when I come to visit I knew it wasn’t an imposition.

Dara caught on to me crying eventually and got me tissues and was her rock star supportive self. She drove two hours with me into the desert to Grandmother’s house in Rancho Mirage. She sat at the table with me and Grandmother googling the diagnosis, a mass on her lung but possibly a type of adrenal cancer or maybe lung cancer I still don’t know. She showed Grandmother her chemo karaoke video from her cancer vlog “Cancer Can Be Cool” and talked Grandmother through her experience with cancer treatment and how Dara insisted on positivity from everyone in her life.

daragrandmotherchemokaraokeDara worked so hard on that Chemo Karaoke video–she filmed it on her birthday during a chemo infusion at the Memorial Sloan Kettering chemo center where she got her treatment.

My idea was to go out to Sherman’s, our family’s favorite restaurant, a Jewish deli. (Better than most places I’ve been to in NYC—there I said it.) I wanted us to have a celebration for Grandmother’s cancer survival and success. I believe in the power of positive thinking more so than just about anything in my faith arsenal. If you’re going to go for a positive attitude might as well celebrate and have fun.

celebrationfood

We’re in the day by day diagnosis phase right now, where we wait for the next test result, next doctor referral. It’s maddening to a Capricorn like me who wants to plan and know what’s happening. But that’s not how the world works and I have to keep using lots of tools to be cool with it. I’m on my second listen to the just-released audio book The Universe Has Your Back by Gabby Bernstein and it’s got a lot of tools for working with the flow of the Universe, womanifestating and for finding serenity.

I told Grandmother that part of my vision for being a rich lesbian is having a big ol’ compound where she would be able to live in her own space in our house, hold court with my friends (who all love her or will love her, she’s so charming) and she won’t have to deal with telling the gardeners they are not doing a good job she can just tell my house manager. But since I’m not yet a rich lesbian I need her to hold on a lot longer. We gotta beat this.

cancersurvivorpark2The Cancer Survivor Park in Rancho Mirage is really great. Worth a visit if you are in Palm Springs.

There’s a lot to worry about, both me and her. She’s older than she looks and that means she gets a lot of ageism when people look at her chart instead of her whole picture of human health. I can certainly relate to doctors looking at weight and not the whole picture of human health. She is always concerned that she won’t get to live independently anymore. I want to be able to be there a lot for her treatment but we just adopted this cat and he stressed out with us gone for one night that he started pooping blood. I just recommitted myself to finishing the memoir I shelved during Dara’s cancer treatment.

I get that worry is a misuse of imagination. I’d rather focus on how fun it will be to make art projects and adventures out of her cancer treatment. We almost convinced her to sing a Dolly song for an instagram video to help me promote Dollypalooza LA on October 29th! She’s got cute stories about being almost famous early in her life, about being constantly mistaken for a celebrity while living in Beverly Hills and now I think everyone thinks of her as an older celebrity while she’s tooling around Palm Springs. We are hopeful she’ll consent to being part of Dara’s cancer vlog. Grandmother is basically a gay icon waiting to happen.

daragrandmotherwalkingHeart emoji. Literally every time I write a gratitude list Dara is at the top.

Before Amanda died, the phrase “You are stronger than you think” kept popping into my head. I didn’t realize it then but that was the Universe telling me I am ready and resilient, even as I don’t really feel either just yet.

cancersurvivorpark3

2016-01-02

Remembering Ellie

Cancer has claimed another amazing queer pal of mine at a young age.

Ellie Conant was a kind, magical creator of community space. Her parties (Choice Cunts, among others) were legendary in the NYC queer scene when I moved to town and I was honored to join her as a party creator. She was exciting to party with and really fun to be around. She was the kind of person who showed up and instantly made you feel like a friend. And even though maybe you never ended up grabbing that coffee together because. NYC. Busy. We saw each other in crowded bars, clubs, community events and always shared squeezes and managed to have a five minute meaningful conversation.

elliebyleslievanstrattenPhoto of Ellie by Leslie Van Stelten, from this GO Magazine article about her that I loved.

I remember once we talked about how we really needed to help one another as queer party promoters and plug one another’s parties. She wanted to do a THING and get us all together and it was a brilliant idea that kind of remained in the club because we got busy.

I remember when she was ending Choice Cunts and we talked about life cycles and how much we give of ourselves as party promoters. I don’t think that people who aren’t queer cultural producers understand how much work goes into creating things. It’s not about the money for most of us. (When I was doing Rebel Cupcake I was lucky if I made $100 and once lost $400.) Queer cultural producers have an idea of how we as a community can have fun together and want to help direct that fun, bring people together and create new opportunities. It’s a joy to help people find joy.

She had a real way of acknowledging that being a party promoter was way more work than we were paid for, and I’ve worked to emulate that to other cultural producers. It was a way in which she honored the work of party creation that I really appreciated and I learned from her how to value it.

Ellie did what so many people aspire to–she changed and improved New York City.

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Ellie embodied that generosity of spirit and fun shepherding. She had a gregariousness I admired and a fantastic sense of style.

She will be missed and she was spectacular. All of the loss I’ve experienced in my short life has reminded me to live life to the fullest and savor every adventure. It’s also reminded me that taking care of myself so that I can enjoy the adventures is important, too.

Ellie posted this really great quote to her Facebook wall last week.

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While rooting through my photo archives for that selfie I know I took with Ellie at a random party that I can’t find, I found so many photos of my queer departed friends. Especially of Taueret, whose suicide in March I’ve still not fully processed.

taueretatpurim2012Taueret, at a Purim Party in 2011.

I like to say this thing Glenn Marla once told me, which is “We’re all going to be gay for a real long time.” It’s a nice thing to remember when you feel like you’re not going to bang that person because they’re monogamous or the timing’s not right. But it’s cold comfort when someone passes away and you know you’re not going to have the joy of running into them again in this life.

In these moments, I feel really grateful for opening up to spirituality. It helps me out emotionally to feel that the afterlife is something awesome beyond our wildest imaginations. That our departed friends and family move into a new way of interacting with us. Dara made up an acronym when she was diagnosed with cancer called POTSA (Passing On To Something Awesome) that she insisted me and those close to us use when we talked about death.

Given how generous and friendly Ellie was in life, I have no doubt that in POTSA she is out there conspiring to create magical good times for every person she touched. The effects of her influence in human form are beyond what we can possibly know.

I really hope that her transition is peaceful and brings her excitement. I’m sending prayers for her family, her partner Melissa, and all who knew and loved her and are feeling this tremendous loss.

2015-07-08

How Getting Neutral About Food Helped Dara Drop Sugar

When I posted my thoughts about being a good ally to fat folks by getting neutral about food, Dara and I have had a lot of conversations about it, including a pretty startling revelation that I wasn’t aware of. It turns out that Dara, working to get neutral about her food self-talk in order to be a better ally to me as a fat person, was able to transition to a low-sugar anti-cancer lifestyle a lot easier with food neutrality than if she had kept up agonizing about food being “bad” or “good.” Her words on this are below.

bevindarapridePhoto by Tinker Coalescing.

What Dara says is in alignment with what Health Coach Isabel Foxen Duke says about the diet-binge cycle. Hating your body creates the desire to emotionally eat which is a feedback loop that causes more body hatred. When you get neutral about your food it helps you detach from emotional eating as well.

Some background of Dara’s choice to go for a low-sugar anti-cancer diet. We believe pretty strongly that her breast cancer was the result of high stress. Prior to doing the Anti-Candida Murder plan I read the book The Candida Cure, which talks about how when your body is stressed out, your blood sugar spikes–just as though you ate a donut. Lots of studies show lots of things about preventing cancer reoccurrence but for sure creating a less stressful lifestyle comes up a lot. Lots of studies talk about how cancer feeds off sugar. So, we believe stress becomes sugar and sugar feeds cancer. (Dara did a video blog about this theory when she announced she was stepping back from the global initiative she started and self-funded.)

The eating plan she follows is based on Kris Carr’s Crazy Sexy Cancer diet, if you’re interested in reading more. Lots of green veggies, plant-based whole foods, a little bit of meat (that’s not in the Kris Carr plan, but you do what you do), whole grains, yadda yadda yadda.

Anyway, here are Dara’s words about getting to food neutrality.

IMG957531Dara doing paddleboard yoga during our trip to Key West.

When Bevin first asked me to stop talking outloud about my uphill battle with cutting sugar from my diet (a step that research suggests prevents cancer recurrence), I had mixed reactions. I mean, cancer is a whole different thing than body positivity, right? Surely, the same rules of food neutrality don’t apply to me?

Because I love my partner deeply, and so respect the work she does in the world to help everyone love and value their bodies, I decided to give it a try. (I mean, I could always use the Cancer Card to say, “Baby, this just isn’t working for me” and know I would get a free pass.) Instead, I decided to give it a shot… and in doing so, I had a surprising and powerful realization: IT ACTUALLY GOT EASIER TO SAY NO TO SUGAR!

I don’t know how it happened to be honest, but I think it got easier to say no to sweets because instead of badgering myself (outloud often) about whether or not I should eat something, and what it would mean about me, and my lack of discipline, or my willingness to commit to staying alive… instead of having this agonizing back and forth, I instead just said a simple ‘no thank you.’ And that was that.

What would normally take up at least 10 minutes of space in my brain, and cause unknown quantities of anxiety and self-flagellation pretty much just went POOF! Gone. Buh-Bye!

It made me realize just how much my anxiety about what I was eating was wrapped up in my head. How much of a victim I was to my own insecurities and doubts. Making the decision to be neutral about food put me back in control, and enabled my rational brain to take the lead, while my negative internal chatter was forced to sit quietly in the back of the room.

Now, I’m not saying it’s easy to turn down cookie-cake or a jelly-filled donut when offered – and I’m not even saying that I do turn it down all the time. But I will say that it no longer consumes my thinking like it once did. And I no longer feel guilt or shame about my decisions. I feel stronger, more in control… and (as a result of the fact that I now eat less sugar) can say that I have a better chance of living the rest of my life cancer-free.

IMG_7020At the Dyke March in 2014, just about a month after her last chemo treatment.

I am grateful to Bevin for helping me better understand the idea of body currency and food neutrality. As a fat ally, I have for sure sought to prioritize ways of being that enable all bodies to been loved exactly as they are. But this side benefit of being able to apply the concepts to my own health, to be able to live a longer, happier life? That one I didn’t see coming.

It’s true what Dara said, if she needed to keep externally processing about food to support her anti-cancer goals we would have come up with another solution, another way to talk about food that isn’t laden with shame and guilt. We work together to mutually support our goals. I’m really grateful that I had a way in which I needed her to work as a thin ally to me and it ended up enhancing her goals!

You can read more about Dara’s cancer journey on her cancer Tumblr page as well as read my posts about going through chemo and her diagnosis process.

2015-01-30

Lung Leavin’ Day: A Really Powerful Fear Releasing Ritual

When Heather Von St. James was diagnosed with mesothelioma, as a new mom, she was full of fear. In her own words:

I was only given 15 months to live, and had to undergo a life changing procedure. On February 2nd I had my lung removed, which my sister declared LungLeavin’ Day. We celebrate it every year by writing our biggest fears on a plate, and smashing them into a fire. LungLeavin’ Day grows bigger every year.

An interactive page has been created to tell Heather’s story. You can smash a virtual plate and do a little ritual right at your computer! It’s a very cute site.

LLD_plateHeather, doing the Lung Leavin’ ritual. Photo courtesy Heather Von St. James.

I know first hand how powerful it is to have a project to pour your fears and intention into in the wake of life altering change… When my ex fiance left me seven years ago I started my podcast, which gave me a positive thing to focus on rather than my resting thoughts which were all about fear and not knowing how to live a life different than the one I had planned out. That podcast lead to starting this blog and reorienting my career towards helping shift people’s feelings about their bodies and loving themselves. It transformed me.

When my partner Dara was going through chemo for breast cancer, her chemo karaoke video production and her cancer vlog were incredible for her to orient herself towards looking for the positive. It also gave her something to focus on in the meanwhile to get to the next moment.

20140508_183224Dara, behind the scenes of Chemo Karaoke. She bought that cape at the Brooklyn Superhero Store.

One of the most powerful things you can do with your fears is to name them and let them go. Tapping is helpful, as are rituals. Most of the time our fear and pain just want to be acknowledged. I’m fond of the idea that emotions are energy in motion–no emotions are “bad” or “good” they just are. Letting them flow through rather than stay bottled up is the path of lease resistance to getting towards other emotions that are better. Like hope. And empowerment.

Heather’s Lung Leavin’ Day movement is really wonderful. I love the idea of using this ritual, even if you’re not dealing with cancer.

LLDPhoto courtesy Heather Von St. James.

Living in our culture is a petri dish of fear and worry. It takes a lot of work to focus on the positive and let go of the anxieties that hold us back. Lung Leavin’ Day is a great way to do just that. If you have access to a firepit, go to the thrift store, get some plates and smash those fears away with yourself or your pals! Even if you can’t do it now, maybe set a date in the future for this ritual. Fire is great spiritual energy for leaving things behind!

One of the things you can to do be supportive of folks with cancer is let them take the lead. I wouldn’t push a positive spin on cancer on anyone, people need to have their own process. But if someone you know is doing that positive spin, do whatever you can to show up for them. It was so moving to Dara to have thirty of her friends in a room chanting “Dara” and lifting her up during her fourteenth week of chemo.

20140508_185422Dara’s friends patiently waiting in the event room at the chemo infusion center for the big last scene of the video.

Heather is now a 9 year cancer survivor. Her Lung Leavin’ Day concept and website are wonderful ways to share an important movement.

Cam_Lil_HVSJ FamilyHeather and her family. Photo courtesy Heather Von St. James.

Here’s more info on mesothelioma and the treatment.

2015-01-22

That Time Dara and I Met Abbi and Ilana from Broad City and the New Yorker Wrote About It

When Dara was going through chemo last Winter and Spring, sometimes all she could do was watch TV. TV was great because it gave her something to focus on other than the constant state of nausea she was in or how uncomfortable or painful her body felt.

IMG_7020Me and Dara, about a month out of chemo at the Dyke March. She let me paint “Fuck Cancer” on her still bald from chemo head. Because all of my friends know how much I love Broad City I periodically get texts from late adopters telling me I was right about how great it is. I try to live a spiritual existence where being right doesn’t matter to me but I do enjoy being right about cool cultural things that are awesome.

It was really important to Dara from the very beginning of her cancer diagnosis to keep it positive, so she was super interested in finding shows that were up lifting. It was also hard with “chemo brain” to watch anything complicated. She burned through Parks and Rec—so much so that I ended up missing a few episodes of the last season because I couldn’t keep up with her. She was a little stressed knowing Parks and Rec was nearing the final episode available and a friend of hers, Lalta, suggested she turn to Broad City, a new show on Comedy Central executive produced by Amy Poehler, the star of Parks and Rec.

We started watching Broad City right away and absolutely loved it. We have since watched each episode multiple times, and scoured you tube for episodes of their Broad City web series, the pre-curser to the more polished and lengthy Comedy Central show. As a cancer caregiver the belly laughs afforded by the antics of these women were really helpful medicine for my spirit, too, and Dara absolutely loved it.

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Abbi and Ilana are so charming and hilarious. I think it does what 2 Broke Girls and Girls tried to do with the early twenties women living in Brooklyn situation but with an authenticity and reflection that the others miss. It’s goofy, adventurous and New York is an important part of the show, including the street harassment, subway weirdness and other hassles of trying to live day to day here. I appreciate that sometimes Ilana’s character takes on being politically correct but to an extreme where she maybe doesn’t get it. Dara calls the show a modern-day Cheech and Chong for women.

I especially love Lincoln, played by Hannibal Buress, who you might remember from blasting Cosby for the rape rumors and Cosby’s trash talking of the Black community back in October, igniting the recent round of scandal. (If you haven’t watched Hannibal’s original comedy act in Philly about that, do.)

By the point in chemo where we stepped deep into the Broad City hole, Dara was bald bald. Combined with the perpetually youthful aesthetic so common among masculine of center queers she looked even younger, moving towards an 8 year old make a wish kid aesthetic.

20140603_173316I want to say that Dara’s diagnosis was not terminal like an actual Make a Wish kid. We knew that. But she does look kind of like an 8 year old.

It was coming up on her 39th birthday, for which she was in the thick of planning her “Chemo Karaoke” video where she wrote a parody of Pat Benetar’s “Hit Me With Your Best Shot” and got a ton of friends together to shoot it in the chemo infusion center at Memorial Sloan Kettering Cancer Center. This was a huge project for her and it was great for her spirits, giving her something to focus on and made chemo kind of a project or a game rather than the really physically, emotionally and mentally devastating ongoing medical procedure that it actually is.

One night after our second round of watching Broad City, I said, “What if you made a Make a Wish video and asked Abbi and Ilana to write you into their show?” Dara immediately countered with, “I should get them to come be in my Chemo Karaoke video shoot!”

So we did it. Why not? It was a low-stakes, really fun way to spend an evening, making the video. And even if Abbi and Ilana couldn’t come to the video shoot, at least it was a way to say thank you for producing art that was really delighting us during a time that was pretty shitty. Obviously their art production is at a totally different level and reach than mine, but it always feels really awesome when people tell me that the things I’ve written, workshops or performances I’ve given made a difference in their lives. It’s never a bad time to make someone feel good about themselves, as my bestie Rachael likes to say.

20140507_230933 (1)They make Broad City toilet paper.

We had no idea how to get it to Abbi and Ilana. I tweeted at the Broad City account knowing it might not go anywhere. Then I thought, maybe through six degrees of separation we could do it, so I posted it on my Facebook wall. Turns out I know someone who knows someone who dates an executive at Comedy Central and that I know someone who went to high school with Ilana. Boom. Within 24 hours we had an email from their manager.

Abby and Ilana were busy writing the second season of their amazing show and couldn’t come to the shoot. But they did invite us to be their guests at their show the night before Dara’s birthday party. We were excited, in all our internetting we never realized they were still doing their live improv show at the Upright Citizen’s Brigade.

14299828758_e9fc7bab10_zWe got four tickets, so Dara’s friend Allison (second from left) who flew in from Atlanta for the video shoot came with us and our awesome friend Donna (far left) came along as well.

When we got there we had a huge surprise. First of all, they saved us seats in the front row. Then after they came out and performed their first act (a very full energy improvised dance to Drake’s “Started From the Bottom”), they did this whole long intro about a special guest joining them, and it turned out to be Dara! Ilana’s brother Eliot Glazer brought out a cake and sang Happy Birthday and Abby and Ilana gave her a bunch of Broad City schwag.

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Ever relentlessly documenting my life, I videotaped it.

The whole thing was surreal and it was so wonderful to see Dara so happy, when during chemo the state of just not being incredibly uncomfortable/in pain/nauseous/whatever is a victory.

The show was great and we watched them play Fuck, Marry, Kill with Natasha Lyonne. Afterwards we were out on the street and ran into an old friend of ours and were chatting for awhile and realized Abbi and Ilana were coming out of the theater. Dara decided to go up to them and thank them for everything. It was really sweet and a nice connection. They filmed a chorus of Hit Me With Your Best Shot with the gusto of seasoned improv comedians.

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Improving Hit Me With Your Best Shot with Abbi and Ilana:

It was all so thoughtful and fun and really awesome of them to do that for Dara. The next day during the epic shoot for Chemo Karaoke, it was a great story to tell. And the cake was delicious! Billy’s bakery is the shit, I worked around the corner from them for a few months and fell in love with the banana cake. Trust me. Trust Ilana and Abbi. It’s the best one.

While Dara was talking to Abbi and Ilana, a reporter from the New Yorker sidled up to me and asked my name and Dara’s name because he was trailing them to do an epic piece about Broad City. I had to go through this whole fact checking thing after the fact with someone from the New Yorker*.

IMG_20140618_180212They didn’t send me a copy of the magazine, which I think would just be polite, if you’re going to spend time doing ten minutes of fact checking.

Broad City is shooting to the moon right now! Season 2 just premiered and it’s hilarious. Abbi and Ilana interviewed Sleater-Kinney for NPR (I could not figure out how to get into that event). You can catch all of the first season of Broad City on Hulu, and I think for a limited time on Comedy Central’s app and website without plugging in a television provider. You need a tv cable provider log-in to watch Season 2. And it’s worth it!

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Here’s the finished produce of Dara’s Chemo Karaoke video:

*P.S. If you’re reporting something and someone’s name doesn’t sound “real” to you, don’t euphemize it by saying “[H]er girlfriend, who goes by the name Bevin Branlandingham.” Everyone is entitled to use whatever name they want, even if it sounds made up. No need to add the “goes by the name” because it is condescending and unnecessary and will result in many texts and tweets from uppity queers about lack of respect for chosen names. Like why couldn’t he just say, “Her girlfriend, Bevin Branlandingham…” Just saying.

2014-09-16

Post Cancer Treatment Life in a Nutshell

It’s been awhile since I posted substantively and when I get to this point I get into these quagmires, “But there’s no context for me on my blog anymore!” I like this space to be an ongoing narrative of who I am and what I’m doing at the intersections of these identities of queer, fat and femme. So to kick off more posts about what I’m excited about, here’s a newsy update.

IMG_20140816_203125Dara and I had a great “progressive dinner” date where we went to three different restaurants for different courses. This was for the vegan ice cream course at Van Leeuwan in Brooklyn.

Post Cancer Treatment

Dara is doing well post-cancer treatment. She is really loving life, she has a zest that is similar to her love of life pre-treatment, except her zest is more gentle and self-loving now. She has a way of really being present and relaxing into the idea that a day doing nothing is the perfect way to keep from working too much.

IMG_20140822_220118Me and Dara at a rooftop party a couple of weeks ago. I love when you get to tower over a sea of blingie skyscrapers.

We have so much fun together. We had fun during cancer, she often tells me I “made cancer fun.” My opinion throughout was why should cancer treatment not be a series of tumblr post worthy, good photo opportunity adventures? So that’s what it kind of was. But even as we made the best of things, it was still with a bit of a pall covering everything. Without most of that damper we’re having even more fun now. Everything feels a bit more joyful, with the gratitude of not being in cancer treatment.

We’re doing tons of new stuff. We went to a park neither of us had been to at the foot of the George Washington Bridge on the Hudson River to take a tennis lesson. I haven’t played tennis as an adult and I never took to it in high school; I don’t mean to brag but I lettered in badminton. I was all set on racket sports and didn’t need that clunky tennis racket to cloud my badminton focus!

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But tennis as an adult! It’s pretty fun and quite a workout. I’m sold! Dara and I went to another tennis lesson in a different park and it wasn’t nearly as fun, so now we’re on the hunt for the perfect city tennis situation.

She has her zest back but not quite her endurance… she injured her knee and two other body parts within a week. She has insomnia from the Tamoxifin, a hormone blocker that she has to take forever. Or like 10 years. So that’s another ding for energy.

We are hoping to go apple picking and camping this month! And next month we’ll reprise our trip to Southern California we were supposed to take in June when her father passed away suddenly. It feels healing to schedule out the adventures we want to take and folks we want to visit. I feel really lucky we’re able to do that.

Lucky is a great way to describe how we feel post treatment—we saw the movie the Fault in Our Stars, about a teenage girl with terminal cancer. It really hit home how temporary love can be. And even though the length of love is sometimes short, it can still have important, life changing intensity.

I feel like Dara’s cancer treatment was a life changing intensity time for me… as it was for Dara. We’re excited to see what our relationship is like after cancer treatment. I think we’ll both be different after treatment. (This was also why I declined to move in with her after cancer treatment—I want us to just have fun together for awhile instead of adding another pile of stress to the end of what has been a really difficult year for me.)

Macy’s Recovery

20140821_175210Family selfie.

My beloved dog Macy had surgery for a ruptured disc in July and her recovery is ongoing. Her intense separation anxiety post-hospital has finally waned. Perhaps it was taking her to that first tennis lesson with all that noise and flying balls that convinced her that insisting on being with her people 24/7 wasn’t necessary, but she is finally able to be left at home alone again. For awhile I couldn’t even leave her in my bedroom for two minutes without her wailing. It was very intense.

Macy has to begin pricey physical therapy for her hind leg. She is walking on all of her legs, which is huge progress from the surgery, but she’s limping really hard, her body is shaped kind of like a comma when she walks, curved to the right. She can’t jump onto furniture and she can’t push open the doors in the house anymore like she used to, and she’s bearing 80% of her weight on the front legs which can lead to more problems down the road.

I hope that the physical therapy involves hydro therapy because it is very cute to watch in you tube videos. It’s also very successful at strengthening weakened legs so I’m hopeful for a full recovery.

IMG_20140816_214812The third stop on our progressive dinner date, short ribs poutine from Mile End. Macy in her “accessibility backpack” that enabled us to take her all over the place this summer when she couldn’t be left alone. She even went to an outdoor YoYo Ma concert with Dara in the Berkshires! I picked up the backpack on Amazon for $44 and think it’s a great value.

Macy’s only ten years old and she’s otherwise perfectly healthy. Her veterinary neurologist expects that she’ll live out her days (Shih Tzus live to be about 16). So here’s a pro-tip, if your friend’s dog has had major surgery, don’t say anything like “She’s had a great life!” It’s really different to have a pet diagnosed with a chronic illness or an injury than to get a terminal diagnosis! She has had a great life (she was photographed in Time Out New York and Curve Magazine before I ever was!) but she has a lot more life to live!

I am still visioning for Macy to make it into People Magazine and Southern Living Magazine, two of my favorites. Maybe even Oprah Mag. But mostly, I’m still visioning lots of fun adventures for my charming and magical Shih Tzu!

Plus Size Party Girl

Instead of producing monthly parties, I’m now focusing my energy on less frequent bigger productions. Though, in lieu of all of that, I took a hiatus while Dara was going through treatment.

I just finished producing Dollypalooza, an Epic Fan Tribute to Dolly Parton on 9/5 (get it?). It was the biggest production I’ve ever taken on single-handedly. (Way to come back to party planning with a bang!)

bevingroupsingdollypaloozabyJenaCumboDrae Campbell, Miss Mary Wanna, Me, World Famous *BOB* and MILK from RuPaul’s Drag Race Season 6. Photo by Jena Cumbo for the Village Voice.

It reminded me of the intensity of Picnic Day when I was in college. That was the UC Davis open house—all departments, student organizations, sports teams, etc… put on some kind of exhibit or event. There was a parade, six stages of entertainment, a student activities fair. Legendary events during my tenure on the Picnic Day Board were the dachshund races in the basketball stadium, cockroach races in the Entemology Department and the fistulated cow demonstration by the College of Agriculture. The fistulated cow was a cow who had a hole cut into her stomach so people could put on a glove and reach their hand into the cow’s stomach to retrieve partially digested grass–cows digest the same food several times. It was rightfully shut down by animal rights protestors in the late 90s.

Obviously, there’s a lot that goes into coordinating that kind of event, involving a board of 20 and 500+ volunteers. There was a frenzy that overtook me and the entire board of organizers of Picnic Day the week before the event. I remember super late nights in the Picnic Day office laminating photographs into security passes. Dollypalooza was the closest I’ve ever come as an adult to that feeling. I love planning and executing major events, especially unusual ones that bring people joy. The lights in folks’ eyes when I fliered for Dollypalooza let me know I was on to something.

IMG_20140906_153536Me and my hero World Famous *BOB*–as her performance she told an amazing story about meeting Dolly Parton and had everyone from the show on stage at the end to group sing Hard Candy Christmas.

We made almost $700 for the Imagination Library in the raffle, Dolly’s literacy charity that sends books every month to kids in need, and it was an unforgettable show. I am brimming with ideas for next year. But I definitely know I can’t take on anything like that single-handedly again. I’m super grateful for Dara’s help—she did some amazing PR work that got a videographer from ABC News to come by, and some interest from People Magazine. My friend Jess, who brought me to Dollywood for the first time, took over the raffle and made that part so easy for me. We also figured out how to do a contest to send the performer who brought the most people in the door to Dollywood and got a raffle donation from Dollywood Cabins! At the end of the show, I felt like Oprah telling people “You go to Dollywood! And YOU go to Dollywood!”

IMG_6337The gorgeous view from the Dollywood Cabin I stayed in last May.

Mental and Emotional Health

Seeing a counselor with the Lesbian Cancer Initiative was the best choice I made as a caregiver during treatment. She pointed out to me going into post-treatment that I would have an adjustment period, and so would Dara. It is a significant energy shift.

IMG_20140829_162150This isn’t for the LCI but it’s from Callen Lorde, my physical health provider.

I’m in the weird process of looking for a therapist for the first time in my adult life. I’ve got about 50 possibilities from friends and am whittling it down. I am intentionally being really public about this process because my mental and emotional health are really high priorities for me and I want to encourage folks to feel empowered about seeking help. While things feel like the “calm after the storm” right now, I also think that the amount of life traumas I’ve faced in the past 12 months is unusual and I’d like to sort through them with a professional. Last night I had a dream about a friend of mine who passed last November and I’m about to go to Atlanta for the first time since her funeral. Crisis mode means you just scoot from one trauma to the next without digesting time, and I want to make sure I can go back in and digest things. Kind of like a metaphorical fistulated cow demonstration.

So that’s me in a nutshell (I really wish I had a picture of me in a nutshell).

Oh, and the first stop on our progressive dinner date (all in outdoor venues that allowed us to have our special needs Shih Tzu) was crispy kale salad in the backyard of Battersby… It was a great date!

2014-07-16

Macy’s Surgery and the Power of Showing Up Imperfectly

The first time I visited my beloved Shih Tzu, Macy, after her ruptured disc surgery, I freaked out. I didn’t even realizing visiting in a vet hospital was a thing but once I found out I could do it I knew I’d be there every day. Macy’s there for me through thick and thin, I knew I needed to be there for her.

I couldn’t visit until the day after her surgery. When I went in, they put me in the same exam room we had seen the veterinary neurologist for her initial consultation, watching Macy painfully hobble around the room. Now I was in the room alone, waiting for Macy, who wasn’t even 18 hours post-op.

The vet tech brought her into the room cradled in a towel and set her in my lap. He left and I was staring at Macy. I didn’t expect her to look so crappy. There was the obvious stuff that I had never thought about, like the rectangle shaved over her spine with the frankenstein stitches woven across. But then there was the stuff I didn’t expect; the pleading, confused look in her eyes and the sour smell of a dog that has gone through it and bathing isn’t in the cards just yet.

IMG_20140708_161532Our first visit post-op.

I felt panic and shock as I held her. I began calculating in my mind how quickly I could leave. They said I could visit not that I had to. Would she even notice if I was gone? Did my being there matter?

This panic lasted for about a minute and I started to talk some sense into myself. I am the kind of person who believes we are more than just our bodies—our spirits matter. If I was in a coma I think I could still sense that people were in the room with me and that my loved ones would matter to me. I know that Macy’s consciousness isn’t developed in the same way as mine, but I also know that me showing up for her would matter in some way I couldn’t explain.

So I stayed. I sat with her, in a way we don’t usually do in our day to day lives. Quietly, lap sitting, togetherness. No TV, no work, no distractions. I cried a bunch, I told her it was going to be okay, and while doing so was half telling myself. I showed up for Macy.

20140713_190929I really appreciated everytime the hospital brought Macy in with a flamboyant blanket or towel because I felt like they really saw my gender.

I’m never really positive how Macy feels about me. She’s not a lap sitting dog, with the exception of butch laps. With me she prefers to be four feet away at all times—when I work she sits in her bed four feet to my right. When I cook she sits in the kitchen four feet away and watches me. When I’m in the living room she’s on the couch just out of arm’s reach. Sometimes I get a complex about how little she wants to snuggle me and how much she wants to snuggle Dara.

In the week after her surgery I visited Macy every single day. Some days we just sat together, some days we worked on physical therapy exercises her neurologist showed us. I got daily calls after her neurological exam. She stopped making physical progress for a few days (the vets expected this) but when I visited I could tell things shifted for her. One day she was much more “herself” again. Later she seemed to almost get excited about things, especially when I started bringing in high value snacks like chicken and sausage. I was glad I was visiting because I could tell from her spirit progress that was different than the surgeons.

20140709_143004 (1)This is Macy’s little walking tool–it’s a harness for her back legs to keep her moving and give her practice using her back legs as she acclimates to mobility.

It’s been really difficult during this time because my girlfriend is going through radiation therapy for breast cancer on the Upper East Side. If you don’t know NYC geography, she’s basically an hour away via train. She got an apartment around the corner from her radiation hospital so she wouldn’t have to endure a daily commute for her daily hour long radiation appointments. It’s sucked so much to not be able to be supporting her as I thought I would be doing this month, and to not have her support during Macy’s recovery. We did squeeze in a visit one night (benefits of the hospital being open 24 hours) and another visit the next day where we did some good walk therapy. Macy loves her Dad and will always come when Dara calls.

20140711_170632Dara’s mom was in town and came to visit Macy, too.

My initial discomfort with seeing Macy in the hospital really got me thinking about the power of showing up for people in their time of need. Showing up sloppily, imperfectly, but with a big heart and good intentions. It matters.

The shock of seeing Macy in that condition reminded me of how folks must have felt the first time they saw Dara with a bald head after the chemo hair loss began. How hard it must be to see how tired and out of it she gets. It’s easier for me because I’ve watched this happen gradually, but it is difficult for folks to witness it when they haven’t seen her for a few months.

Sitting in your own discomfort with shock and change, having faith that you’ll get through it is an incredibly powerful gift you can give to the folks in your life who are suffering.

I’ve seen how important it has been to Dara’s spirits during recovery from surgery, chemo and now raidation for her friends to show up for her. Sometimes all she can do is sit and watch TV with people but it means a great deal and definitely puts her in a better mood.

IMG_20140714_113430The hospital was really amazing and sent me photos of Macy in her crate.

People have been showing up for me in the past nine months in amazing ways. Little texts of, “Thinking about you, sending woo/prayers/love,” make me smile. I think that positive energy has so much power and being thought of is really nice. Folks have brought meals. Folks who keep inviting me out even though I haven’t been able to go out as much and often have to decline—it’s nice to be remembered. The people who relentlessly play phone tag with me in order to have a catch-up. It all matters.

Dara convinced me to take a few friends up on their offer to pitch in for Macy’s astounding medical costs, the whole thing is in excess of $7,000. When I first heard the price tag of what it might cost (we had to pay for a $1500 MRI to find out if she even needed surgery), I couldn’t even fathom how I was going to pay for it. I was lucky enough to know I could borrow the money. However complicated I felt about asking for help with pet medical expenses, I knew I had to open myself to whatever help we could get. We raised $500 in the first 24 hours, and it’s already up to nearly $2,000 a week later.

MacyEstimateThis is the initial estimate of her prognosis–the low end was if we only got the MRI, the high end was if we got surgery. It didn’t include the vet visits and blood work leading up to surgery.

And the thing about crowd fundraisers? It’s about opening the channels to letting people support you. I feel like sometimes we pass around the same $20 to each other when we need it. I think it’s amazing. Katie from Empowering Astrology blew my mind when she told me that money is just energy in 3D form. She’s totally right—we’re passing energy to each other. The person who donated $2 and said they wished they could pay for the whole surgery—that meant so much to me.

My BFF Spunky told me when I thanked her for donating to Macy’s fundraiser, “It’s literally the least I can do.” Because our friends, especially our far away friends, often want to show up for us in tangible ways that they can’t do. But money is energy. And for me, going through this, knowing that a great deal of the financial burden is taken care of? That blows my mind. It has enabled me to take some of the stress off the shelf and focus on caring for my beloved Macy.

It can be so hard to think that what you are able to do is not enough for your friend or loved one. I had no idea whether visiting Macy in the puppy hospital mattered to her or not, especially in those moments when I had to give her back to the vet techs. Saying goodbye was awful. It wasn’t perfect that I could only be there for an hour, or a half an hour, or whatever, but it was something. I had to trust it was going to help her get better and not feel so lonely.

IMG_20140714_145911Me with Macy on Monday when I got to take her home after a week in the hospital!

Since Macy was discharged on Monday I can’t leave my bedroom (where she stays in a playpen on bed rest for at least the next week) for five minutes without her barking her scared, “Please don’t leave me alone” bark. The vet said it’s normal for dogs who were in the hospital for a long time to feel really anxious and have a difficult transition home. What I’m realizing is that Macy missed being four feet away from me at all times just as much as I missed her being close to me. And I realize it mattered that I showed up for her.

2014-05-23

Dara’s Experience During Diagnosis and Surgery for Breast Cancer

12145725274_01512028c1_zThis is us after Dara’s second surgery. Outings had to be pretty short because she was so tired, I remember we had thought we might go to a second party after this wedding dinner but we couldn’t do it.

As a follow-up to my post about Dara’s experience with chemo I thought it might also be helpful, and provide some background for other posts around my care taking lessons learned, to talk about the process of her diagnosis and the surgery prior to chemo for her breast cancer. This is also another information dump sort of post—it’ll be interesting for someone who might be going through this process or having someone they know going through it to read a detailed experience.

Dara had a dream last summer where she was told by a friend who had passed away to get really good health insurance. She shopped for a policy and upgraded from her existing emergency room only policy. (This was before Obamacare came into effect last Fall.)

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Because of this new insurance, when she was in NYC for a conference in October, she made an appointment at her GYN for a check-up. It had been 2-3 years since her last check-up. She loves her GYN and when her doctor found a lump on her breast she was really surprised. Dara wasn’t in the habit of doing breast self-exams, other than once every few years after seeing a really dramatic commercial.

Within a couple of days of finding the lump, Dara went in for a mammogram of her left breast and biopsy at Brooklyn Hospital, the hospital associated with her GYN. She and I weren’t dating at the time so she went with a friend because she was scared. (We were in the process of becoming “Benefits without Friends” as I put it and she didn’t want to ruin our vibe by telling me what was going on until she got the diagnosis.)

While waiting for the results of her biopsy, she felt pretty sure she would be diagnosed breast cancer, given the dream she had last summer. Her intuition was setting off five alarm bells.

She made an appointment at Memorial Sloan Kettering with a breast surgeon about a month after the biopsy. She knew she wanted to be treated at MSK because her dad had received such world class treatment with his stomach cancer and the compassionate care that their staff, doctors and nurses offered was second to none. The appointment wasn’t for another month so she headed back to LA, where she had left her car on her six month cross-country-sell-all-her-stuff-and-wander-around-the-country-staying-with-friends trip.

She had an initial consultation with the surgeon in November after she drove back. Her mom, her ex from before me and one of the girls she was seeing this summer went with her. That appointment was an hour and a half. She had to go to another mammogram (this time she went by herself) at the direction of the surgeon.

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At this point, she still didn’t know what stage she was at (they wouldn’t know until after her surgery) and she needed to be tested for the BRCA gene to find out how likely a recurrence of breast cancer was. She went alone for the BRCA gene test and there was a lot of information given and she thought it would have been nice to have a second person there for it. Knowing her family history was important for this appointment and Dara wished she’d tapped her mom for more information (or had her along for the appointment). The results from this test took forever—like three weeks.

Her surgery took awhile to schedule. First she had to decide whether to get a lumpectomy (recommended by her surgeon) or a double mastectomy. According to her breast cancer surgeon and oncologist, they consider a lumpectomy and radiation to be as effective at preventing a reoccurrence of the cancer as a mastectomy. Dara’s decision was heavily influenced by whether or not she had the BRCA gene and the fact that she has an ambivalent relationship with having boobs. She talked about that (and her low hanging boobs) in her vlog.

Ultimately, she relied again on her intuition. She felt the inclination to just get a lumpectomy, even though she had lots of intellectual reasons to get her boobs chopped off.

Once she scheduled the surgery her insurance became a whole (thankfully brief) nightmare about not covering the medical procedures. Dara had to prove that breast cancer was not a pre-existing condition. Though her diagnosis was after she had changed to the new insurance, they needed proof.

We were more or less back together at that point and I spent a lot of time supporting her through the bureaucracy and my home office became a great asset for signing documents, scanning forms and overnighting. I can imagine if one didn’t have access to that technology the schlep to a copy place to take care of it would be icing on a gross cake. The whole insurance thing was stressful and stress is something she is trying to avoid. She believes stress is what caused her cancer.

The surgery had to be pushed back a couple of days because of the insurance pre-approval, but luckily Dara was able to get it done before the holidays.

She finally got the BRCA results back a week before surgery and they were negative so she felt like she had made a sound choice based on her intuition.

11408806393_91828085b0_zI genuinely love the waiting room beverage situation at MSK.

It was weird during the lump time. I could totally feel it on her boob. I started going to the doctors appointments with her at this point. She had a meeting with her surgeon at the main campus, with lots of questions. She went into that one alone and I realized after the appointment when I had to drag the information out of her that it would be way easier if I went in and met with the doctors with her. (This was before we identified me as her primary caregiver because we were still feeling out whether and how much to get involved with each other again.) She’s a very “in the moment” kind of person and I like to feel like I have a full understanding of everything so it became easier if I could go meet the doctors and release my litany of questions directly.

Right after she saw the surgeon we went to a different building at Memorial Sloan Kettering about ten blocks away for pre-surgery testing. There was a blood draw, she saw a member of the anesthesia team and an xray tech. We had a lot of fun at that doctor’s appointment. I took silly photos encouraging her to ham it up, playing with the tools in the exam rooms when left alone.

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I think that was the moment I realized consciously how different our relationship was from the first time we dated. I was still in love with her, that hadn’t gone away, which is why I had wanted to be part of her support team. This time around things seemed really different, though. Everything was more joyful, playful and our chemistry had opened up to this new place where even going to something as potentially scary and difficult as a hospital was fun for us. I knew we were starting something bigger than we had before.

Her parents flew in from Vegas for her actual surgery, an out patient procedure that was at yet another MSK building. She had to fast the night before and bathe using Hibiclens (a super sanitizing wash you can buy at the drug store) the night before and the morning of surgey. (By the way, my cat ALF had an emergency the morning before surgery and had to be put to sleep, for a little while it was like trading crises between the two of us.)

14059352638_4502b9dfaf_zALF’s last nap with Dara and Macy on my bed.

It’s kind of weird meeting someone’s parents for the first time anyway, and especially right before surgery. They are lovely people, but it’s kind of a stressful situation. I was not prepared for how scary waiting for her was going to be, even though the actual procedure was pretty short. It’s not easy having a loved one go under the knife. I remember telling Dara’s mom, “I don’t know how you did this six times with Dara’s dad,” because that’s how many surgeries his stomach cancer required.

They gave us a clear timeline expectation going into the procedure. She got wheeled out of the prep room, after about an hour the surgeon called us in (as they had said she would) to report back that everything went great, then we had to wait another 90 minutes or so for Dara to start waking up from the anasthesia. We could only go back to her recovery room two at a time so we traded off. The resident spent a lot of time with us fixing Dara’s steri strips. Then we went out for sushi since Dara was really hungry, and she went back to her parents’ hotel.

While we were in the prep room Dara was told by one of the nurses she would have to remove her bracelet. It is a string bracelet, similar to a friendship bracelet, that she had woven in everything she loved into it. It should have fallen off already by her surgery and it meant something special to her spiritually that it hung on. She asked the nurse if she could keep it, if they could possibly use her other arm. She also asked the nurse to say positive things to her while she was under the anasthesia.

When she awoke in the recovery room she saw that the bracelet was no longer on her left arm. She was sad until she noticed it was now on her right arm. While she was under someone (we think the nurse) had moved it and sewn it on her other arm, where it is still intact four months later. It was such a sweet thing that the nurse went out of her way to do. We’re certain she also was saying nice things to Dara during the procedure as we’d asked.

Dara came to stay with me the next day. It was hard for her to move around mostly because she was really sore, tired and had to ice her wounds a lot. She was also really grumpy from the meds. She had a difficult time sleeping. Mostly she just needed to stay in one place and sleep a lot and have food and ice packs replaced.

The surgeon also took out a couple of lymph nodes (sentinal nodes) to test to see if the cancer had metastisized. The wounds in her armpit from that were a lot more sore than the boob wound.

Her surgeon told her to start wearing sports bras only during the recovery process.

I was really impressed with the incision. It’s like this perfect semi-circle around her areola. I told the surgeon during her follow-up appointment that it was an impeccable job and I saw the normally pretty stoic business-y woman crack a smile. I mean, as a lesbian I feel like I am somewhat of an expert about what great boobs look like and Dr. Morrow did an incredible job maintaining the aesthetic.

It took her about two to three weeks to feel close to “normal” after surgery. Sadly, we were told she had to go back under the knife once the labs came back (a little over two weeks after surgery, they were delayed due to Christmas and New Year’s) because they found pre-cancerous cells in the margins of the lump, meaning they didn’t get everything they wanted. It sucked. Dara was really bummed that we had to start at square one, she was hoping to have some time feeling “normal” again especially because I’d been doing so much care taking for her.

During this time her lump was off in California at a fancy lab getting tested for what kind of receptors it has and all the yadda yaddas that tell the doctors whether it will be receptive to chemotherapy. I’m not sure if her lump got a chance to go visit the Redwood forest but I really hope so.

The second surgery was the same as the first time, only I was alone and it was later in the afternoon so her fast was much harder. I goaded her into filming this hilarious video of eating things in the waiting room.

Leo came by to visit for about a half hour, which was really nice, and I wish I had brought a buddy to hang with the whole time.

During the follow-up for the second surgery we got the results from the California Lump Resort and she needed chemotherapy. Basically, her lump was just at the point where she could maybe have not had chemo because the cancer had not matestizied. But because of her age and the type of cancer she had an 18% chance of reoccurence. Dr. Morrow explained to us that chemo was a good choice because she would knock that chance down to the single digits.

We were a little dubious, and went in to see Dr. Lake, her oncologist. During our initial appointment with her she explained everything really clearly by writing notes out for us—it included drawings and symbols. Kind of like being at class and looking at a professor making clear notes on an overhead projector (do teachers still use those?) but we got to take them home. Dr. Lake’s characterization of the type of care was what sent Dara over the edge to pro-chemo. “At this point we’re calling this curative care. If you get cancer again, it will be considered paleative.” Meaning, they could cure it this time around. If we waited, they wouldn’t be able to.

So we went for it. You can read all about her experience with chemo in this blog post.

Next up after chemo is radiation, with Dr. McCormick, another woman breast cancer specialist. It’s going to be a five days a week for five weeks, one hour per day, plus one day with another couple hours to see the doctor.

2014-05-22

All Bodies Deserve Health Care: Great Video Resource!

My friend Kelli Dunham, a stand-up comic and nurse, posted a video she made about planning for unplanned health care and I think it is one of the most brilliant things I’ve seen about how complicated it is to have a non-normative body while trying to navigate the health care system. I absolutely had to share it with my readership.

If you can’t watch a video right now–repeat this mantra, “I deserve health care.” Then keep repeating it until you have six minutes to watch the video and receive some really great, practical, funny advice.

I think a lot about how much worse Dara’s cancer treatment would be if she had waited. Believe me, it sucks a lot, but it could be worse… Luckily right now her care is considered “curative.”

240134641_117c66a8d5_o (1)Here’s Kelli Dunham with her late partner, Heather MacAllister, who worked to inspire all folks to take care of their minds and bodies. Her parting words are in this blog post I wrote five years ago about my own medical self advocacy.

I’m really thankful Dara’s lump was found when it was. But if she had waited to get her annual GYN exam she might not have caught the lump in time for it to be stage 2. I mean, Dara is not boob identified so even though once I knew it was there I could feel the lump it wasn’t super likely it would just get found on its own, and without her doctor’s insistence she might not have had it biopsied for quite some time.

It really touched me in Kelli’s video when she talked about how even folks who haven’t gotten “that lump” checked out deserve health care. Because they do! It’s so hard to advocate for yourself and it takes time to realize that you probably need to deal with the hassle and cost of health care.

The more hassle you get being a fat, disabled, gender non-conforming, otherwise marginalized person in the health care system the more likely you are to need your health care situation to actually feel or seem extremely urgent to get health care. Which, sadly, means that health care issues that are easier/cheaper to address if they’re caught early, are much harder to deal with and sometimes no longer curable.

One of the biggest motivating forces behind my work as a body liberation activist is getting people to love their bodies enough to take care of them and to dismantle the system that pathologizes fat people just for their fat. My beloved step mother died at age 48 after being prescribed fen-phen–she was being treated for her fat not her actual symptoms. What a fucking hassle to have a body that is immediately targeted and treated incorrectly because people buy the myth that fat is automatically unhealthy. This happens far too often.

11873829985_1d0d81bcc4_zMy step mom Liz, in Yosemite, sometime in the early 90s.

I also know way too many fat, gender non-conforming queers who have passed before their time because of a lack of healthcare that can squarely be blamed on systemic fatphobia.

So watch this video. Pocket this info. Regardless of what your own situation is, maybe you’ll learn something that will be helpful to pass along to a friend when the time comes. And repeat the mantra, “I deserve healthcare.”

10290632_10152377167780340_6190868267996805814_nKelli designed this awesome low-fi photo of Glenn Marla with his iconic phrase!

2014-05-16

Dara’s Experience During Chemotherapy for Breast Cancer

Before Dara started chemo I’d known plenty of people with cancer at a variety of ages. Other than understanding that chemo is extremely difficult and disabling, I didn’t know what was involved. Going through the chemo process with someone as girlfriend and primary caregiver has been an extremely different experience and there is a lot that I’ve learned. Helping to ease the discomfort of the person you love the most in the world is a huge motivator to suck up information like a sponge! I wrote the below for a friend who asked for a relative about to go through chemo and I thought it might be a helpful blog post. It’s long so I tried to create headers and bold stuff for easy reference. I’ll write more another post about my experience as a caregiver (I’ve learned a lot) and about the other parts of her treatment.

Dara’s experience with chemo hasn’t been consistent as side effects change and shift. Before she started her treatment everyone (doctors, nurses, former/current chemo patients and their caregivers) said that all bodies react differently to chemo and things will be somewhat unpredictable. Even all the research we did ahead of time wasn’t really helpful until she was actually going through the experience. This is an account just of one person’s experience with the physical and emotional affects of chemo as they’re happening.

14196785121_78d53e8877_zDara’s “Rod Stewart” wig.

She’s on a sixteen week course that consists of eight two week cycles for her Breast Cancer. The first four treatments were of Adriamycin/Cytoxan (abbreviated A/C) and the last four treatments are Taxol (abbreviated T). Different poisons that do different things but they both suck.

In case you don’t know how chemotherapy works, basically it treats cancer by stopping cells from being able to grow and divide—this affects both cancer cells and non cancerous cells. Since your hair follicles are some of your fastest reproducing cells this is why during chemo your hair might fall out.

Going into chemo Dara kept saying she’d heard chemo was “better than it had ever been” which, after I unscientifically polled my Facebook friends who have cancer experience, I think that statement just meant that the drugs to treat the side effects were better so folks experienced less terrible side effects. Also there are lots of different chemo treatments now that get better and better as cancer research comes out. I’ve learned a lot from the nurses we’ve hung out with during Dara’s infusions. Sometimes folks who used to have to be in the hospital to get their chemo infusions over a long period of time can take their chemo meds and go home with them for a 24 hour infusion. There’s a new treatment where folks just take a chemo pill and it isolates and blasts specific kinds of cancer cells without killing the other cells in the body.

During the Infusion

14176949556_88317a8c66_zWe were asked by the MSK publicity department to not include staff faces in a video Dara shot at her infusion center, so even though we heart everyone we work with there we’re keeping that up on our photos for the blog. Hence the “disguise” above.

Dara’s actual chemo infusions are as close to fun as anything involving IV lines can be. The care she’s gotten at Memorial Sloan Kettering has been amazing. The nursing staff at the Brooklyn Infusion Center is incredibly kind, caring, smart as whips and fun. The infusion suites have recliners, a couch for the loved ones, these consoles with internet tv and games on them, free wifi, baller coffee machine and a pretty great fridge with shasta colas. I’ve had friends suggest bringing games and activities to chemo, and we’ve had a ball doing chemo karaoke when the actual chemo goes in. Bell Biv Devoe’s “Poison” and Alice Cooper’s “Poison” were on the first round playlist.

During the Taxol treatment she gets Benadryl as a pre-med (meds she gets before the infusion, along with IV steroids to help prevent nausea) so she spends that three hour infusion asleep and I do work on my laptop.

The day before her chemo infusion she goes in to see her oncologist and the practice nurse (the nurse who only deals with that doctor’s patients) to talk about the side effects and have a physical exam. She also gets lab work done and we sit down with the scheduler for all her upcoming medical appointments. This process is usually an hour and a half but with wait times can be up to three hours. The main campus of Memorial Sloan Kettering is on the Upper East Side, which is an hour each way for us. There’s free wifi and the good sodas there, too, which is helpful for me to get work done. I bring this up as part of the chemo process because sometimes the schlep and amount of doctor wait time affects how she is feeling and her ability to recover.

How Chemo Feels

Her first few weeks on chemo she was able to isolate “glory days” where she felt good for about the five last days of her cycle—almost back to normal in terms of energy. She says, “It might be better than normal because when you feel normal after feeling crappy for nine days you feel like Superman.” In the fourth cycle she didn’t really have “glory days” and then with the Taxol treatment it’s more like “glory hours” where for a few hours a day she’ll feel okay or have some energy but not reliably.

Feeling good during chemo has been affected by her period, which stubbornly hung on for awhile even though it surprised her doctors that she was still getting it. PMS plus chemo is basically the worst. She also thinks that anything else that was wrong with her before chemo has gotten heightened, like chronic lower back pain.

You Kinda Can’t Do a Lot During Chemo

There’s all kinds of things she can’t do other than the physical obvious stuff that she doesn’t have energy for. No vitamins other than Vitamin D because you don’t want to strengthen the cancer cells we’re trying to kill. No spirulina or other supplements. She was doing a bunch of anti-cancer diet stuff before chemo started and they told her no juicing more than 6 oz a day but she hasn’t been able to drink fresh juices since the nausea started. No tears or punctures to the skin as much as you can help it because you can’t heal that fast and therefore, infections. She had to switch to a soft toothbrush and even then her gums were bleeding like crazy for a couple of weeks.

Chemo makes you immune compromised, so she has to be wildly careful how she interacts with other people and hand washing/hand santizer is an all the time thing. Using hankies or scarves to open doors/touch elevator buttons, etc… Our chemo nurse Erin said that as much as possible learning to never touch your face is a really important way to prevent catching things. As caregiver I have to be extra careful to not get sick as well because if I’m sick she can’t be around me. We have to tell anyone who comes to visit to cancel if they feel that they might be sick or getting sick.

14013573347_f4e975e092_zYou get used to seeing these masks during cancer treatment.

She is given a shot of Neulasta the day after her chemo infusion (luckily this happens in Brooklyn as well) to encourage her bone marrow to produce more immune blah blah blah and she gets some bone pain from it. Her white blood cell count has been pretty high for awhile and then one week went up to 39 which was like enough WBC for everyone in the hallway we were in, as her doctor said, so they skipped it for one cycle. If the WBC is too high something goes wrong but I forget what doomsday thing they said. We had to go in for an extra round of labs the week after they skipped it to make sure she didn’t dip too low.

Hydration has had the hugest effect on her overall experience of side effects. She hated drinking water before chemo. We have done all sorts of things to encourage her to drink more. Coconut water is a huge help (she’ll go through a carton a day sometimes), I found all these calorie-free drink mixes that are meant for water bottles in my cabinet, tea, lemon in water, etc… We also do a daily chart marking off her water intake and I give her stars for a behavior chart every day she drinks all her water. Sometimes working towards a goal, especially when you don’t feel great, really helps.

Watching TV really helps, because it distracts her from her bodily discomforts. Sometimes when friends come for a visit she says, honestly, after a bit of chatting, “I really just need to watch TV now, want to watch with me?”

Feeling “high” from her drugs is not exciting for Dara. She doesn’t find it as fun when it’s high for a medical purpose than recreationally. Plus she wants to feel like she can function and it’s hard to decide to take a drug that makes her feel disconnected from everything around her. Sometimes it’s a welcome relief but most of the time she toughs it out rather than getting high.

The biggest side effects she’s experienced are fatigue, nausea, pain, constipation and extreme emotions. Nothing has been a slam dunk in terms of what’s helped ease them. Something helps for awhile and then maybe it doesn’t anymore, or the side effect gets different or worse.

Fatigue

She just gets tired. At first I thought the experience of being around her while on chemo was like having a partner who has the flu but since it’s not an all the time thing it’s just like BAM she gets tired, so maybe the flu for a few hours. Maybe 10% of the time she’ll get winded going from the living room to the bedroom. And 10% of the time she’s totally up at her normal capacity for running around. The other 80% is somewhere between those two extremes.

14013370469_19440a7cd3_zGoing to the park during her first “Glory Day”.

Nausea

The anti-nausea meds work really well for some people and for Dara they weren’t great. She was extremely nauseous most days she was doing the A/C treatment. Luckily, the Taxol treatment is mostly about pain and not nausea so that’s been a welcome change. Though it’s Sophie’s choice, right, would you rather be in pain or nauseous?


She’s prescribed Zofran (for daytime as it’s non-drowsy) and Compazine (for night-time as it makes you drowsy). She was feeling really jittery for the first few weeks of chemo and thought that was a chemo side effect, but it was actually a side effect of Compazine. Once she stopped taking that at night the jitters went away. She was also given Ativan for nausea as an “in case of emergency” kind of drug. She doesn’t like taking it because she doesn’t want to feel “high.”

By week three of chemo she basically went off her anti-cancer diet and started eating whatever she could keep down—this was mostly bananas, yogurt, and bread.

Here are some home remedies and food that helped when the nausea was really bad:

Frequent, small meals
Ginger ale
Ginger tea from David’s Tea
Morning Sickness Tea from the Herb Shoppe
I hand-ground fresh ginger and kept that in the fridge to make tea with
Really uncomplicated foods: Boring chicken breasts, pasta with butter and a little bit of garlic, I made a bunch of congee (she liked it once but can’t do leftovers when she’s nauseous), french toast, pancakes, bananas cooked in butter as a treat
Ensure is a good meal replacement, and was okayed by her doctor (because of the vitamin/supplement content we had to run it by her oncologist)

Edibles and other forms of medical marijuana have helped with the nausea sometimes, but as I’ve said earlier she doesn’t like feeling “high.” A friend gave her a tincture, which is helpful because she can regulate how much she gets (rather than guessing how much to eat of a brownie, right?) and I’ve heard of a different tincture of CBD that doesn’t get you high but is hard to get in New York.

The nausea is better these days but she still experiences it now and again (a couple times a dayish) on the Taxol.

Constipation

This has been an ongoing issue for the last few weeks and it gets really bad. Constipation makes you grumpy and I can definitely tell in her mood if she’s stopped up. It’s also painful and makes her nauseous. Here’s a variety of stuff that helps, sometimes helps, or has been suggested:

Miralax (powder dissolved in liquid, her doctor suggested)
Senekott (vegetable-based stool softener and laxative, Erin the chemo nurse suggested)
Dulcolax (stool softener, Sarah the chemo nurse suggested)

Food remedies we’ve tried:

Prune juice, prunes on her cereal
Fibery cereals
Eating salads
Blueberry/kale involved smoothies (which I make and usually drink, too, and work very well on me)—my recipe is 3 huge handfuls of kale, 1-2 handfuls of spinach, a small handfull of cabbage, enough almond milk to blend the greens comfortably, then I add 1-2 tbsp of brown rice protein powder, 1 small banana, 1 handful frozen blueberries, blend and drink.

Exercising helps relieve the pressure of the gas inside her and last night I had her do a yoga series I’ve done before to move the digestion, which helped move her gas a little. It’s where you lay on the floor, pull up your left knee with right leg straight, hold for 1-2 minutes, switch to your right knee up and left leg straight, hold 1-2 minutes, then do both knees up 1-2 minutes.

She got so constipated before her second infusion of Taxol that she ended up puking after she got the benadryl pre-med! Sometimes after she finally gets relief from constipation she gets diarrhea for a couple of days and finding the happy medium between the two is rough.

Watching her suffer through this I definitely have been feeling a lot of gratitude for my own movements. Anyone out there reading this who has had a normal feeling poo today, send up a little thank you.

Pain

For the bone pain caused by the Neulasta shot, her practice nurse suggested taking Claritin the day before, day of and day after the shot. It has really helped but not gotten rid of the pain entirely.

She’s had a lot of pain from the Taxol. She sometimes gets relief from ibuprophin—600mg helps her with pain, 800mg helps her go to sleep. She has gone to a vicodin here and there but it is constipating and she feels “high” on it so she doesn’t like it as much. Edibles helped once with her pain but the other day definitely didn’t help the pain.

Dara has found that moving around when she can helps relieve the pain and discomfort. Her doctor has said exercising is great when she can do it and she tries to but it doesn’t always feel possible because of her fatigue. Low-impact walks around the block help, dancing to music for four songs is fun, she likes working out at the empty gym in her friends’ fancy apartment building, and doing stretches. I think anyone who has a yoga practice going into chemo is going to be in a good space for relief opportunities.

Massage has been a huge help with joint pain during the Taxol treatment. I’ll often massage her hamstrings, knees and ankles before she goes to bed. I have heard you shouldn’t massage a cancer patient with metastatic cancer (cancer that has spread throughout the body) because it can help move the cancer, so I would definitely check with a doctor before doing that.

At the okay of her doctor she’s been taking calcium and glucosamine/msm supplements to strengthen her joints (helping her joint pain) and strengthening her bones that might be weakened from the chemo. It violates the rules against supplements, which is why she needed to get the okay from her doctor.

14196784611_e0d0a8ab18_zShe got this amazing alien design in her hair courtesy of Camera Ready Kutz!

Emotions

Her emotions are so intense right now! She cried real tears at the end of Turbo, the snail movie. She cried real tears during that Macklemore “Same Love” song even though she feels complicated about the institution of marriage.

She finds her emotions are easily influenced, so she cultivates what she watches very intentionally—happy videos, movies and tv shows have been really helpful. (She never watched TV shows before, being mostly focused on work and her social life, so now she’s found all 6 seasons of Parks and Rec and we recently discovered Broad City on Comedy Central.)

She is very strict about only having positivity around her and has had to ask some Debbie Downers to not be negative in their interactions.

She also tries to be real, and sometimes (like yesterday, talking about our first visit to the radiation oncologist) says, “Okay, I just need to vent so I don’t want any bright sides brought up right now.” She’s gotten angry sometimes, and has a few songs about how much chemo sucks. Letting out the negative emotions is just as important as cultivating the positive ones. I do my best to coach her through that as I’ve done a lot of work in that arena on myself.

We’ve been going to the Brooklyn Botanic Garden and just getting into nature a little bit really helps her mood. I read somewhere that fifteen minutes in nature is a huge stress relief. Even when she’s too tired to walk too far, we’ve just gone and lied under a cherry blossom tree.

A simple change of scenery helps a lot, even if she’s not sure she’s up for it, trying something/anything helps (and sometimes if she doesn’t think she’s up for it trying it still helps). We sometimes just go for drives in the car—on Sunday she drove me to Trader Joe’s and sat in the car while I went inside. She didn’t have the energy to help with shopping but being “out” in the sunshine helped her mood tremendously.

Having buddies to talk to has helped. She’s got a couple of people who started chemo after her she talks to and she’s appreciated chatting with other folks about their experiences with similar chemo treatment. I know there are support groups out there and she’s thought about going to one after chemo is over.

She also sees her friends when she can, and we’ve spent some time apart here and there, which I’ll talk about in the caregiving post.

My dog Macy has been a helpful emotional support animal, Dara feels very calm when she sits with Macy on her lap.

Spirituality is a big part of our relationship and both of our lives. We pray before each infusion and pray over the side effects often. It helps to feel spiritually connected.

12771249484_62ec300a43_o

Hair Loss

She shaved her head so her hair wouldn’t fall out in great clumps. We were surprised at how long it took for it to go away. It was kind of scary while it was happening because there was no way to predict how quickly it would fall out, but now I’m so used to how she looks bald it feels like one of the more insignificant parts of her cancer treatment. She’s also not entirely bald—she still has some “fuzzies” hanging on, maybe about 10% of her hair is left.

By the way, she lost body hair first. Her pubes thinned out, then her chin hairs fell out, then her head. On the Taxol she has thinned out her leg hair and lost some eyelashes. Nothing has grown back.

Other stuff

Her skin feels like it’s crawling sometimes and she has the sense she can feel her organs moving. It’s a weird hypersensitivity and dis-ease feeling.

Chemo brain is a thing! She gets confused sometimes and her already hilariously bad memory gets worse. It’s been less true on the Taxol than the A/C treatment.

Her teeth are getting kind of brown. I heard a lot of folks talking about how important it is to go to the dentist right before and right after chemo in case the chemo has eroded the teeth. A couple of friends told me about people where all their teeth fell out after chemo, totally scary to hear. Here’s hoping everything is okay dentally and otherwise afterward.

Your mouth is like the fastest generating part of your body. Like the cells just reproduce like mad in there, so if you get a nick during regular life you heal overnight but during chemo it doesn’t heal and becomes a sore. To prevent mouth sores you can do this solution of .5 liter of water and 1 tsp each of baking soda and salt. Swish with this 6-10 times a day (basically anytime you eat) and it helps prevent them. Dara got a wicked mouth sore the first week of chemo and her doctor prescribed a topical cream to solve it, but before it went away all she could eat was yogurt.

Little comforts help, like getting a couple of caps for her to wear and cozy jammies. She bought a couple of wigs for work (she freelances so she wears them for client meetings).

Sex has absolutely been affected. I’d say if when she’s healthy we’re at 100%, right now we’re at a 25%? And that’s mostly her just giving one for the team if you know what I mean. Her sex drive has definitely been affected. I’ve found, though, that we find lots of ways to connect the way we used to use sex, so cuddling, being intimate otherwise and creative helps.

I am Reiki Level One certified (getting Level Two this weekend) and have been doing reiki treatments on her here and there and they seem to help. My instructor said that his friend with breast cancer liked getting treatments right before her chemo infusions, but I think it depends on when the person wants to have that kind of energy.

A friend suggested the book The Chemotherapy Survival Guide and that’s been really helpful as a reference guide.

Asking questions is totally my MO—I like to ask questions until I really understand things. So I’ve learned a lot about chemo. There’s never a perfect permutation for how to deal with chemo side effects, you just kind of throw stuff at it until something works.

I hope some of this helps anyone out there going through chemo or who has a loved one going through chemo and you want to understand it better. I genuinely hope that Dara is “one and done” with chemo and with cancer.

I’ll be back with a couple of other posts about the experience, and my Instagram has been basically a live blog of the experience of breast cancer. Dara has a great vlog about what she’s been learning from her cancer experience.

14013382068_094eaea021_zThe first infusion, singing Poison.

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