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

2017-04-26

General Life Update: Dara’s Hysterectomy and Oophorectomy, Moving and Judgement Resilience

So much has happened since my last one I feel like a new life update is in order.

PRESS!
I am quoted a bunch in this great article on Autostraddle about the gym, EVERYBODY, where I teach weekly body oppression healing aerobics.

I was on Tristan Taormino’s awesome Sex Out Loud Radio show and there’s a podcast download available here of our conversation. I talked about the time I got bounced at the gate of Dollywood for wearing a gold sequin crop top while fat, even though the dress code specifically allows for crop tops.

The crop top chronicles continue because I’m on a BILLBOARD around Northeast LA wearing a mesh crop top and a bra. The front gate manager at Dollywood would be very scandalized.

MOVING!
We moved! Our new house is awesome! It has central air conditioning! We spent $550 last year in credit card points on a portable A/C for our bedroom and an evaporative cooler AKA “swamp cooler” for the living room because it was hot like the surface of the sun in the afternoons most of the year in that tiny not well-insulated house. We didn’t have a single window that could accommodate a window unit A/C and we both work from home so comfort was important and expensive.

The portable A/C was awesome and I highly recommend it, and since we bought it on Amazon it came right to our door and I installed it myself in under an hour. (A reminder if you buy anything on Amazon using my referral link, no matter what you end up buying when you get there, I get 4-6% referral credit, which adds up and really helps out.)

The swamp cooler is only medium effective, somewhere between a powerful fan and a weak A/C, but will be great for outside parties in our amazing new backyard. I think about how much time we invested in researching and implementing climate control modalities on a tight budget and now we’re suddenly in this climate controlled well-insulated environment! I can’t get that time back but at least we’re way more comfortable.

Me and my friends Beth and Tara at a Shabbat dinner exploring virtual reality as a storytelling modality for social change.

LA just had our first 91 degree day last week and all Dara had to do was touch a button and the house was suddenly cool. I haven’t had central heat and air in my adult life, it’s pretty novel. The new house also has a dishwasher that we haven’t used because I haven’t unpacked our dishes and I can’t wait to see if that changes my life.

We’ve been in our house for two and a half weeks and have so many more boxes than I thought we still would. In my visions, we were mostly unpacked by now. In April of last year I had a meltdown about how our house wasn’t yet together and somehow I had that same meltdown on Monday of this past week, a full three months early. The last house we had complex attic clean outs and renovations that slowed things down. This time it was major surgery for Dara.

DARA’S HYSTERECTOMY AND OOPHORECTOMY

Three days after we moved Dara had her first appointment with her new doctors at UCLA. In November and December of last year she had a cancer scare due to abnormal cells in her uterus. Since she finished chemo for breast cancer in 2014, she had been taking Tamoxifen, an estrogen blocker, to help prevent a reoccurrence of breast cancer. Tamoxifen is the only drug prescribed to prevent a reoccurrence to premenopausal women, there are a few types of different inhibitors to prevent a reoccurrence for postmenopausal women. Turns out Tamoxifen increases your likelihood for uterine cancer.

Dara endured multiple, increasingly invasive biopsies until she was told it wasn’t cancer but she should consider a hysterectomy and oophorectomy. Since the doctor that performed her last and most invasive biopsy wrote her a prescription for an IUD because certain kinds help prevent uterine cancer, and Dara pushed back asking if it would interfere with breast cancer prevention and it turned out it would… she took that “oops” as a tell that she should get way better health insurance and transition to the best cancer hospital in the area.

Dara at the new oncologist office. We really loved him.

I have all the Working Class Feels about how money buys you medical access, which is literally life and death for many people. To be transparent about it (because I think this busts up capitalist shame around money) Dara was able to upgrade her health insurance from Silver to Gold because her mom offered to help financially make the leap.

Further, Dara was able to find out who the best doctor was going to be for her cancer treatment going forward because she has a family friend who is a legit “Medical Concierge” who has access to that information. This is what people with money have access to, they get a medical concierge to find the best doctors money can buy and pay tons of money for their health insurance.

I cannot underscore how much I support Bernie’s continued call for universal health care in this country. Health care should be a fundamental human right, like education and access to clean water. Even if we got universal health care, as long as the US remains capitalist, I’m sure money will continue to buy access to “the best” healthcare available because people will continue to pay for it and provide it.

We both feel complicated about it, but her health is important. When she saw the UCLA OBGYN surgeon in the oncology department and she reviewed the findings from the biopsies, she said, “Can you come in on Monday for a hysterectomy?” It was that urgent to get it out. So, even though it was wildly inconvenient to have major surgery a week and a half after we moved, Dara scheduled it.

What a rough day. We had to wake up at 3:40AM to drive cross town for her 4:45AM call time for surgery. I had to teach aerobics that night and I’m still building my following so I didn’t want to cancel class. Her mom flew in to be here for it and I was able to leave at 2PM to make sure I wasn’t trapped by traffic on the West Side, though it still took me 90 minutes to get home. I am not a great napper, so I just did my best to be present and ultimately had a great aerobics class!

I drank a lot of caffeine and prayed for a lot of Divine assistance to stay present and channel the best healing for everyone in attendance.

The surgery was as successful as possible, she was done in an hour (was supposed to take up to three) and her healing has been happening swiftly. It is SO reminiscent of cancer treatment times. She has all the same prescriptions for constipation and I ran out to buy All Bran and prune juice. Dara even weaned herself off the Norco as soon as she was able (within days) because the gas pain and constipation were more uncomfortable than the pain from surgery. She can’t carry anything more than five pounds for two weeks and she’s been very weak.

Poor fifteen pound Macy is used to being able to bark for her human elevators to put her on furniture since she cannot jump up and down on furniture or take stairs, but one of her human elevators is out of order for a few weeks! She doesn’t understand. This all means I am taking care of the house and pets 100% of the time. Between regular cleaning and keeping the house going, it has ground the unpacking progress to a slow crawl.

I’m so grateful Dara busted ass before her surgery to unpack 80% of the living room and office. It feels a little hard since we don’t really have places for everything, however it is ultimately so helpful to have things having motion out of boxes. I have never had the experience of paying movers and packers before, but it seems that they just box whatever into whatever box and label it vaguely “Kitchen” and “living room” and literally none of them are labeled “bathroom” and I still can’t find my hair dye.

JUDGEMENT RESILIENCE

The fact that I am obsessively staring at my roots lately is a symptom to me of a larger issue I’ve been having around judgment. Most of the time I am incredibly resilient to judgment. I feel like it is a kind of forcefield to give zero fucks what anyone thinks about you. Someone I know was worried about my choice to move to LA because “everyone is so judgmental about weight” and I felt like I would be fine because of my resilience.

And yet, in the past month or so, I’m so worried about what other people think it is distracting me. Not necessarily about my weight but the aforementioned meltdown happened because our new landlords were coming over 2 weeks after our move / 5 days after Dara’s surgery, and I worried what they would think about our house progress. I spent two hours cleaning before they got there and left to walk the dog while they were inside because I couldn’t interact and needed to go cry a bunch. I know part of this is residual trauma from months of housing instability and not feeling safe in our home—the thought that our landlords wouldn’t like us and would ask us to move out was really triggering.

I’m glad I’m aware of the judgment resilience issue because that’s the first step to changing anything. (Awareness, acceptance, then action.) I know there’s an element of self compassion I’m missing, which is the acceptance part. Objectively I know I’m doing the best I can and I’m still having a hard time accepting my progress not perfection.*

I pulled out the big guns and watched an Oprah interview with Tony Robbins. It gave me great perspective and helped me move towards acceptance. I am already very aware that my expectations of myself are so far out of reality because of how I learned to keep myself “safe” by being an overachiever. I can easily and unconsciously punish myself mentally for not meeting my unrealistic expectations. It makes all the sense in the world why grieving for my Grandmother on top of the velocity of changes happening might make me extremely vulnerable. I’m going to meet this symptom with a LOT of self care and I’ll report back on my progress. (I’m already attacking it with lots of gratitude practice and that’s helping.)

REIKI MASTER

This week I started training for my Reiki Master atunement. I had been wanting to do this as a long range plan for Bevin’s Tea and I’ve been relying on energy healing so much lately. The more I level up my own healing capabilities, the more healing I can do for myself.

I’m studying with Syd, the healer we’ve been working with for Macy’s cancer, Dara’s cancer prevention/surgery, my grief, Biscuit Reynolds’ myriad of issues and who we brought out to do a very powerful healing the night my Grandmother POTSA. She offers a monthly payment for the Reiki Master that is the exact amount I make from my job doing social media monitoring for The Militant Baker, so it just seemed like the Universe was aligning it to happen now.

Reiki, in case you don’t know, is a healing modality to raise the vibration of your cells. To quote 30 Rock, it is the “Laying on of hands to improve one’s life.”

Reiki comes in three levels, Level One, Two and Master. Though I only need Level Two to be able to put Reiki into my teas and I can even use my Level Two ability to go through time and space for distance healing, being a Reiki Master was a goal I aspired to as a next level. I also have been wanting to do more direct energy healing work out of our third bedroom, making it not just a guest room but a true Healing Room in which to see clients and help pay rent. So even though this is one more thing to add to all of my other things, sometimes earthly logic is not divine logic. In other words, I just felt like it was the next right thing. Part of my homework is daily self treatment with Reiki and that discipline has been helpful for me.

Between the Reiki Master studies, my ongoing work with B-School developing my tea business, my AFAA aerobics certification (wading through SO much fatphobia to get certified), I think I’m in grad school for healing modalities.

This period of my life right now is reminding me of the Dixie Chicks song that has always brought me a lot of comfort—Long Way Around. I do not know why I am so multi passionate but I am and I am working to accept all the bits about me that will eventually womanifest into something pretty spectacular.

Bucket list item checked off–seeing Dixie Chicks for the first time last October with my bestie Spunky!

*I wrote this post at a Panera and had to have a freak out and resulting thought process around feeling like a failure for being 38 and not having kids yet… I am usually so zen about this. When I have flares of issues I’m usually so resolved about, it’s my tell that I have emotional and self care work to do.

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.

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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.

2014-04-18

Six Strategies to Not Care When People Stare at You

When my girlfriend started to go through chemotherapy, she shaved her head. She didn’t want to start losing her rock star style shaggy hair in great clumps so she figured she’d go bald on her own. She doesn’t shy away from flamboyance, so she did a whole head shaving party and got our buddy Khane Kutzwell from Camera Ready Kutz to do a whole fancy design, that you can see in the below video.

Shortly thereafter, folks started staring at her more than they used to. Especially as her hair thinned and she slowly went bald. She worried, when it got really obvious that she was balding, about what other people were thinking about her.

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I could relate to how she was feeling. I used to constantly stress out about what people thought about me, even when I was a more run of the mill fat girl when I was a late teenager and in my early twenties. (I did my best to blend in, but it’s hard when you’re 5’7” and fat.) As I started to come more into my own, I started dressing more flamboyantly and now I get noticed a lot. It’s actually kind of a relief in New York City because you get less stares when you look like a weirdo than you do outside of the city. I often forget how conspicuous I am until I travel.

13513393314_3d9cd2f604_zPhoto I took in a bathroom on a road trip through small towns when I realized people were staring at me and I remembered that I usually stick out.

A lot of folks do the long look to try to decide what’s going on with someone when they look unusual. And that’s way more noticeable when you’re not used to it. It feels weird. And when Dara started to notice it, she felt uncomfortable and insecure about it.

I surprised myself by rattling off a bunch of strategies she could use to get more comfortable with being conspicuous. So here, dear readers, is a cheat sheet for how to stop caring about what strangers think about you.

This is, of course, just strategies for your perceptions of people looking at you. This list doesn’t address the real danger of homophobic, transphobic, misogynist, femmephobic, ageist, sizist, antisemetic, racist, anti-erotic street harassers and jerks out there. For my readers out there blooming as the gorgeous weirdo flowers you are I send a lot of love and protective energy to you.

1. It’s not about you.

I like to remember that everyone in the world is running their own race. What that means is that everyone is on their own journey and you don’t actually know what’s going on in their mind. We’re all living in a beligerent society that commodifies insecurity. It teaches us to hate ourselves and our bodies. When I was at my most insecure, I rarely paid attention to anyone else except if it was in a way that I would put my own self down.

I would hazard to guess that most folks who you think are looking at you aren’t actually noticing you. And if they are noticing you and passing judgment or having thoughts about you, it doesn’t affect your value one bit.

One of the best things you can do for yourself is to work on your own value internally. How much you are worth isn’t decided by the woman standing behind you at Starbucks who won’t stop looking at you. Even if she is judging you, which she might not be, her scowl could just be about how she’s not sure she can actually afford to pay her light bill and she’s wondering if this latte is a good idea.

If you’re familiar with the Four Agreements, I like to remember the second agreement in times like this. “Don’t take anything personally.”

2. Pretend they are thinking you are beautiful.

I read a tweet from Our Lady J that changed my life. She said something to the effect of pretending like the people staring at her were thinking she was beautiful. So many people might be looking at you because you’re beautiful but you might not have the ability to agree with them so you’re assuming it’s a negative judgment when it might actually be something positive.

I really like the call to assuming people’s best intentions and an affirmation of your own beauty if you can go there. And also, sometimes negative body comments are a way of masking folks’ own discomfort at finding nonconformative bodies attractive. That is really complicated for people.

Our_Lady_J_8Photo of Our Lady J by Santiago Felipe.

3. Remove your judgments about other people.

I believe true change on a global level starts from the personal. If you can transform the way you think it will help transform the world. I think this is true for how you feel about other people.

I used to comment internally on people’s bodies. I grew up wildly focused on my own body. Now I work hard to be really neutral with myself about my own body, but I had to stop my internal chatter about other people’s bodies before I could apply it to myself. When I found myself saying, “That person is thin, I wish I was more like that,” I would stop myself and remind myself of my core value: All bodies are good bodies.

We live in a society that teaches us that it is okay to pass judgment and value other bodies in hierarchical ways. The media is constantly critiquing people’s bodies and appearance–it’s so difficult to step away from that programming!

If you can replace criticism with compassion for other people it will transform the way you feel about yourself. Once I started learning more about how to apply compassion in my own life (I talk about this in the April write-up with Empowering Astrology) I mellowed out a lot and cared much less about what other people were thinking about me.

13416539085_5c6b735962_zDara’s alien as it started to fade.

4. Work on your own perception of yourself.

From about age 8-13 I was bullied relentlessly. I absorbed those terrible things kids and adults said about me and my body. I became the worst bully of myself and started a constant internal chatter of criticism. I believed those things. It took years and years of choosing to rearrange my thoughts to not berate myself.

Accepting and then eventually loving myself took a lot of time and intention on how to think about my body and then eventually my own self worth. There are a million strategies for this (I offer body liberation coaching to help folks work on loving their bodies), but one of my favorites is below.

Piggybacking on removing judgment about other people in number 3 above, is removing your own judgment. Often we look for things to reinforce the thoughts we already have. Our thoughts are incredibly powerful. When you walk around thinking about how awful your body is, that is what you reinforce with your thoughts about what other people are thinking about you–a toxic feedback loop!

Instead, try replacing your negative thoughts with positive affirmations. The deal with affirmations is that they are statements that may not be true in the present but that you will eventually begin to believe the truth of. (See Louise Hay’s You Can Heal Your Life.)

Some good affirmations that you can splice into your thoughts when you get caught up berating your own body or worrying about what other people think of you are:

I approve of myself.
All bodies are good bodies.
I love myself.
My body is wonderful.
I am beautiful and smart and that is how everyone sees me.

5. Wear sunglasses.

As a nightlife performer in New York City–where venues with proper dressing rooms are a luxury–I have had to learn how to not worry about people openly staring at me because I’m wearing a weird costume and a lot of make-up. Once, on the way to the Dyke March wearing a Wonder Woman costume I put on a pair of sunglasses and I decided that if I couldn’t really see other people they couldn’t really see me. It worked, I stopped caring that much about whether people were looking at me.

6. Fake it till you make it.

This is also a great strategy for learning to love your body. It’s just acting like it doesn’t bother you when people look at you. Maybe it still does but if you pretend to yourself and maybe to other people that it doesn’t bother you, you’ll start to believe it.

13133225584_0696c9b086_zDoing Chemo karaoke.

It’s taken me many years to get over people’s perceptions of me. Ultimately, I know if what I am doing, wearing, writing about, living is in alignment with my core values, I know I approve of myself. And that’s the most important thing to me, being a person who knows who I am and lives that life authentically–no matter how people judge my body or my lifestyle.

2014-02-13

My Second Session of Relationship Coaching with the Lesbian Love Guru

This is the second entry in a series about my experience Relationship Coaching with Christine Dunn-Cunningham, the Lesbian Love Guru. Follow the lesbian love guru tag on the blog to catch all the entries!

My not-yet girlfriend and I had our second session of relationship coaching the week after we began. Christine suggested we continue our coaching separately. It’s counterintuitive to how I pictured this coaching would occur; I imagined we’d both be together on skype with Christine, but instead we each take thirty minute separate calls with her. Since we tend to be together when it happens, the other hangs out in the living room with music playing.

Being out of earshot enables real talk with Christine about what’s happening. Often if you explained a problem in your relationship to a third party, you would use really different language than if you were together. I find it a relief not to think about Dara’s feelings when I’m explaining something. I feel like I can get right to the solution without spending extra time sugar coating an issue.
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Prior to the second session we had each filled out intake forms for coaching and sent them to her as well as one another. The intake form reinforces Christine’s confidentiality agreement.

The issue of confidentiality is paramount to this [coaching] relationship. My understanding is that nothing in this [coaching] relationship is to be discussed outside of our conversations. There are times when references to others may be helpful, however I would not ever mention a name or person that would lead someone to infer the discussion was about you as a client.

The rest of the intake forms were about our future visioning, setting out goals and what we think is limiting us. I liked that we shared them with each other because sometimes it’s good to see what the your sweetie is expressing in terms of goals for an ideal love life and how they see their future. What if your big goals are really incompatible? That’s important to talk about!

In my one-on-one session with Christine we focused on what was going on for me at that moment. This had a little less to do with my relationship and more to do with how I was feeling with my own time management. One of my goals this year is to get more structured about how I use my time. I am also really worried about caregiver fatigue because Dara has breast cancer and I’m her primary caregiver. Time management is important because I need to make sure I prioritize my self-care, which is easy to let fall by the wayside when you’re only dealing with things that are “bleeding.”

20140213_124617At her first chemo appointment, as the awesome nurse Erin at Sloan-Kettering was “pushing” the first dose of chemo poison, Dara sang Alice Cooper’s “Poison.” I would have gone with Bell Biv Devoe’s “Poison” which might do more to explain our communication issues than anything else.

Even though caregiving isn’t all that taxing (yet), it is a lot of time. After her surgeries was a lot of letting her rest and heal while I took on the lion’s share of the housework. Making sure we’re eating whole, healthy foods is another thing I’ve taken on 90% of the time. Her cancer diet is pretty restrictive, which means most of what I make is from scratch. Add to that we both work to only eat humane meats, which requires special trips to the butcher. I feel extremely grateful for my work from home lifestyle because when I plan well I can be cooking while working. But my time management can really use some improvement so that the planning part of that intention actually happens!

20140212_203059I highly suggest this infinitely customizable pizza casserole recipe, passed along to me by my dear friend JLV.

Christine suggested a Tony Robbins tool called “Rapid Planning,” which helps to ensure what you’re doing is in line with your priorities. I’ve begun implementing it in stages and so far it is helping me be mindful of my priorities. Just because something is urgent (bleeding) doesn’t mean it’s important and I need to remember that.

She also taught me a grounding exercise. When I got on the phone I told her I was feeling really spazzy and she did a meditation with me that was really quick and powerful. She’s offering an MP3 of the grounding meditation on her website for free if you click the link. I love a guided meditation and am totally keeping this on my phone for when I need a 30 second reminder that I’m right here, right now, one with the universe.

Dara and I usually talk about our sessions afterward–highlights and tools. She got a tool to work on for homework about how she responds to my emotions. I have really Big Feelings sometimes* and my face is a billboard–I usually don’t want to express myself right away but I can’t help it! Often what I feel immediately isn’t what I feel ultimately once I’ve had time to digest my reaction. My emotional reactions have historically been very difficult for Dara to handle, as she hates disappointing me or hurting my feelings. This has been difficult for many of my past loves.

20140213_111246I thought it was important to wear something cute to chemo.

Christine suggested a tool she calls “Holding the Bucket” where Dara doesn’t actually have to do anything but witness and recognize my feelings. She doesn’t need to take them on or feel bad for hurting me. I actually love this tool because it gives me a chance to have my Big Feelings and later apply the tools I have to respond instead of react and engage in my process without worrying about her reaction.

“Holding the Bucket” helped Dara prepare for a difficult conversation she wanted to have with me that we did some more work on getting geared up for during our third session. Dara said it helped her see that she didn’t have to take my feelings so personally, since they were about me and my process not necessarily about Dara.

Dara also told me she had been triggered by something that happened between us the night before this session. It was a relief to be able to talk to someone who was such an impartial party and a great listener.

I am really enjoying my experience working on my relationship with Christine’s help. I was pleasantly surprised at how skilled she is at working with folks on an individual level. She works with singles, couples and poly permutations. Experiencing how she is able to guide me one-on-one, though it’s centered on things coming up in my relationship, definitely enforces how awesome she is with singles looking to break down their limitations on finding and experiencing the love relationships they want.

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Christine offers a limited number of free introductory thirty minute calls every month. Twelve of you signed up last month. If you want to try her out, click here and sign-up! You’ll get to know Christine and find out if she’s a good fit for you, as a single, couple or poly permutation! (Even though she’s a “Lesbian” Love Guru she actually works with all gendered folks on all parts of the gender and sexuality continuums.)

*In my natal chart I have a Scorpio Moon.

2014-01-23

I Got Back Together with My Ex and Started Relationship Coaching with the Lesbian Love Guru

This is the first entry in a series about my experience with Relationship Coaching with Christine Dunn-Cunningham, the Lesbian Love Guru. Follow the lesbian love guru tag on the blog to catch all the entries!

In November of 2012 I started dating someone who I thought was just going to be a friend with benefits. That turned into a super deep connection I wasn’t expecting. Neither of us did. I went with it and we fell into a “thing” we were calling “keeping company,” a delightfully old fashioned term she picked up from her uncle’s description of his courtship of her aunt thirty plus years ago. We had a lot of fun together but ran into a lot of static around a few areas, including communication. It took me until months after it ended to realize that how disparate our semantics often were. She would be saying one thing, using the same words I would use, but mean something completely differently than I was understanding. Like we’re both calling something an apple but really I mean a peach.

8868390850_f762dea0b1_oLast May. Photo by Grace Chu.

Things ended at the end of March when the fact that she didn’t want to be in a relationship, and hadn’t wanted to be in one in the first place, meant we needed to break-up. In our first iteration, things were just always so hard for us together emotionally, and when you don’t want to be in a relationship you don’t want to do the work to be together. She was also preparing for an epic, possibly forever, road trip. Selling all of her possessions, getting some part time consulting she could do remotely, and staying with loved ones a few weeks at a time. A life in an RV I’ve been visioning for a long time, a tiny version of which I took in 2011, but she was going solo.

I had thought we could eventually transition to long distance in some way, and we fell back into an “ambiguous” relationship status within three weeks of breaking up. Eventually that fell apart, too, she left town and I thought I’d never talk to her again. By the end of that ambiguous period I had my own reasons for not wanting to be in a relationship with her. Our mutual frustration lapsed into a long period of radio silence.

I recognized that the grief I was feeling about the break-up was incommensurate with the loss. I started doing some spiritual work through the help of Katie at Empowering Astrology. She helped me cut emotional cords and end what she described as a karmic cycle Dara and I were in.

Cut to October, when we had a pretty organic reconnection. She was back in NYC for a couple of weeks and we met-up and made peace. I thought maybe we could try “benefits without friends,” as a way to just focus on what always worked with us. (Sex.) I could slot her into my life the way a few treasured friends have; when we’re in the same town we sleep together if our relationship statuses allow for it and the rest of the time we’re just casual friends that text every now and again. This was a mildly complicated idea for me because I knew I was still in love with her I just couldn’t be in a relationship with her.

8867777135_1606770681_bPhoto by Grace Chu.

Life threw us a giant curve ball because when Dara was in town she happened to visit her GYN for her annual exam and they found a lump. She was diagnosed with breast cancer after she had gone back to LA (where she was at the time) from her NYC visit. (She’s been video blogging her experience with cancer.)

What does it mean when your ex gets diagnosed with breast cancer? I didn’t know. I knew I was still in love with her, that had never changed. I knew I didn’t want her to be my girlfriend because I’m really dedicated to loving unconditionally and to want her to be my girlfriend would mean I would require her to change… and I didn’t want to do that. So I resolved myself to just be there for her as much as I could be. “Open heart and good boundaries,” became my mantra. A witchy friend even prescribed a tincture of Ocitillo which I serendipitously found in a South Brooklyn apothecary.

We hung out when she got back to NYC to start treatment. It was really great and really easy. We hung out again. And then another time. The quality of conversation, the ease at which we were able to tread topics that would have been hard or hurty before was surprising. I was able to do the things that I liked to do to support her–cooking nourishing meals, being sweet to her, giving massages. As well as encouraging her to relax and do self-care, two things she is now learning how to do post-diagnosis that she’s never prioritized before. The ways in which I thought I needed her to change kind of melted away, and somehow I was different, too.

I was a little confused. I mean, when does your ex become your lover again? She has breast cancer and sex is life affirming. And all the in between moments were so magical. I kept telling my friends I felt like Dara and I were in a different dimension.

There was other stuff, too. I kind of thought I could be there for her but there’s no way she could show up for me, having cancer. And then my December 2013 took hold, three friends passed away in the span of two weeks and the week before Christmas I unexpectedly and quickly had to put my beloved cat ALF to sleep just six months after his brother Bear passed. And through it all Dara was a champion–supporting me, handling logistics, making sure I could bring Macy with me to the vet when I had to rush ALF to the kitty ER for his final moment. After my fiance and I broke up I swore I wouldn’t get serious about someone again until we had gone through a crisis together. Being with Dara in this iteration feels like we’re running a gauntlet–except we’re laughing, holding hands and getting through it in this hopeful and happy way I never knew was possible. Like if we can be this good in a crisis how nice will life be when we can just work and travel together?

1497957_10201768063297968_397615989_oAfter her first lumpectomy surgery (she had to go back in for a reexcision lumpectomy two and a half weeks later) I was in the recovery room with her and we made a game about how silly of a photo we could create with found hospital objects. Together we conceived her Rudolph look.

With the heady mix of old intimacy and new relationship energy, I suggested we might want to get relationship coaching. In fact, neither of us is willing to call each other “girlfriend” yet because we want to eliminate fears of slipping back into old communication patterns and the stuff that was so hard before. It hasn’t happened yet, we’ve done a great job of communicating through rough spots; often we just stop a conversation that feels like it could get sticky and awkwardly back out of it. But it could happen, and a professional might help us set the kind of foundation we never had before.

Enter Christine Dunn-Cunningham, the Lesbian Love Guru, who I met over the summer. I was thinking of working with her as a single person who wanted to open myself up to finding the future Mx. Branlandingham. When Dara and I were starting to become a “thing” again, I read some of the Lesbian Love Guru blog entries (full of incredible tips) and this one about High Quality Quality Time totally helped me. In the entry she suggested having a conversation where you figure out which activities create the deepest sense of connection between both of you. So I had that conversation with Dara one day cuddled up in bed. Thinking about what I needed in a connected moment helped me ask for that the next time we were both having a rough day. (The connected activity for me was praying together, by the way.)

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Hanging out in this week’s blizzard.

The success I had with applying the tips from the blog entry definitely told me that Christine would make a great coach for us. And there’s a huge difference from following advice in a blog and working directly with someone to create a program for you. That’s why I love coaching!

We corresponded via email and she offered me one of her free introductory sessions.

I talked to her on the phone during the session and she explained that her coaching can take different forms. Sometimes she works just with one of the people in a relationship, who then takes the work back and applies it to the relationship. Sometimes she works with both partners separately and sometimes she works with them together. I had originally envisioned the two of us on Skype with Christine building capacity for our communication, but she said she would want to start with a session where the two of us spoke to her on our own to get our perspectives.

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Christine also has experience coaching folks in polyamory, which was great for us because some of our stickiness is around establishing a foundation where we can create some kind of non-monogamy or polyamory that works for both of us. I’ve never successfully done non-monogamy in a primary relationship and Dara has been practicing polyamory for twenty years.

Even though she’s called the “lesbian” love guru, Christine actually coaches folks of all genders, on the trans spectrum and some straight couples. Because at the end of the day, relationships are relationships.

During the first session where we each spoke separately, Christine asked us for each of our versions of our first iteration, what areas of growth we wanted in our relationship and what we were hoping for out of coaching. Dara remarked afterward that she felt “heard” about our first iteration for the first time ever. Christine is really easy to talk to and is great at asking the right questions to open you up.

I’m excited to work with Christine moving forward. I’ll be blogging about the experience so stay tuned!

Christine is offering a limited number of free introductory sessions to readers of my blog (with folks later in the game on a waiting list). The first session is great–it’s a great way to see if she’s a match for what you want. Again, Christine works with established couples and single folks and people of all genders and sexualities (even though the landing page is geared towards women specifically). She’s really great and in that introductory call you’ll walk away with tangible stuff you can apply to your life to help you open yourself up to a great relationship.

Also, this week Christine and I were both featured in the Happy Healthy Lesbian Telesummit. Hopefully you got to catch our interviews when they were released, but if you missed them you can download them as a package (along with a slew of other great interviews about money, nutrition, love, travel, healing and body love). Click here to view more details

2013-12-23

New Episode of the Lesbian Tea Basket! Birthday Cake Tea!

Filed under: Lesbian Tea Basket — Tags: , , , , , , , — Bevin @ 5:54 pm

There’s a new episode of the Lesbian Tea Basket!! I review Birthday Cake Tea from David’s Tea in NYC. It’s a super brandy brand kind of tea store with overpriced tea with fancy things inside it like birthday cake sprinkles (as in Birthday Cake Tea). My birthday is tomorrow so I kind of went for it with this $4 cup of tea. Also I said in the video they were in NYC but apparently they are all over North America.

Check out all the episodes of the Lesbian Tea Basket here! And if you know anyone who sells tea and wants to send me some to review I am stoked to support small businesses on the LTB!


Me and my two Persian Princes, Bear and ALF, who passed about six months to the day apart. ALF was four years younger but he’d never known life without Bear and I think he just couldn’t hang.

This week has been kind of intense. I ended up having to put my beloved cat, ALF, to sleep on Wednesday, and I supported a loved one through breast cancer surgery so it’s been intense. But the super bright spot is I finally got my new laptop that I crowd funded through the support for this website! Thank you all so much who have donated so far. Your words of support have been so amazing and I’m super excited to be able to create more content for QueerFatFemme.com!

If you want to donate the page is here and there are a ton of cool prizes, including lots of services donated by my awesome friends. My hope was to raise $1,000 per year the site has content up and gather funds to be able to continue creating the content I’m super stoked to share with you, including more episodes of the Lesbian Tea Basket!

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