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

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.

2014-11-20

Post Chemo California Road Trip Part One: San Francisco, Santa Cruz, the East Bay and I-5

Our post-chemo trip was postponed a few months, but we made up for it in October during an epic ten day Southern and Northern California road trip exploring new places and visiting familiar stomping grounds for this California native. I chronicle the trip in these blog posts. Check out the post chemo road trip tag for all of the posts!

When Dara was ending chemo we were supposed to celebrate with a family vacation to Southern California in June. It happened that her family was going to be staying in the same Southern California town that my family immigrated to from Canada in 1962 (how random/fated that they picked Oxnard for their trip, though technically my family is in Camarillo, too) and we were going to maybe get them to meet. We had enough airline miles to make the trip free. All the plans were set and we were traveling just as soon as we possibly could after Dara’s last chemo treatment.

Except that post-chemo trip got canceled because Dara’s father passed away very suddenly and we went to Las Vegas instead. The miles tickets were able to be postponed, but we couldn’t change the destination. We had a trip via LAX to take within the next year, and decided that in the Fall we would finally take that post-chemo trip, only by now Dara would have hair and we wouldn’t need to obsessively clean the airplane seats and tray tables with antibacterial wipes. (Chemo would make her immune-compromised for at least a month following her last infusion.)

14806615819_1c38c0932b_oSo many pro con lists were incorporated in figuring out exactly how to plan this epic journey.

When we conceived the new incarnation of this trip we decided that Dara would buy a cheap ticket to Las Vegas a couple of days before I left in order to get her dad’s car so we could save on a rental car. Mercury was retrograde, so our trip was really difficult to pin down. We adjusted dates of where we were going to be a few different times as curve balls came at us and hoped we didn’t annoy our friends too much with furtive texts like, “Oh shit, our cabin trip got changed to Big Bear so now we’re moving things forward two days.” Camping became cabin, destinations were shifted, etc…

The thing about being from California and knowing lots of people from my adult life in California, is that anytime I am there I can see about 2% of the amount of people I want to see. And if I’m there for a holiday, which I usually am, it’s even more difficult to see friends since they tend to be out of town or busy. I try to trust my gut about who is on my mind and hope everyone understands.

Dara had a few work meetings (she’s a consultant in education research, action planning and grant writing) we had to schedule around, and I wanted to make sure we squeezed in as much adventure and relaxation as possible. We’re never going to have a post-chemo road trip again and I wanted it to be fun and meaningful.

15796314336_2223a44853_zDara in her work meeting outfit during our drive up I-5. She’s so cute dressed up for work!

Our first stop after my 11PM arrival to LAX was to Lebec, CA—we were driving up to San Francisco for Dara to have a work meeting early the next evening so we needed to get out of the way of LA traffic. We stayed in a kind of crappy Motel 6 with weird tasting water and had a Denny’s kind of breakfast. A true road trip meal.

I deeply wanted to stop at Harris Ranch for steak but there wasn’t time. I love that place and recall fondly many trips with my mom driving down I-5 to visit my Southern CA family and stopping at Harris Ranch for her to get steak and eggs. (I never liked steak until my late twenties.)

15200027324_724da6cec1_zSidewalk colors in San Francisco.

This time around Dara and I also postponed a trip to the Madonna Inn, which I used to stare at longingly when mom and I would take the 101. I didn’t even know what that gorgeous, huge, white building was on the inside until I was an adult. Staying at one of Madonna Inn‘s gorgeous theme rooms is on my bucket list and I was really sad when timing meant we had to drop it from the itinerary.

Making very swift trips from Southern to Northern CA was a trade-off for how much fun we had in both places. We drove through the East Bay from I-5. We were in a rush, but since Dara got confused by my mention of my home town, Castro Valley, and the neighborhood we were staying in San Francisco, The Castro, I decided she needed to have a trip down the main drag. I’ll save the distinctions for another blog post, but trust me. Castro Valley is not The Castro.

20141015_170248I made this bouquet at a place in the Richmond district of SF called Intention Flowers, which is just woo enough to be perfect. I love arranging flowers.

We were in San Francisco for a day and a half and hit up some of my favorite haunts and explored a few new spots.

While Dara was at her work meeting, I went to Burma Superstar with my friend Sophie Spinelle of Shameless Photography. Shamless just turned five years old! My shoot was one of her first. I adore her and really appreciate friendships where not seeing one another for months or years you still pick back up where you left off.

15371294390_1487444fb6_oI saw Sophie’s adorable apartment and she has a real working land line! So retro!

Burma Superstar has incredible food. Their Tea Leaf Salad is so savory and delicious–it won an award in Sunset Magazine which says a lot. I also had the Basil Chili Pork Belly at the recommendation of the super helpful waiter. FYI they will absolutely lie to you about the wait, though. When they said 20 minutes they should have said an hour or more. But the extra time with Sophie was so wonderful.

The next morning I headed out solo to meet up with my friend Megan Beene at Tartine, my favorite bakery in the whole world. Their croissants are magnificent and totally worth the stomach ache for this gluten intolerant fat femme. Megan got stuck in Bay Bridge traffic so we had fifteen minutes to catch-up before work but the hug was worth it! The Tartine line is always out the door because it is no secret to tourists.

15837592472_49d3c4c004_zWith Jess and California gas prices in The Castro.

I met back up with Jess and Dara (we were staying with Jess and Claire in the Mistro, the area above Dolores Park that is both the Mission and Castro) and we went exploring. I fell so in love with Best in Show a newish pet store with a very well curated selection of dog outfits and accessories. Macy would love this owl sweater.

20141016_223822I also fell in love with Wilbur Milli, their adorable rescue pup who is blind and bumps into a lot of things with his nose. This could also be the trip called other people’s puppies as we hung out with lots of dogs everywhere we went.

Jess introduced us to her favorite store, Local Take. What a treasure trove! Another well-curated store of local artists’ wares, from home goods to clothing. Dara bought a wooden tie that has received much acclaim. I checked in on Yelp and scored us a free stainless steel water bottle which we take everywhere now.

15796337576_f0fbe8b5a6_zDara’s wooden tie!

15634592188_e01d373689_zWe made it a game to take the cutest/cheesiest couple photos during our whole trip. I loved this one in the dressing room at Local Take.

We had lunch at Orphan Andy’s, a charming super gay diner where I tried a pork belly omelette. It was pretty good pork belly, but kind of a weird flavor combination within the omelette.

That afternoon Dara and I took off solo to Twin Peaks to catch the view. I love it up there. Another place that is tourist-central for a reason. So many good photo opportunities.

15820017925_376b5facc3_zStandard Twin Peaks stunning view.

15200576703_e9e5aa5207_zStandard Twin Peaks “I can hold Market Street with my hand” photo.

15634609388_7c9e79de15_zI wanted to sit in the dirt on the cliff to look at the view for a bit. Even a few steps away from the tour busses was more peaceful.

We stopped at Bi-Rite Creamery for ice cream and since it was a cold cold day in San Francisco it was deserted and we got to try many of their flavors without the pressure of the typical line behind us.

That night I stayed in to play Settlers of Catan with Jess and Claire while Dara had another work meeting.

15812384366_1565142e34_zCute Castro Kiss.

We hit the road pretty early the next day to have lunch with my mom and see her classroom (she is a high school teacher and changed schools within the last couple of years) on the way to another of Dara’s work connections in Santa Cruz. Mom took us to the best Mexican place ever, La Piñata in Hayward near the San Lorenzo border. If you’re ever in the East Bay I highly recommend it.

I basically never eat Mexican on the East Coast because the food at La Piñata is what I think of when I think of Mexican and nothing holds a candle to the delicious soupy refried beans covered in cheese and perfect enchiladas I remember from my youth. If any ex-Californians have restaurants they recommend in NYC for Mexican, let me know.

15635185790_3e1e34b821_zOne of our cute couple photo attempts from Twin Peaks.

Dara was meeting my mom for the first time, which meant I picked her outfit. I needn’t have feared, though, since Mom and Dara basically talked education policy the whole time and got along famously.

In Santa Cruz, Dara had an afternoon meeting with a former work colleague and I was going to meet up with a friend of mine at the beach. We could have taken 280 but I am definitely a backroads kind of girl and knew I had to defy google’s directions to sit in traffic on a boring suburban freeway and head through the mountains and to the Pacific Coast Highway. Basically, when in doubt, I take the scenic route and it makes life infinitely better.

15804445536_4986450a6f_zThis is way cuter on the side of the highway than a cement wall and strip malls.

15829649952_3ecedee57b_zTaking a five minute let’s look at the view on the side of the road break.

I met up with Jen Hollywood at Rio Del Mar State Beach. We spent forever trying to find each other because we each went to different spots but it was a wonderful hour long catch-up. We even saw a seal pop its head out of the water! California magic!

20141017_162917Jen Hollywood and dogs!

15642269619_1e17757198_zI did not catch the seal head but that’s where it was, right in the water under the pier! If I lived in Aptos I’d drive the 5 minutes to the beach every day for the sunset.

That evening we stayed with Dara’s lovely former boss and her husband and had an amazing conversation. Their house is gorgeous and basically straight out of a renovation photo from Sunset Magazine, my favorite CA travel and lifestyle magazine. As someone who aspires to be a late in life minimalist, I had to resist the urge to take a ton of photos to put in my vision book. (I try not to scare people I’ve just met by introducing them to my tendency to relentlessly document everything.) Imagine having enough kitchen cabinets that everything goes away and you just have acres of counter space? I am a total city dweller that dreams of pantry space and walk-in closets. Also there is a backyard writer’s house. Dream home!

When I was a teenager I had a couple of friends who lived in Santa Cruz and I have always adored staying there… this just made me even more set on coming back. The forest and the ocean meet-up in this beautiful, peaceful, hippie, woo, place full of birds, hybrid cars and great coffee.

I’ll continue our journey in another blog post about our post-cancer cabin trip to Big Bear!

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2014-05-16

Dara’s Experience During Chemotherapy for Breast Cancer

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

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

14196785121_78d53e8877_zDara’s “Rod Stewart” wig.

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

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

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

During the Infusion

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

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

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

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

How Chemo Feels

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

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

You Kinda Can’t Do a Lot During Chemo

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

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

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

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

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

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

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

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

Fatigue

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

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

Nausea

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


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

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

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

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

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

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

Constipation

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

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

Food remedies we’ve tried:

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

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

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

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

Pain

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

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

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

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

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

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

Emotions

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

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

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

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

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

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

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

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

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

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

12771249484_62ec300a43_o

Hair Loss

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

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

Other stuff

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

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

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

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

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

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

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

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

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

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

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

14013382068_094eaea021_zThe first infusion, singing Poison.

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.

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