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

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!

2013-08-26

Getting a Rapid HIV Test at the LGBT Health Clinic

My straight BFF says she’s annoyed when she gets screened for STIs because it’s often as a result of a break-up and she thinks you should get banged after you get a clean bill of health, as a reward. Except you sometimes get this stuff taken care of at the end of the road because maybe you were cheated on or you realized you had some miscommunications with someone about fluid bonding and probably you should get tested for your own peace of mind. And then there’s no one to bang you when it comes back clear. Just maybe a little bit of relief and an iced coffee when you don’t get a call that anything is wrong.

Herstorically I have gotten my Sexually Transmitted Infection (STI) tests as part of my annual pap smear. And I say annual but I really mean when-I-was-sure-it-had-been-over-a-year-and-I-got-around-to-scheduling-it. So probably ever 18-24 months, unless there was a risk factor situation like a break-up, cheating, etc… I haven’t had health insurance for almost two years and in these lean times I often regret all the time I had health insurance and I squandered it by not doing things as much as possible that at the time I had the financial ability to get done.

If you ask me I'll say yes please to you today. #anicat
My cat, ALF.

I’ve always had similar experiences. Small office, used to seeing straight people, who are monogamous/married/parents or otherwise not particularly sex positive in any way. I have had to explain why I wanted a full panel of STI tests many times. I don’t think you should have to explain why, if you’re at the doctor you should just be able to get tested for what you ask for. It’s mildly infuriating but I’m at a point in my life now where I don’t let it get to me. I just calmly say, “Because I’m a responsible sexually active adult, that’s why, now test me.”

So this time I needed to get screened, I took my uninsured responsible sexually activish* self to the local LGBT health clinic that I feel fortunate to have as a resource. I was curious what it would be like to get screened there, in an environment that is actually sex positive and won’t look shocked when I tell them I’m a lesbian. They even have all of the check boxes about sexual orientation on the intake form. I even felt free to check off both lesbian and queer.

There are no sweet potato chips at meijer
Me, in a Midwestern pharmacy!

After the intake I saw a counselor who asked me a lot of questions I didn’t expect. This was my first experience at a sex positive environment getting tested, I’ve barely ever talked about my safer sex practices in a doctor’s office, let alone at length with a counselor. It was kind of cool, because even if you know all the stuff you think you should know sometimes you wonder and it’s nice to have someone give you feedback.

She asked me some startling questions about what my support system was and whether or not I was suicidal. I didn’t expect it to get into my mental health. But that’s part of the risk factors when doing an HIV screening and they cover their bases at the health center. She asked me if I wanted to have a rapid HIV test, where the results are available that day or if I wanted to do a blood draw. The difference was that the rapid test would only cover me through April, not through present day and the blood draw would cover me through the week prior. I decided to do both, to “cover the spread.”

She pricked me on the finger for blood and it unexpectedly hurt pretty bad. I was bruised for a couple of days. I said, “Ow ow ow, sex hurts.” Because I make a lot of jokes when I am feeling awkward.

After my poke test, I went in to see a doctor for blood draws and urine for everything else.

Macy.
My dog, Macy.

I didn’t schedule a pap at the same time because I was afraid I couldn’t afford it and there’s a sliding scale that the clinic doesn’t determine until you go in. But the doctor suggested I come back to do a pap because I had an abnormal pap two years ago. Callen Lorde is now suggesting paps every five years based on the CDC’s recommendations about waiting up to five years for a pap smear, but not if you’ve had an abnormal screening.

I had to meet with the counselor again, once all of the blood was drawn, to go over the results of my rapid test. It was nice to get the results in person, since usually test results are “if you don’t hear from us it’s clear.”

I made another appointment to go in for the pap (now that I knew how much it was it was significantly less scary financially) so I scheduled my follow-up results appointment for the blood draw with the same counselor. The pap was interesting because the new doctor was a lot more brusque and not compassionate in any way. I have a lot of coping mechanisms around the medical industrial complex but times like that, when your doctor is kind of cold and not very nice about you not having prior medical test results with you (no one asked me to bring them in), it feels extra vulnerable when you’re doing a medical exam that is as personal as a pelvic.

Also at that visit I had a new weird interaction about weight at the doctor’s office. No one mentioned my weight at all except when the nurse asked me how much I weighed last time I weighed myself. I had a break-up (I usually can’t eat much when I’m devastated) and I’ve been doing this anti-candida eating so I’ve lost some weight and I’m at a pretty low number for me. I told him the number without the background and he looked me up and down and said, “I don’t see it.”

It was weird. Like a backhanded compliment of “Your number is high but you don’t look like you carry that much weight.” I used the moment to casually say, “Everyone carries weight really differently, it’s impossible to eyeball someone’s weight.” But still, so weird, that I’m at this low for various reasons that aren’t really by choice and he’s indicating the number is still high. But luckily he didn’t tell me I had to lose weight or die or anything. Just such a weird interaction. Can’t just getting my weight be the only conversation we have about it? Or can it be accompanied by the health practitioner asking, “Do you have any concerns about that number?”

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Me with my friends’ adorable baby wearing pants as a hat. Maybe when she’s older doctors will tret the whole patient and not just numbers on a scale. Photo by Suzanne.

I’m still waiting on those results and hoping the pap finds nothing abnormal. I hope that writing this up helps encourage other folks who need to get screened (or have been nagging themselves about getting screened) to call up wherever and make it happen. I find these things much less scary when I know what’s going to happen.

I also wanted to pass along this personal narrative from Scarleteen about safer sex practices amongst folks who have queer sex, it touches on a little how-to, barriers to talking about safer sex and advocating against the invisibilizing of STI risk amongst female assigned at birth folks who have sex with other female assigned at birth folks.

*When the nurse asked if I was sexually active I said “sorta.”

2010-04-22

Allergies!

I have said before that vulnerability is a sign of strength. Through my sneezy haze this morning after a fitfull night unable to breathe, I asked the twitterverse for everyone’s favorite allergy tips.* Tonight’s trip to the coffee shop for the third cup of the day (so tired and woozy from congestion and meds) confirmed that I am not the only sneezy, sniffly mess in Brooklyn.

I am still fairly new to seasonal allergies. They started a three years ago for me and for awhile I thought I was just allergic to my office in North Jersey because I would drive out there and develop a bad sinus headache. It occurred to me it had more to do with the time of year and the density of flowering trees than a dislike for office parks and fluorescent lighting.

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Suggestions from the twitterverse:

1. Zyrtec-D: Jessie Dress suggested that it takes about three days for it to really work. I am trying this now, the 12 hour kind, first thing in the morning. Sarah Biz thinks that Zyrtec with no D at night is perfect for her. She finds the D drying. I know I need some preventative sudafed to keep me from getting a sinus headache.

2. Alavert D 12 and Claritin work for other twitter followers. I couldn’t find the former at CVS today.

3. Taking lots of Vitamin C is the suggestion from Golda at Body Love Wellness. She says inundating herself with C is better than anti-histamines. I am still on my grapefruit a day kick and now adding emergen-c early in the day to supplement my nighttime multi-vitamin.

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Cherry trees along the esplanade at the Brooklyn Botanic Garden.

4. Tylenol Sinus. My mom taught me this for sinus headaches when I started getting them. My mom is extremely scent sensitive and has had terrible allergies for as long as I can remember. I couldn’t even start wearing perfume until I moved out of the house, and forget about incense. Tylenol Sinus is pretty much the only medicine that works for my sinus headaches.

5. Jacq from Sugar recommends acupuncture. I know a lot of folks who swear by it though I have never tried it. I am likely to start soon if these allergies stay crazy. I’ll go see Geleni at The People’s Acupuncture of Brooklyn. Everyone I know is going to her and she is reportedly quite good.

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6. My friend Sophie swears by Counter Attack. You can get it in the Whole Body section at Whole Foods or from Amazon. It has worked for me to stave off colds, so I am hoping it can work for allergies. I’m using it as part of the Vitamin C assault.

7. My mom also told me about this sinus rinse thing she and her wife are huge fans of for preventing allergies. I did it tonight for the first time and it feels hella weird but my sinuses felt so much better afterward. Right now I am so hell-bent on feeling better I’ll try anything.

8. Local honey. My yoga teacher, Jyll, tipped me off to this for preventing winter colds, but apparently it also works for allergies. You can get it at the farmer’s market.

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Sam, my big sis from my sorority, enjoys Lebanese desserts in Astoria, Queens. There is a lot of honey in those desserts, though usually I just have a tablespoon of local honey on my oatmeal.

I am trying to be the kind of person who takes action instead of complaining, so I feel my multi-pronged somewhat scattershot attack on allergies at least makes me feel like I am doing something instead of just suffering.

My humidifier is set up and ready to go to help me sleep a little better tonight. If you’re out there suffering from allergies, consider me your sister in the struggle. Let me know what helps!

*Last year I did a terrible job of keeping track of what medicine worked, so I have all of these half empty boxes I am dabbling from. This past week has proven that Claritin with no sudafed does not work for me. Now I am going to just put that box in the giveaway pile.

2010-01-25

I Try To Love Myself As Much As She Loved Me

I met Liz when I was 11 years old, when she decided to marry my absentee father.

Dad and Liz got engaged 9 days after they met as adults. They both grew up in the same mid-size city in California’s Central Valley and were high school classmates. An accident at the factory Dad worked at brought him to the emergency room where Liz was an intake clerk.

Once they were engaged, Dad called me to tell me about it. I remember speaking to Liz on the phone, she was so excited to finally “have a daughter”. She said it over and over again, that she’d always wanted a daughter.

Liz had two sons, 19 year old Richard Luke was living in Germany with the army. (I could never wrap my head around why that kid had two first names.) The youngest, Shawn, was almost 14 still lived at home. My Dad moved in with them right away.

At this point in my life my dad was intermittently in the picture. My parents separated by the time I was 15 months old and my mom worked really hard to make sure he had a presence in my upbringing, even though we lived two hours away in the Bay Area. My mom ran out of steam covering for my dad’s lazy parenting by the time I was 6 or so, and I hadn’t really seen him more than a couple times a year. The logistics of getting a kid for a weekend when you live two hours away is a little complicated for someone who doesn’t make a lot of money and barely pays his child support as it is.

By the time I was 11 I was horribly shy. I was always a fat kid and being a fat kid turns from cute to, well, graceless around the Tween years. Of course they didn’t have that cutesy word “Tween” in the 80s, back then it was just fat and awkward.

I was well-aware of my fat by then, everyone in my life teachers, peers, relatives and my beloved television wanted to remind me of the fact that I was fat. I was a total bookworm. In books I didn’t have to see the differences so starkly between me and the main characters. I could easily blend into the Baby Sitters Club. I always identified with cosmopolitan native New Yorker Stacy. She had fluffy blond hair and good fashion sense.

In real life I had fluffy golden brown hair with streaks I got in the summertime at camp. I longed to be normal and thin.

Liz was fat, too. Not just sort of in between fat, either, like my mom and other female relatives were at the time (though now, of course, most of them are around my size). She was short and round, with a round face, black curly hair and a mouth that was always smiling. She was half Italian half Mexican and very girly.

The first time we met, Liz was ready to be a huge part of my life. I was mistrustful and didn’t understand why she loved me so much already. I was used to adults liking me, since as an only child I learned to socialize well with grown-ups and I was very bright. But the way she just immediately loved me, in that I-loved-you-before-I-knew-you way that parents talk about felt so weird. As I continued into adolescence and hated myself more and more, the more suspicious I was of her unconditional love.

My mom wasn’t what I would call emotionally nurturing. She was a stressed out single mom putting herself through undergrad. There was always a contingency and a reward to meet. Usually it was “get good grades and you’ll get this” and “lose weight and you’ll get that”. I was exceptionally good at the former. The fact that Liz was so proud of me regardless of my latest accomplishment felt bizarre. My weight was never an issue.

She had lived in the same town almost all of her 40 years. Everywhere we went when I visited she either already knew someone or got to know someone new. She would always introduce me as her daughter. I would blush when she said this because I thought it wasn’t true and it never made sense to me. I also felt a little weird because she was so open and friendly with strangers. She had a huge heart and was extremely welcoming to strangers. She was proud of being friends with all sort of people, including a big biker crowd from her younger days. I was jealous of her self-confidence.

I didn’t get to go to Dad and Liz’s wedding because of some last minute drama having to do with some friend of the family who was supposed to be my chaperone on greyhound that didn’t work out. I went for Thanksgiving a few weeks later and watched the wedding video so many times over the next few years each frame feels like my own memory.

Her family was huge. Five girls, all fat, most of them had five kids of their own. Everyone would gather at Liz’s mom’s house the day after Thanksgiving to make tamales. It was a huge ordeal, making hundreds of them, with many different stations going at once and different groups responsible for different parts of the assembly.

The house was cozy and humid, smelled sweet with a tang of chili and meat and filled with talking and laughing. I was placed in the masa station, spreading a white dough made from cornmeal dough, lard and salt on the insides of damp corn husks. Liz and one of her sisters or her mom would put meat and an olive inside each one. One of the kids would fold them into little pockets. They would then go into a steamer for awhile and then placed into freezer bags by the dozen.

I remember my step brother Shawn complaining that the other kids in the family had to be teenagers before they got to spread the masa, but somehow I was the exception. Liz ignored his complaint, and I kept assembling tamales.

They treated me like one of their own, and I came back year after year with Liz to spread the masa.

My visits to my Dad increased exponentially once Liz was there to motivate them.

Liz loved to go garage saling, where she taught me to haggle and bought me lots of stuffed animals I didn’t need but I certainly wanted. We would pile into her car with her friend Terry, who was a little fatter than Liz. I remember one time Terry pulled out a seat belt extender so that she could use the seatbelt in the car, they were both very excited that their older cars with seat belts made for very small people were just a little bit safer for them.

We spent a lot of time crafting. She would set me up with a cross stitch or a beading project and we would sit at TV trays side by side watching TV and laughing. When I let my guard down around Liz I felt very comfortable. She talked about what it would be like when I had babies and how she couldn’t wait for me to have a daughter. I was just being adolescent and contrary when I claimed I would refuse to let her put my babies in ruffle butt tights.

She loved clothes. I remember when she got approved for a Lane Bryant credit card she was ecstatic and immediately maxed it out on new things from the catalog.

She loved the color pink. She collected elephant everything. Whenever I was at a loss for what to get her for Christmas I would get her a blinged out elephant knick knack and she would love it.

Richard Luke got married in Germany. Liz was devastated that she couldn’t go to the wedding, but a transcontinental trip was entirely out of the question financially. I promised she would have a lot of fun at my wedding and was already working out in my head how I would handle the mom/step-mom dynamics.

Liz told me about her ex husband a few times. Richard Luke was born out of wedlock and later she married Shawn’s dad. He was abusive. Her struggle to leave him was epic and she had to work her way off welfare.

Liz and Dad loved each other a lot, that was clear. My dad hit my mom, which was why she left. I am unsure whether or not Dad was ever violent with Liz, though I remember a screaming fight I witnessed when I was 16 or so that drove Shawn out of the house with me in hot pursuit. From what I could tell they mostly fought about money and Dad’s drinking. They also expressed their love pretty regularly, too. She saved one dried flower from every bouquet Dad ever gave her in a jar under the TV.

While Liz was outgoing and confident, and dressed as well as she could manage with not a lot of money or access to cute plus size clothes, she did talk about losing weight. Not as regularly as my mom, but of course I didn’t live with her so I’ll never know for sure. She had a lot of chronic health problems that her doctors always blamed on weight. She was regularly dealing with asthma, bronchitis, diabetes, among other things. She also complained of aches and pains and trouble walking.

Being fat was hard for her, too. She didn’t always fit in seats. Had she ever made that transcontinental flight she would have been in a lot of pain from the armrests.

I remember one time we were in our pajamas and I saw her belly peak out from under her loungerie. It had a dimple in it, below the belly button. I thought it was so odd and was slightly horrified. I developed the same dimple myself by the time I was 20. I hadn’t been exposed to naked fat women before, I didn’t know what that kind of flesh was supposed to look like.

She dealt with being fat very differently from my mother. Mom switched us to nonfat milk really early in my childhood, I don’t remember ever having butter instead of margarine. We stocked our pantry with diet food. Things could have tasted so much better if we focused on moderation, vegetables and using real ingredients.

Liz would cook full force with fat. One time when I saw the giant bucket of lard from the tamales I was shocked. But she never really stopped, and her cooking was incredible. I think she would occasionally diet.

Around 1996 the drug Fen-Phen started making its rounds. It was a weight-loss drug made from fenfluramine and phentermine. It was heavily marketed and people were seeing pretty immediate results. I was about to graduate from high school and my mom suggested I start taking it. I blew her off, as I often did, especially about weight loss stuff.

A year or so later Liz told me over the phone that she had been taking Fen-Phen to help with her medical issues and was losing weight pretty quickly. She was excited about that.

In early 1997 valvular heart disease and pulmonary hypertension started showing up, mostly in women who took the drug. It was taken off the market in September of that year. While I was in college I saw Liz and Dad less because I was busy with school and my social life. She stopped taking Fen-Phen and I never did notice any difference in her weight.

In mid-1998, toward the end of my Sophomore year of college, I went to visit Dad and Liz for Dad’s graduation from Community College and his 50th birthday. It was really important to Liz that I be there. We did all of our regular stuff, crafting, hanging out. She told me that weekend she was trying to get in touch with the child my Dad fathered in high school but was put up for adoption, and that Dad was putting up resistance.

Just three months later I was coordinating move-in at my dorm. That morning I had been getting ready and looked outside my window at the sky and felt really peaceful and happy, which was unusual for me at the time—I was starting to come out of a several year long depression and was taking steps to stop hating myself. I got a message from my mom to call home right away. When I talked to my mom that night she told me that Liz had died.

Liz woke up, kissed Dad and went out to the living room. About and hour later he got up to join her. She was on the couch, dead from a heart attack. She was 48 years old. That week she had been complaining that her asthma was acting up. Her heart was weakened. Probably from the Fen-Phen.

I was devastated and in shock. Mom offered to come with me to the funeral but I said no. I didn’t want to add to the confusion and weirdness with the ex-wife dynamic. The weekend was bizarre and hard. I had never been to a funeral before. My dad was drinking again. He had me sleep on Liz’s side of the bed, and I didn’t know how to say no, that that was weird and bad boundaries and I didn’t want to sleep on my dead step-mom’s side of the bed.

We’re all Catholic, at least mostly. The Rosary was the night before the funeral and it was open casket. I walked up the aisle and burst into hysterics that I didn’t want to see her like that. My Dad’s mom, who had been really cruel to me as a child, was the nicest and most nurturing I’d ever known her to be that night. She brought me into the pew and told me I didn’t have to see her like that if I didn’t want to.

The mass was big and weird and there were hundreds of people there. I felt this obligation to stay with my dad, even though I probably should have just gone with my grandparents. His house became this huge party with all of this drinking and pot smoking and at 19 years old I was still pretty square and still wasn’t drinking a lot in college. I felt uncomfortable, unsafe, and scared. I didn’t know how to articulate what I needed because I didn’t know how to advocate for myself.

I went back to school. I tried not to deal with it. I did pretty well.

I am angry that I only knew Liz when I was an adolescent and didn’t appreciate her the way I wish I had. I am angry that her physical heart was affected because her doctors treated her weight and not her symptoms. I am angry that Liz never got to go to any of her children’s weddings. I am angry that Dad never joined the class action suits against the makers of Fen-Phen. They paid out over $14 billion in settlements. But at the same time I certainly didn’t want to have to think about it or interact with him that much to do the work of making it happen.

Over the years little things occur to me. The way Liz always wanted to make people feel special and at ease, the way she was welcoming. I get that from her. I loved that about her. Her huge metaphorical heart cannot be weakened by a pharmaceutical company’s greed and exploitation.

I think about the plus size resale store I work in now and how much she would have loved it. I work hard at body liberation activism because I want to make it easier for people to live in this world and I don’t want Fen-Phen to ever happen again. I think about Liz every time I see an elephant tchotchke. I can’t wait to have a daughter.

*I feel compelled to share this story now, as an initial draft, as a way of honoring Liz and bringing her into my adult life. Especially in light of the perpetual crop of weight-loss drugs on the market, the fact that I keep hearing ads for them on the radio and in side-bars on websites, and the fact that on Friday the LA Times and New York Times reported that the FDA in America chose to recommend “stronger warnings” on the sides of Meridia bottles while the European Union recommended a ban of the product. I guess posting this story is my way of turning my rage over that news into productivity.

2009-12-01

World AIDS Day & More on Medical Self-Advocacy

You know how weird it is to think that I have never known a world without AIDS? I remember growing up and it was new and scary, and with family friends in the LGBT community* I always knew about it in some way or another. It is weird to think about it now as having been around for almost three decades, which is actually a really long time.

When I was about five my single mom and I lived with two gay guy roommates. One of them was the only person I would let brush my hair because I had such a tender scalp. I was completely unaware of it at the time, but they both tested positive. I remember one of them moved away to live with his mom in Texas. I didn’t know at the time it was to be in hospice.

Bevin age 6
Me, age 6, in front of that house not long after Rob moved away. I need to get my mom to scan me some photos from that era.

Not everyone is touched by HIV or AIDS directly, but I think everyone can do their part to create awareness, know their HIV status and practice safe sex.

You know sometimes STD screenings don’t automatically include every STD? It’s frustrating because I go to a sort of run of the mill not homo GYN and I am sure I am one of the only unmarried and queer patients. I always have to give them a laundry list of what I want to be tested for.

Sometimes it is weird to put words to asking for an HIV test, but it’s really important! I know WAY too many people (myself included) who have been cheated on in the most heinous and unsafe of ways. It’s really important to trust no one but yourself when it comes to getting tested.

IMG_0721
Here’s a picture of me in an actual moment where I was unaware of the cheatin’ going on! Accompanied by Zoe, who had that fateful come to Jesus moment with me in a car on the way to the Paramus mall about confronting things.

I don’t ever want to think when I’m monogamous or whatever that there’s even a possibility my partner could have given me an STD but it’s real. Get tested, for everything, once a year. Think of how nice it will be to KNOW that your partner didn’t give you an STD that calendar year!**

Also I know way too many people who have died from ovarian cancer and other lady parts cancers. Get screened for cancer (as much as they can), too. The earlier HIV, cancers and other diseases are found, the easier they are to get treated.

This is also especially important for people who are not of normative bodies and genders. It’s really vulnerable to go to a doctor when you’re fat and are going to get the fat talk or when you are transgender and are going to get the [insert laundry list of fears, here]. Bring a friend who can be your advocate and hold your hand. It’s really important to get your bits checked no matter what kind of bits you have and how they line up with the outside.

Take it from someone whose routine trip to the GYN turned into a kerfuffle of mis[fat]diagnosiswhen a doctor is supposed to be treating you for something and launches into the fat talk you can politely tell them “I am not here to discuss my weight with you. I am here to discuss my bits, my HIV status and whether I am at risk for cancers.” I like to have a mantra to prepare ahead of time.

And, luckily, since that terrible trip to the GYN, I haven’t had a fat hating doctor. I am about to get health insurance again and the first thing I plan to do is get my bits checked, my blood drawn and my HIV status confirmed.

If you’re uninsured and lucky enough to be in a town with an LGBT clinic, you can sometimes get low or no cost HIV tests and other exams. Use the resources available to you to keep you safe and up to date about your status. Those resources weren’t there when our loved ones started getting sick, but they are there now.

Do something to revere their memories.

*My mom, who is now Lesbian identified and gay married, was in and out of the closet a couple of times while I was growing up.
**I can imagine the girl talk emails that ensue. “OMG y’all, I didn’t get an STD from my monogamous partner! Woo hoo!” Considering the amount of girl talk emails I have gotten that had a different result.

2009-04-15

Help Heal Fran for Leah’s Birthday!

My life looks like this: I plan an organize an event that takes literally hundreds of hours to put together, during lulls in the event I am surfing CraigsList on my phone’s tiny internet for apartments in Brooklyn. Because all of my stressors in my life are hitting a great glitter douche* of crazy all at once. I’ve seen 18 apartments in the last week and a half and haven’t found a good one yet. Mostly they are all recent renovations with no space and high rents that want me to be excited about stainless steel appliances. Seriously, all I want is some good counter space in the bathroom, closet space and a few windows. My future roommate agrees.

FemmeCast’s Femme Shark Correspondent Leah Lakshmi Piepzna-Samarasinha came out for a clandestine visit/gig for API month at Swarthmore last weekend and it was a welcome distraction from everything to hang out and do life planning and road tripping with her. She went looking for apartments with me and I caught a bit on tape. (I want to start a video blog but need to figure out how to get the video editing software I need for PC. Eventually.) So here’s a bit of that adventure, for your pleasure.

Also, since Leah’s birthday is next week, she is doing a fund drive for her friend Fran Varian, whose writing is amazing. I can give $20 as soon as my next unemployment check hits, but what I can’t offer in cash I can offer in spreading the word. So if you have $10 to give, please do. I’d love to see Leah meet a fund raising goal for her fierce friend for her birthday.

Hey all

Hope this email finds you well. I’m turning 34 next Tuesday, yay! And
while I am open to give am open to gifts of makeup or books or another
skirt
besides the two miniskirts I wear all the time (I am a size 12-14 in
the ass), what I’m writing to ask is if folks could make a donation
for my birthday
to my friend Frances Varian, who is struggling with late term Lyme
Disease and is literally fighting for her life as an uninsured
working-class queer femme writer and badass.

Some of you know Fran: for those who don’t, she is an awesome abortion
provider, queer femme working-class writer and (can I say it again)
badass. You may have seen her on stage at any number of gay-ass events
in the Bay over the last few years, and she’s a former Seattle
national slam team champion. You can see some of her work here:
http://www.franvarian.com/, and here:
http://www.hipmama.com/node/30311.

Fran has been really sick for the past four years. What started out as
fatigue, muscle weakness and getting sick at the drop of a hat only
recently got
diagnosed with late-stage Lyme Disease- and when I say only recently
diagnosed, I mean that Fran fought for two years in SF to get anyone
to look at her increasingly frightening symptoms. Fran originally
believed she had fibro, and we were some of each other’s first
disability buddies. However, my health got better and hers got worse,
to the point where she now is dealing with heart problems, constant
nausea, spasms and seizures and worse stuff. She was diagnosed,
finally, a year ago with Lyme, an autoimmune disorder that is
having critical effects on her health, and which is difficult to
treat, both because of the lateness when it is finally diagnosed and
because of a medical industry that dismisses many patients who have
it . Late stage Lyme works a lot like late stage syphyllis in terms of
symptoms- some folks go into dementia as the spirochites that cause
Lyme go into the brain. Others die of heart failure in their 30s as
they penetrate the heart.

Fran is literally fighting for her life, as an uninsured woman with a
disease that is misdiagnosed and dismissed throughout the medical
world. Her fight has made her move to Durham, NC to live with her
partner, because it’s cheaper than the Bay and she’s found doctors who
will help her- a choice that carries the cost of isolating her from
the community that loves her. She’s had a PICC line installed in her
arm since last fall, and is in the middle of an intense course of
intravenous anti-viral and bacterial treatment that her docs say is
her one shot of beating this. And, she’s paying for the whole damn
thing out of pocket.

What I really want for next year’s birthday is Fran healthy, able to
move back to the Bay ) and reading poetry next to me. What I really
want is for my friend to not be another story of a working-class queer
femme fireball who died a preventable death of an immune disease in
her 30s- like Heather McAllister, the amazing, beloved queer fat femme
icon, who died of ovarian cancer as an uninsured woman in her 30s two
years ago. As a chronically ill woman who knows that I have lived and
gotten better because of the support and love of my community, I am
reaching out to my community to help my friend.

Anything you can spare will go to help Fran and her partner Dante to
pay for her treatment. You can donate here:
http://www.helphealfran.org/
My goal is to raise $2,000 for Fran in the next two weeks, which will
enable her to pay for her next round of treatment.

Please donate on her website, but if you don’t mind dropping me a note (brownstargirl at gmail dot com)
letting me know how much you were able to give so I can track how much
is going to Fran, it would rock.

In love, lipgloss and revolution,
Leah

*Glitter douche is a word I just learned from Cherry Poppins. Used by Kings N Things in Austin, TX, it describes the act of anything that “is that crucial moment in a performance (often drag pieces) when you grab glitter and toss it out over the audience. The glitter could also, say, come from an object, such as an umbrella opening dramatically and showering glitter out over the stage. We also occasionally make use of ‘confetti douches’ or ‘rose petal douches.’ Regardless of the material used, a gender performance show wouldn’t be complete without douching of some sort.”

Here I am trying to picture all of the moving parts of my life as little pieces of glitter flying all over the place. Instead of a shit storm, which is sort of what it feels like.

2009-01-05

Medical Self-Advocacy for Queer Fat Femmes

There is so much to say about Queer Fat Femmes and medical self-advocacy. In honor of Lesbian Health Bloggy Such A Day or whatever (thanks to Sinclair for bringing it to my attention and for the gorgeous masthead up above my entries), I am going to relate a little story and some free advice.

In early 2007, right after the passing of one of my heroes, Heather MacAllister, from ovarian cancer, I had my Heather MacAllister Memorial Gyno Appointment. This is the missive sent out from her loved ones by her side at her death:

Heather’s last wish for you, what she wants for us all, is to love each other, and to love ourselves. To take care of our minds and bodies, without fail and against all odds. And to know, beyond doubt, that we are all beautiful, amazing beings. Never forget. This is what she lived for. Take care of yourselves, you beautiful beings.

I felt it was imperative to look after my health and to take steps to prevent the stuff I was able to prevent. Despite being covered by insurance for the duration of my twenties, I hadn’t seen a gyno since grad school, mostly because I was really lazy about finding one who I felt safe with.

I did some research and made an appointment. The doctor was fairly nice and the process was streamlined, but I was a bit taken aback that she started up with the fat stuff* immediately. In fact, this was a new tactic. “You are fat, I think you might have a wheat allergy and I am going to run a blood test.” And almost immediately blood was drawn and I said meekly Uh, can you also do a full STD screening? That’s why I’m here, too. You know, gyno health.

Two weeks later I got the dreaded phone call from the gyno office requiring me to come in for a follow-up (and another $50 co-pay). She looked at me gravely. “It says here you are allergic to wheat and corn. You need to stop eating those immediately and start losing weight. You might have a heart attack.” And she actually said to me, “You have such a pretty face, you’ll look so gorgeous if you lose weight.” I was in tears and thinking God, are you my mom circa 1994?

I demanded a copy of the results so that I could bring them to my fairly fat positive primary care physician and show to one of my besties, Kelli Dunham, stand-up comic and published nurse.

My PCP recommended I get a second opinion from a gastroenterologist. Since this was the American health system in the Hateful Bush Economy (TM), this all took place over the course of months, since it took forever to get appointments and cost me $50 a pop.

The gastroenterologist did an upper endoscopy, a colonoscopy and another full blood work-up. In the meantime, I gave up wheat and corn and later dairy. Seriously, it is extremely hard to eat without wheat or corn, as corn is in pretty much everything, especially gluten free stuff. I remember declaring to my besties When they tell me to give up bacon I’m just going to go for a diet of supplements.

To top it off, the last part of this eight month ordeal occurred while my fiance and I were breaking up. Imagine being told “Hey, I think we need to move apart for awhile on account of my intense depression” the day before you have to have a colonoscopy. I was wheeled into the operating room wracked with sobs because of the whole “emergency number” question.

But, the great news is that I am not allergic to wheat, corn or dairy! That gyno was a quack and I am totally glad I advocated for myself and got that second expensive opinion. And it turned out my gastroenterologist is in the same office suite as another gynocologist. While I was waiting for my many appointments, I read the complimentary cards from her clients and I decided to do my next year’s gyno screening with her.

I was really glad I did. I had to ask them to do a full STD screening and they seemed surprised–I was a 29 year old sexually active lesbian and they didn’t seem to jump right to the conclusion that it meant I should be screened.** Despite that, I still felt cared for and my weight was not an issue.

I published Episode 4 of FemmeCast about the concept of Health at Every Size, which really addresses fat people and the consequences of un-fat positive diagnoses. I’m sure we’ll come back to it again in future episodes.

Fat phobia from medical professionals can itself be a health hazard in that it inhibits fat people from seeking out routine and other medical care that they need.  All people, regardless of size, shape, age, race, class, gender, ability or sexual orientation deserve to be treated with dignity and respect in a health care setting and to have their health care needs addressed in ways that make them feel safe and comfortable and not attacked for who they are.

The day that I found out that the wheat and corn allergies were misdiagnosed, I had a tasting fleet of beers, a cupcake and really hot rebound sex. I think Heather would be proud.

*Typically this involves a medical professional saying “OMG YOU ARE FAT YOU ARE GOING TO DIE ONE DAY ON ACCOUNT OF YOUR FAT.” I will note that almost every doctor I have encountered who told me that said “Otherwise you are in perfect health.”
**Dude, always always ask your health providers to screen you, just to be safe.

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