Hair

I published this story on medium because while it is My Story and a blog is a place to keep my stories, it is not a blog.

Hair is a nonfiction essay that I wrote as part of a Creative Nonfiction class in 2017. It’s incredibly personal, but it’s also a piece of writing that I’ve revised, workshopped, and revised and revised again. I had originally planned to try and get it published but after my first rejection and getting told “we get about 100 stories today” I realized that I’d most likely have to change the story to have a chance for publication. No place that is getting 100 stories a day and choosing about 1 a week to publish is reading all of those stories. Most likely they’re reading a few lines and if it grabs them they continue and if it doesn’t they don’t finish it.

I purposefully chose to give Hair a slow burn as an emotionally heavy-hitting piece and I realized that was more important to me than publishing it through someone else.

So I put it up on medium which also allowed me to embrace the multi-medium side of Hair that I’d written it thinking of. You’ll get the images to see the person behind the words in specific places and times in my life and you’ll also get the songs that connected deeply in some of those moments.

The first story block is below and the full story is here.

Five Weeks in Vermont Postpartum

I thought we were crazy. Sure it sounded good, leaving New Orleans when it’s blazing hot to be in Vermont at the B&B (as we affectionately refer to my parent’s home), but packing up a toddler and a 3 month old baby was insane right? My motto with baby #2 was ‘how can I make it easier’? Every decisions from doula to dockatot to k’tan to king sized bed was guided by this and here we were, getting ready to leave this carefully crafted nest of comfort with our two dogs and two kids. Crazy.

I wasn’t even sure we were really going to do it. Every time my aunts checked in about our plans so they could meet us there there I’d remind them that it wasn’t in stone and I had Southwest tickets and it was all depending on how BabyG was doing. She was having some stomach issues that had already led to one late night emergency room visit so I wasn’t keen on leaving our pediatrician in another time zone. But I was trying to stay open to it while really being ready to bail at the first sign of trouble.

But somehow through my anxiety and fears I found myself getting on a plane with baby, toddler, and my Dad while A. started his two day journey with a packed car and our two dogs.

I was a wreck. I think we were both wrecked. We had spent the last two months with two kids on two different disrupted sleep schedules and A. I were like two ships passing in the night, occasionally sleeping in the same bed. It was not a good scene. We were exhausted.

And here I was, on a plane, leaving behind my carefully crafted nest to uproot to my parent’s house, extremely jealous that A. was about to have a night without any kids waking him up and two driving days where he could call friends to catchup or listen to books on tape/music to his heart’s desire. It sounded like heaven.

The first days were hard. Nono wailed that the room at my parent’s “isn’t my roooooooooom” and continued with his middle of the night wake-ups that now required A. to go downstairs and comfort him instead of next door. I started work again and had my baby, toddler, husband, Mom, four dogs, three cats, and a chicken in the background, as well as my Dad, my brother, and my brother’s dog intermittently coming in and out. I hopped off one call with co-workers exclaiming “I think my dog just attacked my Mom’s chicken, I’ve got to go!” (The chicken lost some feathers, but was fine.)

The weeks were carefully scheduled to accommodate my work needs and keep Nono busy since he was out of daycare and they flew by.

Suddenly it was time for my aunts’ visit which had seemed so far away, and then that was over too. Suddenly there weren’t weeks left, but days, and then hours.

And then it was the last full day.

Things had calmed enough for me to reflect on things by the end. The time was incredibly precious because of the family time on multiple levels:

For many family members, it was the first time they got to meet BabyG

For me, it was much needed time with Nono after a tough pregnancy made A. his primary caregiver and then the first couple of months kept me very busy with BabyG. Having Nono out of daycare was exhausting, but it gave me so much time with him after not enough for so long. And he is a hilarious and crazy little kid.

The four of us got to be together so much, when Nono was born A. took a month off after my maternity leave ended and I went back full time to an office. This time I used vacation to go back part time for June and I work remotely so we got to have 5 weeks of all of us together

My parents got to experience the amazing changes that happen in one of the early months with their grandbaby, the BabyG who left was a very different baby than when we arrived and they were there for all of the little moments of progression

My parents gave us support and a safe place to be while we figured out how to become a family of four and we got out of a very difficult period, we arrived a bit of a mess and we left ready to get back to our new lives

We got to reconnect with old friends and spend quality time with new friends. There is a big piece of my heart in Vermont with the friends I have there and the friends there span from childhood to college to San Francisco to in the last couple of years of when we’ve become friends

I spent a very important anniversary there. Five years ago I turned 30 and shortly after was diagnosed with some pretty lame cancer. We’ll never know if it was caused by the rhinestone birthday tiara my Mom gave me (I’ve never worn it since and I’ve never had cancer again, so I think evidence is pretty strong), but we arrived about to embark on a new chapter in our life in New Orleans involving kids and house and careers and instead got a frequent flyer membership to the hospital (just kidding, hospitals don’t give membership perks because the American healthcare system sucks). For my specific special snowflake diagnosis, the two significant anniversaries to reach without recurrence are two years and five years. It meant something to spend my 35th birthday at my parents (I think my Mom finally threw out the tiara) and be there with the family I have now in spite of what happened five years ago.

We’re going back in three weeks for a week. But who’s counting?

A Milestone

Yesterday was two years from my last chemo treatment. The week before I had my oncologist appointment that marked two years. Two years is the highest risk for reoccurrence for the cancer I had. I made it.

Once I hit the 5 year mark I’ll really be kicking up my heels (next highest risk),  but getting to two years is huge. I’ll no longer have to see the cancer ward once a quarter, it’ll be down to twice a year. I can breathe a little easier. I can remember a little less.

Thank you everyone who has helped made this difficult road a little easier. See you in 2017.

The Anniversary

Today is the worst of anniversaries. It’s the anniversary of this. There are a lot of potential anniversaries that come from cancer diagnosis and treatment. This is the one that is burned in my mind as the worst thing I went through with the most lasting consequences.

It’s a tough day.

I don’t remember the day of my diagnosis or the day of my first chemo treatment. I could look them up, but they aren’t days that stick out to me. It’s the day that I lost something irreplaceable, had badly advised surgery that’s left me with large scars that I see everyday and multiple revision surgeries. It’s the day that gave me some ptsd anxiety in hospital beds due to the way I was treated in the recovery room and in my care the first night I spent in the hospital.

It’s a tough fucking day.

Furiously Happy art by John Rushing

Nothing Tastes as Good as Skinny Feels

Post written around early May.

I never thought that getting pregnant would make me have more in common with Kate Moss. I’m currently almost 12 weeks pregnant and haven’t weighted this little since high school/early college. Even months of heavy chemo didn’t make me this skinny. It’s darkly funny.

I’m not puking my guts out (although there have been a few times), it’s mostly the hours I spend every day feeling nauseous and mostly being restricted to only being able to eat small meals and then of course having the tiny alien growing inside of me and sucking away my nutrients. That’s all.

A. said I should give Maury a call and pitch a “Pregnancy Made Me Hot” episode. If only my boobs weren’t totally different sizes…

Most of the time I am a sad panda due to the nausea and the inability to even wear a loose waistband because it makes me feel more sick. I can’t wear those skinny clothes I’ve foolishly held onto and let’s be real, post-pregnancy bod is unlikely to go back to hot pregnancy bod. It’s just wasted. I could wear freaking lycra right now and instead of I’m wearing baggie dresses.

I have rare moments where I revel in how skinny I feel. Like 99% of the time I feel miserable, but that 1%! A few moments where I don’t feel completely horrible and get to concentrate on my ANTM prospects. Sometimes it really does feel like good ole Kate really knew what she was talking about. Feeling skinny feels amazing.

I have a flat stomach because of my cancer related surgeries, I’ve never been able to naturally achieve a flat stomach, even when I was a teenager and playing basketball every day. Now it’s even more pronounced due to the baby weight loss. Is there a market out there for this kind of body shaping plan? Botched cancer reconstruction & debilitating pregnancy: how to become the skinnier you! My before photos could be a sad looking healthy person outside and the after photo could be someone posing on a couch (because they’re too sick to stand) in a bikini with the scars out. Instant money maker.

So even though I’ve felt like I’m being tortured, for over a month and a half, daily, at least I look good.

Well other than the occasional pregnancy acne because you know, that’s apparently a thing too.

At least someone is enjoying my invalid status

The Distance From Here to There

I’ve tried not to dwell on the anniversaries that are popping up around me. They’re not on my calendar, and although the scars are always there, they don’t have dates engraved in them, just a general sense of time they appeared. But then there’s social media. Facebook has a nifty feature to look back and see the things that happened on a date all through the years you belonged to the site. You can see where I’m going with this.

Usually it’s fun and interesting because I think I joined in 2004, so there’s a lot of years on there and a lot of different life stages captured that are fun to look back on. But August is a tough month for this, the last week in particular. I don’t re-read my posts because it’s still too fresh, but I have re-read the last couple that were a year ago and it’s a sort of out of body experience.

The person writing them is me of course, but it’s me at my worst/best. It’s me in an impossible situation that is so far from my normal day to day that I can recognize it’s me but it’s a very different me. I imagine that it’s sort of like if you had a baby, you’d look back at yourself in the delivery room and what you did to get through giving birth and you’d know that was you, but the way that you dealt with it and reacted to it is so outside your normal thought and emotional realm that it’s like looking a different person.

I read a couple of those posts and I remember people telling me how strong I was for writing them, but I marvel at how angry I was. I’m still angry about certain things, I’ll let you know if that ever goes away. But there’s a difference between a simmering anger that normally takes the back seat with other life things going on, and a raging fire of anger that was consuming me that I see in those posts. Albeit watered down by pain meds. I have a temper that burns hot and burns out quickly, but in those posts I see someone on fire with no dampening in sight.

Having never lived alone because I stayed with and ended up marrying my college boyfriend, there are few things that make me feel more self sufficient than traveling for work. I have to go to somewhere I’ve never been or am unfamiliar with, figure out how to get where I need to be. Be completely self-reliant while also convincing those that I’m going to see that I’m someone they should rely on and trust with whatever we’re discussing/working on. There’s no one to bail me out or to hide behind. It’s deeply satisfying to succeed.

That’s what I was doing a few days ago when these unpleasant anniversaries reared their heads. I was away from my friends and family, but working 13 hours day and being a BOSS. A year ago I felt helpless and choice-less and so so angry. A few days ago I felt in absolute control and so very capable, and it couldn’t have been a better contrast.

The Spoon Theory aka But You Don’t Look Sick?

This is the best explanation of what it feels like going through chemo. It was written by a woman with lupus and I can’t recommend it enough for anyone looking to better understand someone with a chronic illness or someone going through chemo. It’s been almost 6 months since my last poison and I still have to remind myself that I no longer have to allocate spoons in my day to day.

The Spoon Theory

by Christine Miserandino http://www.butyoudontlooksick.com

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

– Finish reading at: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/#sthash.Gy3hXBcI.dpuf

Thanks to the Bloggess for introducing this.

I Took the Pirate Flag Down

I took the pirate flag down today. I’ve been meaning to do it for a week or two. One day I just looked at it and realized I didn’t need it up any more and didn’t want it up anymore. It was very large and black on my bedroom wall and dominating my space. When I needed to feel more like a badass, more like “fuck the world, I’m still here” it was there. Now life is starting to seem gentler and I’m finding a new way in it and the flag seemed very harsh on my wall.

My birthday was last week and it was weird. Part of the weirdness was I felt like I should feel like it was an accomplishment getting there, but I didn’t, and was annoyed to even feel that way. The after effects of this rough ride are annoying. Now that I’m not putting poison in my body every other week or recovering from surgery I feel like I should be able to be back to B.C. But that’s not the way it works and it’s really annoying/frustrating.

I had a bit of a wakeup call a couple of days ago when I saw this video:

It was hard to watch, but it is also inspiring and a kick in the ass. For most of us, when we hear we need to make lifestyle changes for longterm benefits, we put it off. Or we say “fuck it” and just don’t worry about it. But if I get cancer again in the near future I am going to feel like the worlds biggest asshole for not taking care of myself. I’ve already played the “it can’t happen to me” game and lost big. It would just be supremely stupid for me to go through all this and then not do what I need to do to give myself my best shot.

However it sucks having to make major lifestyle changes. It’s hard. As someone who doesn’t love eating right, exercising, or being the sober friend at happy hour (I have had a year of experience with that off and on now), it’s freaking tough. Then we can add the fact that I’m 31 so this isn’t a lifestyle many friends are sharing and then add the fact I moved somewhere that loves bad for you food and delicious drinks. It just makes me want to burry my head into a pile of pillows and not come out.

Kate Moss once said “Nothing tastes as good as skinny feels.” She was unfortunately wrong. Try Commander’s Palace’s bread pudding soufflé. Or Drago’s chargrilled oysters. Or a glass of good wine after a stressful day at work. I could go on and on…

I gave myself a free pass that got too comfortable while I was going through treatment and the immediate time after because I needed something good. When your bones ache, you’re exhausted constantly, having hot flashes, etc, food was the only good thing I had going because nothing else felt good. Now I’ve got to close the book on indulging myself and accept the fact that I got dealt a bad hand and I’ve got to work with what I’ve got. Folding would be stupid with stakes this high. So the pirate flag has come down.

Just to show it’s not all hard times.

Gratuitous Wally photo, i.e. how he spends most of his time at my job

Addiction and Flaws.

It’s been almost a month since I last posted. I could lie and say it’s because I’m moving on or because work is keeping my busy or some other legit sounding excuse, but like I said, that would be a lie. The real reason is because I am a gamer and I have fallen through the rabbit hole with Heroes Charge. I’m pretty sure with the hours I have spent playing that I could have cured cancer instead. But instead I’ve been building my army of fantasy style creatures and battling. It’s a sickness.

I get it from my Mom. The first time I ever heard her swear involved a serious game of Mario Kart where Princess cut her off and an emphatic “Bitch!” escaped her lips. There was also a “shit happens” button above her desk for several years before she finally decided to take it down due to me being able to read it. It was pretty funny given that she ran the office for my Dad, a plumber.

Work is good. It is wonderful to be back in advertising, and better yet, be at somewhere I really wanted to work at. It’s a strange feeling that I’m building a future here. It’s really the first job I have felt that way because I always knew we’d leave eventually and come to New Orleans before this. Here there is no next step, this is it. It’s kind of awesome. I don’t feel this pressure to achieve something in a set amount of time before we leave, I can just take things as they come. I also missed the people and process of advertising, it’s just wonderfully absurd and inappropriate. Those of you that wonder about Mad Men, yes. I believe it was like that and worse back in the day given how we behave now. There are 5 bottles of whiskey above my desk that belong to one of my co-workers. In a recent internal meeting reviewing work, a very senior person was giving their thoughts and prefaced that what they had to say may not be worthwhile with “you can call me a fucking dildo head” if we thought it was dumb.

It’s also weird and nice to be surrounded by people that have no idea about the big C. Some do, but I work with over 100 people and most don’t. I get complements on my short hair and I’m stunned. It’s going to take some getting used to to not be responding in cancer mode. I’ve had a couple more doctor’s appointments and all have been good. I need to get through my two years to be in a safer shape. (not really good or safe, but significantly better odds). It’s two years from the surgery date so I’m not so far off from year one. My plan is to celebrate year one with a trip to Harry Potter world because I am a huge dork. I also wanted to do something silly and fun that wouldn’t take a bunch of vacation time and that fits the bill.

It was tough for a bit today because I was going through stuff that my Dad recently drove down from Vermont for us and came across a big pile of cards from our time in VT. These ranged from 30th birthday cards to anniversary cards to cancer sucks cards. I was to out of it and tired to sort through when we were packing so they all made it down. The 30th birthday cards are the ones that got me. I was diagnosed a little over a month after my birthday and before then it had been so built up as a big birthday. It was a rite of passage that my friends and I were all going through and I had a lot of feelings about what my 30s would hold as I closed the chapter on my 20s. The cards reflect that with lots of wishes and hopes from friends and family for my 30th year to be full of great things and adventure. It’s hard to read those knowing what happened so shortly after and is something I’m still recovering from and learning to survive. It wasn’t the 30 that any of us wanted. 31 is close and I look forward to leaving 30 behind.

On a related and sarcastically funny note, it is super hard for me not to say or write to friends turning 30 “can’t be worse than mine!” or “hope you don’t get cancer!” But I resist and you’re welcome for that.

Weddings Cure Cancer

At least that’s my theory. And I don’t mean planning a wedding for yourself, that may cause cancer. Another theory. I mean weddings where you get to watch two friends make that special commitment to each other and you get dressed up and then you get to eat delicious things and drink for free. It is like an explosion of happy things and if that doesn’t cure cancer I guess we’ll have to turn to science.

I have three compelling examples supporting this theory:

1. The first trip I made after my initial surgery, which I had a really tough time recovering from, was for my childhood friend’s wedding. In an example of the universe aligning, she happened to be marrying a friend of mine from high school so it was great to see two people I knew and cared for separately find each other and make each other happy. I wasn’t sure how I’d do, but I made it to the wedding and through the ceremony and it was wonderful. I really love the photo I got of us too.

Maria’s wedding

1. In early December when my immune system was at one of it’s lowest points, I flew connecting flights to SF for a wedding and did not get sick. I did wear the shameful SARS mask, but whatever. It was flu season and I rode on four airplanes and spent time in 4 different airports, two of them multiple times. I also managed to do everything I had planned. I also got on a plane four days after getting dosed with poison and still had a great time. The only low point was when I wanted to murder the Southwest desk lady who suggested I waited for everyone to board if I was having a tough time, right before announcing that anyone with children or disabilities that need to pre-board should see her. I still wish some bad things on her that I will not put in print.

SF wedding. Chemo and all.

Love seeing the first kiss.

2. I had my final big surgery the beginning of March and a wedding in Kansas City last weekend. I made it and even danced. This is just ridiculous because I was told 4-6 weeks to be able to go back to work (if I had a job) and that the drains usually stay in really long in the hip. I got those suckers out in record time and was off the pain meds after two weeks. Advil is a good friend of mine these days, but only intermittently. It also came in perfect time because I was feeling really low. I think it was a mix of recovery (pretty normal for major surgeries) and being home a lot by myself (and fuzzy companions that never want to talk about Rob Kardashian posting that photo of the Gone Girl covered in blood and comparing it to Kim, I mean WTF?). I wasn’t homesick for SF, but I was really homesick for my friends and family in SF. The KC wedding included a lot of them which was an amazing pick me up when I really needed it.

The giant wedding party

Beautiful bride

My dress sister

My favorite person

Part of the SF gang, including our Dec bride and groom

That’s a wedding

Just love these two

Next up we have three more weddings between now and the end of May and then another in November. I’m pretty sure this means I’ll never get cancer again.