Do over

Today I tried really hard all day to be in a good mood. I was like, "DAMMIT JESSIE HOW DO YOU EXPECT GOOD THINGS TO COME INTO YOUR LIFE IF YOU AREN'T HAPPY AND GRATEFUL??? BE HAPPY, DAMMIT."

As you can imagine, it was a complete FAIL on my part.

Yesterday was insane. Today I only went to work for about 3 hours. Then I just wanted to die. So I went home and took some klonopin. If benzos are in the same family as alcohol, they are probably depressents which would explain why I felt so morose coming down? Drugs are not the answer to all problems, apparently. I need to unwind from June, but I just don't know where to start.

There are a lot of things for which I am grateful. First and foremost is that life is exciting and dynamic enough to be presenting all of these challenges. So I just need to balance the thrill of all of this stimulous and still be sane and healthy.

Here is the high light from today:
This morning I got up a little early (inspiration credit AC) and did some stretching and reading of Mary Oliver poems.

ONE OR TWO THINGS
Don't bother me.
I've just
been born.

The butterfly's loping flight
carries it thourgh the country of the leaves
delicately, and well enough to get it
where it wants to go, wherever that is, stopping
here and there to fuzzle the damp throats
of flowers and the black mud; up
and down it swings, frenzied and aimless; and sometimes

for long delicious moments it is perfectly
lazy, riding motionless in the breeze on the soft stalk
of some ordinary flower

The god of dirt
came up to me many times and said
so many wise and delectable things, I lay
on the grass listening
to his dog voice,
crow voice,
frog voice, now,
he said, now,
and never once mentioned forever,

which has nevertheless always been,
like a sharp iron hoof,
at the center of my mind.

One or two things are all you need
to travel over the blue pond, over the deep
roughage of the trees and through the stiff
flowers of lightening--some deep
memory of pleasure, some cutting
knowledge of pain.

But to lift the hoof!
For that you need
an idea.

For year and years I struggled
just to love my life. And then

the butterly
rose, weightless, in the wind.

"Don't love your life
too much," it said,

and vanished
into the world.
-Mary Oliver

And with that, I'm off to bed to try again tomorrow.

Yeah!

Happy Pride! Today I went to the parade (sorry no terrible pictures) and like every year it was very emotional. There are always a few times when I just want to burst into tears because I feel so... happy.

The thing about Pride is that it's not just about being Gay. It's about being yourself. It's about being proud of the big freak that you are. I'm not saying gay people are freaks, I'm saying allllll people are freaks. And Pride is about celebrating who we are. Everyone dresses up. If your true self wants to wear a string bikini that's cool. If your true self wants to wear a 3 piece suit that's cool too. If your true self loves boas and ridiculous earrings... People flaunt their sexual kinks, spiritual affiliations, hobbies, pets, familial choices, politics... And it rocks.

The lame part is how corporate the whole situation has become and how much promotional crap gets handed out and how much garbage is generated. This year my goal was to not accept anything but free condoms. No leaflets, no candy, no free soap samples, no vitamin water... no crap. Just condoms. Happy Pride. Happy Be Yourself Day. Come out, everyone. Come out as you. Start being honest about who you are, who you love, and what you want.

Be proud

I am still sick--beginning to think I have bronchitis. At 4am this morning I gave in and self prescribed 20 mg of prednisone to bring down the swelling in my throat and hopefully the irritation in my bronchial tubes. At night I cough so much that I can’t sleep. It is a serious, serious drag. Robatussin is bullshit. I know I’m not a doctor, but I certainly spend a lot of time googling things and I am a WFR…

My oncologist saw me last Friday when I was at my sickest and pronounced me, “fabulous! Go upstairs and take your chemo!”

This is the problem with an oncologist being your primary care physician. When you ask about birth control he assures you that probably can’t get pregnant and even if you did, your current chemo regimen would kill any fetus. Then he gets confused, “wait, I have hundreds of patients, are you one that wants to have babies?” When you have a horrible cold and everyone in the civilian world looks at you like you have the plague, the cancer center folks tell you look beautiful and healthy. If only I could live my entire life just being compared to aged cancer patients…

It’s Gay Pride this weekend! Yeah! We’re here! We’re queer! Get used to it! I think of myself as a pretty queer straight person and even if you get offended by that and insist that I use the label “Ally” that’s fine. There are a still a freaking ton of parties and cool things to do! Christina and I went to Equalityoga practice this morning and did sun salutations with a few hundred folks. I focused my practice on what I’ve been focusing on for the last few months: radical self acceptance. I think this fit in neatly with theme of trying to get equal rights for everyone because if we all focus on accepting ourselves just the way we are, we would probably start to accept other people the way they are too. Christina meditated on love.

Then I began the long and what I am sure will be tedious search for a maid of honor dress for Sarah’s wedding. I only found one acceptable item on my search this afternoon. Sadly I found it in the Designer section. That Tory Burch—she makes a gorgeous sun dress, but $395 is just too much for me to spend right now… on a dress.

The last month has been unbelievably stressful and intense. I am not sorry to say goodbye June 2009. And now it is practically over. I’m trying to stay focused on what I have and what is good in my life and trying not to dwell on the things that are not just the way I want them. I am mostly successful at this.

Too late for Swine Flu jokes?

Week from Hell, round 1=over. Week from Hell, round 2=nagging at the back of my mind and causing anxiety. It is now the weekend. I just awoke from a 5 hour, klonopin induced nap on a Saturday afternoon. I have no plans to leave my house until Monday morning. Even though it would dramatically improve my quality of life next week to work through this weekend, I simply cannot. It is time to rest.

This week was interesting because I knew how much I was hurting my body by working long, high stress days. I knew it was making this awful cold about 10 millions times worse. But there was no. Way. Out. I simply have so fucking much work it's impossible. And no. There are not people to delegate to because that would require taking a lot of time to explain complex systems. Stress makes me paranoid. I know it's bad--way bad. It fucks up your immune system, your digestive system, your emotional equilibrium, and I really believe it's damaging on a cellular level. I believe stress is like poison in my body. And it makes me feel grosser than the swine flu that is currently taken residence.

My health update is that despite the green goo coming out of my nose, eyes, and throat, Dr K pronounced me healthy enough to do my full cycle of chemo on Thursday night. He used his fancy doctor flashlight and said there was nothing bacterial going on in my throat and nose. Viruses--they will be the downfall of our species! I feel like absolute ass.

My personal life is taking a hard hit due to work being so crappy. I a) work all the time, b) am too tired to do a lot of stuff when I'm not working, c) rarely have the energy to reach out and talk to people who are on my social periphery and therefor look like an aloof jack ass, and d) am that annoying person who just bitches endlessly about how fucked and miserable her job is when you do finally get me in a social context. I suck. My social life sucks. My friends are still really cool.

There is a light at the end of the tunnel. Week from Hell, round 2 should conclude our Weeks from Hell for the month of June. This post is not about sympathy or people finding solutions to my problems. It's is about the reality of what's going on in my life. It's about my post-cancer answers to life post-cancer. It's about lessons learned and forgotten and a realignment of values. It's about trying to do it right, to have it all, and the bumps along the way. It's about blogging stoned on anti-anxiety drugs.

O e t t i n g e r, out.

Toxic time

I have a cold. Not the same cold I had in Pittsburgh--a different cold. This one is more about sore throat, coughing, and a sinus infection. It is crappier than the last cold. I only bring it up because I was just having a ironic chuckle at the fact that I was smearing parabin-laden moisturizer all over my face/nose to fend off dry skin.

Yeah, I'm back thinking about toxins again. They're in everything. It's a toxic world. And pretty much every personal care product is full of carcinogens and we rub them on our skin and it's intense absorption time. Ever since I found that lump in my armpit, I can't bring myself to use real deodorant. I'm back on the natural kick. Sadly, most "natural" products are also rife with shitty chemicals, so read labels.

The thing is, at my last toxics presentation/work shop thing-y I went to, I went as a cancer survivor. My feelings about cancer and toxics are kind of complicated. On one hand, I have absolutely zero interest in the "why" of cancer. It seems like our combination of toxic water, air, and soil, compounded by evolution/genetics is a perfectly tidy and satisfactory explanation. No need to find blame (whether its placed on the victim, society, whatever, blame is boring) for misfortune. Of course everyone has cancer. Of course sometimes weird shit happens and healthy 25 year olds develop tumors. There are bigger things that we have a lot more control over to worry about--like using our tax dollars to spread war, hate, injustice, intolerance, and terrorism. I don't need more things to worry about or feel guilty about or speculate about.

On the other hand, I am spasmodically squeamish about toxics and cancer-y type things I have some agency in: like deoderant and moisturizer and vegetables and diet coke and the like. Some days I have the energy to care passionately about where my apple came from--I feel physically repulsed by the idea of putting pesticides into my poor chemo-stricken body. On those days, I eschew diet coke for organic kombucha and don't get water out of our water cooler (which is bogus anyway) because it's totally leaching BPA into my BPA-free water bottle. I drive my gas guzzling car to the fucking co-op and buy really, exclusively expensive produce. But I put it in a reusable bag.

And then I have days where my toxin-phobia recedes and I drink Diet Coke, smoke a cigarette, and buy non organic vegetables from MacPhersons, don't wash them, and don't give a shit.

So what was my point? Just that when people get all "and this could cause CANCER!!!" as a scare tactic, I am not impressed. And I don't think it's as simple as avoiding toxins because what's so freaking depressing/absolving about these presentations is that toxics are every where. You can't avoid them! They're in your mattress! And car seat! And your mouse pad! And your shampoo! And your drinking water! And you might get cancer!

How to wrap this up? I don't know. Obviously, I'm in a rant-y, inarticulate mood. I know other cancer patients read this--what do you think? Or fine. Lurk. But I guess I do wonder how much agency people feel in their own health and mortality? Obviously, there are things I do "to be healthy" like yoga and eating a mostly healthy diet of mostly healthy and organic food, etc. And there are things I do in direct violation of that health like miss out on sleep to blog, continue work at a high stress job, don't wear SPF, drink heavily several times a month...

I guess it's like all systemic, circumscribed, insurmountable, colossal problems (climate change, globalization, cultural violence, oppression): hard to know where to start when the whole thing is on its way down anyway. I guess what keeps me getting up every morning and doing my stupid job and buying my stupid organic vegetables is that I am always interested to see how the universe will continue to unfold and I feel in my gut that what I'm doing matters in little selfish ways. Like, for the most part I like my non profit/kids/environment job and like the way I feel when I eat lots of vegetables and practice yoga and I might as well be happy if I'm going to bother to wake up at fucking 6:30 am. Fuck. I need to go to bed!

Sexy sex

My tracking software has recently informed me that when you do a google search of "sexy topics" my blog comes up second. Hot. Hot. Hot.

And of course I still win when you google "the world will end tonight."

I am pretty fucking proud of that.

My post "On the sexy topics of sex and dating" may actually be my most popular hit. And self aggrandizement aside, maybe kind of relevant if you're a hot cancer chick who feels like her mojo is a little low due to some crazy hormone whacking chemo, the loss of hair, the placement of a port, the constant constipation/diarrea... you know, the sexy parts of cancer. Maybe.

Well, low mojo chemo bro, there is a light at the end of tunnel. And least, I'm seeing it.

Here are things that make me sexier because of cancer
-I love my body and appreciate it like never before
-the cancer experience gave me lots practice in voicing my needs (meaningful look)
-I still have a great rack
-I have adorable short hair
-yoga, my chemo rehab, has made me really flexible and increased my endurance

Lately the world has felt like my oyester. I think my boyfriend, Seattle, is making one last attempt to woo me even though he knows it's too late. But that doesn't stop him from pulling out all the stops: non-metaphorical boys to date, fantastically good times with old friends, connection to community, better weather... Nice try Seattle, I know it's time for a change.

Berkeley sent me an email yesterday with info about... you know, starting school. Lately I've been so overwhelmed by work that I can't possibily imagine anything past June 29. On June 29 I'll launch 3 of my summer programs. By that day I'll have compliance paperwork for over 125 members completed as well as a fully trained staff of 15 ready to do my bidding. HAHAHAHAHAHAHAHAHA. I mean, it HAS to happen, but how? So I can't possibly be thinking about things like finding an apartment, re-learning high school math (calculus? really?), and registering my car in the state of CA. Bleh.

Another interesting fact about my "class": no other Washingtonians! Only 4 PNW-ers! 2 Portland, a Boise, and me. In a class of 84 people! What the heck! Everyone is from California, DC, or New York. Bleh! Will people judge me for wearing chocos to formal events?

Bah, I'm going to yoga because I can only get sexier. Am I right?

eeeeeh?

My stomach feels terrible. I can't tell if I have swine flu or if chemo just makes me feel like butt some months.

In housing news, Mike, Maren and Krista are moving out at the end of the month. Ed is gone. Julian and I are going to turn the Mansion into a swinging bachelor/ette pad in their absence. I mean, there's a chance our landlords will find folks for the empty rooms, but there is also a chance that we will have the place to ourselves. Regardless, this is how things went down for whatever reasons:

-Jessie was invited to live at the Mansion through the end of July
-Julian was invited to stay while he considered the new housemates and whether he would potentially sign a lease
-Maren was asked to consider the lease, would not, and was asked to leave
-Krista was just asked to leave.

You might wonder why I was granted amnesty from the whole process? I don't know why?

But to continue the good ju-ju I did spend over 3 hours cleaning the house yesterday to make it as show-able as possible for the landlords. They have completely taken over the roommate-finding process and my only responsibility now is to keep the house looking spiffy. Not only CAN I do that, I WANT to do that! So they are going to asemble the group house of their dreams and I am going to live here and keep things clean and tell people good things about the house and hood when they come by to check things out.

I will miss Maren, Krista and Mike... a lot. But I only have 3 months left here and I just can't bear to move twice. Drama, folks.

Doodling along

The other day my twitter-friend, Ben Folds, was like "buy the new She & Him album" and I was like, "OK." Right on, Ben. I'm almost ready to forgive you for the whole Landed album. Almost.

Tomorrow is CHEMO DAY. I know from last month that the key is to drink 5 liters of water in the morning before my 5pm IV-start. I may also lift some weights. Anything to make my tiny, deep veins bulge for my favorite oncology nurses. As for the side effects, I've got an almost new bottle of Maalox and a refill on my Ambien. You know what's classy? Swigging directly from a Maalox bottle in social situations... Seth is having a cocktail party with an award for the best drink. What do you think of peppermint schnapps and Maalox? Also, I told Nich I'd finally come down to Oly to hang out with him. I'm excited.

I had a good talk with my mom the other day about insurance and loans and the state of the world. She's good at listening to me, talking me down, and making me feel secure. Isn't that like the perfect mom? She still makes me feel safe even though I'm 26. I'm going to COBRA the work insurance for 18 months. It's going to be cool. Good insurance is a good thing.

It's been kind of a stressful month: work, life in Community (namely my landlord), loans, insurance, Change... I don't always react with grace to every situation, but it seems that even though my initial reaction is still (and may always be) panic, mania, and bitchiness, I get better at finding my way back to chill. Like, I've hit Zen at work. I'm one woman. I'm one hardworking woman doing her best. And that's good enough for my boss, so that should be good enough for me. And life. I articulated a series of important things to myself and those things helped me set internal boundaries that I feel really confident about. I know this sounds vague and weird, but it's just house-related drama that I don't want to bore you with.

Socially, things have been exciting. New friends, old friends, all good friends. Lots of good food. Lots of joy surrounding the return of the sun. Spring is here. Life is thawing and the hibernating Seattle-ites are poking their pasty faces out of our caves. It's time for iced coffee.

On Monday I have a closure appointment with my therapist. She has been amazing at helping me deal with having cancer, living with chemo, and working through the journey back. It's not that I'm done, but I'm ready to fly on my own for a while. We'll check in during Emotional August, but for now I'm going to liberate my Mondays. After that I'll be getting my first haircut in over a year! It's time. My post-chemo fro needs some guidance. Some trimming. I want a person who knows something about hair, short hair, and general trendiness to give me advice... I'm going to Vain on the recommendation of one of my fave chemo friends.

Well, that's it. Wild, huh?

I got this

Whew. Life has been really busy lately and I've been lacking the time for thoughtful updates. This could be due the lack of diet coke (it has inspirational powers) in my diet or it could be the insane 50-60 hour weeks I've been putting in consistently.

But here's an update: I can work 60 hours a week! I can do it, rage on the weekend, and still get up on Monday morning. My life-endurance is getting stronger every week. This is exciting. Can you imagine what life will be life when I get to STOP taking chemotherapy drugs every week? Can you imagine?

My health is generally good.

What has me down lately is health insurance. I got my financial aid summary from Berkeley and I'll be taking out a shit ton of unsubsidized loans. I can live with this. My conundrum right now is what to do about my health insurance.

To break it down:
-I have BCBS PPO coverage through work with a 2 million dollar cap. Through COBRA I can keep this sweet coverage for 18 months after I leave my job at the bargin price of $600/month

-I can purchase graduate student health insurance from the school which is also BCBS PPO (with approval from their health center), but its lifetime cap is only 400K.

-400K is more that enough to get me through the end of my treatment, but not sufficient to cover a bone marrow transplant should I relapse.

-I am not/will not be eligible for Medi-Cal which is California's medicaid

So the question is: do I risk it? Do I sink $11,000 into health insurance premiums so that I will be covered to 2 million for the 18 months after I leave my job? Or do I just say, "fuck it," and go with my gut instinct which is that I am not going to relapse?

Thinking about relapse and contingency plans is a fucking downer.

This is the only thing about cancer that makes me cry. Not my stupid new curly hair that I'm beginning to hate, not having to get spinal taps, not my current insurance, but Insurance as a paradigm. In attempting to deal with practical questions about how I'm going to deal with the next few years, I get caught up in bigger questions that make me feel depressed:

Like, I still don't know if I even believe in treatment for cancer. Objectively, I don't think the bajillions of dollars of research and energy we sink into treating people who are going to die is really the greatest idea. All the toxic chemicals we're synthesizing to put in to people... all the waste, waste, waste that is a byproduct of treatment and research (billions and billions of individually wrapped sterile widgets in 6 layers of plastic)... all because we can't gracefully accept that we have poisoned our water, soil, and air and that our cells are continuing to evolve without out permission. We live in a society obsessed with controlling nature, our bodies, and the future... to the point that we've sealed our fate and we're going to kill off our own species. What's the effing point? I'm a cheerful fatalist. I'm disturbed by the way our species has chosen to interact with its envrionment and the level of cruelty and selfishness that pervades. The ultimate retribuition of nature is one of the only truths that makes sense to me.

You'll be happy to know that subjectively I'm thrilled to be alive and thrilled that so many people I love are alive and living productive lives post-cancer. I drank the Koolaid. Or in this case, I took the conventional chemo (the result of 50+ years of Leukemia research). Despite my belief that we're hurtling towards the end times, I enjoy my life. I'm happy. I cook food. I go to yoga. I love my friends. I flirt with cute men. I drive in my fossil fueled car down the I-5 pavement wasteland to see my family in Oregon. It's a pleasant existence.

I don't pressure myself to reconcile these two opposing viewpoints and I don't enjoy harping on them too much, but the point is that I can't just think about insurance without getting into all this extential crap and it makes me very stressed out.

Fuck insurance.

Update 3: Ranting about health insurance

OK. So I said Milk did make me want to do more for the things I believe in. And dammit, I really believe we need some healthcare reform. On Wednesday, I will be buying into the same system I was just dissing and going to lobby day in Olympia to talk to my legislators about healthcare.

So I’ve been thinking a lot lately about what needs to happen for me to go back to graduate school in the fall. Both the UW and Berk have a 400K cap on their graduate student health insurance. Seeing as how a bone marrow transplant (which will be necessary should I relapse) will cost ONE MILLION DOLLARS, I kind of need more coverage. Initially I was looking into catastrophe plans with high deductibles that, but those are turning out to be a bust. The coverage is shoddy and expensive and my social worker at Swedish said that the best thing to do in my case (should I relapse) is work on getting rid of all of my assets so I can apply for Medicaid.

This is so fucked up. I believe in Medicaid. I believe poor people should have coverage, but I am not poor. In fact, I would happily pay for health insurance. I DO pay for health insurance—with a big smile on my face. But because of privatized insurance, no one in their right mind will cover me to any decent extent after I am forced to leave my group plan with my work—my only option is to bankrupt myself so I can be eligible for Medicaid. That is dumb.

Let me back up. Right now I have primo health insurance through my work. My employer and I pay ridiculous amounts of money for this coverage—about $550 a month. And I can COBRA that for 18 months—for $550 a month out of pocket. Yipes. Do-able. Sort of. But when my COBRA runs out, I’m left with student health insurance (inadequate) until I am employed by someone else with group coverage.

The things that make me the most angry about this situation are:
-Caps. This defeats the point of insurance. Lifetime caps discriminate against people with chronic or long term health problems—the people who need health insurance most of all. People with AIDS and chronic cancer can spend millions of inflated dollars just to receive basic life supporting prescriptions and treatments.
-Pre-existing conditions and the ability to deny coverage: I will pay for my health insurance, but no one will have me. Fuck them.
-The fact that I would pay for my health insurance, but the only option is to let the government and Medicaid pay. That is stupid.
-Everyone is going to get cancer eventually. I really believe that. The statistics are high and growing. We need to come up with a better way to address common health issues like cancer in a most cost effective way.

OTHER NON-CANCER THINGS THAT ARE LAME ABOUT HEALTH INSURANCE
-women are charged more for health insurance because they go see the doctor more often—for things like preventative care.
-preventative care is awesome and so much less expensive than emergency care, but most insurance companies are too stingy and short sighted to pay for that kind of thing.

You know what, this is just making me mad. FUCK HEALTH INSURANCE COMPANIES. THEY ARE EVIL INCARNATE.

Update 2: Review of the only Oscar Nominated Movie I saw

Milk
What the hell is so radical about this movie? Sean Penn and James Franco are hot, the acting is good, and there is nothing blatantly offensive about the general production of the movie. I totally enjoyed it. I cried. It made me realize I need to do more to stand up for things I believe in. But now I am going to bitch about why it’s not really that groundbreaking.

I can’t get over how people think that just because two guys are kissing each other in a coupled, monogamous way that this movie is at all divergent from any major paradigm or theme in any other movie about overcoming adversity. Oh my god, this is a story about a bunch of white guys who got together, rallied as white guys using the system, and accomplished something for a bunch of other white guys. Totally blows my mind. Not. Stories about people overcoming obstacles by being scrappy (and white, and male, and middle class, and educated) and working the system are a dime and dozen and feed into the idea that the system works and that if you just try hard enough you will be rewarded with victory.

Here’s what really pisses me off. These guys didn’t organize in any radical kind of way. They were just part of the general masculine-centered activist paradigm. If you made a movie about a bunch of women who did something together and organized in a non hierarchal, peaceful, feminist way, no one would go see that movie. Every one will go see a movie about hot guys who do sexy things like yell into microphones and march militaristically and you know that secretly everyone is excited by the fact that these dudes have penises and they put them each other’s butts. Whatever.

I realize there about 100 places to punch holes in this argument, but I don’t have time to write the most well-reasoned argument. But you get it, right? That this movie isn’t telling us anything new or radical?

Update 1: Prednisone

5 days a month is actually turning out to be pretty OK. I have 5 nutty, but extremely productive days a month and the worst of the side effects (horrible heart burn, total OCD insanity, sleeplessness, despondent withdrawal) are all minimized by the brevity of the situation. This round of Pred resulted in these excellent results:

-Taxes: filed

-FAFSA: filed

-Shopping: 2 new sweaters, one new bra

-Perfume bottle: fixed

-Lamb/tomato/tumeric red lentils: perfected

-Gym: joined

-Bills: transferred to roommates

-Laundry: 4 loads

-Mansion Lease: signed

One Year

All week I've been wondering what I would say today, er yesterday... the 31st. I was trying to put together an epic blog post that could double as a mass email to my many cancer-followers. You see, January 31st is my one year anniversary of diagnosis.

I saw Dr. K on Friday and we had a lovely chat, some high fives, and hug. Every time I tell him I'm gaining weight at an alarming rate he tells me I look lovelier than the last time I came in. Friday he even went as far as to say "svelte." This man makes his living charming middle aged breast cancer patients. Thank you God, I'm not on hormone therapy and 30 lbs heavier after a year of treatment. Not that something as trivial as extra weight is my main fascination.

So anyway, I keep trying to think of significant things to say about today/yesterday and... what keeps coming to mind is that I was taking a shower on Friday and it occurred to me that my bottle of shampoo has been sitting on my shower shelf for the last year. For some reason, I pulled my conditioner out of the shower, packed away all my hair supplies, and hid everything that reminded me of my hair. And yet I left the shampoo bottle. From March-November, I would look at that shampoo every time I took a shower and remember that I was going to need it again some day. Victory. I have enough hair to necessitate shampoo...

When treatment started (Feb 13, 2008) I couldn't get over how long the protocol was. Eight months! I tried to tell myself over and over again, that in one year everything would be fine. I would feel ok, I would have hair, the cancer would be gone.

Today I got up and did an hour and a half of sweaty power yoga. Then I came home and attempted to style my unruly new hair. There is no traceable amount of cancer in my body.

I am so entirely, eternally grateful. Thank you, body. Thank you, family. Thank you, friends.

Ground Control

Every four weeks I take this drug called Vincristine. I get it through an IV. In November, getting my IV started took 5 attempts and on number 6, we went for the big vein in my elbow pit—and you’re not supposed to take chemo in your joints just in case there’s a leak. Even the guy who used to work with drug addicts couldn’t find a line in. This month, the amazing Nurse Lo got it on try NUMBER ONE. She is the first person to hit on a line on the first try since I started chemo in February. She rocks. It was an awesome way to start chemo in 2009.

Vincristine’s listed side effects are: neuropathy, hypoatraemia, hair loss, and constipation. However, other than the neuropathy, the two side effects that I notice are a runny nose and sensitive skin. My nose has been dripping for the last 11 months. And if I don’t take my allergy meds every other day or so I am plagued by extreme itchiness. Cold, numb toes, itchy skin, and a runny nose are totally tolerable, but they are also REALLY annoying. Having experienced a lot of constipation and hair loss, already… well, it’s not that bad I guess.

I spent my ENTIRE day in bed. Really. I lay in bed and watched instant netflixed Heroes episodes. At 5:30 I decided that I needed to eat something, take a shower and walk around. This is me bonking out on life after an 8 day trip to Oregon. Living is exhausting.

When I was home over the break people kept asking how I was (duh) and I kept trying to explain it… I’m fine. I can do everything. And I am living my life. But I’m also living right here on the edge. It doesn’t take much to push me over the side. A bad night’s sleep, a work fuck up, a nasty fight, a 9 hour drive… I’m a wreck. I will cry if you look at me funny. I hate this. I’ve always been a very emotional person—I feel things in a big way. But I’ve spent most of my life trying to control those feelings so I didn’t like an emotional wreck. I am now an emotional wreck at least 10% of the time. I do not like it one bit.

I wish I could show you how damn cute my hair looks. Obviously, the Photobooth shots offer some idea, but it’s adorable. It has a little curl to it… and these cowlicks. It’s finally long enough to part! And I just look like a normal girl. It’s not even an ambiguous cancer look. While I have a feeling more awkward grow-out moments are coming, I will take DPEH’s comment that I look “totally, Seattle, urban, intellectual lesbian” as the compliment that he meant it.

Hi

I just finished my graduate school essays. My personal history statement about how cancer has changed the way I feel about my life was the most difficult to write. In the end, I ended up distilling the experience into the three biggest ideas: that I realized I harbor a positive attitude at the root of my personality, that I have new appreciation for what hope is, and that I am infinitely grateful for my investment in community.

I thought my grateful attitude was a new thing brought about by cancer, but I just found this great journal entry from November 22, 2007:

“There are so many more amazing things to come. The last few years have introduced almost exclusively wonderful things into my life and yet I still struggle with their impermanence. Living in abundance—a paradigm that I love and that is not finite seems more and more appropriate.

Things that are abundant:
Love—the love of my friends
The possibility that something good will happen

Who is to say that Nathan, my favorite jeans, my friends in PDX, my professional life, the production of good music… there is no end to crushes, creativity, and my own potential. I’m thankful for Wilco, my health, my friends, and my family. There is always more.”

Sometimes I look at shit like this and shake my head. Am I seriously that girl? I think that yes, I am. It’s ridiculous.

Anyway, I feel excellent right now. My application is complete, it’s 4pm and I’m still in my pajamas, Phil Collins is playing, we have a 90% chance at a great new roommate, my sister comes tomorrow, it’s Christmas time, I just found this fantastic journal that I forgot I started last November before I got sick…

If you’re wondering how I am, I’m good. I work all the time now. I’m tired all the time. I am getting fat because it’s Christmas and I am eating a ton of sugar and my digestive system is functioning properly and helping me absorb thousands of bad calories. I made 12 rum cakes the other day. I still can’t feel my toes. I can do a half moon in yoga without putting my hand on a block…

I will continue to update on occasion, but for all you cancer blog fans out there, the best of it is Feb-August 2008. Cancer is really short. We were talking about that the other month in my LLS group—that treatment feels like forever, but really, it’s a remarkably short span of time for most folks. It doesn’t mean I don’t grapple with cancer-related issues every day (like health insurance for grad school! Blah!) but I think it’s probably significantly less interesting.

Marry me, Ryan Adams

I have a dad who can give me non-condescending advice about car maintenance. It’s pretty great.

Last night I watched Singles. I cannot believe I had never seen this movie. It’s set in Seattle in the early 90s and it’s Cameron Crow and it’s mid-20s angst and Matt Dillion with long hair and people (both women and men) wear tights/leggings with shorts in almost every scene. What a great fucking movie! There is absolutely nothing deep about it and there are no great lines in it like, “I just really thought I’d be something by the age of 23…” But did I mention that Matt Dillion has long hair and wears shorts and leggings? Because that is worth netflixing, friends.

How am I? Oh, the neuropathy is getting worse again, but I hadn’t been taking my Glutamine so hopefully that will improve. And I’m tired. Really freaking tired. I way overbooked November. If I can just get through the next 4 weeks and stop trying to do 100 million things I should be fine.

My body is changing again. Whenever I say I’m gaining weight people tend to be like, “good!” even though I was slightly overweight before chemo. Chemo brought me back to what had been a healthy weight at previous times in my life. However, it destroyed a lot of my muscle tone in the process. With yoga I was able to get some amount of control over my limbs back, but I couldn’t really gain strength like I used to. It was weird.

Suddenly, I find myself gaining weight rapidly despite exercise and calorie counting. I don’t know if I’m digesting better or if my body just misses being bigger, but my legs are bulking up again. Mostly this IS good. I think the majority of it is muscle. It’s just hard because I don’t feel like I have a lot of control over my body. Throughout all of this I’ve been eating as healthfully as possible and exercising as much as I could, but the results are so different…

Well, I’m off to my next brilliant netflix find: Tales of the City PBS miniseries.

Because I can

I washed my hair tonight!

Feel the fury

What’s the good word?

It’s been a long 10 days since the Un Hick My Heart Party. Such a large surge of love, celebration, and fun is bound to be followed by a lull. The quiet has been filled with a lot of questions: where do I belong, what do I want, what am I doing, what’s the point, etc. It’s your typical mid twenties whiny bullshit, no worries.

A highlight from the last week would definitely be attending a corporate party with Julian. His company finally got FDA approval for their product and so they celebrated with a cush party at the EMP: cocktail attire, free food, drinks, and FREE CAB VOUCHERS. Is that not the classiest fucking thing you’ve heard of? To make things better, they hired a band that played exclusively 70s/disco/rock covers. Their name (I shit you not) was HIT EXPLOSION. It was awesome.

This was a working weekend which means today was the beginning of my “weekend.” Work feels overwhelming right now—like I’m on the cusp of not doing my job. But I always felt like that when I was going at full tilt. Anyway, I don’t know how to take time off, sleep, clean my room, go to yoga AND do all my work.

What else? I dropped some serious cash at the Nordstrom Half Yearly Sale. I was out of control with the sweaters. One is this BCBG cowl neck that is that kind of thing I would call fabulous and feel fabulous in, but most men would ask, “why do women wear ugly shit like that?” I don’t care. Fabulous.

Right now I’m listening to Ben Folds and drafting letters of resignation that I will not submit. One of my co-workers commissioned a flow chart that is just a list of who everyone’s boss is and then sent it to our entire organization. It’s so fucking stupid. And self-aggrandizing. And inaccurate! The pretense was that this will help everyone know what everyone else does. But all it does is list titles (a big deal at this org, ) supervisors (it’s really important to emphasize the many layers of middle management between people who do work and our CEO), and help you visualize who is at the Top and who is at the Bottom. I also drafted some really severe emails to my co-worker that copied our supervisors, but have decided to wait 24 hours before taking action. I don’t know if I can let this go this week?

I am angry. Someone is going to feel my rage. It might be my co-worker, it might be an unwitting friend, it might be one of my roommates, it might just be a nightly news anchor, it might be another driver, it might the next waiter who is rude to me, it might be the next student who flakes out on something they said they would do. I’m a little scared. I don’t want to rage, but I can feel it burbling.

Q & A (the beginning of my tribute to un Hick my Heart)

Q: OMG, how was the Un Hick My Heart Party?
A: Totally fucking awesome, amazing, great, fun, celebratory, inspirational, humbling, invigorating, empowering, rad, shot-ski, fantastic, loving, hilarious, sweeteous.

Q: who came?
A: um, who didn’t come? Jenny and Richard were missed Leslie represented Eugene. Nathan and Kerry flew in from Berkeley and Pittsburgh. Jon Marc and Sarah came down from Bellingham. From Portland we had: Jesse, Jade, Kelly, Emily, Jody, Steve, Jason, Spencer, Ben, Kathryn, Virginia, Margaret, Sarah, Brian, and Joanna. Joanna brought a shot-ski. Seattle? Too many to name! Dinner club + friends of dinner club + SCA!

Q: What was the highlight of the evening?
A: doing a shot-ski with my dad, Robin, and Sarah

Q: How many shot-skis did you do?
A: I don’t know

Q: what is a shot-ski?
A: a ski… with shot glasses taped to it. Duh.

Q: Where are the pictures?
A: Coming... of course I didn't take any! So send me yours!

Q: are you happy the Obama is the next president?
A: enh, sure. Yes we can, blah blah blah

Q: should gay people be able to get married?
A: why the hell would anyone get married! But I love gay people!

Q: how long does your killer vegan red curry last?
A: based on my last meal, at least 2-weeks.

She's got (no) game

mOh man. I just went on my first date post-chemo. It was a blind date so I went wig-ed thinking that would be easiest. I would wear my fake hair, not bring up cancer, and see what that kind of interaction was like.

I am a failure at subtlety.

So pretty much it was a good time. Scrabble, beer, get to know you conversation. I felt like this was someone I might want to go on a second date with. When we got to the end of the evening and talked about going out again, I kind of snapped. All of a sudden, the half beer, the heat in my cheeks, the itchiness of the wig... I couldn't do it. I couldn't bear the thought of doing it again. I was like "well, if we go out again, I need to tell you something..." and then I awkwardly told him about it and was like "I just feel fake with this wig on, blah blah blah" and then having gotten that out on the table, not being able to stand another minute with the damn hair on, I PULLED MY WIG OFF AT THE TABLE. Yes. That was really, really weird of me. I get it.

Anyway, poor guy. He proceeded to babble about medical conditions that afflicted him and his family. What a trainwreck. I somehow doubt this person will be calling me.

So this is my lesson learned: just show up without a wig. People can't tell. They just think I made the unfortunate choice to shave my head. I don't even have to talk about cancer.

The thing is, I didn't want to talk about cancer, I just wanted to not wear my wig for another second. I wanted to be liked for being bald.

In other news, tonight was my first meeting with Team and Training for the Leukemia and Lymphoma Society. I'm going to be the Whidbey Island Marathon team's Honored Teammate. After a few practices with them, I'll be able to determine whether or not running a half marathon at the end of March is feasible. If it is, I will need to raise $1000. But I realized that would be pretty easy. If 40 people each donate $25--that's $1000! Or there's other stuff, of course.

So this is a good way to give back to LLS.

And the team's coach couldn't tell that I was the honored teammate--and I was talking to her bald. So there you go.