Thursday, April 23, 2009
Doodling along
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?
Sunday, April 19, 2009
I got this
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.
Wednesday, March 04, 2009
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
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.
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: signedSunday, February 01, 2009
One Year
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.

Saturday, January 03, 2009
Ground Control
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.
Sunday, December 14, 2008
Hi
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.
Tuesday, November 18, 2008
Marry me, Ryan Adams
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.
Thursday, November 13, 2008
Monday, November 10, 2008
Feel the fury
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.
Wednesday, November 05, 2008
Q & A (the beginning of my tribute to un Hick my Heart)
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
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.
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.
Thursday, October 30, 2008
She's got (no) game
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.
Wednesday, October 22, 2008
Git 'er done
Yesterday I spent an hour with my therapist trying to talk about the process of merging back into Life without using sports metaphors. It was harder than you would think.
The Hick is gone, my hair is growing back, the scariest chemo is over. Yay! But I’m still really really tired. Pulling the Hick did NOT magically restore my body to what it was 10 months ago.
My body is tired, but what I don’t think I was expecting is that my brain is tired too. It’s kind of discouraging. One of the reasons I’ve been able to be so effective at my job and cover a position and half over the last two years is that I have the ability to focus and work very quickly and efficiently. Much like if I were to try to go for a run these days, I would fall back to my old
I was playing with my long-hair wig the other night and I finally got it to look like my hair used to. I put it on and walked around my room looking at myself from various angles. On one hand I think I have gotten so used to myself bald that seeing myself with hair is shocking. On the other hand, when I saw myself with like, my hair I looked so much like I used (but skinnier) that it was heart wrenching. I accept that this is how I look now, and I even like it, but then I remember… I miss my hair. A lot. Still.
Monday, October 20, 2008
More from the Pro-Choice Prom
Awkward Prom Pose
So let me tell you about prom. It was the Planned Parenthood Pro-choice Prom: "Choose a better dress, choose a better date, choose to have a choice." 21+
CL and Elisa hosted the pre-party. I made asparagus polenta with ricotta cheese. It was awesome. Julian was my escort for all intents and purposes. I wore my favorite black dress. It's true: Even bald, I looked better, I had a date I liked better and if I were to get pregnant (hahahahhahahahahaha) I could choose to get an abortion. Yeah!
Prom was at Garfield Community Center and they had a live band playing AWESOME 80s dance music. I danced up a storm. My performance below is really just a warm up. I mean, I boogied. Hard. For hours.
When Julian and I got home from prom we congratulated ourselves on being so young and fun and going out TWO NIGHT IN A ROW (Friday we biked to Neumos for some Inde-Folk-Country-Rock) and I was feeling really... cool? Anyway, I looked at the clock and it was only 11:45! So we were almost cool.
Planned Parenthood Prom Pre-funk
OK, against my better judgment this is me pre-prom. Obviously, I'm succumbing to peer pressure and performing like monkey while Christina yells direction.
Sunday, October 12, 2008
Meh
I am tired. I’m finally coming down off the high of having the Hick out and grasping the reality of 16 more months of chemo. Work has been a lot of work. And I have a cold. Bahhhhhh.
Tuesday, October 07, 2008
No, it's not a third nipple... or is it?
Monday, October 06, 2008
Do you notice something missing?
Wednesday, October 01, 2008
Oh Holler!
Even more exciting: Hickman Extraction will take place on Monday (10/6) at 1pm. HOLY SHIT.
Less exciting: x-rays of my hips on Friday because they have felt a little funny since the 4 miles of fun running I did a month ago. Damn you, Prednisone!
I can't freakin believe it. I mean, the Hick is REALLY coming out. Soon. Dr. K gave me a hug, told me he was proud of me, and it's like, yeah, this hurdle is CLEARED. I start maintenance chemo next week: methotrexate, vincristine, pred...
More GOOD news. Dr. K said the amount and frequency of my Vincristine infusions will NOT cause hair loss. Grow little baby hairs! You have nothing to fear!
Other things to celebrate:
-Gorgeous weekend at Mt Rainier with 20 high school students. I love the youth I work with. They are amazing, loving, funny, intelligent, growing, and maturing... Sometimes a pain in the ass, but I feel like I have the best job in the world about 65% of the time. The weather was amazing--Paradise (5000 ft.) was 70 degrees and sunny! So beautiful...
-Package from the lovely, amazing, inspiring, and brutally powerful Bekah F. Thank you B, how did you find something so perfect? I will post pictures of my new present when I get batteries for my camera.
-Two yoga classes with Eiric this week. The man makes me SWEAT. Friday night will be my first Kirtan--singing and chanting with my teachers and yoga-friends. I plan on dedicating most of this week to yoga, to strength, and to power.

