Friday, November 27, 2009
For the longest time I was adamant that cancer was a bad thing, that I would never choose to re-live all of this if given the chance... But now that things are mostly over and done with, I've been re-considering. When you get a certain distance out from most big Life Happenings, so much has gone down and shifted around that it becomes impossible to extricate Life Now from the Life Happening. And depending on how you feel about Life Now or Reality, as I like to call it, it's all dependent LH.
Right before I left Seattle Dinner Club did a Whidbey Island retreat. On a lovely hike along the bluff, we were discussing the happening of our 3 years together and CL said to me, "I don't want you to take this wrong, but you are so much happier than you were [before cancer]" and I realized she was right--really right.
It's hard to say whether it was cancer or just getting older. But I have come out the other end of all of this with more... confidence? It seems like the wrong word because I've always linked the idea of confidence to appearance or aptitude... but really, I feel better at life. I got pitched a doozey and I fucking nailed that sucker. And yes, luck was on my side, but it made me feel more confident about inner-Jessie and her ability to respond to trauma, to find joy and humor in adversity and to keep going.
It's kind of pointless to speculate too hard on what would have happened if I hadn't gotten sick, but I will anyway. I think most glaringly, I would have entered the 2010 class at the UW Evans School instead of waiting a year and going to Berkeley. Everything that happened that last year in Seattle: getting my first taste of being a Boss, calling an end to the Crappy relationship, being part of the Crazy relationship, making lots of new friends, being part of Jessie and Julian's Epic Spring Party Marathon, getting to mentor another fabulous year of AWESOME teenagers... all of which shaped who I am and where I am now.
But at the end of the day, I still decided to be perversely thankful for my cancer (but not anyone else's). And truly thankful for my friends and family, my health insurance, my generous employers, for all the new people it brought into my life, and mostly for the opportunity to be here and now...
And yeah, I have a paper due tomorrow which I am NOT writing because I am updating here. Sigh.
Thursday, November 19, 2009
Wednesday I came off (as scheduled) but for some reason I had a particularly brutal resurgence of post-roid despondency and spent the entire day freaking out about nothing identifiable. It was a serious case of Malaise.
It is ALMOST OVER. And I am fucking ready. The Pred makes me nutty, the Vinc is making my skin going crazy, the Mtx has my stomach on defense all the time.
But back to Wednesday: even though I wanted to burst into tears all day and I felt like the world was crashing down around my shoulders, I used my white-person-buddhist-mantra about the moment being temporary and it was all good. It's the drugs that make me crazy--it's not a permanent state of the world. Holler.
But what I really wanted to say in this post is that I have found a new thing that I love about being in school... the refreshing ok-ness of being a type A personality. I like things to be in order. I like them to happen as planned. I like to eat the exact same thing for breakfast every morning and as hard as I try, I am just not a chill kind of person.
In a lot of ways I've spent my entire adult life trying to fight this. Mostly for positive reasons: being rigid, stubborn, and attached is mostly ego and doesn't really do a lot to make life more pleasant. The other part of it is that it also is not cool to be a Crazy Bitch. Between undergrad at UO and then working with youth, I had to get good at pretending like I was a chill person. And for my own sanity I kind of learned how to accept reality, find order in chaos, and how to let things go.
I can't decide if it's just kind of people at a policy school or whether it the influx of people in my life from the east coast, but all of a sudden it's ok not to be totally chill all the time. It's ok to want things a certain way, to be hyper organized, to care about things being good.
Conclusion: I like it here.
Thursday, November 12, 2009
Yesterday I flew up to Seattle for the day. The whole day was absolutely wonderful. It started with Julian and I at Pho Hai Yen for some rockin Rainier Valley pho and a tour of NoBea. Julian is fabulous. While part of me would like him to realize that there is no life in NoBea without me (and that he should move to the East Bay) it gives me even MORE pleasure to see him so happy and thriving in an environment I know for sure to be a GREAT PLACE. I guess that's a good thing :)
Then I went to Swedish. I had been wondering if I was being a total prima donna about the whole switch back, but the MINUTE I walked into Swedish I knew I had made the right choice. The front desk ladies were so happy to see me! My phlebotomists gave me a hug! People couldn't stop telling me how happy they were to see me and how absolutely fantastic I was looking. Dr. K and I had a longer sit down than we have in months. He told me how proud he was of me and how fantastic I looked had me flex my rockin abs for him (very appreciative) and hugged a lot and talked about all the parts of this journey that had brought me to better places. Perhaps more importantly for my readers, we talked all about the FUTURE. The FUTURE post-treatment. What it means when I am no longer tethered to an IV pole and cell-killing poisons!
December 16: second to last infusion at Swedish
January 13: LAST infusion
Sometime in January: full PET, bone marrow biopsy, brain MRI, full blood panel... intentionally missing in this series of tests is the SPINAL TAP which Dr. K waived as I had a clean one last spring during my migraine-month.
After everything comes back clear, I'm on to semi yearly check ups which I have a feeling will consist mostly of hugs.
After seeing Dr. K I went up to treatment. Jenny B, one of my fave nurses was assigned to me which was a good time. Anita, who is my magic IV starter was on lunch, but when Jenny told her I was outside, she left her lunch just to start my IV--on the first try! Later Jenny said that Anita does not usually do these things, but that she has a liking for me! Maura and Marilyn came by for hugs and to postulate when in fact, Marilyn's son and I can get married. Maybe in a few years.
All I can say is that these are my People. I love the staff at Swedish so much.
Then I was off to an early Dinner Club (sans CL) at the AC and RAchel's. Rachel made an incredible vegan feast that involved garbanzo beans and we just enjoyed a reunion of our community. Rachel drove me back to the airport after dinner and I was in Berkeley, in my bed, by 11pm.
Damn, Seattle. You've been working out. Yesterday you were 40 degrees, sunny, and beautiful. It worked. I'll declare on the internet that I'm still madly in love with you. Wait for me, baby. I'll be back in 18 months.
Thursday, November 05, 2009
This healthcare shit is scaring the hell out of me. And I can't seem to mobilize very well. I don't want to blog about it, I don't want to protest, it takes every thing I have just to send emails/phone calls to Congress people trying to get my vote chalked up on the "pro" side. It's just so fucking disturbing how absolutely evil the insurance industry is. Pure. Evil. My tongue is not in my cheek (as it often is when I'm making fun of conservatives) I am serious. The system is so broken and so many people are so fucked and our elected officials don't really care. And a surprising number of my fellow Americans don't care either. It's tragic. Our whole world is tragic. See? This is where thinking about health care gets me... totally depressed! Because it's just one of the many arms of systemic oppression that rules the globe.
OK. Enough. Here's the exciting cancer news this week: I bought shampoo. It has been over 20 months since I've had to wash my hair... it's always been so short that just rinsing it was good enough. This week not only did my chin break out like I was 16 years old, I kept noticing that my hair was... greasy. So just another sign that life is slowly crawling back to "normal." I'm not sure how to spin my zits as positive, so we can just focus on the hair. Huzzah!
The real question is, what now? Grow it out? Keep it short? I don't know!
I think I kicked my Quant midterm's ass but I am feeling less secure about my Econ test tomorrow. I should probably study. And that's why I'm updating Inertia and just finished baking gluten-free pumpkin, chocolate chip cookies. They are fab. They are for my Econ class. And maybe Julian. I'll be in Seattle on Wednesday for chemo at Swedish!
Friday, October 16, 2009
Tuesday I went back to Alta Bates for another stab (haha) at chemo. My nurse, Valarian ("he's Fillipino...they're really good at finding veins...") hit the vein on the first try with the big needle. Huzzah. We then waited for 2 hours for the pharmacy to mix 2mg of Vincristine. You win some, you lose some. Nurse V also seemed to have read the Vinc instructions and pushed it over the correct amount of time. AB: leaving on a high note.
I called Dr. K who said he was sorry that things were rough but that they missed me and would be happy to see me in Nov/Dec/Jan. Our compromise (darn you, Dr. K) is that I have to go back to weekly CBCs (argh!) and I will do them drop in style at Alta Bates. My nurse prac there will fax the CBC/Chem panel to Dr. K. Infusions will be done in Seattle.
The last two weeks were a little rough. School picked up which wasn't too overwhelming, but I faced another round of "adjustment" mental and physical style. The whole thing culminated in public tears on Wednesday morning where I felt sooooo sorry for myself. Here I am, at this amazing graduate program taking all these cool classes that aren't really that demanding and my life is soooo hard because I'm plagued by all sorts of existential questions like "what am I doing with my life?" And "why is that the right thing to do?" I wanted to call my mom because my adviser had been mean to me, but I was like, "Jessie, get a grip. You did not enjoy hearing about other people's problems when you were in treatment."
So. I smoked a cigarette, drank 20 oz of diet coke, and got Real. It's gonna be fine. And since that moment, it has been fine. And 5 years ago that would have been 3 cigarettes and like 44oz of diet coke... so that's an improvement? I'm here to learn and I'm learning. I've taken out loans and I'll pay them back. I like people in my program and they like me. I only have 3-4 chemo infusions left. If this week sucks, next week can be better. It's fine.
My plan for the week/end is to just get back into a healthy groove. Listen to the new Avett Bros album. Clean my room, yoga, make healthy food, drink in limited quantities, balance social activity with time alone, call people at home to say heyyyyy.
In the ingenious words of Micheal Franti,
The future's comin' on like a bomb
The whole worlds rockin' and the beat goes on
Ready or not we're bringing it on
The whole world's rockin' and the beat goes on
Saturday, October 10, 2009
I went to Alta Bates yesterday for my 5th to last Vincristine infusion. After 5 attempts they gave up on starting an IV and sent me home. I'll try again on Tuesday. However, I was there for over 2 hours. I did get a flu shot so it wasn't a complete loss.
The nurses seem convinced that my veins are just too small, and at this point all the good ones have been too fucked up by so many other attempts (and successes). Vincristine will really mess up a good vein--it's nasty stuff. However, this same nursing team also made a few strategic errors in which veins they poked and which IV needles they used. They were unsuccessful at drawing blood from the anacubital (the big veins in your elbow pit) so I'm not sure how much confidence I have in the general skill level.
The thing with really toxic chemo drugs is that you worry about them "leaking" into other tissue if the IV needle has punctured the vein in a few places. As a result, once you hit a vein high up (like in the elbow where they all meet) that arm is done for the day. Also, if you get in, but not good enough, it's too dangerous to infuse. Wrists and elbows, where veins tend to be more visible are too risky for chemo because if it were to leak the damage to the joint could be devastating to utility. This limits where you can get poked. I got poked in all possible places.
It's the little things: refusing to use a pediatric size needle even when I tell them my vein are too small for regular sized needles, the callous IV rip out from last time which resulted in the biggest IV bruise I've ever had, this month's blood draw failure... While everyone is nice, there seems to be a chaotic culture reigning in the treatment room and bad communication everywhere. As a systems observer, I am more appreciative now of how on it the Swedish team is. There is a huge qualitative difference based just on operating practices.
Anyway. I don't know what to do. Obviously try again on Tuesday... but everyone was making noise about having a port put in. I refuse. I am being a good sport about all of this: 2 years of incredibly conservative treatment, subjecting my body to heinous chemicals, but I am not going to have surgery to have PORT put back in my chest. No. 5 IVs.
I think it might be easiest to just start flying back to Seattle. Getting a new treatment team at Stanford or UCSF would be a pain. All the extra appointments... By the time I commute to either of those hospitals and go through all the introductory crap... I'm calling Dr. K on Monday.
Tuesday, October 06, 2009
#1) Tyra Banks on Gossip Girl. Glorious. Over acting, wigs, wig changes. Hilary Duff. Who knew. Lizzie McGuire infinitely more suited for Dan than Harriet the Spy.
#2) American Splendor. I realize the movie came out in 2003 but it was fabulous. Am now interested in reading Our Cancer Year by Harvey and Joyce...
This post is kind of epitomizing my life now. I could choose to blog about the things I'm learning which are really interesting and at times controversial (just like I could choose to be doing my homework instead of watching internet TV in my underwear and drinking coffee at 2pm). I could fill this blog with well crafted thoughts on healthcare, social services etc... But for some reason I'm not.
Anyway, I still get like 14 hits a day because people everywhere (all over the world!) are googling "sexy topics" and clicking on Inertia. My cancer has been mostly quiet lately. The weather is changing and my neuropathy is getting worse. I am ready to be done with treatment and resentful and bitchy about the fact that it isn't over. I miss Dr K, Swedish, my nurses, Chris and Michael, Billy and Yusef, and the guys in the parking garage who would propose to me. Friday is treatment #6 in the countdown.
My insurance company continues to pay, I continue to suppress my immune system, my hair is growing back, and it feels like all around me folks are getting bad news about Cancer. It's a weird place to be.
This last month I was at a yoga class where the theme was the harvest. This is fall. We are harvesting what we have reaped over the last year. A couple weeks ago was Yom Kippur and Rosh Ha Shannah--the turnover of the Jewish year. All of this stuff asks us to consider the year behind us and the year I'm reviewing was excellent--for me. It was full of positive momentum: feeling better almost every day, getting into Berkeley, having a wild 6 months of partying in Seattle, saying goodbye to my job and Community, and moving on to another situation full of Promise... It's like the happy montage at the end of the movie.
I'm trying to celebrate and acknowledge how wonderful this is and balance it with the tragedy that defines the year of other people. It's not just cancer, but unemployment, the failure of our legislature to actually look out for constituents, the hurtling of our culture into End Times... Anyway. I find myself using the same coping mechanism I discovered with in treatment: realizing that life is transitory, mysterious, ever changing, and still wonderful. Believing in transformation, challenging myself to be open to what can be good...
Once, in a yin yoga class, my teacher Janell gave me this meditation to help me focus on holding a pose for a long time while remaining present:
In Breath: This is the perfect moment
Out Breath: This is the only moment
Monday, September 14, 2009
9/14/09:The hair is the most obvious difference, but I've also put on about 10-12 lbs of muscle since taking that first picture... and I don't have fatally low levels of platelets! So that's an improvement.
Today is good. Today I turned in my first grad school assignments, I lifted weights, I rode up the big hill by school twice, and now I'm at home and I'm going to read about French and German war strategy and start on my law paper. For fun I might read about sales tax in Oregon. I say NO to atrophed muscles, NO to baldness, NO to chemo brain, and NO to non clotting blood!
And the best, best, best thing about today? That's right: SEASON PREMIERE OF GOSSIP GIRL!!! Don't judge, just love.
Sunday, September 13, 2009
So pretty much the litany of sins are as follows:
-treatment room is dark, has no natural light, and cramped
-IV was put in my wrist which is the most excruciating place to start an IV
-they didn't use litacaine (a Swedish practice) to numb the IV area
-despite my telling them that I can't use large, blue IV needles and that I really need the yellow, pediatric sized needle, they attempted my first vein with the blue. It fucking hurt and didn't work. I told you so.
-everyone kept asking me, the patient, what my treatment protocol was, if i had ever had chemo before (wtf?), what kind of cancer I had, if I had ever had Vincristine before, if I'd ever had an IV before, why I didn't have a port etc. and the thing is all of those answers are IN MY FUCKING CHART. Yes, I've fucking had Vincristine at least one a month for the last fucking year and a half. Yes, I have had an IV before and you should believe me when I tell you what veins are good. Yes, I've had chemo before. Oh My God.
-then the pharmacist came by and re-asked all those questions, and then asked for a list of the drugs I was on and what doses (again, in my chart right next to her) and instead of confirming she just wrote down what I told her and printed it out.
-then the nurse practitioner came by and looked at the print out (that I had dictated) and proceeded to write my rxs based on that--not my chart.
-she then told me that she wants to monitor my blood counts because she just doesn't know how I'll do on the Vincristine and I was like "you have my weekly blood counts from the last year in my chart... and I've been on the same drugs" and she literally was like, "I don't have time to read your chart."
-this WHOLE time I have a plastic tube in my wrist vein and it is SO UNCOMFORTABLE and they won't take it out because they like to "hydrate people." This is after I have had fucking 5 liters of water already to get my veins ready for the fucking IV. They did not listen to that either.
-when the nurse finally took the IV out, instead of removing all the tape and then carefully pulling the IV out, she just ripped. She ripped it all out at once. And it bled like fucking crazy and hurt a lot.
Conclusion: no one could be bothered to read my chart OR listen to me so I'm not really sure how any information got through to them. This is pretty simple stuff (my treatment at this point) but if I weren't totally on it, if I were say, a little old lady who was totally confused (see them all the time at cancer centers) what the hell would have happened? I'm all about being an empowered patient, but this was totally ridiculous.
12 down, 5 to go. We're in the homestretch!
Tuesday, September 08, 2009
But back to what everyone likes to read about: CANCER!!!
Last Tuesday I was in a FOUL mood because for the first time in many moons I was kept waiting unnecessarily (for a fucking hour and a half) for oncological med professionals with no respect for patient schedules ("oh... I guess we didn't really need to see you... nope, nothing really to talk about... sorry about the wait!") As it stands Alta Bates is getting a big fat FAIL from Jessie. There's no way in hell I'm going doctor shopping at the moment because I don't have time. And I don't have time to get treatment anywhere but RIGHT next to campus (Alta Bates' only plus thus far) so I'm gonna make due for the next 6 months, but dammit, I'm going to be a bitch about it. If I were to detect something actually wrong, I'll just head back up to Swedish and Dr K.
You probably also want to hear my wisdom on Healthcare Reform on the eve of Obama's speech? Of course! Thanks, Facebook for the inspirational quote!
"No one should die because they can't afford health insurance, no one should go broke because they get sick."
Just to be clear: I'm in favor of a single payer, public option. I want to pay for health insurance, but no one will sell it to me. My personal drama is summarized here, but in re reading that post, what I thought was more interesting was not that I'm in deep shit if things don't change (ubiquitous) but the more interesting question of what it means to deny people care/treatment and the will of the patient to fight.
The will to live. On one hand, it's like, "duh, " but on the other hand, I'm continuously humbled by my instinct to do whatever it took to save my life. Not that it was a particularly impressive action--it's more that when my well being was threatened in such a way (cancer) I did things to save myself that strayed from my general principles about The Way the World Should Work. And let's be Real, I wasn't even that threatened!
Philosophically, I am not a fan of intervention. I mean, antibiotics, sure, but I have kind of deep rooted, ass hole-y, Darwin-y, cave man-y instinct that says "when your number's up, it's up." Despite that feeling, when I got sick I was like "Drugs. Now." and I was thrilled to stick it to my insurance company. Finally! Those ass holes paid out about $500K last year. And they gave it to good things like my doctor and my hospital and more evil things like the pharma companies and all those other capitalist pigs who get rich on people suffering...
So anyway, in one of my classes we were talking about how if we give everyone access to the kind of research and treatment that comes with Good Insurance it really is going to be freaking expensive, but you just can't tell people that they can't have something that could save them. People will do outrageous things for themselves and people they love to save them. It's amazing.
Assuming that what we're trying to do is the MOST good for the MOST people, do we spend a shit ton on healthcare and lower spending in other areas? Do we raise everyone's taxes? Do we raise some peoples' taxes? Does the government nationalize the pharma industry? Dude, someone has to pay for this.
When I really think about that Facebook statement what it's saying is that people shouldn't have to bear the costs of their own healthcare which is kind of ridiculous. I mean, we've developed really expensive technology and while there are a bunch of people getting outrageously wealthy because of it even if we were to confiscate their bajillions, Healthcare would STILL be expensive. So someone still has to pay... and if it's not the patients it's... someone else? Other, non-sick people? Which brings me to the part that seems to make everyone really uncomfortable about all angles of this: it's not Fair.
It's Not Fair how some people get sick and some people are healthy and some people treat their bodies like crap and We have to pay for it and some people are soooo healthy and they get some tragic chronic illness and bottom line, it's Not Fair.
So without thinking too hard about who should pay for healthcare and how much they should pay and how much people should REALLY be charging, I think the first thing people need to let go of (on either side) is that life is Fair or that somehow things should be Fair.
Sick people need to get over the fact that it's Not Fair that they got sick and will have to bear not just financial pains, but fucking huge life disruptions, ignorance, inconvenience, TRAGEDY etc. It's also not fair that some people are born in abject poverty in war torn countries. There are 8 year old prostitutes! Horrible things happen to wonderful people every day. And it SUCKS.
But moreover, not sick/rich/insured/conservative ass hole republican people need to get over that it's Not Fair that they're being asked to contribute to a system that will make everyone better off. It's not really fair that they're rich, insured, or healthy. Most of them have done little in their lives to deserve their situation relative to their inherited privilege (genes, family situation, country of birth, childhood health habits, exposure to toxins) so screw them and their entitled belief in "fairness."
I realize this is not the most air tight, coherent, or even logical thing I've ever written but I really need to work on my micro econ homework.
Sunday, August 30, 2009
Classes: are good! I don't have any previous experience in any of the areas we're studying (politics, econ, stats, law) but I feel (perhaps prematurely) that I can totally do this. So far it's even been enjoyable learning. And not working? Well that's just icing on the cake.
Home: is coming together. Here is my new room!
After 3 trips to IKEA, I finally have enough receptacle space for all my shit. Friday night I went into the Depths of Hell for hopefully the last time. I bought a desk, came home, assembled said desk, and then hung up all my paintings. Next I'm going to get to work on our common space. We need art on the walls, a toaster, a table, and... some character. Also if I get a particular cord we can hook up the TV to the DVD player and actually watch movies.
Social life: I'm so freakin tired. On Saturday night I braved a party with my classmates and was very happy that I did. Making conversation between classes has been difficult for me, but put in me in a situation when I have a beer in my hand and can swear a lot? Perfect. Much like classes, I'm getting the feeling that I can do this. I can make new friends. I can build another community. Other than that, I'm just trying to keep yoga-ing (I keep having dreams where I can finally get my foot behind my head... so close!), do all of my homework, and of course spend inordinate amounts of time on Facebook. Breaking out beyond these activities requires my super powers, but hopefully as things settle down I will be able to return phone calls. But yeah, I miss all of you.
Cancer: things are ok. I have a new oncologist down here and my first appointment was fairly disappointing. I think it was a combination of 3 things:
1) No one will ever be Dr. K and the Swedish staff. They were totally amazing, we went through a lot together and they saw me all the way through--no new doctor coming in at the 11th hour is going to be able to beat that.
2) He really isn't as cool or lovable as Dr. K. Even objectively. And he didn't seem to give a shit. I'm a maintenance patient. I have no problems. It's not thrilling to see me looking healthier and healthier every week because he wasn't there when I was really sick. And also, I think he might kind of an ass hole.
3) Whenever I see a new specialist, I have to re examine the ALL diagnosis, the treatment plan, and my own agency in it all. Dr K, for reasons I completely understand, left no gray area when it came to treatment or diagnosis. He was like "this is it, this is what we're doing" and it was kind of nice because as the patient you are actually the person saying, "yes, you may put this poison in my body and I authorize it" and technically you have the power to deny any part of your treatment. And so you have to trust that your doctor knows what's up because you have no idea. I hate it when other oncologists then look at my treatment and say "well I would have done this differently" because look, dude, I just spent a year in hell because I thought it was the only way through so please for the love of God do NOT undermine my shakey confidence in what I am doing. Anyway, my new onc was just like "oh I don't do it this way..."
However, one of the things he doesn't want to do is see me every week for a blood draw! So hopefully I can just move to going in every 4 weeks for my Vincristine.
So that's the short of it. It's going to be ok.
Sunday, July 19, 2009
I AM SO HYPER.
*Made breakfast for mom
*Went on errands for work
*Went to work
*Went on a date
*Cleaned our bathroom
*Cleaned the kitchen
*Swept and mopped the kitchen
*Swept and mopped my room
*Swept and mopped the hallway and stairs
*Then I made stir fry and cleaned the kitchen
*I made notes for the garbage, recycle, and compost so everyone would know what went where
*hung out with Andrea
*found places to recycle old prescriptions
*found a place to donate my Hick supplies (saline, hepron)
*put all my good books in the car to sell to Half Price
And my hair looks fabulous. And I have heartburn.
But I just took 1mg klonopin and 10mg of Ambien so SAYONARA!
Tuesday, June 30, 2009
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.
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,
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
For year and years I struggled
just to love my life. And then
rose, weightless, in the wind.
"Don't love your life
too much," it said,
into the world.
And with that, I'm off to bed to try again tomorrow.
Sunday, June 28, 2009
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.
Saturday, June 27, 2009
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.
Saturday, June 20, 2009
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.
Sunday, June 14, 2009
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!
Thursday, May 21, 2009
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?
Sunday, May 03, 2009
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.
Thursday, April 23, 2009
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
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.
Wednesday, March 04, 2009
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.
You know what, this is just making me mad. FUCK HEALTH INSURANCE COMPANIES. THEY ARE EVIL INCARNATE.
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?
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:
-Shopping: 2 new sweaters, one new bra
-Perfume bottle: fixed
-Lamb/tomato/tumeric red lentils: perfected
-Bills: transferred to roommates
-Laundry: 4 loads-Mansion Lease: signed
Sunday, February 01, 2009
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
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.