Inertia

Happy

2011-09-19T21:37:00.000-07:00

On June 30th Bobby and I left work early and went to City Hall in San Francisco... where we got married. We are still planning a wedding, but there are some things that need to happen first... like me getting a permanent job and us buying a house. Obviously, lots of transition right now.

Mostly I feel lucky lucky lucky every day. I have my health, I have my family, I have my friends, and I have a wonderful, wonderful husband. I also have a master's degree which is cool even if it doesn't make into the top 4...

I've decided it doesn't really make sense to keep up with this blog. In the next few weeks I might scale things back and just keep my cancer treatment entries up so that other survivors and their family/friends can still access my experiences with this particular disease and treatment regimen.

In this next stage of life when I'm applying to jobs and people can easily Google me, I'll probably want to blog hilarious, irreverent social commentary anonymously. Hope to see you around the blogosphere!

Update, Schmupdate

2010-03-12T10:14:00.000-08:00

Are y'all still out there? I know it seems like I have given up the blog in light of the chemo thing being over, but it's more like I am just trying to keep my head above water here at school.

Things are... GOOD.

So here is a fun post-chemo update. Yes! There are changes! My weird symptoms that I had gotten so used to are slowly fading away.
-Roaming, EXTREME itches that made me want to claw off sections of skin? GONE
-Constant runny nose? BETTER
-Intense and frequent leg cramps despite my daily banana? LESS FREQUENT
-Inability to balance on one foot due to lack of feeling in my feet?--IMPROVING
-Energy level? BOOSTED. My cardiovascular system has responded well to having more red blood cells and things like riding my bike up a hill or stairmaster are easier in the sense that my pulse doesn't beat as fast to supply oxygen to my cells. Or so I believe.

My stomach and skin are both a little unsure of how to handle my boosted immune system. The initial reaction was FREAK OUT, but I think they're getting used to the extra cells. In particular I think my skin had a hard time with the adjustment and for most of February I felt like I was 17 again. Now I'm just battling dryness.

So yes, it gets better. On Monday I'm going to see a normal doctor and hear their perspective. From an oncologist point of view (which is a little warped) I'm like super healthy, but I'd like to see someone who sees relatively healthy people.

School is crazy busy and I'm trying to be focused, but with perspective. Like, I'm here to learn and not to be the best at anything (FAIL on that count) so as long as I'm learning and I'm trying I should just be happy with that. Personally I'm working on keeping my ego in check whether I'm on the yoga mat or working on an econometrics problem set. It's important to remember that I do these things because they cause JOY and satisfaction and not because I think I am going to be the "best."

Speaking of JOY I saw the Alvin Ailey dance company last night and it was fantastic. Talk about joy. The human body is constantly amazing and beautiful and it was great to watch strong, gorgeous, graceful humans DANCE to music that makes your heart feel good.

I'll be back!

UGH!

2010-02-09T11:43:00.000-08:00

Dude, fuck this Insurance bullshit. My COBRA was rasied to $575 this year. It kind of f-ed up my very lean grad school budget. The raise was a $100/month increase which in no way reflects real inflation. This morning I got a pleasant surprise--the deductible has gone from $500/year to $1000. WHAT THE HELL. Now my lean grad school budget is unlivable. Seriously.

Who on earth thinks that insurance companies are running themselves efficiently?

They are pure scum-money sucking-evil-disgusting-parasitic-pieces of shit.

Will now return to meditating on my good fortune to have access to this shitty piece of shit COBRA...

Two Years

2010-01-31T23:03:00.000-08:00

A bunch of you probably got this in email form so feel free to skip. For all my loving lurkers and other internetz budz, you are part of my gratitude:

Friends and Family:

I’ve been struggling to compose this email, but today is the 2 year anniversary of my Leukemia diagnosis and it’s unreal to think that I’m sitting in my house in Berkeley, a graduate student, exhausted from 90 minutes of power yoga and worried only about balancing school work and beer drinking. Not only has this experience opened new doors (Berkeley! Yoga!) but there were so many times when I just couldn’t imagine getting to this place. I’m happy. I’m healthy. I’m very… content.

As of Wednesday, January 13th, I am completely done with two years of chemotherapy! With clear scans and bone marrow that is “clean as a whistle” I am officially in remission. What a joy.

I just want to say again how grateful for all of you, my supportive community. Thank you so much for all the love and kindness you have sent out to me, my parents, and my sister. It is overwhelming. I hope that in the next few months I have a chance to thank those of you who made a particular impact. Of everyone though, I’d like to thank my mom who has been a source absolute and ceaseless support. When I was angry or despondent or completely manic on Prednisone, she would take my phone calls and just listen. I’d also like to thank my Seattle roommates (dinner club and Mansioneers) who provided the kind of day-to-day logistical and emotional support that made it possible for me to be a Strong Woman and look like I was handling things with grace and independence.

Finding closure for this part of my life is still a bit elusive. It has not been an unqualified bad experience: I have met so many amazing people and learned appreciation for the many, many blessings in my life. Saying goodbye to my care team at Swedish Cancer Center seems next to impossible—these are some of the most important people to have touched my life. Additionally, I dare say I am a much happier and relaxed person than I was before diagnosis.

Luck is a two-way street. While I celebrate my own health and remission it feels terrifyingly random and at times cruel that I have been given so many gifts while many suffer with disease that cannot be cured, truly difficult decisions, reduced access to care, and health insurance woes. Or for goodness sake, I could be living in Haiti so there is a certain amount of discomfort I’m experiencing with much of the rhetoric around Survivorship.

While I parse that out, just know that I’m Living Strong, and wishing you all the best.

Happy 2010,

Jessie

El Fin

2010-01-16T16:22:00.000-08:00

Sorry to keep y'all waiting. It's over. I'm done. Final chemo is over. Final scans are clear. Final bone marrow aspiration is "clean as a whistle."

This is joyous news. It's hard to know what to say: it's anticlimactic AND overwhelming at the same time. But I'm working on that. For now, just a big big thank you to all my friends and fans. You all have been tremendous.

Internet love to you all.

Now, go give money to Haitians...

T-giving, philosophized

2009-11-27T00:35:00.000-08:00

Kairol and the Thankgiving holiday have inspired me to try and put words to some thoughts that have been bouncing around and changing for the last two years: am I thankful for cancer?

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.

Refreshingly Type A

2009-11-19T22:21:00.000-08:00

It has been an emotionally complicated week, friends. Goddamn, prednisone, you make me insane.

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.

Swedish Cancer Institute: the best place in the WHOLE world

2009-11-12T10:47:00.000-08:00

15 down, 2 to go!!!!

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!

The plan:
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.

Over it

2009-11-05T11:47:00.000-08:00

Ugggghhh. It's midterms this week. I know I've been really spotty about updating and when I do it's kind of lame and obvious that I'm just avoiding doing homework and not here to share anything substantive... Life is requiring a lot of energy these days and so I find my free time being absorbed mostly by Hulu. A TV renaissance in the life of Jessie.

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!

When you're in hell, just keep going

2009-10-16T10:44:00.001-07:00

Dramatic, much? That's some advice my crazy pants ex boyfriend gave me in college. God love him, that was one of the wisest, most obnoxious things he ever said.

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

Firing your chemo team?

2009-10-10T10:51:00.001-07:00

I don't know what to do.

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.

Still here

2009-10-06T13:55:00.000-07:00

Briefly:

#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

small milestones

2009-09-14T17:19:00.000-07:00

You're darn right today is the one year anniversary of finishing up intensive treatment! That means that for the last year my body has mostly been allowed to heal! Let's celebrate!
9/14/08:
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.

Treatment in Berkeley: a Rant

2009-09-13T08:52:00.000-07:00

I had my first chemo infusion at Alta Bates on Friday. It was terrible. The whole thing took over 3 hours which is absolutely fucking ridiculous when you consider that even if you push the Vincristine at the rate it should be pushed (1 mg/minute) the actual drug only takes 2 minutes to administer. Ironically, the nurse who pushed the Vnc just pushed it--in like 15 seconds.

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.

Pictorial evidence:
12 down, 5 to go. We're in the homestretch!

oh, yeah one more thing

2009-09-08T15:49:00.000-07:00

I forgot to mention that not only am I totally into ME being alive, I am also totally supportive and into my many friends who have endured long, crazy, painful journeys as they fight for their lives. Clinical trials, radical intervention, absolutely mind numbingly awful chemo treatments... God damn, the will to live is amazing. And admirable. And they do it with so much grace, perspective, hope, and valiance. So... I just want that on record.

Mmmm Koolaid

2009-09-08T15:01:00.001-07:00

Today my copy of Snow Leopard showed up in the mail! Shiny! New! Operating system!

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.

Life so far

2009-08-30T11:33:00.001-07:00

I have now been in Berkeley for almost an entire continuous week. It feels like 10 weeks.

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.

crazy amped, yo

2009-07-19T22:24:00.000-07:00

Oh Prednisone. Don't tell Dr K, but I've been cheating... I hate taking you in your full dosage and often I'll skip a day or take a smaller than prescribed dose. I know it's bad so this morning I gave you another chance and damn, you are blowing my mind. 110mg. I am manic like no one's business.

I AM SO HYPER.
Today:
*Goodwill run
*Yoga
*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!

Do over

2009-06-30T23:00:00.000-07:00

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!

2009-06-28T19:57:00.000-07:00

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

2009-06-27T22:10:00.000-07:00

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?

2009-06-20T18:43:00.000-07:00

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

2009-06-14T23:06:00.000-07:00

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

2009-05-21T18:07:00.001-07:00

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?

2009-05-03T12:35:00.001-07:00

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

2009-04-23T22:52:00.000-07:00

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

2009-04-19T12:57:00.000-07:00

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

2009-03-04T11:48:00.000-08:00

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

2009-03-04T11:47:00.000-08:00

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

2009-03-04T11:45:00.000-08:00

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

2009-02-01T01:42:00.000-08:00

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

2009-01-03T20:58:00.001-08:00

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

2008-12-14T16:18:00.000-08:00

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

2008-11-18T21:34:00.000-08:00

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

2008-11-13T22:43:00.000-08:00

I washed my hair tonight!

Feel the fury

2008-11-10T18:19:00.000-08:00

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)

2008-11-05T12:25:00.000-08:00

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

2008-10-30T23:02:00.000-07:00

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.

Git 'er done

2008-10-22T14:41:00.000-07:00

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 9:30 pace, when I work I immediately jump into my old 1.5 FTE in 32 hours/week and after a few hours I am so wiped out. I work a lot faster than I run, btw. So anyway, I’m trying to figure out how to get everything done with my decreased endurance levels.

Here’s something I haven’t mentioned. Lately, I dream about my hair almost every night. It’s weird. I listened to a This American Life about people who have been blinded or lost limbs and for years and years afterward in their dreams they could still see and walk. I dream that I have hair, but I also KNOW I’m not supposed to. In my dreams, I will incredulously touch my hair or look at it in the mirror it will disappear as my sub conscious remembers that I don’t actually have hair.

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.

More from the Pro-Choice Prom

2008-10-20T21:54:00.001-07:00

Awkward Prom Pose

Me doing yoga after Elisa started talking about how flexible she was... check my shit out!

CL looking so fine.
Rachel in my sunglasses and the necklace I wore to my high school prom.

AC putting my boobs to shame--and in my own dress and sunglasses! Hot damn.

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

2008-10-20T21:19:00.000-07:00

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.

Meh

2008-10-12T17:03:00.001-07:00

The problem with today is that it’s 5pm and I have yet to get dressed. Or spend any significant amount of time outside of my bedroom beyond several trips to the bathroom and the kitchen for more snacks. But lest you think I’ve done nothing, I have eaten about a million calories, watched half a season of Project Runway, and listened to a lot of Radiohead.

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.

No, it's not a third nipple... or is it?

2008-10-07T21:57:00.000-07:00

Hmmm...
Can you figure out which 3 teeth are fake? This is really just a shot for Dr. Sheets, my orthodontist. Nice work!

Do you notice something missing?

2008-10-06T15:58:00.000-07:00

Yup, they just PULL it out. I mean they put some anesthetic in first, and then they pull... really hard. More pictures to come of me re-enacting the historic battle.

Oh Holler!

2008-10-01T21:19:00.000-07:00

I saw Dr. K today. WBC 6.6, Crit 29, Platelets 167!!!

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.

Un Hick my Heart

2008-09-30T16:12:00.001-07:00

Hickman Removal Party, now known as "Un-Hick My Heart: Giving Leukemia the Finger since 2008" is set for Nov 1, 2008 at 8pm at the Mansion. All are welcome.

Tomorrow I will see Dr K to determine when the Hick comes out and when we "get to" start oral methotrexate. I will also get a blood check. I have been feeling really light headed lately which is either a result of low RBCs or perhaps a side effect from going off Prozac. Ultimately, I decided that anti depressents were an unnecessary addition to my drug-arsenal which is now more like a... cache. Um, I only take glutamine at this point, but reserve rights to Ambien and Klonopin (mostly K for recreational purposes--like the vice presidential debates).

What else? I am having a lot of re-entry anxiety. The things I stay up late obsessing over are embarrassing and ridiculous and I'm debating whether or not I really need to share it with the interwebs. Either way, I'll wait for a day when I actually feel articulate.

2008-09-26T15:23:00.001-07:00

Leukemia is my bitch

2008-09-24T12:25:00.000-07:00

It has been 223 days since I started my ALL protocol on February 13^th, 2008. In the last 8 and ½ months I have had:
8 different chemo meds
6 spinal taps
1 bone marrow aspiration
15 days of radiation
28 days in the hospital
1 trip to the ER

My blood counts have been down to zero on several occasions and today, today I am proud to report:
WBC 16
RBC 4
Platelets 37

What this means is I am now producing my OWN blood cells! I am totally out of the woods immune system-wise and as long as I stay away from knife fighting for the next few days, I should be fine.

Also, at my lowest points my secondary drug use looked like this:
GI: Zofran, pepcid, tums, stool softener, laxatives
Head: excedrine
Brain: prozac
Sleep: klonopin, ambien
Itchiness: Claritin, benedryl
Nueropathy: glutamine

Some days I would literally take ALL of these drugs. But for the last 5 days I have taken nothing but my glutamine. Goodbye secondary drugs!

And hello period! In the last 8 months I have only missed 1 menstrual period! Holler, ovaries!

I have several terrible pictures that I took over the weekend I spent in Corvallis, and I will post them later, but I had a WONDERFUL time seeing everyone. It was just so… nice. There was a lot of love and joyfulness everywhere I went and I am just so freakin grateful for everything that I have.

Next week Dr. K and I are going to talk Hickman removal, ORAL methotrexate, and long-term treatment.

This weekend is National Public Lands Day and I am going to Mount Rainier with 20 high school students. Jealous much?

I finally feel as amazing as a person finished with horrible chemo should. Thank you to all my readers who think nice things for me and my blood cells. I’m sure we’re all ready for phase 3 of this blog: Fall 2008—JessieO Dates Every Eligible Man in Seattle…

It can only get better!

2008-09-15T18:40:00.001-07:00

Well, it’s over. Sort of. In terms of how they name my cycles and the severity of drug side effects, the worst of my chemo is OVER. And these last few days (as I’ve been rallying myself constantly) are the low point physiologically EVER.

Here is what my stomach looks like after 8 Cytarabine shots. You can tell how many platelets I have on a given day based on how big the bruise is. The tiny bruise is about 120 platelets, the medium is 89, and the huge ugly one is 10. The rest of look like little pin pricks because I was over 200.

I am starting to feel better. The blood yesterday was great. I worry about my white count a lot and my body seems to be running what I have started calling “mock fevers.” It will start with chills and body aches, followed by a spike where the soles of my feet and palms burn, and then the break when I start to sweat profusely. Yet through all of this, my temperature remains under 99 degrees. Today my face and head have been burning up all day. If you were to feel my forehead, you might say “Holy Smokes! You’re hot!” You would be right on so many levels. I look kind of feverish, but I’m 98 degrees.

So it’s obvious by now what a lying, hypocritical, asshole Sarah Palin is. I hate politics. I hate that there are so many logical and ethical things to nail her with and people still default to misogyny. I hate that I’ve gotten two emails already authored by democratic men, urging me to be a good feminist and do something anti-Palin. Like, “if you’re really a feminist, you’ll realize what a terrible person Sarah Palin is and do what I and all these entitled, white, ‘progressive’ men tell you to do.” Not that men aren’t allowed to be part of the feminism discourse or that many men aren’t better feminists than Sarah Palin, but the whole paradigm is so disgustingly masculine (in the bad way,) paternalistic and condescending I could barf. And I’ve been barfing a lot lately.

Punky

2008-09-13T21:40:00.000-07:00

Getting up this morning at 7am and going to work--a service project with 25 high school students--was physically one of the most challenging things I have ever done. To channel an old rugby phrase, I woke up feeling like "total butthole." The longer I was awake, the easier things got, but man I was totally beat and just taking a wheelbarrow up a steep hill (empty) left me heaving and wanting to pass out.

After the work project I headed for the chemo center and CBC revealed that going to work and playing around tools all day was one of the stupider things I have done since diagnosis. Platelets 20, WBC 1.2, Crit 23.

Tomorrow I am getting my last Cytarabine shot EVER, another blood transfusion and a G-shot. Maybe some platelets. So yeah, I feel pretty punky and more than a little nervous about my counts. My nadir is supposed to be Tues-Wed, but if I get Nupagen tomorrow, I might avoid it all together. I think this is low enough for my comfort. Why is this last push so crappy? Why is the Universe trying to rain on my parade? Tomorrow is my LAST INTENSIVE CHEMO TREATMENT!!! Why can't I enjoy it?

The karmic finger

2008-09-12T11:26:00.001-07:00

Yesterday I was running around all elated, sending emails that said stuff like, “today I begin the last of my ‘intensive’ chemo ever!” I was just Pollyanna to the max and then the Universe was like, “here’s the finger, Jessie.”

My appointment with Dr. K was at 3:20, followed by 4:00 chemo. I saw the doc at 4:15 and did not get my chemo until 5:45. I was a little flipped out at that point because why was everyone trying to ruin my fabulous day and make it so I couldn’t go to fucking yoga! But the point of yoga is to not get flipped out about these things so I was like... OK, deep breaths, chill out. Came home, ate Rachel’s delicious bread pudding and fennel-kalmata olive salad, took a Klonopin and tried on outfits for Sarah’s wedding. Eventually I took an Ambien (as you know, faithful readers) and face planted.

At 10:30 my body woke me from the Klono-Amb stupor to BARF. Oh man, I could not stop barfing, retching, DRY HEAVING for like an hour and half. The homecare nurses told me I had to call Dr. K who takes all his calls… woke him up at like midnight and he told me I had to go to the emergency room. The ER was blessedly quiet and they were happy to see someone who was “really sick” and not just trying to scam pain killers. They gave me a room immediately, started fluids and eventually pumped me up with IV Zofran since I was incapable of keeping the pills down. At 4:30 I got to go home.

Today is better. My chemo only took 30 minutes which is like a freakin record, I was able to do all my errands in the 2 block radius of the treatment center and I feel SO MUCH BETTER. I had planned on taking today mostly off for Sarah’s wedding but in light of falling counts, an unreliable stomach, and an event with 40 kids tomorrow I think I’m going to chill at home for the day and watch Netflix and sleep. I think maybe the Universe tried to apologize too because I had all green lights on my drive to Swedish and no lines at the pharmacy, bookstore, or bank.

And by the way, I really do have a much more sophisticated understanding of karma than you might elicit from this post… I mean, I was a freakin religion major.

WWOOF

2008-09-11T20:38:00.000-07:00

I have made a heinous mistake and credited Virgina, a stunning pie chef in her own right, with KATHRYN'S amazing pesto that we ate at dinner club. My apologies. The basil was obviously righteous basil too because it came from the farm where Faf Willingly Worked On an Organic Farm (WWOOF).

Saw the doc, the whites are down and so are the platelets. Damn you, Cytoxan. Apparently the nadir comes days 12-14 so the worst should hit next week. The plan for the weekend is watch Sarah Z get married, get more Cytarabine, work outside with high school students, see Liz Squffin for the first time in several years, try to sleep as much as possible between events... Monday I'll get some Nupagen so my whites are cookin' during my trip to Oregon next week!

Today chemo was an hour and 45 minutes late. I almost had a meltdown but settled for deep breaths and eventually coming to terms with the fact that I can't go to yoga every day and that sometimes I can take pill-yoga: Klonopin. Holler. Well, now it's 8:45 and I have added Ambien to the mix. I need to faceplant in my bed and see y'all tomorrow.

Besos.

Crash, burn, get up

2008-09-09T20:53:00.000-07:00

Ah, the fog has cleared. Every few months I have a Crash and Burn few days where I just totally, totally “bonk out” as they say in endurance sports. Last week was kind of a lot—the 4 mile run, yoga, work, Cytoxan, the party, the Portland visitors… and I bonked out. But the good news is I am much better at dealing with bonking than I was the first few times. Here are the lessons I’ve learned:
-continue to eat and drink water even though you feel like crap
-freakin take your Zofran before the nausea gets really bad
-it’s OK to sleep…
-as long as you are sleeping and not just lying in bed, lacking the motivation to get up

Once I reach the lying in bed with no motivation to get up, then it’s time to get up, force feed, and go to work and attempt to engage in life. That was today.

To give you a run down, I went to the party on Friday night where I must now digress and share the uninteresting update: party not that awkward. There were a ton of people there, including a lot of people that I am friends with so while I had many normal and pleasant interactions with the young man in question (including a moment I know he was checking out my ass in my jeans—and it looks good) there was no awkwardness. Well done, Jessie! As for the evening’s entertainment, my friend Elisa is a sex educator for Planned Parenthood and my new friend Nathan seemed to know a lot about sex and so most of us listened raptly to advice about... stuff. Let's just say I learned a lot.

Anyhoo, the Weeks and Verhoeven contingent made it down around 10, we met up with Birch and I did not go to bed until TWO IN THE MORNING. I know, it was so crazy. Saturday was a whirlwind of tourist-like activities and then just like that it was over. As soon as my friends left I got in bed and didn’t get out until yesterday afternoon when I realized I was hosting dinner club for 10 people. Luckily my mom was lurking in North Seattle, waiting to be useful and together we made BOMB polenta, red sauce, and used Virg’s awesome pesto to put together the perfect late-summer dinner.

Here is my red sauce recipe:
Sautee onions, peppers, garlic, summer squash
Add a bottle of beer (I used Pacifico)
Reduce
Add a goodly amount of fresh diced tomatoes
Salt, sugar, fresh basil to taste

Mmmmmm.

Today I made myself get up and go to work and tonight I went to yoga for the first time since Thursday. I was definitely a little stiff, but more than ready to hit it. Tomorrow I get to go to Eiric’s Wednesday morning class which I love but I think I’m going to have to start limiting my 9:30-11 yoga classes to about one a week if I’m going to start working “full time.”

I was just saying to my therapist that I was getting used to my cancer lifestyle—only working part time, doing lots of yoga, spending the rest of my time with the onc nurses at Swedish… Bah—Real Life, you loom large!

Here is Ben doing plow:

Wake up America

2008-09-08T20:54:00.001-07:00

On the sexy topics of sex and dating

2008-09-05T17:39:00.000-07:00

Bekah sent me a long email the other day that brought up what would happen if we blogged about the sex and dating lives of two hot chicks with cancer. The answer: who knows? Because enough of our family and friends and people we’ve had sex with (sorry, to out you as a non virgin, B) read our blogs and really…

Anyway. Tonight I’m going to a party. There will be a young man there who my friends would like to set me up with. They brought up the subject with him many months ago followed by, “Oh… and she has cancer… so you might want to wait a few months.” I guess he responded in a slightly horrified way (much as I would… cancer—no thanks! Those people have baggage!) and then when I did meet him at a party it was horribly, horribly awkward because I was obviously cancer-girl. In about an hour and half I am going over to his house (that he shares with my friend Brandon) for a party. As I have the ultimate cancer-perspective, our last encounter ceases to haunt me and I was just excited about a party (!) with my friends (!)

This afternoon CL sent me a text that said, “ps the other person whose birthday party it is is [Roommate X’s] ex… but don’t worry because you’re smarter than her.” Now I have a lot of anxiety and fear another awkward encounter; this time purely because I will be extremely awkward around this young man. But after trying on my entire wardrobe, I have found an appropriate outfit and as long as I remember to freshen up my deodorant and put some moisturizer on my “combination skin” things should be OK.

But back to paragraph 1: the sex and dating lives of hot chicks with cancer. Or in this case, my non sex and dating life. Dr. Oz said on Oprah a couple days ago that men don’t care about cellulite, so perhaps they also don’t care about temporary Alopecia. But I have also found out over the course of my short life that men are really uninterested in smart, empowered, and independent women so I fear cancer has made me even more of all of these things. It’s going to take a Salt ‘n’ Peppa “what a man” to handle me at this point.

Here is a list of things that make me feel unsexy:
-My shiny, bald head
-Watching my pubic hair fall out every time I go to the bathroom
-Being constipated for the last MONTH
-The huge bruises that I’ve gotten from being careless and low on platelets
-Suppression of hormones due to chemo

Here is a list of things that me feel sexy:
-The fact that I’ve lost almost 20 lbs with cancer
-My new yoga bod and my sexy lean muscle that’s poppin’
-The fact that I look GOOD bald
-The mysterious tan I’ve developed in spite of hiding from the sun all summer and wearing sun block
-I have an awesome rack

Well, expect more of my thoughts on this as I get totally “Real” about my sex and dating life which will hopefully materialize at some point. And don’t worry people who I have had sex with and who read this blog: I will not out you or speak of our encounters. I’m sorry I said the food at Geraldine’s was better than anything we ever had together, but the fried egg sandwich when a girl is on Pred and not on sexy hormones will make you say things like that on the internet…

How was that, B? I have a long email drafted to you that I will send soon. Mucho love.

There's no such thing

2008-09-04T21:30:00.001-07:00

As too many pairs of David Kahn jeans. Especially if you buy them on eBay. I know, I said I would never buys jeans on eBay again, but the third time must be a charm because these are absolutely perfect. I found my favorite pair of jeans that I bought about 18 months ago (and since have been discontinued) but two sizes smaller. They fit beautifully.

Oh right. I went to the oncologist today. Dr. K is back! I forgot to ask him about his vacation... I was too busy bragging about the 4 mile run. Anyway, my WBC is up to 8.2, my crit is 37 (up from 25), and platelets 223. That's pretty damn good. Pretty damn normal. Normal enough to start chemo. I was like "whoa there, I don't want to take Cytoxan because I don't want lymphoma and I possibly DO want babies." And Dr. K was like, "Jessie, I wrote a paper about how Cytoxan in such small doses as I'm giving you has no effect on whether you get cancer again and EVERY drug I give you has the possibility of rendering you infertile, but you're young and we'll just see..." And I was like, "meh, good enough, shoot me up."

Cytoxan in. Ara C shot #1 (of 8) done. This was the last big one. There are lots and lots of small drugs to come, but the Cytoxan is the last drug that will send my counts down and make me feel really bad. Ara-C just makes me not hungry which is awesome since I found out by reading my chart that my ideal weight is FORTY FIVE POUNDS less then I weigh right now as 5'8" and a size 10 (with huge breasts, I might add). Will someone redo the BMI already? I think we all realize that it's totally fucked up to call me obese.

The Cytoxan should take full effect sometime early next week so I'm planning on gettin down and partying at Brandon's b-day tomorrow. And perhaps visitors from the South will arriving on my doorstep? Have I ever mentioned what BAMF friends I have? I have BAMF friends.

It's so good to keep doing the "lasts." A couple weeks ago I could tell my nurses, "this is my last Adriomyacin." Today I was able to say to everyone "this is the last Bad Drug I have to take." It was almost scary. On one hand I totally hate chemo and I hate what it's done to my life, but who will I be and what will I do when I have to merge back into the semblance of a normal life? I mean, luckily I have monthly chemo for years, but when they pull the Hick, when the big stuff is over, when my social life doesn't revolve around the nursing staff at the Swedish Cancer Center... My therapist was like, "the transition back can be rough." And I was like, "hah!" But today I had my first taste of panic. I've gotten really good at being a cancer patient. I'm like the best cancer patient at Swedish. Everyone loves me. I do everything I'm supposed to... anyway, I'm good at normal life too, I just saw the light at the end of the tunnel today and it was really bright.

Balder than ever?

2008-09-03T20:20:00.000-07:00

Well tonight I was sitting in the kitchen at the counter telling Julian and Krista about how my dad was not only completely unimpressed with my 4 mile run, but urged me to do more cardio because yoga really wasn't much of a work out. Yeah, I know. What the fuck? But this is my dad who I love and who is a good man who really just doesn't think anything is quite good enough. He also told me that I needed a hobby, "a good craft project" when I told him I was too exhausted to manage work and life a few months ago. What can I say? It's hard for him that I am sick.

OK. Moving on. So I'm telling J and K this story when I notice there are little hairs all over the counter. Gross. Turns out they are MY hairs. Yes, my time has come. After 3 weeks of Adriomyacin, it makes sense: my hair is falling out. So instead of having a "party" this time around, it was just me in the bathroom with a safety razor and it was cool. I mean, if Richard isn't going to shave my head I refuse to settle for anything less. So here are the shots from head shaving #2:

The hairs this time around are shorter, but some of them are as long as 5/8 of an inch! Go little hairs!
I slightly despaired at this point and wondered if I should have gone back to Abraham at Kicks 'n' Cuts who gave me a free shave last time. But I was already committed. This project took about 45 minutes. I had more hair than I thought and getting the stuff around my ears was TOUGH.

Ah, Mr. Clean again. I only knicked myself once and while there are a few spots that could probably use a little more love, I am good for now and will correct the rest in the shower later. Being bald is OK. I was definitely pred-chubbier last time around.

Let's compare: this was taken on March 15th. I am holding up my sweater because the pred has given me a double chin like what

So I am happier about being skinnier this time around.

In other news, I think my blood transfusion from last time is bonking out because I took a 2 hour nap yesterday and a 3 hour nap today. I'm just tired. Tomorrow I see Dr. K and we may or may not go the Cytoxan route. I have serious reservations. But mostly I can't wait to tell him about my 4 mile fun run. It's my goal to be the best cancer patient ever. Give me an A! Give me an A! Approval! Approval!

"Fun Run"

2008-09-01T15:12:00.000-07:00

Today Krista, Julian and Lissa ran a half marathon for Muscular Dystrophy. I said I would go and cheer as they crossed the finish line. Then I said I would drive with them in case they wanted to get drunk afterward and needed a DD. Then I realized that I would have to wait around for 2+ hours waiting for them. So I signed up for the 4 mile "Fun Run/Walk" figuring that I could definitely walk 4 miles. Well guess what? I CAN RUN 4 MILES. Heck yeah. I ran all 4 miles. Or jogged all 4 miles. I was so proud of my body! Fuck you, chemo meds! Rock on, blood cells.

Julian, rocking the official Team NoBea headband. You can't see it, but this homemade headband says "Team NoBea."

Breakfast of champions. Champions battle neuropathy with Glutamine.

Team NoBea: Me, Krista, Lissa, Julian. I did 4 miles in about 50 minutes, they did 13.1 miles in 2 hours 10 minutes! They credit me with pacing them the first mile and half. Haha. But let's pretend. If you ever want an 11 minute mile pacer, I naturally run an 11 minute mile...

Because I obviously have to post

2008-08-31T17:35:00.000-07:00

I have several potential blogging topics:
-How much I don't want to take Cyclophosphomide on Thursday and and my reservations about my treatment protocol/discussion of whether or not I even have ALL, etc.
-My growing connection to the NoBea neighborhood via my yoga studio. My growing connection to Seattle and community here
-The merits of John McCain's choice of Sarah Palin as running mate and how the Republican strategists seem a lot more together then the Dems
-Review of Murderball which I finally saw last night and loved. Segue into how much I miss playing rugby and my teammates

But I'm not feeling very bloggy. I'm feeling kind of tired. The blood transfusion rocked my world (energy! yes!) and I kicked ass in both my yoga classes so far this weekend. But now all I really want to do is watch the US Open, read, and eat. We're having a dinner party right tonight (cooked almost exclusively by Rachel--I contributed my 3-day old tabouli which is still pretty tasty) and I'm hiding in my room drinking diet coke. Last night Julian had a party and I came downstairs and stayed long enough to gorge myself on guacamole and say hi to his friend Sarah who I really like and then I retired for the evening--Murderball in bed. Perfection.

Check, check

2008-08-29T11:15:00.000-07:00

Went in for a blood check this morning before the long weekend... Whites are up to 6.6 (holler!) and platelets 127. Go bone marrow, go! However, my reds continue to drop and it seemed like a good idea to get a transfusion this afternoon so I can have a really fun 3-day weekend. Transfusions are mostly cool because you feel so much better with more oxygen circulating. They just take about 5 hours which is pretty boring. I'm going to go home and gather netflix and Miranda July short stories and head in at 2:30.

Again, blood donors of the world: I thank you.

I have no plans for this 3-day weekend beyond doing yoga, watching TV, and shopping for skirts and t shirts at American Apparel. On Monday we have a Quest reunion with Danina and Lynn and dinner club. Awesome!

Oh, and Sarah Palin? Perhaps I will write a brilliant blog about my thoughts on the DNC and those speeches while I'm getting stranger-blood dumped in my body. O e t t i n g e r, out.

The beat goes on

2008-08-27T10:41:00.001-07:00

My white count this morning was 4.1—that’s a fully functional immune system! The likelihood of me ending up in the Onc ward this week is very small. My crit (reds) are a little low and I will say that is the reason I only biked up half of Beacon Hill before getting off and walking. Low hematocrit and Adriomyacin. I heard a rumor I won’t bother to research that Lance wouldn’t take Adrio because it diminishes your lung capacity. Right. I bet Maarten took the Adrio like man.

Also, I forgot to mention in all my despair of steroid withdrawal that I got to see Jenny and Richard last weekend and it was sooooooooooo great. They brought philosophical discussion back to the NoBe Mansion. After they left Julian, Beth, my mom, and I debated the merits of organized religion as a political force. Jenny and Richard, come back and enrich our intellectual lives! No one will let me wax on at such length as Richard! No one!!!!

A new hero

2008-08-26T10:39:00.000-07:00

Forget Wolverine and Lance (who's a neo-con, anyway)

This is my new hero:
Maarten van der Weijden (he even has a cool name). He just won a gold medal for distance swimming and he had ALL seven years ago AND a bone marrow transplant. Thanks, Duane for the link!

New life plan: learn Dutch, move to the Netherlands (where they have good health care and attractive people), marry Maarten and be happy forever. Swimmers are hot.

made it through to the other side

2008-08-25T18:52:00.000-07:00

Whew. I woke up this morning feeling... normal. Well, Jessie-normal. I did 90 minutes of yoga and rewarded myself later in the afternoon with rice pudding from the Carniceria downstairs. It's really good rice pudding. I further rewarded myself by buying Half Baked for tonight's dinner club which is only me and CL.

Work was good today. It was kind of fun and busy and productive and I stayed later than everyone else for the first time in months. Of course I came in at noon, but it was almost an honest day!

What else can I tell you? I have raging acid reflux right now, but I just drank a glass of milk with 10 g of L-Glutamine in it. Today I begin my L-Glutamine regimen which should help with my returning neuropathy. Damn you Vincristine! Anyway, I had been taking it in pill form from the natural food store--100 g cost $14 and I had to take about 10 pills a day to get it all down. The powder was 1000 grams for $40 and it makes me feel like a buff weight lifter taking a supplament. As the jar informs me, I can just add this "tasteless" powder to my meal replacement/protein shake! Perfect!

whatever

2008-08-24T16:13:00.001-07:00

When Dr K suggested I taper off my steroids because I might crash, I was emphatic that I just was going to STOP taking them. That was stupid because now I'm experiencing withdrawal.

I feel like total, total crap. I'd elaborate, but that's sort of it. Crap.

And then some days you just want to tear out someone's eyes

2008-08-22T11:02:00.001-07:00

Fuck.

Can you please go meditate, pray, or do whatever you do?

The last day of steroids, cont

2008-08-21T16:06:00.000-07:00

I felt like the most bad ass cancer patient in the world this morning. After going back to sleep post-post 1, I woke up and packed my Ortlieb bag with everything I would need for yoga, work, and chemo. This required a high degree of organization. Then I BIKED to yoga (ok it was a flat mile) but it felt so amazing. I haven't been outside on my bike in almost 10 months and I LOVE riding my bike. I mean, I really love riding my bike and for some reason I just got kind of scared off after the cancer and my legs started failing me. But this morning I did it!

Class was great. I felt good energy to just push hard and got a great sweat in. Afterwards I talked to my really rad teacher a lot about cancer and she told me that I was inspiring. Compliments, compliments, compliments. Then I rode my bike to work and worked, worked, worked. Then I kind of crashed. I stopped feeling like Lance Armstrong/Wolverine and started feeling like the world was crashing down around my shoulders. Shit. You know what Lance Armstrong and Wolverine will never have to deal with? Getting their period. Yes, it's here again. Hallelujah, but steroids and hormones together? Jesus, if it weren't for all my freakin meditating I probably would have had a complete melt down already. As it were, I'm just giving myself a break here, drinking some coffee and I called my mom and she's going to drive me to chemo as opposed to my original plan which involved biking to chemo... Some day!

Some days I just feel so good. I talk about this with my therapist and we talk about it a lot in yoga--not expecting things to be the same every day. Not letting yourself think something is going to be hard or bad just because it once was. I talk a lot about being ready for anything to happen, but when I say that I mean I wake a lot of mornings expecting to feel wonderful despite all the shitty things going on inside my body. So while my uterus does jumping jacks and my colon takes its sweet, sweet time moving anything out of my body, today is my last day of Decadron and JENNY AND RICHARD ARE COMING TO VISIT. Maybe I'll put off my weekend of despair for a bit to eat lots of unhealthy veggie food with them.

Tonight I get pho!

The last day of steroids

2008-08-21T04:35:00.000-07:00

Well, I can't think of a better way to start my last day of Decadron then with a 4:30 am post. I feel ok. Not too crazy right now. Not like last night when I came home at 8:30 to witness a double dinner party (after myself and the house cleaners had spent the afternoon meticulously cleaning the kitchen) and was like "If this isn't clean tomorrow morning I'm going to have a nervous break down." Then I took some Klonopin, ate some food, and chilled. I really love my roommates and they took my baby freak-out gracefully and just pacified me with portobellow mushrooms. Mmm. Roommate love.

Things. Things are ok. Today is my last cocktail of the stomach killer: pred, adrio, vincristine and while I'm grateful to hopefully go back to regular bowel movements and a peaceful esphogus, step 2 (we can talk about it now) is scary. My next drug is Clyclophosphomide. Its two main side effects are Lymphoma and Infertility. Talking about poop is one thing. Getting graphic with my friends and roommates about all the correctal, Maalox, stool softner, etc I'm on often leads to funny conversations. And even while it's painful, it's... OK. Pubic hair falling out? Funny!

Lymphoma and Infertility are significantly less funny. And they aren't immediate. And I can't control them with more OTC drugs or Zofran. And who the hell knows. And yeah I'm in a very low risk threshold. So enough about that.

Today is Bekah's PetScan. I don't talk a lot about my other cancer-buddies out of respect for their privacy, but today is important and Bekah is one of the most significant connections I've made since diagnosis. If you love cancer blogs (and who doesn't?) and brilliant, sassy, thoughtful, generous, and attractive young women with cancer (obviously, you do!) check out Bekah and send her whatever you send me. It seems to work--my generous community!

Last night (speaking of great young ladies with cancer) was my LLS group. It turns over a lot--cancer being such a transitory disease, but this was perhaps the most successful group I've been at. There were 4 of us--all currently undergoing treatment. All young women between 22-30 and able to talk to each other. It's always nice to go to LLS and talk about cancer with people who REALLY get it, but for some reason last night was just easier and more fun. I was really impressed with the other women and the insight their stories provided. And now being 8 months into treatment I'm starting to feel like a wise old cancer lady. Very positive.

Cancer and The Bus. I ride the bus to Pike Place Market to see my therapist on Tuesdays. In the polite world, most folks never stare at my Hickman and only take side glances at my short hair. This is not true on the bus. I am guaranteed every ride to engage in a conversation with a COMLETE stranger about my health status. I like it. It feels so honest. And I love to talk about myself. And so far everyone I've encountered has sent me away with genuine well wishes-- random acts of kindness. On Tuesday night the two random women standing next to me (who didn't know each other) were both survivors and for 10 minutes we just made awkward conversation about cancer. But I liked it. There are places other than Swedish where I'm not a freak. I'm not a freak on the bus.

Manic Roid Machine

2008-08-19T07:06:00.000-07:00

I just woke up with that blog post title on the tip of my tongue. Manic. Roid. Machine. Sweet.

Here is the good news: I only have three (3!) days of decadron left! And while I feel completely insane about 30% of the time, hyper is slightly better than depressed. Hyper. Really hyper. And then hyper CRASH! BANG! And I just drank an entire bottle of Maalox in 24 hours.

Last night I made dinner for fourteen (14!) people! It was dinner club, plus my fam, the roommates, and some Corvallis kids. Here is the delicious menu:

Black bean burgers from scratch!
Black beans mashed (with a few whole ones for appearance)
Walla wallla onions, peppers, zucchini sauteed
garlic, lime, salt, cumen, whatev
bread crumbs (gluten free!)
with a little egg to hold it together
**I broiled the burgers (both sides) on a lightly greased pan (they held together very well) and served with avocado, tomato, onion, pepper jack, and condiments on sourdough English muffins. Or tapico hamburger buns (for those of you who can't do the gluten.)

MMMMMMMMMMM

Gluten-free tabouli!
quinoa
chives
tomatoes (seeded)
cucumbers (seeded)
chopped mint
chopped parsley
garlic
olive oil
lemon
salt

Desert was the approx 4 lbs of blueberries I picked on Sunday afternoon mixed with fresh peaches, lime, and honey. We served it over vanilla ice cream and CL made the most decadent blueberry cobbler. I love food. I love community. I love Klonopin my new anti anxiety med that made it possible to lie down and stay lying down all night (even if I didn't exactly sleep) after my guests left and I had manically cleaned the kitchen (with help) several times. This isn't nearly as bad as last time's bought with steroids and it's almost, almost over!

Thursday is my last cocktail of Adriomyicin, Vincristine, and Decadron. After that I get a rest before the Cyclo and Ara-C. My plan for this weekend is to do lots of yoga and just crash hard off the steroids. I hope I cry and sleep, and read a lot of books and drink a ton of water. If you want to come over and watch sad movies, I think that might be just what the doctor ordered.

But I'm getting ahead of myself. I still have 3 nutso days left and on those days I have lots of fun things planned like going to yoga with my sister in a few hours, seeing my young adult cancer group, hanging out with high school students and writing the first complete draft of my fall programming schedule. Boo yah, baby!

Roid on!

The Post that was meant for 8/14

2008-08-15T08:26:00.000-07:00

**Oh, happy Belated B day Annie P!**

So apparently my mom (despite continued check ins this week) put out the call that I wasn't feel so well when she posted her Jessie-update. I still haven't addressed this with her or her mass emails, but it seems we now need finally have the boundaries talk. What is, and is not stuff I want her to share with her email list. Here is the email that I sent out yesterday that reflects how I actually feel:

Warning: long, rambling email about cancer, general state of mental health, lots waxing philosophical, unforgivable bastardazations of Eastern Meditation practices, some irony, and wholy OK to skip through. But a progress update seemed necessary for many in my fan club. I won't be bashful, I have a fan club.

So here we are: the final 10ish weeks of intense chemo. It's kind of scary if I think about it too hard. Every morning I wake up wondering what my blood counts look like. Do I have an immune system today? Those blueberries I just ate—I forgot to wash them! I hope they don't have killer fungus! Etc, etc. But I've also gotten used to this cancer-life and really, I don't think it's that different than life in general. We never know what our day will bring—I'm just more… ready for the infinite possibilities?

Status: doing good! My GI track is losing cells which means I have to remember my antacids and not do things like eat spicy food and drink 10 cups of coffee a day if I want to be happy. I'm ok with that. Last night I made egg drop soup for the first time. Mmmm.

Despite an emotionally rocky July (this cancer business is taking WAY too long and I was getting a little burned out), lately I've been feeling extremely peaceful again. I feel lucky for so many things everyday: my job, my health insurance, my body's enthusiastic response to killing cancer cells, the practice of yoga and meditation, but mostly my wonderful, supportive, family, friends and community. I have heard so many people iterate that cancer cost them friends—that they learned who was really there for them. What I've learned is that EVERY one is still here from me: that my community and the love people have for me is stronger than I ever knew. And in this process I've also made friends: both cancer-related and non. I actually have MORE friends now I think… Weird. So thank you so much to all of you for your loving thoughts and words. Again, it's woo-ey shit, but I feel all the vibes you send me.

Right now my life is taking every day as it comes. It's mellow. I go to yoga, I go to work, I clean my house (massive doses of steroids again), I cook with my friends, I walk around Seward Park, and I hang out with high school students who make me laugh really hard and like to touch my Hickman line and hear about all the crazy, legal drugs I get to take. Fall should be exciting for me professionally—more turn over and rearranging has left me in a great position at work—autonomous, respected, in control of my own programming but great opportunities to collaborate! Yes!

I think of myself as building a bridge right now--a bridge back to normal life (having cancer, my use of cheesy metaphors is immediately taken without irony-relief!). Physically, my body has changed, and I'm learning where she's become so strong and the other places I've lost her. Mentally and emotionally, I'm still grasping all the issues I put on hold last January--namely: who am in the face my own life? With disposable income, a wide career track, burgeoning communities in several locales, food and clothing affectionada: how do resolve and distill what I really love above teh general hum? How do I make my life meaningful and in service of others? This was a journey I started in earnest about a year and, just above this last set of chemo-stream crossings, I see the path is back and it inevitability will look very different. Deep, huh?

I want you to know, that I have really come to accept the reality of cancer in my life: the drugs, the possible long-term effects, the sitting and waiting, the patience, the vulnerability, and at time deep exhaustion. And while I do try to save some of my emotions for healthy things like anger and sadness, I've mostly found that acceptance makes daily life do-able AND pleasurable. I'm still breathing and functioning every day and even though my emotions are often close to the surface, I kind of like the rawness and with which I get to experience things. But the over arching thought I really feel is peace. It's easy for me. No one thinks this is terminal and we (my onc team) feel like we're going to the end of something entirely curable. This process will leave scars, but maybe not the kind people associate with a cancer battle. And that's where I am.

My hair is also growing back (even though it will probably fall out again next week) and I'm including a picture of my re-grown eye brows. Following this period of intense chemo, I'll be on a maintenance protocol until 2010. I may or may not be able to grow my hair back, so I relish these last few weeks with my eye lashes. However, who knew I looked so good without hair? Other things that pertain to the future are that I will be in Corvallis in late-September for my friends' Clint and Ashleigh's wedding. I am so excited by the possibility of seeing so many of you! I promise not to drink too much at the wedding on Saturday night so I can go to church on Sunday morning, the 21^st! Also, watch out for a big bash in late October when they pull my Hickman line. I haven't gotten very far, but there's going to be party and nothing about this party will involve Denial. The party will be about moving forward, purging the house of chemo deamons, and hopefully me figuring out a way to honor all the wonderful people who have supported me ceaselessly in this process. Oooh, I get excited just thinking about!

Here is something my yoga teacher shared with me the other day that I find particularly inspiring: Every day we're all looking for truth, beauty, and immortality, and really, it's everywhere…

Lots and love,

Jessie

Truth, beauty, immortality

2008-08-13T13:25:00.000-07:00

So far, so good. I woke this morning with a peaceful belly and went to yoga. What it comes down to (I’ve decided) is that if I wake up and I feel good, I should go to yoga because I don’t know if I’m going to feel good again at 6pm when the next feasible class is. My therapist and I talked about this and apparently, that’s very healthy behavior (for someone who has such a flexible job).

Last night I had some prednisone mania—I cleaned out the refrigerator, went grocery shopping, and did a bunch of dishes. It’s such a weird feeling to hear your body scream at you, “Jessie! Slow down! I’m tired! Let’s watch TV” and my brain is like, “Um, we still have organize the Tupperware, and do you think the couch would look better against that wall? and I wonder what the weather will be like in Cabo in January? should I go to that yoga retreat in Mexico? I better make a detailed budget of my expenses for the next 6 months…” So then I took some Xanex (I’m going to embrace meds this time around) and was able to chill out enough to watch Broken Flowers with Julian. Jim Jaramush on Xanex is kind of hard. Boring is a good word.

Class was good. We talked about not letting the past and memories become a reality or something so fixed in our minds. Every thing is transitory and has the possibility for newness every second. When you’re trying to be optimistic about your last 10 weeks of hard chemo, this resonates well. It’s sort of what I’ve been hashing over with my therapist the last few weeks anyway because I have a lot of anxiety surrounding falling blood counts, hair loss, the unknown, etc.

The other thing my teacher said was that we’re all looking for truth, beauty, and immortality and that these things are boundless! For some reason, that just really made sense today.

Thanks, body

2008-08-12T13:36:00.001-07:00

Yesterday was not my greatest day. My stomach was quite unhappy actually. Instead of going out with my roommates giving Jake a proper send off, I lay in bed half listening to This American Life Episodes that a friend sent me last time I was in the hospital. Periodically I would wake up, resume the fetal position, hear Ira Glass’ soothing voice and then pass out again. At some point in the middle of the night I managed to finally void my body of every thing offensive and when I woke up this morning I felt so great!

There's nothing like feeling terrible to make you appreciate feeling great! It’s like when you have a horrible hang over and you finally manage to sleep it off. When you wake up you walk around all afternoon marveling at how amazing it feels not to want to die! That’s sort of how I felt when I woke up. Like, yes! To celebrate I went to a yoga class and sweated out lots of toxins and got myself good and tired. Awesome. So far, my lunch is sitting gently in my stomach. When I was meditating in yoga this morning I just focused my practice on gratitude towards my body for being well today.

I love yoga. I am going to try not to get too woo-ey about it on here, but it’s been everything I’ve needed. I feel like it’s helping me heal my body and my soul. I feel like I’m rebuilding myself from the inside out. I am so grateful for my teachers at Yoga on Beacon and that I can go so often. I am in a unique position at the moment—there’s not a lot going on in my life beyond treatment and I can’t really plan much for the next few months as I go with the flow, but there are 4 yoga classes a day all week and so it’s something I can always fit in or use to kill time constructively. And that’s all I’ll say for now.

Oooh, I love you!

Gosh darn it

2008-08-11T10:25:00.000-07:00

Would you believe that there’s a “Blogging for Blood Cancer” week and that this is it? Well, believe it, baby! Since I love blogging and in particular, blogging about blood cancer, I thought I would try to blog every day this week!

And how appropriate too. Because instead of feeling all healthy-like I am feeling pretty cancer-y today. My chemo from Thursday night is starting to take effect: my mouth hurts, I’m tired, my body is SORE from yesterday’s yoga class… Oh, cell death!

But before everything started to suck, I had a nice weekend. On Saturday I went to a community garden work project (yay community! yay gardens!) where there were goats! I love goats! And then my mom and I went to Nordstrom and bought new clothes. When I got home I forced myself to purge my t shirt drawer down to the scant few items I actually wear. Yesterday I went to yoga, had lunch at Geraldine’s (cornbeef sandwich, fries, diet coke, coffee) and then writhed in pain all afternoon because hello! my GI track is dying too! Buy I rallied for dinner at the Lemongrass with the Christinas and my mom. God, I love food. However, I think it’s back to wheat thins and bananas for the next few weeks while I wait for my stomach lining to come back…

Check out this fuzz!

2008-08-09T21:00:00.000-07:00

So here I am with my new 1/2 cm of hair! And look at my eyebrows! Cool, huh? Well, I'm excited even if the fun won't last too long.

On Thursday night my counts were finally high enough to start my final round of Bad Chemo. Bad Chemo is 3 weekly doses of Danorubicin (adriomyacin) with Vincristine and steroids. This is followed by 1 dose of Cyclophosphomide and 8 Ara-C shots. Then Bad Chemo is over! After Bad Chemo comes 4 more weeks of the Methotrexate and then, then, then they pull the Hick?

So the bummer about Bad Chemo is:
-hair falling out again
-possible mouth sores, exhaustion, neutropenia, anemia, fevers, etc.

Dr. K is letting me do all of this out-patient if I promise to let him know immediately if I start running fevers. I also have to promise to check myself into the hospital willingly if things go south. Bad. It's about a 50/50 chance that things will get yucky.

Precautions involve avoiding germs like there's no tomorrow. I dont' know what this means for me and yoga because yoga involves rolling around on (mostly) clean floor and getting so sweaty my bandage falls off the Hick. I would be really sad to stop practicing for a few weeks, but even sadder to go back to Swedish 12 East! (For those of you not in the know, this is the Onc wing of the hospital where I'm treated.)

Just in case people were wondering about doing helpful things for cancer patients, I think the big thing to do is get out there and give away your beautiful healthy blood. Over the course of the last 8 months, about 36 awesome A+ blood donors gave one unit each that helped me with low platelets and non existent red blood cells. Thank you, blood donors!

(Is the Prozac working or what!)

Peace

2008-08-01T10:06:00.000-07:00

I took two Xanex, slept for 10 hours, and am no longer on the war path. But sanctimonious fucks who shave their heads for little kids to get attention from their friends still suck balls. Run a fucking marathon like everyone else, tough guy!

I think Wolverine would probably give them a slashing.

Jessie gets angry

2008-07-31T22:30:00.000-07:00

I was just internet-ing and came across this website:

http://www.stbaldricks.org/

I find it OFFENSIVE when people shave their heads to make cancer patients feel better. It’s stupid. It’s so fucking stupid. How can you equate you shaving your fucking head with the fact that I am taking toxic poisons that are making my hair fall out (and my stomach cells die and my mouth break out in sores and oxygen harder to circulate) ? You don’t have cancer. You don’t want cancer. What are you doing fucking shaving your head? And why didn’t you pluck out your eye lashes and shave your eyebrows while you were at it? Because you’re fucking vain and you look stupid without eyebrows and eyelashes? No shit! But that’s what happens when you have cancer, you self-serving ass hole! It’s so fucking trite. It trivializes the whole experience. Having cancer is so much more than losing your hair. Wow, I am really heated about this. I actually didn’t tell one of my friends that I have cancer because I know her to be a head shaver. She would shave her head, say it was in solidarity with a cancer patient and then everyone would tell her how cute she looked. Oh my god, I’m getting so angry just thinking about it.

So anyway, a few of my female friends did (in infinite sweetness) offer to shave their heads and I let them off the hook. If I’m sad about losing my hair, why would I want that for anyone else? I don’t. And I kind of earn the right for people to feel sorry for me in my baldness because I actually have cancer. People who shave their heads who don’t have cancer do not deserve the same level of pity-driven respect that I get when I tell people my hair loss is due to cancer! It’s one of the 2 perks! The other perk is that I’ve lost 15lbs. Of course I have to pretend to be sad about that too. And everyone has to pretend that it’s bad that I’ve lost weight and that I should gain it back. Only my bitchy roommate was honest enough to say, “God, I’m jealous you’ve lost so much weight.” Of course I look better! America is obese--most people look better down 15lbs. Even people who are a normal weight. Skinny is hot. But it’s OK, I know why you can’t tell me I look great and why I can’t tell you that I’m happy about getting skinnier.

**Note: when I shaved my head, so did my friend Richard. And I really appreciated that I got to wield the clippers and someone else was shaving their head, but Richard is a man with short hair who looked very attractive with a shaved head. So I definitely appreciated the company, but no one ever tried to equate our experiences.

Anger is the word of the week. I’m pissed. I’m pissed about having cancer. I’m pissed about other awesome people having cancer. I'm pissed my counts were too low to start chemo tonight so I have to wait, WAIT another fucking week to get this over with.

When Kelly was here we talked about how this is really just kind of a shit time. That even folks without cancer were having a pretty hard time making decisions. It’s this damn awkward mid-20s. I actually was discussing this with my shrink as well. I was doing some questioning, soul-searching, self-absorbed mulling BEFORE I got cancer. Then I got sick and it was like I kind of got a little break from making stressful, grown up decisions. I know, I’m lucky, right?

Speaking of Kelly, she and Jade were here this weekend and it was awesome. We just hung out, Tripod-style. We went and saw Mama Mia which is a good girlfriend movie. A really good one. The one thing the three of us lack is a cheer. So Kelly is working on that.

Also awesome: The Departed, my friend Sara Gribs, yoga, high school students, and both the potential roommates we interviewed.

Miss me?

2008-07-25T11:35:00.000-07:00

Two weeks? Sorry I’ve been absent. I know you need your JessieO-updates… Things here are, well, they’ve been better.

A couple weeks ago when I was talking to Dr. K about all the sleeping and anxiety and general badness I’d been experiencing he was like, “Jessie, I think maybe you’re depressed.” The thing is, depression doesn’t fit into my idea of myself as a superhuman. Was Wolverine ever depressed? I doubt it. I mean, sure he was moody and dark a lot, but he never wussed out and started taking Prozac and crying in a shink’s office. Sorry. I’m taking Prozac and crying now, so I can make those jokes.

Oh, where to go from here? I don’t know what to tell you. AC pointed out the other day that I’m not very good at saying how I feel right now, but would rather tell you how I felt yesterday/last week and how I’ve processed those feelings in the mean time.

What I’m working on right now is being sad. I know that I obviously whine a bunch about things that aren’t going well and have general feelings of blah-ness, but it’s been hard for me to be sad about anything. Every time I try to explore feeling sad, or mourning things that have been lost in this process I try to cheer myself up/not tempt fate by reminding myself of all the things that are going well. I’m serious. It’s really hard for me to get any good woe going on because I always have to remember how damn lucky I am.

I’m not sure how I feel about the Prozac. I was really not interested anti depressants initially because I felt like this whole depression thing was situational and not really an issue of chemical imbalance. But my therapist was like, “why feel so bad for the rest of this situation when you could feel better?” and I was like, “hmm…” not letting on to my “What Would Wolverine Do?” mentality. Anyway, it turns out that admitting that I am depressed has helped a lot. It means that I have identified a problem to solve. Sweet. I’ve been talking to someone about being sad and going to yoga and walking to work and FORCING myself to be awake and socially engaged and it’s working pretty well. And it also turns out that the Prozac is making me dizzy so I’m going to talk to Dr. K about what would happen if I stopped taking it. I’d really rather not play around with brain chemicals and I’m feeling better.

Not much else has been going on with me. I’m going through the motions and some day things will be better. I see Dr. K on Wednesday to see if I’m ready for the next round of chemo. We’re looking for another roommate so that’s kind of exciting.

Kelly and Jade are coming to see me this weekend! They’ll be here tonight and are staying through Sunday. We will probably just have an eating and lying around weekend, but as Jenny and I were discussing, those are like the most important people to have: the people you can do nothing with.

Not the best week ever

2008-07-09T22:36:00.000-07:00

Things have been a little rocky around here lately. To summarize the last week, I have felt totally shitty and spent the majority of my waking hours in bed watching TV on the internet. Mostly it’s my stomach, but I’ve also just been really, really tired. On Monday I went into Dr. K who was like, “call me when you feel this bad!” and gave me some good anti-nausea stuff. I know I need to do a better job asking for things like drugs, but the thing is, I hate the idea of taking lots of pills. We’ve been down this road before, internet, remember? Anyway, my stomach is better, but I’m still pretty freakin beat.

How anyone could spend four days in a row not getting out of bed? How would she occupy herself; keep from going bat shit crazy? In an effort to reorient myself with pop culture, I watched the first three seasons of Weeds, and then started in on Heroes. You might wonder why I didn’t watch the fourth season of Weeds… it’s because Weeds sucks. I know, I watched 40 episodes in 3 days. I despise all the characters and the fact that they just make life insanely difficult for themselves. Heroes is a little better, but I think I just hate TV. Speaking of TV, I re-hooked up ours to the bunny ears so we get 5 stations again and tonight I watched about 10 minutes of Girlalicious. It was disgusting, but very soothing. Actually, it’s fairly remarkable that I watch as little TV (Weeds binge aside) as I do being so lame and bed ridden for the last 6 months…

I’ve felt so… scared this last week. Feeling crummy again brings up all sort of unpleasant memories and anxieties. If I feel this bad now, how am I going to react to “Re-Intensification” in a couple weeks? You know I have to go back to the hospital right? I am just now realizing how completely terrifying I find this prospect. I have serious stress about it. I actually have a list of things I’m pretty worried about regarding my next cycle of drugs, but making a list now before anything happens doesn’t seem like it would be that productive. It’s just the unknown, you know?

Tomorrow I’m taking overnight trip to the North Cascades for work. I’m just hoping I find some crazy energy surge to help me make it through… Oh, and did I mention I gave up coffee because it was irritating my stomach? Boo!

But as I like to say, every day I just get richer and thinner. So that’s good.

The Gays: Something to be Proud of

2008-07-01T18:46:00.001-07:00

Bad picture of hot Lesbian Firefighters

Gay Churches
Gay Seattle Utilities!

Let's get Physical!

2008-06-30T15:17:00.000-07:00

There’s so much to tell you, dear internet! First of all, I love you. I love you in the complicated way that grown-ups love things.

What have I been up to? Well let’s see. Putting out little fires at work. We’re firemen, Kerry, that’s what we are. I know I should say “fire people” but Fireman is just kind of a sexy word. Speaking of sexy firemen that are women, yesterday was the Seattle Gay Pride Parade and you bet the female firemen marching in the parade were about the sexiest lesbians I’ve seen in a while. I mean, besides all the sexy lesbians that I actually know. Which is a lot of sexy lesbians. What do you want to bet happens when people google “sexy lesbian?” They’ll end up right here! This is not what I thought my post was going to be about…

Um. Moving on. Getting physical. Last weekend I went to a yoga class, but I promised Nathan I wouldn’t be one of those people who talked about yoga a lot. I’m going again tomorrow. I think it’s a better way to spend money than the co-pays at the physical therapist who just had me walk on a treadmill for 20 minutes.

On Saturday I went hiking up in Skykomish with Julian and Beth who are training to climb mountains. I was hesitant to bring my out of shape bones with them, but they found a trail that had a nice lake-y, stopping point mid-way so I didn't have to go as far as them. I brought nectarines and the Amber Spyglass to occupy me and spent a nice 3 hours sitting on the shore of a beautiful alpine lake, enjoying the quiet and the nature. It's my job (sort of) to have high standards when it comes to trail maintenance, but still, trail was a total disaster (spring storms) and we had to bushwhack and clamber in the first mile which was pretty exhausting. I only made it to the 2 mile mark which was the lovely Trout Lake when I decided it was Golden Compass time. I won’t pretend like the hike was burlier than it really was because Julian sometimes reads this and I don’t want him to think I’m a liar or an exaggerator (even though I’m guilty of the latter often enough,) but I was pretty tired after 2 miles. Mostly I felt extremely nauseated. The methotrexate gives me this very subtle baseline nausea that’s not so bad, but combined with “strenuous” hiking, it was kind of pushing it harder than I wanted to push. Bah! Damn you, cancer! I am impatient to be through with you and get my body back!

Yesterday I went to Pride with my friends. It was really fun. I will post pictures because I remembered my camera. And then I remembered to take pictures. Glory be.

What else can I tell you about my week, internet? It was all about work! That’s why I can’t say much… When I was in PGH the other week, I noticed my colleagues running around all crazy-like and I remembered how I had been like them last year. And I thought somewhat condescendingly that they really needed to chill out and have some cancer-perspective (cancerective?) about life… Anyway, it was just that I was in denial of how much work there is and I ran around all week like a crazy person and dreamt about work every night that I didn’t take a Xanex and Ambien combo. Today, I feel like I have time to breath for… the next 20 minutes. Then I’m going to see Dr. K. He was gone last week and I kind of missed him. I never go two weeks without seeing my Oncologist-boo, so it will be good to see him. I’m going to ask him about BRAC-1/2 gene today.

Oh and last Monday I got my period again. That’s 3 in a row, every 28 days. This means that I’ve only missed one since starting chemo which I think means my reproductive system is obviously all systems go. Luckily I got tons of condoms at Pride yesterday, so just in case I ever have sex again I will be prepared. Like that will happen!

Bonfire of the Vanities

2008-06-23T12:56:00.000-07:00

One of my last surviving vanities in the chemotherapy experience is my fingernails. I have nice hands. Nice nails. I don’t bite them. They grow out and I file them and I am very vain about their appearance. I rarely travel without an emery board. As promised, my nails have weakened in the last month and are now breaking. But they’re breaking low down on the nail—like on the bed. This is painful AND unsightly. I’m pissed. I feel pretty done with this whole experience lately. If I had lymphoma I’d be almost done by now! But no… And sitting through the rest of this interim maintenance period is killing me. I just want to get to the hard stuff so it can be over and I can start living my life as normally as possible. Does that sound unreasonable to you?

Lately I’ve been more afraid of cancer. This IV methotrexate isn’t bad, but it’s enough of a reminder that something is wrong that I’m dealing with another layer of acceptance. I have to really focus on my mantra of living every day for itself and not trying to project into the future where I will/won’t be alive. I realize this sounds incredibly melodramatic, but you don’t know—you just don’t. Some people’s bodies just want to die.

I’m also thinking a lot lately about breast cancer. There’s something about it that is pulling me in—maybe that it’s so female-centric, but I feel like this connection with the breast cancer folks. First of all, they have cancer, and secondly there’s something about the movement that feels more body-oriented. I don’t know. My mom’s family has a strong history of breast cancer. My aunt died a year ago of breast cancer (she was treated at Swedish as well so everyone recognizes our last name) and both my grandmother and her sister had it. There’s now a test you can do to find out if you have this gene… if you do, you have like an 87% of developing breast cancer. Do I want to be tested for this gene? Would I have the prophylactic double mastectomy? Could I deal with doing this again? Could I please stop obsessing about this? Maybe it’s time to start taking the Xanex.

What it’s really time for is work. I need to go to work. But like I said, I’m distracted. And all I want to do is go home to my distraction which is the third Golden Compass book. Annie P brought by a huge box of books the other week and there’s a lot good stuff in there. I read a good cancer narrative (about a breast cancer survivor) called The Red Devil and then yesterday when I was feeling a panic about not having enough to do with myself, I found the Amber Spy Glass. I can’t tell you how much of a sense of purpose the book gave. It was a reason to go back to bed and stay there which turned out to be very important because I just read, napped, and drank water. Fuck you, cold. I will kill you with my inactivity!

Alright. That’s enough for today.

Go Kerry Go!

2008-06-22T11:07:00.000-07:00

Today my friend Kerry is running an olympic triathlon in Philadelphia for the Lymphoma and Leukemia Society. As much I try to avoid EVER being corny, this really means a lot to me. Kerry signed up for this before ever finding out that I was sick. She was just one of thousands of folks who decided to raise cash for the LLS... to the tune of $4300! As far as my personal interactions with LLS, they organize and support the young adult blood cancer group I occasionally go to. And they help with bills. And I think that if I needed more help, they probably do a lot more for patients. They also fund research. Yay!

I just stayed with Kerry for 4 days in Pittsburgh and it was a good time. Perhaps not in the "we got soooo wild" sense, but I really like the people I work with. So we had a work-y good time which involves work (which isn't so bad), talking shit about work, and hanging out with other work folks (who are also a good time.) Pittsburgh was much prettier than I expected it to be. I was quite charmed, actually. Perhaps it was my fabulous hosts.

Now I'm back in Seattle and I am coming down with a cold. I won't lie, this makes me really nervous. One of the crazy things about having Leukemia is that I always am aware of my blood counts and how strong my immune system is at any given time. As of Monday I was looking at 4.4 WBC which is fine. Fine enough to start this new chemo drug, Methotrexate. But now? It kills me not to know... I should have hit my nadir about Thurs/Fri so what was it? Too low? Good enough to fight? Will I have to take another freakin week off treatment? Dr. K is on vacation. Every time Dr. K takes any time off work he says, "don't get sick while I'm gone!" When I saw him last Monday I pre-emptively promised "I won't get sick!" as he headed off for 10 days of much deserved vacation. I eat my words. But really? What did I expect? I haven't done nearly enough sleeping in the last two weeks and then I went to an event with over a hundred people in a small space for days on end, continuing not to sleep and also took two plane trips. Even 12WBC-Jessie wouldn't have walked away from this healthy. Bah! It is Sunday. I am going to go do something.

Packages

2008-06-16T22:46:00.001-07:00

My stupid organic deodorant failed about 20 minutes into today. It was sort of a sign that I was meant to wilt as well I think. The day was long, I had the new deep tired I've been experiencing weighing down on me and I was kind of a dud at all the meetings I had to go to. But the nice thing about this level of being tired is that you also REALLY don't care.

When I got home there were packages.

Package #1: Parafilm! I'm supposed to wrap the tips of my Hick in something when I shower. The Hosp uses parafilm, but apparently the homecare folks and the pharmacy have never heard of it... This is some bad communication. After weeks of using Sararan wrap and haggling with different people at Swedish, I took things into my own hands and dropped $40 on my own personal supply of Parafilm.

So I think it's safe to say we all know which boy I fell in love with the summer I was 17, but I can narrow it down almost to the moment. It was after he tried to heat up some top ramen using a parafilm cover (it melted wax into his meal), but before he actually ate the noodles and parafilm. Gross.

Package #2: eBay purchased jeans. It seemed like too good a deal to be true. And it was. I found my favorite brand of jeans, favorite style, and new size on eBay for $130 off retail price. And it turns out someone hemmed the inseem to 30". All sales final. FUCK. They do fit perfectly, they're just a smidge too short. Someone pointed out that maybe I'll be able to let the hem out a bit, but upon further inspection, I think it's going to be close. Whatever. Andrea wears her jeans that short all the time and it look really CUTE so maybe I just need some Vans or something.

I am so tired right now. Going to Portland was an awesome time (drinking, friends, food, family) but it probably wasn't a good idea in the long run. I'm already deep tired and I have to get up at 5:15 tomorrow morning to fly to Pittsburgh for another work thing. I will be home on Saturday.

Cancer news flash: Today I started IV methotrexate and Dr K threw in a little Zofran and Decadron to ease any possible side effects. I am non plussed. The Z makes me really constipated and the 'roids make me crazy. Whatevs, still feeling OK tonight.

Alright, I must shower and pack and then sleep because QRachel will be here in about 6 hours. I can sleep on the plane right?

Proud, proud moment

2008-06-11T13:58:00.000-07:00

Corvallis makes it on to Stuff White People Like!

The Itch

2008-06-10T21:23:00.000-07:00

I've been feeling particularly antsy and angsty the last week or so. It's like I constantly need to be entertained and when I'm not, I get really irritated and down on life. I need more to do.

The itch is literal too. It's been months since hardcore chemo and weeks since my last spinal tap, but suddenly I itch. Everywhere. It's a roaming itch. I've heard that this can be a side effect, but now? The fun just doesn't stop, does it? The good news is that my peripheral neuropathy seems to be getting better. Last night I went for a run that felt like a run. I was able to push off my atrophied toes and not feel like I was going to eat it. It was awesome. I ran a little over a mile and then walked because I came around the exposed side of the Seward Park loop and was almost blown across to Mercer Island. Well, the wind was about 45 miles an hour... After a really awesome dinner club I came home to find out that the power was out in North Beacon Hill. Really with this, June?

Just a normal girl

2008-06-07T12:12:00.000-07:00

With a hangover. Last night I embraced the "normal," drank tooooo much wine and gin, and sang "Alone" by Heart at the Beacon Pub. It was a hit. I had forgotten what drinking is like and what drinking too much is like and what the Beacon is like on a Friday night: mostly awesome.

Dr. K said my WBCs are still a little low to start the methotrexate so I'm off for another week. This means that I won't be starting back on the Big Guns until August. I didn't expect to have all of July to enjoy good health and no steroids, so now I'm looking for things to do.

I am so happy that Jenny and Richard are here!

Self Portrait: What remains after radiation

2008-06-05T18:52:00.001-07:00

Keep bleedin

2008-06-05T17:57:00.000-07:00

Coming back to work today was hard after my three-day week day weekend. I was feeling kind of like everything sucked and life was devoid of meaning. Even a huge bowl of veggie pho from Pho Hai Yen couldn't lift my spirits! However, 30 minutes on the trainer has left me feeling optimistic. I think I will live another day!

Speaking of pho and food. Nathan and I went back to Geraldine's for breakfast yesterday. I have now been there three times and two of those meals have rivaled the best sexual experiences of my life. Read that as you will. I'm just saying. If I thought their grilled cheese was amazing, it was only because I had not yet tried the fried egg, bacon, and arugula sandwich. Sweet Moses.

What else can I tell you? I can't stop listening to Keep Bleedin Love and I LOVE it. Tomorrow I go see Dr. K to hear about my blood counts. This week we start oral methotrexate (as opposed to spinal methotrexate). I am assuming that no one from Dr. K's called me this week because there is no contamination of my Hickman line.

Oh, and here is part of g chat transcript from today:

oh yeah, and that story about the hickman, made me think about the time i had a hand in pulling out a woman's central line, it was terrible. i think it hadn't been put in properly, but i was there when it fell out just after she had had explosive diarrhea and we had rushed her to the bathroom, so i felt really bad

you shouldn't feel too guilty about cutting that line, but i bet you are already over it by now

3:44 PM by the way, your one eye looks really pretty in your blog photo

very dark and ponderious

i mean ponderous

is that a word?

ponderful?

See? It could be worse... (notice how I left the compliment on the end--without eyebrows I need lots of compliments...)

Oh, it's coming

2008-06-04T20:53:00.001-07:00

This upcoming weekend is the Return of Jenny and Richard (to Seattle). It's also the Return of Kathryn and Ben (to Portland). With so many friends, what is a girl to do? Do it all! This weekend Jenard! Next weekend Benryn! How will my friends respond to these new names? What would Chris Noth do? How many ambien can a girl take and still type semi functionally?

So Moses, I am tired after these last few days with a man who truly is Every thing Nathan. It was all Nathan all the time. And lots of eating. And drinking. And couching. And yes, we did g chat while sitting in the same room. Judge not, lest ye be judged. You don't want this man to judge you:

Week day weekend

2008-06-03T17:53:00.000-07:00

I've done nothing but eat, computer, and watch TV for the last 48 hours. And continue to lose my eye brows.

Where does the time go?

2008-06-02T08:49:00.000-07:00

Really? It's been more than a week? Sheesh. Things have been busy and I was out of town for a while for work.

In Cancer News:
Wednesday night I was an idiot and used SCISSORS to cut the tape off my Hickman. Then I cut my Hickman line. BIG FUCK UP. But thankfully you can repair Hickmans and I watched in terror and guilt as one of my precious lumens was amputated and then replaced. I feel like the biggest asshole, by the way, for doing this. It was so stupid and I compromised my health seriously (cutting a sterile line to my heart? nice one, JLO) and made unnecessary drama in an already busy week. I'm in bed so I don't want to get alllll the way up and get my camera and take a picture, but soon dear readers, soon.

So at this work thing I met a lot of new people and despite the tube coming out of my chest I had numerous conversations with folks where they asked me how I got my head to stay so clean shaven. Drugs, man. Drugs.

I think I might have also permanently put off a co worker who I have been trying to connect with for the last two years by being overly irreverent about cancer. Whatever, I'm the one with leukemia here. It means I do what I want. I say what I want. Yo.

Non Cancer News:
I very much enjoyed my time away from Seattle at my work-y type thing. Even though it high lighted all the things I hate about where I work it also high lighted all the things I like about where I work. And I contra danced which is hard when you're as gimpy as I am these days, but I will redeem myself in one year's time.

Now it's Monday, I have lost all ability to articulate, and I'm taking some days off because I just worked crazy a lot AND Nathan3 is visiting for a few days.

Who needs eyebrows anyway?

2008-05-22T21:28:00.000-07:00

I went to see the cancer physical therapists earlier this week. They seemed confused. They told me I was healthy. I guess when you work with aged, cancer patients, I'm a little out of the ordinary. I passed all my strength and dexterity tests despite my incredibly diminished abilities. It was almost a little frustrating--I felt like they didn't take my weakened state seriously enough. Being told you're in great shape when every day you encounter things that used to be easy and are now really hard is really annoying. "I used to be better."

I could go two ways with this. On one hand I've been spending a lot of time prepping kids and crew leaders to hit the field this summer and compared to them I feel completely inadequate with my current physical capabilities. On the other hand, in comparison with old, dying people, I'm in great shape and totally able-bodied! The therapists did recognize that my balance is pretty bad lately, so I'm going to get some exercises to improve that as well as toe strength. Apparently the neuropathy has lead to serious atrophy of my big toes which is a contributer to my lack of balance. Fun updates.

When I think about how little I knew about cancer or the reality of what it would mean for me, I never would have imagined this life. I mean, cancer has this huge stigma in our culture of death, infirmary, people "fighting" and being "strong"... and most days I feel really alive and normal. I don't feel like I'm doing battle. If anything I feel like I'm trying to hold my ground in a big windstorm (like the Cay.) And a lot of days I don't even feel like this metaphorical wind is blowing very hard. I forget that I have cancer constantly. I'm bald, I run into walls, I need to sleep more often, I go to the doctor all the time... but I don't feel like, sick. I forget that there is something potentially lethal going on at a DNA level and that life didn't used to be like this. It's kind of strange. I don't know how successful I am at communicating that to others or if my friends and family can see past the cancer. Not that people make me feel especially cancer-y, I just wonder...

The sun is gone

2008-05-21T10:40:00.000-07:00

Suddenly I find myself busy at work--with less time for blogging! Until I have anything interesting to say, here is a picture of me wearing my radiation mask. I can't decide if I should be a Buddhist Monk for Halloween or just wear this:

Eugene! Part 1

2008-05-18T21:38:00.000-07:00

This weekend was
a) Awesome
b) hot
c) Rugby Alumni weekend

What a sweet weekend. Hoolian and I left right after my last (!) radiation on Friday afternoon and drove down the 5 to Jenny and Richard's new place in Eugene.

Jenny and Richard have a cute cat. I miss Jenny and Richard. I wish we could fuse Eugene to Seattle and it only took 45 minutes to get there.

We went to Rennie's Landing to meet up with Dirty Ducks past and present. I didn't bring my camera because Ramey has learned the hard way that rugby drinking and nice digital cameras do NOT mix. If I were to paint picture for you... well, it was all my friends drinking a lot. It was great. Sometimes people seem afraid my physical body these days--like I might break or something. But my rugby girls just came up and rubbed my head and fondled my breasts and gave me lots of hugs and it was nice... I did see one old friend (non rugby) who didn't seem to understand that I had cancer and just kept complimenting me on my ballsy hair style choice! That was pretty great. I had almost 4 drinks over the course of the evening and felt quite merry. On the walk home we wandered into an apartment building and Jenny and Julian found us a route to the roof. After the proper amount of speculating about organized religion from the roof on a beautiful summer-y evening, we went home and binged on cookies. Mmmmm.

The rugby game was also fun. While I didn't play, I was able to run out onto the field and score my 4th tri in 7 years. Sweet. Oh, I forgot to take pictures. But it was really hot so we got Slurpees (I take the dumbest pictures)
Uh, I kind of ate constantly on this trip. Tasty Thai, Market of Choice dolmas, sushi, etc etc etc. Right now I feel a little disgusting actually. On the way home we stopped in Corvallis to see my family and now, finally, we are HOME. My room looks like shit and smells like dirty clothes. Tomorrow I have a spinal tap and my eye brows have started to fall out due to radiation. However, my warm, warm memories of this weekend make it all seem mostly OK. Eyebrows grow back and this will be my second to last spinal tap!

Today, today

2008-05-15T19:16:00.000-07:00

Today was sunny! I wore a skirt to celebrate. I was going to drink beer when I got home, but then my friend Steve sent me a ton of organic chocolate chip cookies so I just at about 6 of those. No more sugar for this cancer patient today!

Another insane thing about today is that I worked 10.5 hours! I have been averaging around 6-7 a day for the last few weeks, but today I was so busy. I'm hardly ever busy these days! It is so great! JK is leaving which is terribly sad because I won't get to see him every day anymore. No more long, nebulous programming meetings that take way too long but are totally enjoyable. I mean, I'm sure I'll sit through a lot more boring meetings, but I probably won't enjoy them as much. On the other hand, our program may double in productivity because JK and I are both pretty... tangential. And story oriented.

Tomorrow Julian and I are headed to the Eug to see Jenny and Richard and Leslie and allllll the rugby girls (except Shock and Liz Squffin) and perhaps drink some drinks and watch some rugby. I will try really hard to take pictures this time around.

Tomorrow is also my last day of radiation! I will miss my technicians and such but YES. No more daily appointments! Tonight I need to make some tasty treats to take in with me to the radiology department.

holler!

2008-05-14T16:45:00.000-07:00

If you google "will the world end tonight?" I'm #1! I'm #1 when it comes to the apocalypse! Could a girl ask for anything else?

"blah blah blah"

2008-05-13T10:22:00.000-07:00

I just deleted my last post because it was a little maudlin. This weekend I found out my cat died, it’s the anniversary of my best friend’s mom dying, and life can just be kind of stupid sometime. Blah, blah, blah.

This morning I decided that listening to these three songs on repeat was just going to make me feel like dying over and over:

Aimee Mann “Invisible Ink”
Peter Gabriel “Book of Love”
Nada Surf “Blond on Blond”

I know: Ridiculous.

So I decided to make a new mix. I have listened to Xtina sing “Fighter” about 10 times already today. It makes me want to hit people—but in an empowered way.

The Thaw

2008-05-11T14:07:00.000-07:00

Any good EcoFeminist knows that it's dangerous to create a dichotomy between the brain and body. For too many years the patriarchy has equated the masculine with thinking qualities and the feminine with the body and *baser*, more earthly things. They then used this dichotomy to justify wanton destruction of the natural world and the the subjugation women's bodies and minds. Blah, blah, blah dichotomies suck. Blah, blah, blah the brain and body are both beautiful. Thankfully because this is a blog there is no need for footnotes--just trust that I know a lot about this stuff.

OK with that for an introduction, I went running again today. My inner dialog went like this:
Brain: "thanks Body, for finally getting your act together."
Body:"You know what? Fuck you, Brain--you can't understand what I've been through and I'm doing this for me not for you just because you're all depressed and needing endorphins."
Brain: "Well this is hard for me too--I hate change! You aren't the only one suffering so stop feeling so sorry for yourself. You were never the superstar, anyway."
Body: "Why do you only love me when I'm skinny?"
Brain: "Oh shit, do we have to talk about this again?"

Uh. The point is that all of this is getting easier, but I'm still a freakin gimp.

Last night CL and Brandon took me to a Mudhen Rugby fundraiser--lube wrestling. Holy Moley I miss rugby. I miss the women who play. I miss the game. I miss getting hit. I miss hitting. I miss drinking beer like you've really freakin earned it. I miss flashing my boobs at my teammates and making really obscene gestures and the like. Next weekend is the rugby Alumni Game in Eugene. It couldn't come at a better time.

I feel like I'm at a good enough place mentally and physically that all of this stuff I had put "on hold" when I got sick is finally starting to... thaw out? Of course I have to be all cryptic about it because it involves people other than myself. So let's have a celebration for the fact that it's not all about Cancer and Me these days. Holler!

Getting honest with yinz

2008-05-06T10:08:00.000-07:00

I can’t decide if my site hits are going down because I’m healthy which is boring or because people are losing interest in my blog because it’s boring in general. I do get some hilarious hits due to people’s crazy google-ing. Like if you google “Abe Korn Corvallis” like someone did, you end up on this blog. Not that I blame that person.

Dear Anonymous Abe Korn lover,

Once in high school I dreamt I made out with Abe Korn. It was a good make-out dream. If he weren’t my friend on Facebook, I’d probably google him too. Actually, I google people I have crushes on even if we’re already friends. Once I googled someone back about 21 google-pages in an effort to gather information. Whatever, I’ve never said I don’t get a little nuts sometimes.

--JessieO

Quite honestly, I’m getting a little bored too. I mean, I talk about Cancer a LOT and the other day I was wondering if it was getting boring. But then I was like, this is kind of ALL I have going on right now. I pretty much spend my free time at the treatment center and I’m so hyper aware of my body and various symptoms blah blah. Like, Mondays and Tuesdays are rough because Monday I have a spinal tap, radiation, and I take a week’s worth of 6MP. Then I have a headache and want to barf for 2 days and then I feel great.

Let me tell you about the run I went on on Sunday. It was kind of hilarious. It was more of a gimp-jog since my legs don’t exactly… work right. Pred makes your hips really weak and I still don’t really understand what happened to my strength and balance when I was in the Hosp in March—but I’m pretty klutzy these days. I fall over a lot. When I make sudden movements I often lose my balance. Running, I felt like a baby giraffe learning to trust its legs again. I also did a lot of walking. By the end of my out and back along Beacon ridge I was focusing solely on getting a STRIDE going and it was a little terrifying. I’m going to attempt at least one run a week I’ve decided. The rest of the week riding the bike and walking to work/radiation should suffice.

Here’s the thing, I’ve kind of had it with all this. I want to return to… normal. I want to go running and lead a crew this summer and go hiking with my friends when the weather is good and drink more than one beer and develop a life outside of hanging out with oncology nurses etc, etc and I don’t know if that’s possible. But I don’t feel bitter or grumpy about it, just sort of… pumped up.

Challah!

2008-05-04T10:33:00.001-07:00

It's like I tell my parents, "when you don't hear from me it means things are cool and I'm just really busy and occupied trying to be normal." Not that blogging isn't normal or that I don't love the blogosphere or that I didn't write stupid things here incessantly before I got sick. Bah.

Things are mostly good. I'm a little sick to my stomach/dehydrated from the 6MP, but other than that... I've been trying to be "active." This means I've been riding my bike on the trainer, walking to work/radiation/home again, and yesterday Christina and I took an erie (but pleasant) walk around Seward Park. The thing is, I have these really powerful memories of running around Seward Park right before diagnosis and saying to Christina, "I just need some answers about what to do for the next few years..." And other memories of walking around SP with my parents right before I went into the hospital for the first time. And another memory of not being able to walk further than the first little dock with my mom when I got really sick. Somehow I'm not capturing all the millions of runs I went on there with M-Rachel or all the millions of runs I went on by myself or the triumphant memories of getting up to two laps without stopping, etc etc. Blah blah. I love Seward Park, OK?

Here is something fun. The radiologist (in defense of radiation no doubt) told me that if hair never grew back where LB was, it was because the tumor (not the radiation) had damaged the hair follicles. So the other day, I'm checkin out my cute bald head and notice LB is darker than the rest of my scalp. Upon closer examination, it's because the most dense hair regrowth is where LB is! I have this habit of rubbing LB that started long ago. For a while it was painful, and then it was kind of gross feelings, but now when I stroke the remains of my tumor, there are all these soft little baby hairs. TMI? I don't care! You're reading it!

In the last few weeks I've had a 180 on my baldness. Of course I still miss my hair and the identity that went along with it, but most days I look in the mirror and think, "you're pretty cute!" Some other awesome things about not having hair are: not washing hair, not struggling in vain to make hair look cute, not buying hair products to straighten/defrizz/curl/condition/wash hair. And of course there's my on-going fascination with androgyny...

Which leads me to the general topic of how I feel about myself in relation to sex and all that. When y0u have a giant tube coming out of your chest it's really hard to imagine having sex with anyone. I also realize that my lack of hair sort of kills the fantasy as well. Isn't that strange? I never realized how much my hair played into my thoughts of my own sexuality until it was gone. Thankfully (I guess) the initial anxiety of having cancer coupled with these crazy powerful drugs sort of shut all of that off for a while. What I find is that as my anxiety goes away (goodbye, Ambian! For now...) and my hormones say, "fuck you, chemo drugs!" I need to reconcile how to hold on to my sexuality and still be bald, tube-ridden, etc.

Well, I'd say that's enough for now. It's Sunday! It's sunny! Have a great day!

My ovaries: ass kickers

2008-04-29T20:04:00.001-07:00

I went to Portland for the weekend. I brought a camera full of new batteries and took approximately ZERO pictures. It was a classic and delightful time. Lots of time in Jade and Jesse's living room. Lots of eating. Lots of love from lots of great people. In this story of trying to break up with Portland but still be good friends, I think I'm there. PDX and I know we're not right for each other and I can see her flaws and remember why we're not together every time we hang out but not resent her for them. I love that we can be best friends again.

Now I'm back with my new boyfriend, Seattle and I missed him.

I started a new chemo cycle yesterday: 6MP, radiation, and spinal methotrexate. The spinal tap went a little rough--it took many attempts to get to spinal fluid. As a result, my lower back is pretty sore. Radiation is not much to write home about yet. It takes about 2 minutes and side effects (if I have any) won't appear for a while. So anyhoo, yesterday when I got home I was like, "damn, my lower back HURTS where someone was poking me with a huge needle... I should take Vicodin since I haven't even looked at it in about 2 months." I went to my closet to discover that someone has been regularly hitting my hydrocodon. Hmmm. Then I checked my Xanex. Also severely depleted. I'm pretty 100% sure I know which of my roommates has been taking my meds and it's like, "shit." What am I supposed to do? This same person owes me $215 in back utilities. But who steals meds from someone who has cancer AND is their friend AND is their roommate? That is just so fucked up.

Here is the truly awesome news of this post: I got my period again! Even after the 6MP overdose (and 6MP is a fertility killer) my body, my ovaries are still fighting. Since not being able to have kids is one of my greatest fears, and it's pretty rare to menstruate mid-treatment I am feeling really positive about what this all means. March left me a little shaken--our bodies are breakable (we need blood cells) and fragile and it sort of undermined my confidence in my physical body to take everything in stride, but this has definitely restored much of my confidence.

Final Assessment of Life This Week: Totally Awesome