Bonfire of the Vanities

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!

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

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

Corvallis makes it on to Stuff White People Like!

The Itch

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

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

Keep bleedin

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

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

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?

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?

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

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

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

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!

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"

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

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

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!

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!