Oh Holler!

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.

It can only get better!

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.

The last day of steroids, cont

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 Post that was meant for 8/14

**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

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

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!

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.

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!

My ovaries: ass kickers

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

Everything looks better in the morning

Shout out to Mike H, my radiologist friend, for some sound advice regarding talking to Dr. K and Dr. M (my radiologist) tomorrow. My mom is also on her way up to go to my appointments with me.

I spent the day recruiting at public high school. Always and interesting experience. On my lunch break I went to Nordstrom and dropped cash on new jeans. Yes, it made me feel better. No, Nordstrom does not have any cute shoes right now. They do have lots and lots of really hideous high healed/shoe laced shoes. Gross. And no, I did not buy the Hobo wallet I have wanted for the last 3 years even though they had it in chartreuse patent leather. I do have some self control...

Great News: my employer approved an extra 4 weeks of donated vacation time today. Barring any more 6MP-like fiascoes this should see me through to 2009. I might have hair by 2009!

Speaking of my hair, about 1 in every hairs is bravely trying to grow--they are about a centimeter and so sparse that you can't see them unless you get really close to me. They're so cute!

OK

New blood, feeling better, did some work-type stuff today but it was all very fun. Without saying too much, I work with high school students and since being diagnosed, I've had to give up one of the programs I run--the one where I interact with students regularly. Today they had an event and I went just to be there and hang out and it was great.

The only bad thing about yesterday was that at some point my Hickman got a "tug" which I don't even remember. When I went to scratch my chest, I noticed it was wet and looked down and saw blood seeping out of the gauze covering my port. Nothing about treatment has made me squeamish yet and I look at my own blood probably 3 times a week on average--but it's always where it's supposed to be... This really freaked me out. I couldn't watch while they re bandaged. Since it happened I am paranoid that something is wrong. I got good blood return from both sides and it didn't bleed through the new dressing, but I am had nightmares last night about it getting ripped out of my chest. Blah. Sorry if that paragraph made you as sick to your stomach as me...

But today. I got up, ate breakfast, and then did all sorts of productive things like pay bills, address thank you notes, and open insurance letters and put them in the pile of things to look at later... Now I'm lying in bed. I'm trying to come off all my non chemo drugs: the Ambian, the Xanax, the Vicodin--they're all on the market... KIDDING! But really, I don't like taking sleeping pills so I've decided to stop. I've changed my mind about "better living through chemistry." However, I'm going to talk to the doctor tomorrow about medical marijuana and bring in the forms to register for the Green Cross of Washington. It's worth a shot.

Update: I don't care how you feel OR Pollyanna finally takes her Ambian

Note about this post: I wrote it at 5am after waking up thinking about how to make delicious red lentils AGAIN... I had my little am cooking project, but blessedly just managed to take a 2 hour nap. That makes 7 hours in one day already.... OK: here's the crazy.

Friends, I am going crazy. I think I’m about to lose it. The Predisone is over, my hair is finally coming out for real (goodbye soft buzz, hello shiny Q ball), and I have Cancer. This is hard. Even when it’s all good news and Green Energy Bubbles and Things Working Out… I have this marathon I have to run. And I’m going to mix terrible metaphors like crazy and tell you that I know I ran the first part like a champion because I was in good shape and I had good genes, but I’m still scared and exhausted when I look at the next 20 miles. (Mile 6: arbitrary)

It’s been an insane few weeks and I knew at one point I was going to have to stop my warm up run, skirting along the Edge of the Lake of Objectification (oh, Cancer: you affect all of us! How interesting you are!) and I’ve definitely donned the crazy pants for a sprint or two (freak out!) but on my little journey here, I feel like I’m getting closer and closer to the door (run, path, CP, door, pick a metaphor!) marked “Jessie’s Cancer, come on in…” It’s cool, I call Crazy Pants Card (and I win, right LYLAR?) and at some point in the next 72 hours I hope I can open the door and have a meltdown in the hallway because I have a premonition that’s the next step. I feel it building in a gross, gross, yucky, melt-y insides way.

I like to think about things like Cancer and Health and Infirmary and what they Mean. I’m a big fan of the word “paradigm.” All of these things have been helping me tremendously in my effort to find context for a lot of my experiences. When the personal gets to be too much, they’ve helped me not think about me and think about how other people could possibly be feeling in relation to me. Notice: OVER.

The other afternoon on the phone I had this breakthrough with my sister. I don’t care how she feels. I also don’t care how my mom feels. I just can’t anymore. And it’s OK to blog this because I told Sarah that and she was the person who gave me the A-OK to say out loud and to feel it. I DON’T CARE ABOUT ANYONE BUT ME RIGHT NOW. Harry Potter-style, is this the password to get in my stupid metaphorical cancer door?

I mean, obviously I still have other shit going on and none of that is changing, but it’s 5 am and I think I just got about 5 hours of sleep (! Ambian+Red Wine) and I’m in the mood to talk about Being Sick instead of how I’m actually OK (it’s OK everyone! I’m OK!) I’m in the mood to entertain all the things that scare me about what’s going on.
List Style
Relapse: cancer forever. My body makes bad cells.
Chemo Brain: who am I if I am not quick witted? Don’t answer: fragile ego
Being Ugly: is wearing on me, I am getting fatter. I have zits on my chin. My soft hair has 5 hours left in existence.
Embracing the selfish: I already find myself a trial. I spend so much of my time considering how to be a good friend and I think that’s why I’m lucky to have such good friends. I think I’m about to be a Bad Friend. Blah, blah.

Secret-style (for those who are new to my blog I think the Secret is bullshit, but I like to do gratitudes anyway), I'd be remiss not let you know that I'm still grateful and all that, I just am wondering if that's what's standing between me and what feels like a looming and necessary mental breakdown sometime this weekend. I mean, I just HAVEN'T SLEPT IN LIKE WEEKS and it's MAKING ME CRAZY.