Marry me, Ryan Adams

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.

Leukemia is my bitch

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…

Balder than ever?

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!

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

My sister

If I lose more weight our faces will look almost exactly alike. But for now, enjoy this photo and know that it was ME who bought her this hat for Christmas years ago.

Tax Day

My mom still does my taxes. I know. I get a huge refund because I only made 12K this year, but I paid taxes in my actual income tax bracket which is significantly higher than 12K/year. That's pretty sweet. With GWB's little kicker I'm staring down some serious cash. What to do with it? Of course I want to go out and SPEND it on clothes, but that's what They want me to do. And I don't want to do what They want me to do.

I went back to Dr. K after my "week off" and guess what? I get another 10 days off! My platelets are still too low to work with, but they are coming up. I only need like 20, 000 more or something. I also was relieved to hear I'm still slightly anemic. While I've been pushing myself really hard to put on some of the muscle I've lost, it's hard to notice that anything has happened in the last week except that I've gained 5 lbs of... what? Fat, I'm pretty sure. Whatever. If I'm anemic, there's a chance that part of why it's so frickin' hard to walk up the stairs is because I don't have enough oxygen in my blood.

I meet with the radiologist on Monday and plan on starting radiation on the 28th. I start chemo again (spinal taps and oral drugs) late next week. I have to 6MP again which makes me nervous, but I'm taking 90% less, so it shouldn't shut things down this time around. Are you tired of hearing me talk about cancer? I just have one more thing to share. There's a doctor/physical therapist who is part of the oncology group that does PT/work out regimens for cancer patients and I am going to go see him next week. Hopefully he'll help me get my active-on.

Well, the only other thing of note is that Oasis was on the radio this morning and I decided to re-devote myself to What's the Story, Morning Glory?

Oh, and if you're getting married in September and you want me to come, tell me now because I have 3 freakin weddings to go to already!

Everything: Alright

Well, I don't know what everyone was talking about with this whole Depression and More Drugs thing because since being home I feel about 80 million times better. On Friday night I had dinner with my roommates and stayed up until 10 pm being social. Yesterday I ran around cleaning, doing errands, doing some work stuff (the kind where I see my favorite high school students and get lots of hugs and it doesn't feel like work) and my dad's been in town...

Today my dad hung all my paintings and pictures in my room. Moving rooms was really beyond me which is why it's so great the the Pereirras and Q Crew did all my moving, my mom painted my room... and today my dad finished the project by helping me decide how to hang all my framed pictures. And then he and 6'3"-ness did all the hammering and hanging.

I've had visitors pretty much every weekend since getting sick and of course this weekend was no different with dad and DP. Next weekend I have no visitors. It's going to be... great. I'm going to the Avett Brothers concert and getting a wig and maybe... spending time by myself? Mmm, I don't know, but here are some highlights from today:
*Julian cleaned our bathroom AND swept the upstairs hall/back stairs!
*I finished the first Golden Compass book (thanks Lizzy for knowing how to cure my boredom)
*My dad is a great dad and his partner is a great step-parent-figure!
*I am about to go to a fun potluck to see lots of fun people!
*I get to go to work tomorrow!

Love doesn't have to be a lie

I'm feeling a little Tragic tonight. I know it's my body crashing off its daily fix of Pred/crack. I think it did a lot to obscure some of my Chemo side effects so today was a little rough. Physically it was a low-point since my second day in the hospital.

Here are some weird side effects:
My fingers keep going numb
My mouth tastes like I burned all of my taste buds
I have the most insane gas
I am SO TIRED

I think the burly lentils I made yesterday morning might have a little to do with the intestinal distress...

I have visitors! Nathan and Leslie are visiting from Manhattan and Eugene respectively. It is so nice to see them and you would think I get tired of talking about me and my Cancer, but nope! So far it really helps to process where I am with people I care about and trust--so that is good! We ate! I still think about food pretty much ALL the time so let me tell you about the amazing food I had today!
--Veggie Pho! from Pho Hei Yen
--Grilled Cheese Sandwich from Geraldine's
Due to whatever whatever, pho and cheese sandwiches both make me feel a lot better when my stomach is killing me. Weird, huh? Even weirder: my landlord was at BOTH places at BOTH lunch and dinner. Since I have cancer I can be rude and ignore people though!

Yesterday I got my head shaved for reals by a barber on Beacon Hill. I'd like to give a special shout out to Abraham and Kicks and Cuts for the complimentary buzz. Not only did he not charge me, he made me feel really good and normal about being a chubby white girl in a barber shop on Beacon Hill to get my head shaved because I have cancer. The whole scene was kind of bizarre which is what I suppose I was going for... but anyway, it was OK. As for the look--not so hot. I HATE being bald. Now I know. Tomorrow I am going to look for a wig. While I was sitting there a woman randomly popped her head in to ask about something and looked at me and was like "I'm a 2-time breast cancer survivor! You're beautiful! You can do it!" Life has been kind to me like that a lot lately.

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.

Warning: Marathon of Cancer and non Cancer Thoughts

Friday afternoon EDWARD accepted our invitation to live in the Mansion! Hooray! We have a roommate! He seems great! The search is over!

On Friday night my mom came back in to town and thank God. When Rachel moved into the Mother-in-Law she left her room its hideous shade of beige, but first randomly painted some streaks of olive and sage green on various walls. Thanks, Rachel. I was pretty depressed about this, but I wanted the walk-in closet so much that it seemed worth it to move into the badly painted room and just deal with it… later. But my mom is almost as manic as I am (even without the Prednisone) and on Friday night she made a trip to Lowe’s for primer and paint. In less than 16 hours she primed my room and painted both the ceiling and the walls. It looks so beautiful. Besides being a brilliant theologian she also happens to possess a gift for painting.
Please note all the things about my room that White People Like: Ikea Bookcase, Expensive Sheets from Garnet Hill, and One Nice Piece of Vintage (nightstand in corner was Christmas gift from dad…)

Saturday afternoon the Pereirras were in town so they swung by. Birch and Cliff moved all of my furniture down the hall and Chere and my mom made my bed for me. I just sat there letting myself be helped. Besides primroses and muscle Cliff and Chere brought me a nice lavender heating pillow and these great White Blood Cell Tiles for My Team. When you touch them, you’re supposed to think good things for my white blood cells. I love stuff like this. I also love Cliff and Chere. They stopped in PDX on the way up and handed them out to some of my PDX peeps, so I know the love is well spread down the I-5 corridor. If you want a tile, shoot me and email! Let’s not forget that Q-Crew was around for the whole moving fiasco and helped by being awesome friends. I made pizza for dinner and they stayed and we got to have lots of good conversation that didn’t revolve around me having cancer or anything Old like that. If I don’t say it every day to someone, I’ll say it here: Q-Crew is my rock.

Today I was feeling pretty cracked out on the Pred (2 more days, 2 more days…) and so I started making a list of errands that I should do while I still only feel the need to sleep for about 3 hours a day. One of my errands was a trip to Target to return the Trainer I bought (Julian has one). Of course you can only find Target in the most disgusting outlying areas of Seattle and of course it involves driving more than 10 minutes from my house, but my mom and I ventured to Renton. It was horrible. Target was horrible. The suburbs are horrible. Right now I can only be thinking of reasons I want to live and so therefore I try to avoid anything that makes me want to commit suicide like complexes of Target/Lowes/Frys/PetCo/Etc. The return was simple enough but after about 2 seconds of attempting to shop for other necessities I felt myself panicking and my mom and I booked it back to NoBea for some Pho. Pho is the answer to everything bad.

This afternoon the Need to Do returned and in the shower I decided, what the fuck? I’m going to shave all of my body hair. It’s falling out anyway! In chunks! Gross! I have never, ever shaved my pubic hair. Oh my god. I don’t think I’ve seen such a sight since I was… 13? I’m not into it. I look pre-pubescent. So let’s re-cap the beating my sexuality has taken in the last 3 weeks:
Shiny, naturally highlighted (if not difficult), woman head-hair: gone
Fantastic, constantly highlighted cleavage: suffering from an ugly white tube protruding
Pubic Region: regressed 12 years.

I don’t think I knew I was attached to any sense of my femininity or that I walked around knowing that at any moment some man might see me and think Ah HA! I want to hit that! But now I feel fairly certain that is NOT happening. And it sucks. I’m not saying that the shaved head isn’t cute or that I deserve it when people gawk at my Hickman at QFC, but… fuck.