Boring post

I haven't been inspired to update lately. I think it's that it's been REALLY cold for April and everyone is really depressed about that. There has been pervasive grumpiness amongst all friend groups. Saturday the 11th it was 75 degrees. Yesterday it was 40 and we had rain/snow/hail all day. Oh, and it was Earth Day so I was outside moving mulch.

The good news is that I'm starting to feel stronger. I've been trying hard to walk places, to go up and down the stairs as much as possible, etc. Yesterday I spend all day walking around and doing mild manual labor. I am SORE today, but happy.

Q-Rachel wants to go shopping today. The apocalypse must be right around the corner.

Google reader

Google Reader seems to think that my interests are: Pittsburgh, biking, raw food, and mommy blogs. I'm not really sure how you would deduce this from my current feeds. I'm out: I use a feed. And I know a lot of you lurkers do too!

For Kathryn

My digital camera is out of batteries, but luckily I remembered that I have the super high quality "Photobooth" on my new Mac.

Mr. Clean:
Wigged:

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!

Today is Liz's birthday

So I've been off all chemo drugs for several weeks now while my body recovers from the March hiccup and let me tell you, it's been great. You know what sucks? Chemotherapy! Lame! I am kind of bummed that starting next week we strike back on our year and 10 months of regular toxic drugs. Boo.

But. This little break has given me a chance to return with gusto to "normal" life. For instance, I put in a real 40 hour week at work! And I have a work-plan. And my boss was really nice when I sort of manically showed up and demanded to be put in charge of all of my programs and swore I would never be sick again... I work with nice people who are patient through my sick-times and my obnoxious-times. Here is something I realized about work: I am the second most senior member on my team of programs due to extreme turnover! Shit! I should use that as leverage somehow...

So back to how I lead a normal life. On Friday night, I went to see the Avett Brothers at Neumos with my roommates. I saw them in September at Bumbershoot and loved them so much I bought two CDs. Since then, they've been on constant rotation on the kitchen stereo and at work between me and JK's offices. Seeing them in a venue like Neumos as opposed to a Bumbershoot lawn was so incredible. They are great. They are amazing. I love them. I would marry any of them. Right now. Or make out with any of them. Right now. Maybe it's the lack of drugs suppressing all of my hormones or maybe it's the raw sexiness of the Avett Bros but I am more interested in boys then I have been in about 2 months.

Fittingly, I went to a PARTY last night with Julian and Lena and even though I was the designated driver and even though I sat at the breakfast nook for the entire length of the party entertaining various guests, it was really fun to be out. "But Jessie, don't you feel like a freak among your peers what with your missing hair and Hickman?" Yes, yes I do. I rocked the Avett Brothers bald (concerts=hot, bald=better airflow) which was kind of made me self conscious, but yesterday I got my WIG and so I attended this party of my peers NOT BALD. All I'm saying is that I exchanged phone numbers with someone. Alright, it was like that, but still. I didn't look cancer-y.

Today I'm thinking maybe I'll go back to bed with some new books. I finished the 2nd Golden Compass book but our local bookstore didn't have the 3rd. I have a gift cert to Borders, but yuck.

Good news

I just got an email from the UW. They say in all of their materials that they don't grant deferrals and so on Monday I sent them a letter thanking them for the offer of admission but explaining that it wasn't feasible for me to return to school as early as fall. I said that I was planning on re applying for fall 09. Today they let me know they were granting me a deferral of ADMISSION and I should let them know next fall if I'm interested and I'm in! This is exciting because Public Admin programs were recently re-ranked and UW jumped from like 30 to 15. When I saw that, my admission didn't feel as guaranteed in next year's applicant pool as I originally thought. But it is! I think the most amazing part of this is that someone actually read my letter and then made a decision based on my specific situation. It makes me feel about 10X more interested in UW, but I'll still apply to other programs for fall 09 anyway. Apparently, I'm hot shit!

Take a week off (not from blogging!)

I went to see Dr. K yesterday afternoon and the good news is my WBCs look phenomenal. I attribute this to my awesome immune system AND the 15 “G shots” I got in my stomach while in the hospital. Did I tell you about the “G shot?” It’s pretty much the ONLY amusing anecdote from my time the H. The shot that they give you to boost WBC production is called the “G shot” and EVERYONE says it with a straight face. And I entertained myself by making lots of little jokes in my head.

ANYWAY. I am down on platelets so Dr. K was like, “I can’t do anything with you until you have more platelets, take the week off[!]” He also told me I was looking very healthy which is what everyone is saying. Maybe by healthy they mean SKINNY since I have lost 8 lbs in the last month. And by skinny I just mean that my ASS is GONE. If you know me in real life then you know that I have a really big butt. It’s something I like about myself and of course, when I buy pants I always buy to accommodate. My butt is GONE. I don’t know where it went. I am devastated. And my pants don’t fit. I’ve been this weight/size many times before and so I have clothes that SHOULD fit, but since before weight loss occurred due to like, running and eating healthy and not lying in bed anorexic* for 3 weeks, my butt stayed its healthy size. Is this interesting? The point is that all my pants are baggy and stupid looking and I’m trying to eat and walk up lots of stairs to get my glutes back.

*Anorexia is the clinical term for not being hungry or interested in food. That was me in the H due to all the shitty antibiotics I was on and the fact that I was depressed.

Welllllllllll. Tomorrow is the first meeting of the Leukemia and Lymphoma Society young adult group and I am tentatively excited about meeting other sick people. Last night I had a mini break down where I was just feeling alone and like no one could understand me. My friends are so amazing and most of the time all I want is to be normal and hang out with normal, healthy people, but then I have moments (like 18 days in the hospital) where I realize I’m NOT normal and healthy right now and that I can’t keep up with my old life. Blah, blah, blah, I just can’t wait to be better.

Oh, and yesterday was Lauren's birthday! Happy Birthday Lauren!

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!

Back

And just like that it was over. I left the hospital yesterday morning and have been trying to acclimate back to real life.

These last 18 days took a lot out of me physically and emotionally. I’m not sure I realized at the time quite how sick I was and how hard it was on my body to run high temperatures for days at a time. Physically, I feel so weak and tired. I lost an amazing amount of muscle mass in my legs. My pants are hanging off me, but it doesn’t look good AND I can’t walk up a flight of stairs without getting really tired. This is the stupidest way to lose weight ever, by the way.

As for my emotional state, I feel wasted. The hospital really brought me down in ways I can’t explain. It was torture. My spirit feels weak which is so much harder to deal with than weak legs. I feel differently about this state of infirmary now. I am a Real Sick Person.

I don’t expect to be Sick for much longer. Being out of the hosp and back at work should bring my endorphins back. If not, my mom, the social worker, and Dr. K have all been making noises about anti depressants and how chemically, this experience really whacked out my brain and I might need some help normalizing… As for my legs, we all know my massive hams love nothing more than to gain muscle mass at alarming speed… it will just be hard work. I hate having to go back to zero.

Today I am celebrating that I am work and I have been here since 9am. It feels so good to have things to do and structure to my day.

I'm sorry that I've been so absent from this blog but today is the 2 and 1/2 week mark for me in the hospital.

The hospital is terrible. I really really really hate it here. It has done a fine job of breaking my indomitable spirit and causing what people keep telling me is, "depression." Apparently, I've never been really depressed before. Thanks, Hosp.

The good news: my counts are finally up. I want to leave today. Or I would settle for tomorrow. They're pulling me off all my anti biotics to see how my systems fares on its own.

How did we get here? No doubt the most disturbing part of this month has been the radical turn around from Superwoman to nosediving hard and landing in the H. Why was this treatment cycle so much worse? Why am I such a pansy? Turns out I'm one of .03% of people who is missing an enzyme in my blood that helps metabolize this drug I was taking: 6-MP. Without said enzyme it was like I was taking 10X the chemo dose that I needed. So that's what crushed my counts and for so long. Shout out to Dr. K for figuring that out before I start another 70-day cycle of 6-MP.

That's all for now because most of my thoughts are pretty whiney and I've been trapped in a white box for 2 and 1/2 weeks with little stimulus.

All I need

I just need some white blood cells. I can't leave until I have them. I am getting really miserable and desperate trapped here. Please, please, please think good things for my WBCs. I know you probably already are, but just in case... my sanity is on the line.

I'm alive

I realize it's been about a week which is terribly uncharacteristic of me.

I'm still in the hospital. It's been a rough go. I won't go into details now, but the bottom line is, please think very good thoughts for my white blood cells.

The good is that I am better than I was. Or something. I'm aiming to get out of here Wednesday?

Set backs

Well, well, well. What a humbling week!

Yesterday afternoon I checked BACK into the H because Friday night's test results suggest I have a staph infection in my blood. Yarg. This is AFTER I tried to convince everyone at work that I was doing a great job taking care of myself and that I was on the mend... ready to hit it! Yarg. Again.

So the deal-io is that I'll stay here until my blood cultures re-grow so we know what we're dealing with. There is a small chance nothing is in my blood and that the blood from Friday was contaminated... that's my hope. Anyhoo, in the mean time they gave me a serious dose of anti-biotics which I reacted to not well. My head got all hot and red and itchy and then later on I threw up a whole lot. Let me tell you, a great St. Patrick's Day. I sincerely hope yours was better. So between the Adivan and the Benadryl IV and the fact that I'm still pretty freakin dehydrated and anemic (more anemic today--Hematocrit is at 18!) I am finally slowing down and sleeping. And I get 4 more units of blood.

The good news of yesterday is that the UW called to congratulate me on my acceptance to the class of 2008!

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.

Well, that explains it

Today I couldn't get out of bed. If I stood up or sat for more than 10 minutes I would get all dizzy and feel like I was going to faint. I was also sweating a lot. It was kind of scary. I nutted up and called the doctor on Friday evening even though it felt like a huge imposition.

I'm anemic and dehydrated and I have a bladder infection. This explains why I feel like shit. Tonight they gave me fluids and antibiotics and tomorrow I get some new blood. I am really excited about the new blood. This new blood will carry oxygen like my current blood can't! Everyone keeps telling me how much better I will feel! Yay! Tomorrow!

Intensification

It's intense. I feel terrible. I finally feel like my body is dying. I know that sounds melodramatic and that most people have worse side effects and feel more bad than me (yeah, more bad) and all of that... but I imagine most of you are reading this because you want to know how either a) I'm doing, or b) what it's like having Chemotherapy.

The answer to both of those is: Crappy.

I feel bad. All over. My stomach hurts. All the time. My back hurts. All the time. And it's not like dramatic puking, dying... it's like it hurts. There is a general feeling of badness. I have drugs for Nausea (nope), Anxiety (not really), Pain, and Sleep. All of them make my stomach hurt more. Tonight the hot bath did nothing which I found particularly depressing.

Here's something that made me mad today. AC gave me a Cancer Cookbook (that was nice, I appreciated that) with all this advice about what foods to eat to avoid cancer and what to eat while you're undergoing Chemo and FUCK I already eat all of the fucking cancer fighting foods. All the time. And I did before. And I still got leukemia. Even though I eat tons of AntiOxidants. And for the last time (this is directed at the cookbook and all cancer websites) I AM NOT NAUSEATED I DO NOT NEED ADVICE ABOUT HOW TO FIGHT NAUSEA I NEED TO KNOW HOW TO MAKE MY STOMACH STOP HURTING ALL THE TIME CAN'T SOMEONE TELL ME THAT?

I think what makes this so disappointing is how high I was riding at the end of Induction. My oncologist was pretty clear that both Induction and Intensification were the hard part--and that this whole 8 weeks was going to suck, but I just assumed that because the first half was over, I was Superwoman. Lately I do not feel like Superwoman. Or Iron Woman. Or Wolverine. I feel like whiny, sick, Jessie. All week I've been having these really intense moments where everything gets So Bad that I think the world is ending. What it means is that I need a nap--ASAP. Today I made the mistake of having a phone meeting with a Partner Org that I knew would kill me inside. Sure enough, 55 minutes into the conversation I wanted to curl up into a little ball on my office floor. I had to cancel my coffee with my New Cancer Friend and go home and sleep for 3 hours. I haven't managed to bounce back since--even though my Chemo nurse was waiting for me today and got me in and out of the Treatment Center in 20 minutes. (That's my gratitude of the day).

Tomorrow I have to go back to work because I have things to do. I am in the middle of free-writing about why it is that I'm working. It's good for me to think about this all a little harder.

Obsessed

I know I sound absolutely obsessed with food and particularly with pho, but I am going to exude its amazing regenerative powers once again. Today my chemo (2 shots which take approx 30 seconds to administer) was 45 minutes late because they forgot I was sitting in the waiting room. Now, I only like to say nice things about the nice people who help me with my cancer, but some days this is very challenging. Instead of crying and throwing myself against the plate glass windows, I opted for some Veggie Pho from my new fave: Pho Hai Yen. I feel better already. When Bryon originally made a joke about eating my food when I got home, I said, "if you do that I will punch you in the face" and I meant it. But after eating it, I mean it in a jokey-way. Haha.

One of my shots (Cytarabine) is in my stomach, it doesn't hurt, and it does suppress my appetite. The other shot was in my arm it DID hurt and makes me produce more red blood cells which is supposed to make my bones ache and give me more energy. So much to look forward to in the coming days.

What this all means is that my counts have gone back down (as they're supposed to since I had a lot more toxic drugs this week.) That last 4 week cycle of Chemo was the first of two knarley cycles. They have names. I finished "Induction" Chemo on Thursday. On Monday in the H I started "Intensification." Fun names, huh?

Well, I'm going to eat more pho and probably watch Kris Carr's Crazy Sexy Cancer again because it makes me cry and I need to do some crying.

Sleep-good, pee cup engineering-bad

Don't these guys have GREAT HAIR? Maybe I should get my wig styled like them?

I'm in the H again, just had my first spinal tap, and am now being dripped toxic, reproductive system murdering drugs.

Today I took a 3 hour nap before coming in and it really changes how I feel about life--in a good way. I need to remember that. I need to remember that when I feel like death and depression and pain that sleeping is pretty much always the cure. I also need a little cot for my office so I can start taking little naps AT work.

I just started my Adivan drip so I'm not long for this world, but I wanted to say hi!

Also to tell you the latest amusing H story. After my tap they made me lie flat on my back for 4 hours to help my body recalibrate sans 8ccs of spinal fluid. I had pho for dinner. You do the math. That means peeing lying down which is something I haven't done since that one night that I peed on Sarah when I was 20 when we were passed out. Sorry, Sarah. I feel like I've now publicly acknowledged I was the pee-er. That's a story for another time... Anyhoo, the whole experience was bound to end in disaster the minute I saw the woefully inadequate little cup they had in mind. So my pants and panties are around my angles, my new shave job exposed... and nothing. Shy bladder. For 10 minutes. It wanted it to come so bad. And finally victory... all over the bed and me and my nice nurse. But, much like childbirth apparently removes any sense of modesty so too has cancer. People touch me and look at me and put me in funny clothes and today I peed the bed and someone else had to clean it up and I can't say I was even that embarrassed. It was just bad engineering.

Project: Wig

First you get MEASURED (22--"very normal")
Pick a cap style ("yes, very normal ears... this should be fine...")
Then you pick a color (L-2 Brown)

***SPECULATION: Then somewhere in the process a disadvantaged woman in a 3rd world exploitative situation is forced to sheer her gorgeous locks in order to support her 6 children***

Then the wig comes all basic-like and my Wig Maker styles and cuts it around my face. I think the whole thing should look and feel pretty good. More than anything I was appreciative of how kind and normal the folks at Apollo Hair Systems in Northgate were. While I was there I picked something up off the shelf to wear in the meantime. It's not a look I've ever rocked... but... HAIR! I'd post pictures but my Pred-face hasn't gone down yet (and Someone I Work With mentioned it--bursting the lie-bubble everyone has been keeping me in)... and I can't imagine why I still cling to any form of vanity at this point seeing as how many people have seen me in so many compromising ways lately... but, it's about getting there.

But, I don't want you to be dissapointed so I'm humiliating someone else! Here are security guards at Northgate riding Segway PTs.

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.

PetCT

No other tumors! Still a little action where LB was, but looking good.

Also, tonight I got to see my kids and hug them. Thank you, Immune System.

Iron Woman

Just got my CBC back and everything looks NORMAL. Yes, that is right. I have an immune system! Not the kind I came in with... but one that will fight infections! I hit the Hosp with a 12.3 WBC, my low was 0.2 and I'm back at a very reasonable 6.3. All my other CBC numbers are comparable to a healthy 25 year old. Holler!

Dr. K says he can't remember the last time he saw someone tolerate chemo this well or have numbers bounce back so quickly. I'm in the top 1%!!!

Monday I have to go back to the H for some spinal and some nasty-style chemo, but it's only for about 12 hours.

Currently I'm sitting in out-patient waiting for my Asparinginase to drip and afterwards Q-Crew is hitting Hidmo for Entrian.

ps. there is no spell check on this browser! Yowser!

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.

My ovaries: Bad Ass

Today I got my period. No one ever said it was over for good, or anything like that, I just... assumed. But Chemo obviously pales in comparison of the Awesomeness of the Moon and my own Yonic-ness. ROOOOOARRRRRRRR, Omega!!!!!!!!

I'm hoping this explains a lot of the back pain I've been experiencing? Just in case we have not one but TWO fun tests coming up. Monday is my PetCT, and Tuesday morning I'm getting a back MRI just to make sure these ARE angry rugby injuries and are NOT little tumors. Interesting note: Lukemia Cutis likes scar tissue. Let's not think about that.

Oh, and I made a personal choice to re-join Facebook so I could play Scrabulous. I'm unsure of whether this was wise.

Day 16

Today my chemo was 2 hours late and I almost lost it. I almost became a difficult patient. I was thisclose.

But! My white blood cells are on their way back up! Dr. K gave me a high 5 and said I was out of the woods for now. The bigger issue at hand is my GI tract and how it feels like SHIT. I won't go into details, but even though I'm hungry all the time, I'm beginning to feel like eating is a raw deal. Raw. Really raw.

Also, we're in deep looking for fucking housemates. I hate it. I hate looking for housemates. People keep blowing us off and it's so fucking stressful. "Becky" and "Edward" are coming tonight. Hopefully one of them is NOT creepy and can move in NOW. AHDFHSAFSHA!

It came to me in a dream

I think I look kind of like Billy Zane, but with boobs. Also. I got up at 5 this morning and made my Collard Greens and Red Lentil Souffle. It's still in the oven, but I think it's going to be bomb. It has both dairy and eggs: that's how I know it's going to taste good. Also, while taking my morning crack, I noticed there are only 6 days of pills left! I will miss you twilight cooking experiments!

Relax, already

Today my home heath care nurse swung by to check on me and my Hickman line. The Hick looks good--I've been practicing a sexy, come-hither twirl with it that is starting to turn me on. Watch out.

She also mentioned that I should a) sleep more, b) be less stressed out, and c) not have such bad heartburn/acid reflux. I've been a little weary to ask my doctor for prescription meds or complain too much about the side effects of the Pred/Chemo drugs. They aren't pleasant for sure, but I felt like MORE medicating was the wrong way to go. As we hit the 2 week mark (seriously, it's only been 2 weeks?) the little things are really starting to get to me. While I wouldn't describe my pain over a 4 at any point (hello, rugby!) its consistency is starting to wear on me. Anyway, the nurse confirmed that I can ask for Xanax and Protonix without looking like a med seeking, pansy.

Tonight I have a massage which will hopefully solve the issue of my back hurting 24/7. The one thing that seems to help is Vicodin, but the resulting "yucky" feeling really kills my buzz.

Also, my friend Kerry had signed up for a Leukemia and Lymphoma Society Tri-athalon before Little Buddy was ever even diagnosed as a tumor. If you want to visit her page, give her money, and support a REALLY GOOD CAUSE--do it! Everyone keeps asking me what they can do.

Here is a list:
*If you live in Seattle, come help me move down the hall this weekend into Rachel's old room.
*If you don't live in Seattle, go donate blood.
*If you give away money, give some to Kerry/the Leukemia and Lymphoma Society

So that's it for today. In my head I am creating a Lentil-Greens souffle to make tonight for dinner. Mmmmmmm.

Resume normal lifestyle

I went to work this morning which was a good change of pace. Now all I need to figure out is how to like, focus on work once I get there.

I feel "yucky." Not infection-fever-yucky, but stomach yucky. I don't think I should take Vicodin anymore--at least while I'm on the Prednisone. Here's the thing with my belly, it just always feels bad. I am going to get tired of this soon.

I need to block myself from googling anything about Aleukemic Leukemia Cutis: that's the technical name for what I have and there's not a lot out there but weird case studies--too many of them where people randomly die. The ALC is particularly rare with my kind of leukemia so there's nothing specific to what I've got going on and delving too much further can only result in scary shit.

There's not really time to go into this right now, but I've also decided to lay off the Cancer support forums because they scare me as well. Cancer is a pretty broad spectrum of disease, treatment, and infirmary and I'm just not ready to entertain the worse case scenarios being lived by too many people out there. All I can do for now is focus on how I'm currently doing (which is pretty well) and not think about 6 or 12 months out when The Moment of Truth or whatnot comes and they tell me if my cells are staying in check. This is whole process is bearable when I only think about how I'm doing symptomatically (my back hurts, my tummy hurts, I'm tired, grouch, grouch) and not when I think about what's happening more generally with my DNA and my mortality. See, scary?

OK, I'm going to Chemo. Tomorrow I'm getting a massage for my back.

Oregon takes another

Jenny and Richard just left for Eugene. It's seems difficult and cheesy to write a blog tribute to two of my favorite roommates ever.... but I like, LOVE them. Jenny and Richard. I was non plussed when I met them. I think I thought "sure," but I wasn't sure. Then I found out that Jenny liked America's Next Top Model and Richard (when you stopped calling him "Rich") would open up and tell you stories about designing softcore porn websites. That's when things started getting good.

I'm not going to lie. I'm extremely depressed that I don't have two awesomely entertaining, cooking-crazy, wine-pounding, shit-talking, story-telling friends to come home to at night at anymore. But I also know I must really like Jenny and Richard because I never didn't want them to move. This was too great an opportunity for both of them. When I think of them and how individually talented and amazing they are and the kinds of outlets that can support them in being that great, this move is so perfect. I've never been a proponent of school pride, but I am PSYCHED for Richard to be a Duck. Not because our football team rules (?) but because when I think back fondly to my friends in the AAA school and the College of Science and Letters and I know Richard will love it and be as independently inspired as I was. And that makes me happy. Jenny just got the most bad ass job a 27 year old has ever gotten and won't blog about it for her work privacy, but Jesus. It's so cool. Suck it, T i m C h u e y.

In other news we had a going away party last night for J and R. The food ruled per usual and the only dampening was that I have the most raging acid reflux of my life. I think I ate about 1/2 bottle of tums. I give up. I'm getting the real shit today. Also, I made two moussakas--one "v" and one "V." Mostly I used this badass vege recipe and then found a vegan bechemel that looked decent on another site. I also cleaned the house several times and interviewed a potential roommate--he seemed non-plussed, but obviously he hasn't seen the whack pool of housing in Seattle so he better call us tomorrow begging to be taken. This Pred is killing me. I am physically exhausted but I just can't sit still.

Health update: I have no white blood cells left! The Chemo has done it's job and I'm wandering around with no immune system (it's supposed to go down like this). So think about me in a Green Bubble of Health interacting with no bacteria. Should I catch something, I have to go back to the big H and that's what I'm trying to avoid til my March check in. Anyway, I'm keeping up my end of the deal and sanitizing my hands every 10 minutes. I am also am learning to deal some new physical limitations (like moving a desk up a flight of stairs leaves me heaving and dizzy... I miss you red blood cells and oxygen!) and trying to figure out how to seem like less of Pred-head (kind of like Crack Head). I just checked my schedule and I can come down off the pred in 2 weeks!!! Eiiighhhhhhhhhheeeeeeeeeee.

When you have a moment...

Because this is my blog and I have cancer, I want to take a moment to be entirely sincere and not at all ironic. About 6 weeks ago I wrote a personal statement for admission to the UW Graduate School for a Master’s Degree in Public Administration. In my statement I had to speak to life’s challenges and I found myself admitting to living a charmed life full of love, support, and easy accomplishments. For whatever reasons, I landed in a loving, intelligent, and funny family who raised me in the Safest Small City in the US. Genes conspired to endow a skill set on me valued by the hegemony and we live in progressive enough times that life as a middle class white woman is without many major obstacles.

I was diagnosed with Leukemia almost 3 weeks ago. I just finished what hopefully will be the most physically brutal part of my Chemotherapy regimen and this feeling of fortune has not changed.

In the last few weeks I have felt a tremendous outpouring of love and support from the various communities who have touched my life at different points. I can’t begin express the deep feeling of gratitude I feel towards the universe for bringing me such a charmed existence. Yes, it sucks that I have cancer. Yes, there is more shit to come. But my blessings (if you will) far outnumber this one shitty thing that has happened to me.

I haven’t said much about the practicalities of how challenging cancer can be for some folks. You should know I have managed to skirt the worst of it. I work with wonderful, supportive people who have given the freedom to be sick and to heal on my own schedule. I don’t worry about employment. I have health insurance! Despite the 2 months of Misdiagnosis by my first dermatologist, connections brought me to someone competent who expedited my care and referred me to one of the best oncologists in the Northwest. Since undergoing treatment, every healthcare provider I have had has treated me with tremendous respect and kindness. I cannot say enough wonderful things about the nursing staff on the oncology unit of Swedish Medical Center. What an amazing, empowered group of women committed to my health and that of others. Even more conveniently, Swedish is a 5 minute drive from my house and place of employment. You know how I feel about commuting in Seattle—this is a huge deal.

Tonight I’m cleaning my room and finally getting a chance catch up on the 40+ cards from church members at the First Congregational Church that I grew up in in Corvallis. I love this community and have ardently defended the value of organized religion in that it can and has done remarkably positive things for so many people. This is a perfect example of a faith community not just being PC about social justice but expressing real love, faith, and support for each other out of religious belief.

And then there are those most close to me. My friends, my family. Your calls and emails never cease to amaze me. How did so many 20-somethings learn to be so freaking intelligent, compassionate, and sensitive? I expect wisdom (and have received it!) from my many adopted aunts and uncles—you’ve always been my rocks and the people who have convinced me that I have value to those beyond my biological parents. You are in reason I have such an indomitable ego! I’ve been watching a LOT of TV lately so it seems particularly profound and lucky that I know so many intelligent, thoughtful human beings.

Here is my conclusion (should you choose to skip over the cheese). I can actually feel the fact that so many people are thinking of me. I don’t know what it is, but it matters. I have always had a strong sense of myself and optimism but this disease has challenged that in new ways. Feeling you reflect my strength back at me magnifies it. Thank you for believing in me—it is so powerful. I feel it tangibly

Gone baby, gone

I shaved my head. My hair is supposed to fall out sometime this week and I really wanted to whole experience to empowering and fun. Last night I felt good and my roommate family was home and it just seemed like the right time. Everyone else drank Gin and Tonics, we listened to the Cranberries, and watched some YouTube videos of Demi Moore shaving her head. Then it was time.

For the whole shebang, check out the Picasa album.

In other news: being home is really great. I feel so much better emotionally even if I can paranoidedly feel my body breaking down. I'm on hella amounts of Prednisone (120 mg/day) which makes me feel hungover a lot of the time. However, I only have another 2 weeks on the Pred (for now) so I'm hoping to avoid the whole "getting fat" problem that happens to many Pred users. It has given me my appetite back...

I'm going home today!

As soon as they pump me up with that miracle poison "Vancristine," I'm going home!

I don't have to see a doctor until Friday!

Here is a present for visiting me today, random internet visitors!

And here is another:



A Friend's Cancer: Good For Your Health?

It's not all about me

Oh, why the fuck not? I'll post again.

Today is Rachel's birthday. Yesterday was Jade's birthday. I like to write about my friends on their birthdays. I have the most excellent friends.

Both Rachel and Jade have seen me through some of life's more epic coming of age moments. Rachel was there with me in Honduras in 2001 when I realized that the world was truly fucked and that there were some problems that were bigger than I could grasp. Rachel was part of my life pretty much every day from ages 9-18. We moved to Corvallis at the same time, went to all the same schools, had all the same classes, and of course, she was my youth group bff. Our parents also got divorced at the same time. Now she's in Santa Barbara and she sends me the greatest free shit from her company and keeps me posted on HS drama. Happy 25th Birthday Rachel!

Jade has been my bff for the last 7 years and has seen me through some of the most awful and entertaining moments of my life. When I called Jade to tell her I was sick I didn't know if I'd be able to without totally losing it. But because Jade is truly (and I mean this) one of the funniest people I know and because I can laugh with her about really, really anything, I found myself 10 minutes into the conversation talking about how this was going to be a great way to lose weight and find a boyfriend (didn't you know, guys totally dig vulnerable girls!) I look forward to being very old and living in a house with Jade and co. again. I imagine we will all live way past our partners and instead of moving into a retirement community we will buy a house somewhere warm, hire some hot help and sit around on our porch bitching at each other through our golden years. Jade will have many little dogs by then--all pugs.

Even when I'm in a bad mood, I feel lucky every single day. I have great friends.

Nooooooooo

I thought I was going home today. Wrong!

Today I have my last (I think) IV chemo drug: Asparaginase. This drug is ALL specific and will keep my mutated white blood cells (specifically) from getting some enzyme or something that they need. However, sometimes people are allergic to Asparaginase so I have to stay here ALL DAY and be under observation. Tomorrow morning I get my last dose of Vancristine and I can go home... if my counts haven't fallen.

Oh man. I'm staring down a WHOLE day in the hospital without the benefit of being heavily sedated. This is depressing.

Another day, another dollar

Today they let me out for 8 hours. They let me out because I'm healthy... and bored. However, my blood count (henceforth to be referred to as CBC) is starting to show that I'm sick. My white cells are half of what they were yesterday... but, it's still high enough to be functional. Blah, blah, blah.

I am angry that they are keeping me here at this stupid hospital during what are likely to be my last few healthy days in the coming 7 months. REALLY? You let me out all day (because I am ok) only to force me to sleep at the hospital so people can wake me up every few hours to take vital signs? REALLY? I am fucking homesick! Let me go home!

Ah, but what did I do today with my 8 hours off? Good question, that puts me in better spirits. My mom and I walked around Seward Park and the weather was AMAZING. Then I got depressed about how this weekend last year was amazing also and I spent it with my amazing students planting shrubs at Lake People Park... Oh depressing digression!

Anyway, after walking we went to the store and bought germ-a-phobe supplies. I'm sure this will come up as we wind our way along chemotherapy, but I'm definitely of the mindset of that germs are GOOD. I don't always wash my hands! I think bleach wipes will be the downfall of human society! I hate PURELL!!!! But. I am about to have no immune system and so I'm trying to learn new habits... like using paper towels, and constantly washing/sanitizing my hands... BLAH!

This is a great post, huh? Back the happier part of today. J and R made me dinner... at 4:30 in the afternoon so I could enjoy a Roommate meal at home. It was fucking phenomenal. Jenny made Portobello Wellington and mashed potatoes. I haven't wanted to eat since Wednesday. I mean, once I got over the "barfies" food just seems so... enh. I'll think about eating, but it's not worth the effort and nothing sounds good. Strange. Anyway, when Jenny sent me a text today with various dinner options I saw Mashed Potatoes and something inside me decided to live! I ate more this afternoon than I have in a week!

But here I am at the hospital. I'm sorry I haven't been very good at returning phone calls and emails. All of this is starting to hit me and I feel kind of on the verge of losing it a lot. I'm not really ready to lose it. Instead, I keep drifting off to my comfortable place which is objective philosophizing. Ah, Cancer: the evolution of human cells, the inevitable end to poisoning our environment, the Coming of Age Struggle for Jessie... Fuck.

I'm trying to go drug-free tonight and get all these pollutants out of my body.

Cell death

The Reality of chemo is starting to hit today. There is a tingling in my gums, my throat, my scalp... It doesn't feel good, but by no means is it painful--it's just the death throws of my billions of fast-splitting cells.

It's easier to feel objective about this than personal. So I guess I'm trying to focus on how this is so interesting. My kidneys are sore today. It's probably because all these dead cells have to be carried out of my body some how, but first they get processed in my kidneys.

And the most exciting news of all: Little Buddy is a quarter of his form size. He's practically gone. The stitches from my biopsy are hanging out...

They let me out on a 6-hour pass today. It was great. My mom, Sarah, and I hit up the Mac Store (as opposed to the fascist Apple Store) for a new computer. I got the black MacBook (with added ram, N3.) It's hot--especially with its red case.

I'd like to straight up admit that I am getting really spoiled by this "I have Cancer" gig, but I would also point out that all these years I've been using the SAME computer that I got for high school graduation. That's right, my little G3, 9.6GB iBook has been serving me faithfully for the last 7 1/2 years, but it no longer cuts it with all the time I plan on spending on YouTube in the coming months.

After the Mac Store, we hit up U-Village for a few other items and the whole thing left me wrecked. I think I'm starting to realize that I'm sick and that my body is dying. I mean, not enough to die, but that's what's happening here! I got to go home to the Mansion and take a nap in my own bed. It was freakin' amazing. I didn't realize how homesick I was and how much I wanted to be home until I curled up in my Most Amazing Bed. Now I'm back at the hospital and I'm feeling pretty sad about how I have to be here and it suddenly seems real that I'm going to lose my hair in the next few days and that I'm just not going to be able to do all the stuff that I'm used to. Technically it's time for my Prednisone which might get me all hopped up but I'm tired of taking chemicals. FUCK.

Gratitudes of the day: BAMF new computer, getting to sleep in my own bed, the fact that the chemo is working.

The hospital

This is my "stash." It's diet coke, Quest photo albums, a "Cunt Coloring Book," my blankie, hospital socks with grippy bottoms, and about 7 trashy books courtesy of Jenny and Richard. But it's gettin' on bed time and I've had my adivan which manages to simultaneously kill nausea in its tracks and put me the fuck out. So blankie is going to be put to serious use. Fuck yeah!

The view from my window. You can see the Space Needle, the Olympics when it's clear, and my bougie cousin's bougie penthouse 2 blocks away. Thanks for the flowers, yinz!


I have not one, but TWO balloon sets in my room. Suck it, Trebek.

How can this not warm your heart: Jason and Les. I will maintain my vote for Jason as "Sexiest Man Alive." Get it together, People Magazine.

Me and my Hickman line chillaxin. No IVs for this classy woman. And check out those luscious locks... they got about 7 days and countin.

Today has been magically not as bad as yesterday. Yesterday was Rough. But you know what? I didn't puke today. I didn't even want to! I had many wonderful visitors including my sister, AC, Jenny, Richard, and Julian, and of course the ever present Mom. The roommates brought sympathy cards from just about every cute old lady from church and it was so sweet to know that community still cares like that. Anyway. I also got a GREAT CD from Lizzy. I believe that with some positive thinking (the Secret, hello!) we can kill both terrorism AND cancer. It may seem like a large bill, but you haven't seen what I can do on Prednisone and Kanye West.

Speaking of Great Gifts, it seems like good/better form to thank people in person before blogging thank yous, but THANK YOU SARA GRIBS!!!! Not only was your card totally the best, but I love It's Always Sunny in Philadelphia and no I had not seen it! I am so psyched!

Here is the Best Part. My inductive Chemo is OVER. As of tonight, I just have some vanacristine next week. Of course, now we wait around for my immune system to die and the resulting problemos, but the nasty chemicals are over with until next month's SPINAL (ba-dum.)

Ok, the Adivan is winning. Goodnight.

Life = unfair

I spent yesterday sleeping, throwing up, and wanting to die. The closest thing I can think of to explain it is like having the Worst Hangover of my Life for hours and hours but none of the faith that it will be over after another liter of water and a nap. Luckily they started giving me this anti-nausea stuff that puts me to sleep so all i do is sleep.

Here are some things that make me feel like throwing up: walking, watching TV, using the computer, reading, talking to people...

But today (so far) IS better. They are keeping me here until at least Tuesday... If my blood counts have already dropped by then, probably longer. Dr. K says physically I will start to feel better and mentally I will start ripping my hair out.

Maybe I'll feel better enough for some insane blogs.

Chemotherapy y yo

Last night was my first night in the hospital. At 10pm they finally started my chemo which went fairly well. I was already pumped full of anti-nausea drugs because of the IV pain killer they had given me for my port was making me feel "woozey" and "very pukey."

In order, please! I checked in at noon and then there was a lot of sitting and waiting. I think this was particularly difficult for my parents who mostly chatted amongst themselves. I was being sullen, angry, and spacey, and NO I did not want to have any conversation that began with "so this is scary, huh?" Fuck that. I'm still not ready to cry in front of people.

Point for my parents: they gave me lots of space
10 points against my parents: somehow my mom and one of my friends drafted an email saying people should call my MOM if they wanted to see/talk to me and that she was like screening everyone. Fuck that. Seriously. Fuck that. I didn't SAY that. I didn't ask for that. It seems PARTICULARLY inappropriate seeing as how my friends have been mind blowingly awesome about all of this. More awesome than people who are related to me, in fact. So anyway, you can CALL me. If I can't answer, I won't. I love nice voicemails.

So anyway, lovely afternoon of waiting. Lots of needles and sad looks. They made me ride around in a GURNEY for Christ's sake--like an invalid. There are sick people here everywhere and they forced me to change into the sick person costume. Have I mentioned yet that I am NOT sick? Fuck this. Anyway around 4 they put in my Hickman Catheter/Port/Central Line/whatever. It's a buried IV that they slide in at my neck and then tunnel down to a big artery and then push it out right over my boob. Hot. I am going to take pictures later. Other high lights of the afternoon were the FOUR separate attempts to get an IV started on my arm.

Today: my Hickman is bugging me because it's a tube under my skin. I feel like throwing up because I just had tons of nasty chemicals pumped through my blood and it's a side effect of them killing billions of totally healthy cells. I probably won't throw up because the anti-nausea stuff is pretty decent at "controlling" nausea but I can't think of single thing I would want to eat. Possibly ever again.

Right now I'm reveling in some crazy freedom. The nurse left me alone to shower and she unhooked my Hickman from its damn IV fluids. I can walk around unimpaired! I have a new little buddy--my IV tower--and he comes with me when I need to go to the bathroom, or turn on the DVD player, or get a book off the table on the far side of the room.

Here is the thing: this really fucking sucks. I hate it here and I'm pissed that I have to go through this. I know that it's all going to get worse for the next month and it's hard to know what to do with any of these feelings or any of this free time. Have I mentioned I feel like throwing up? Not enough to do it of course...

Gratitude of the day: Awesome nursing staff. They rock.

The Big Day

I check in at 11. They’ll put a catheter in my chest and I’ll definitely take a picture. Then they’ll pump me up with chemicals and we sit around waiting for me to throw up or something interesting. Over the next three days my immune system goes down the shitter and then they sit around waiting for me to get sick which happens to everyone. I’m not supposed to be scared when I need blood transfusions. Blah, blah, blah. I have a piece of paper now that tells me my chemo schedule and I find it mostly heartening. This crappy induction part only lasts 4 weeks. Then 4 weeks of spinal chemo (that is what it sounds like—chemo through a spinal tap) with only a few days of being in the hospital. Then on to out patient (huzzah!) chemo…

Dr. K told me the thing that’s going to suck most is being bored and that it shouldn’t actually be that awful. So anyway, look forward to a LOT of postings…

Try me

The Weekend of Denial ended this afternoon at 2pm when I took Kelly to the train station. But you know what? I think it’s OK. I think I am ready to do this. Not that I have a choice.

My friends are amazing. I put out the call and they were here.

On Saturday morning I decided to begin this weekend of denial by attending the Washington State Democratic Caucus because really, pretending that my voice is heard in “representative government” is a huge act of denial. But it was interesting. Well, actually it was kind of boring. I don’t know. We met a bunch of our neighbors and I let myself be convinced by some seriously GenX-y yuppies that Hilary was the way to go.

Saturday evening the peeps showed up and we we consumed a lot of fibrous veggies, wine, and whiskey. The next stop was the Beacon Pub which as usual did not disappoint. It was as haggard as ever and our favorite ever-present pimp even bought us drinks. Julian and I befriended some neighbors and we don’t really remember that part of the evening but Julian got a business card. The guy’s email involves “mysterywhiteboy” so either he’s a liar or a dumbass. Either way, I love NoBea. The rest of the night is kind of a blur.

I woke up in my double bed betwixt Julian and Jason. I got the shit snuggled out of me this weekend and I mean that in a good way. While the whole thing was fun and light-hearted, my friends still managed to express mad amounts of love for me and I really dug that. Sunday morning we went out for 6-egg omelets at Beth’s Café and I met the man that I would put next in my “to be seduced” line if I weren’t about to undergo chemotherapy and lose all of my hair. Drat! The cancer buzz kill is always lurking underneath the surface! Anyhoo, the rest of the morning was spent cuddling and making milk shakes. The Q-crew showed up later on in the afternoon with amazing black bean burger makings. Damn, they’re good. My friends. And Rachel’s black bean burgers…

Bottom line: my friends are the awesome-est. They were perfect this weekend.

For those of you not at the Weekend of Denial, you were missed and I will make it a priority to get better as soon as possible so I can take you to the Beacon Pub and get you some free Pimp-drinks. Until then, your emails and voicemails and talking to you on the phone has been so totally great.

"Neither here nor there"

I am the less than 1% of Leukemia patients whose Leukemia presents NOT in the bone marrow or blood. It does confirm that this is very early on in my disease, but nothing has changed.

I realize you don't even know what it would have changed from. On Wednesday night I got the ALL diagnosis but it was too difficult to wrap my head around what treatment meant and then try to come up with a series of coherent sentances.

When you have Leukemia--when you have whacked out white blood cells--the answer is to kill ALL of your white blood cells, over and over. It doesn't matter how early on the Leukemia is or in how many places: it's all treated the same. The process is harsh and requires hospitalization. On Wednesday the 13th I'm checking into the hosptial, having a port put in my chest, and then they'll bombard my system with enough chemicals to kill me without actually having me die. Not to be melodramatic, but it breaks my heart to take my healthy body and put it through such intense punishment. I love my body and everything it does for me.

I stay in the hospital for a few days while they blast my system and then go home to recover. Once my body builds up new white blood cells, we go again. This will happen at least three times. Eventually, the chemo mellows and at the end I end up on "maintenance drugs" for the next few YEARS. You know what? I'm really angry about this. Really, really angry.

I was OK with having cancer, with losing my hair, with wrestling with my mortality. I am fucking pissed that I am about to lose a few months of my life to infirmary and that I am going to poison my body. NOT COOL.

There's so much to say and so many places to go with this, but for now I'm tired and sad and I don't want to think about it.

Tomorrow my Portland people are coming and we're going to tear it up. The theme of the weekend is "denial" as far as I'm concerned.

Potentially news of the most awesome kind...

My oncologist just called. I have healthy bone marrow. They aren’t going to schedule me for Chemo… yet. I don’t know what this means.

I literally just erased the blog I wrote about what having Leukemia was going to mean for me. I swear, people, my mom was THERE they told me to prepare to take 2 months off work and that this was most definitely Leukemia. They told me all of the oncologists and pathologists at the hospital had confirmed that Little Buddy was Leukemia. THIS IS SO FUCKING CRAZY.

Whatever this means, it must be good. I have never once felt like I was sick throughout this whole thing and I’m definitely one of those “woo-ey” feminists who “listens” to her body. I mean, me and my period are like BEST FRIENDS! I can tell when I’m iron or calcium deficient… Shit. Ever since this started I’ve been telling people, “I feel FINE…” I have felt all along that nothing was amiss.

So let’s review:
Immune system: working (just got over a cold)
Bone marrow: normal
Blood counts: all normal
Little Buddy: still growing and being a freak

People, you're following this along with me. You'll hear it as I do.

Because I keep beating the odds...

I have Acute Lymphocytic Leukemia.

Just in case I don't say it enough

My appointment isn't until 4:40 today but I just wanted to say that "I love you all like meat loves salt." (JRP 2008)

Teaser

I'll know more tomorrow, but for now:

Lymphoblastic Lymphoma!

I am having bone marrow taken tomrrow. Yuck.

If you google it, I'm still at stage I most likely--so don't worry.

Monday

No news. My insurance has not approved a PetCT (really?) yet and my doctor never called me back. I didn't punch anyone in the face. I just watched more episodes of Lost and avoided phone calls from my stupid land lord.

I kind of want to call the doctor again RIGHT NOW, but I keep thinking about that episode of Seinfeld where Elaine is the "difficult patient." That's a great episode...

Sunday

Today I ran around Seward Park with my roommates, watched 6 episodes of Lost, and had dinner with the Q-Crew. CL made the most bomber Jamaican Pumpkin soup.

Tomorrow I’m going to work and hopefully having a PetCT done (full body scan for more tumors.) Possibly tomorrow afternoon my lab results will say something conclusive.

Here’s the thing, you can only be actively upset for so long. After that it’s exhausting—especially when nothing is currently too wrong. Who knows how I’ll feel tomorrow or next week, but for now I feel pretty good—pretty high on the amount of love that being thrust my way… My life is still normal and I still feel healthy. Is this denial or just an amazing ability to command inner peace?

Saturday

Friday was terrible. I felt like crying all day even though my mom did her best to simultaneously distract, support, and counsel me. We got massages, we bought new clothes, we went to Whole Foods. My mom was as perfect as a mom could be in this situation. Yet all day I would randomly pick up some line of conversation that would leave me unable to talk. Yesterday evening I went back to Dr. Kaplan, my oncologist, to hear about the results of my blood work and the further biopsy-ing. The news is they still don’t know. I don’t have any of the Leukemias or Lymphomas they tested me for. My blood is totally normal. More tests. Maybe Monday.

I was really unhappy with this lack of information. All day I had been waiting for answers. I want to know what’s wrong and what they’re going to do and how it’s going to affect my life! I made it home, got to my room and lost it for about the millionth time. I turned on Wilco REALLY loudly so no one could hear and cried. It didn’t even feel like I was crying for any specific reason—just because my whole insides felt so terrible and bad. Agony is a good, melodramatic word.

It doesn't feel like I have accepted what’s happening. Like in my soul or whatever, it doesn't feel real. But at the same time I keep bursting into tears. At the masseuse I was filling out a release form and it asked me if I was being treated for a list of things--including cancer--and I just couldn't check yes. It felt like a lie. Part of me feels like I’m being alarmist and like it could NOT be true. I mean, what happens when you shoot up a benign cyst with tons of steroids? Don’t you think it might whack out the cells? Dr. Kaplan said last night that for sure it IS malignant, but until I have a name, I don’t want to say it out loud. This is good practice.

Today (Saturday) has been much better. When Dr. K told me to just relax and enjoy my weekend because I wouldn’t know anything until Monday I was like “yeah, the fuck, right.” But as I process this info with everyone and try to make it all sunny-like for them, I’m starting to buy-in. OK. You’re right, external Jessie! It IS good news that my blood work is normal and my immune system is functioning normally! I have no angry lymph nodes! How bad can an immune system cancer BE if my immune system AND my blood are being normal? Right on!

Not knowing is painful because I am worried about things that I can’t constructively be worried about yet. But not knowing is also OK because ignorance can be blissful! I was talking to AC today about what a freakin crazy week this has been. The funny thing is, I remember thinking this week was heavy and intense for the Q-crew on Monday—before I even saw Dr. Birkbey (the second opinion dermatologist.) On Monday I had a cyst! So anyway, Q-crew has had this epic week and I’ve had this epic 48 hours. (I’ve only been sitting on this information for 50 hours!) The thing is, maybe I’m at processing capacity right now. Maybe it’s OK that I don’t know what’s going on because I’ve got enough to work through without added stress of knowing about treatment or my specific illness. Just accepting that I. Have. Cancer. is maybe enough for right now.

Last weekend I was running around Seward Park with AC feeling “overwhelmed” by the kind of things that were up in the air for me. School, work, relationships, Seattle… I was like, “I’ve put all of this energy out into the universe and now it’s time for the universe to holler back with some answers!” Oh universe, you’re so sneaky! I’m irritated because I had other ideas for my future and I was hoping fate threw me some different bones, but it is what it is and for a lot of my burning questions, this will provide pretty definitive answers.

Thursday

Here is a sequence of events:
3 pm: my dermatologist office calls me at work to let me know that my biopsy was malignant. They tell me to call the oncologist ASAP because he can probably see me on Friday. I start crying immediately. My tear ducts are always about a million years ahead of my brain.

3:30 pm I leave work after calling the oncologist and leaving a message. My VP drives me home. I finally get some privacy and have a real breakdown. Stare into space. Cry. Call Mom.

4:15 The oncologist calls, he can see me at 6pm that night. Dinner club aka support club agrees to come along for the party. Now I know I can’t get bombed because I have to go see the doctor and have blood drawn. Take bath. Cry more.

6:40 I finally get in to see the oncologist. He is quite possibly the nicest person I have ever met. He takes a good 20 minutes just to talk to me about who I am and what’s wrong. He tells me it’s a lymphatic-kind of cancer: lymphoma or leukemia. Not terminal skin cancer. Something that I’ve heard of and lots of people live through. The onc examines me: I’m totally healthy. Nothing weird to speak of except crazy ass Little Buddy. More info as blood and biopsy work comes down the line.

7:15 Blood draw. The phlebotomist goes down in history as the third person to actually hit my vein on the first try. He takes 5 vials of blood. Support club cheers me on. Phlebotomist regales us with ridiculous jokes.

8: Pho. Really spicey.

9: Come home, tell the roommates, ruin their days, monopolize conversation.

9:45 Mom shows up, mostly keeps her shit together.

1:45 Staring at the computer, feeling totally alone even though I know everyone loves me. I don’t want to deal with anyone. I need to be alone. But I also feel alone. How emo is THAT shit?

There are a lot of things that are hard about this beyond the fact that my cells have gone all rogue and shit and are finally getting back at me for my goddamn philosophical EcoFem inspired diatribes about cancer being part of evolution. I mean, stubbornly, I still believe that, but I’m still in shock. There must be a lab error. I mean, I’m healthy.

1. I don’t know what to say to people. The outpouring of love is really important and I think I would do the same thing if someone I cared about found out they were sick. However, the all sincerity all the time is hard. I also hate to watch people struggle to look for the right words after I tell them. No worries, I wouldn’t know what the fuck to say either. I certainly don’t know what to tell you.

2. I’m afraid that I’ll be infertile at the end of this.

3. I can’t actually believe that I have cancer. It just doesn’t seem right.

4. I don’t like to ask people for things. I don’t like to be vulnerable. I have a feeling I will have to get used to both of these things.

5. I’m afraid no one will ever insure me again and I won’t be able to quit my job EVER to go back to school. I feel like I’ll be perma-tied to jobs with insurance. Fuck. This.

6. I was just starting to embrace my life as a young adult with disposable means. I was going to date, and take classes, and you know, get a life. Now I have to deal with being sick. WTF.

7. Am I supposed to tell people?

I suppose this is like God throwing down the ultimate gauntlet and now I need to prove that I actually am one tough cookie. I think I am.

Drink until your hair looks good

Despite my tendency to be dramatic, I am not very interested in getting all worked up about my tumor. I mean, he’s my buddy right? Last night I was feeling pretty fragile—I have a tumor, my biopsy hurt like a bitch, I have a cold… I was sniveling in my room and suddenly it occurred to me that I have Vicodin for my upcoming foot surgery (Feb. 8) and that I was in pain, so taking pain killers was not out of the question. I have never taken pain killers before. When I had my wisdom teeth out I only took ibuprofen… So anyway, wowy, it took the edge off. According to my medically-inclined housemates, it’s a rare person who can get good and stoned on Vicodin, but I am that person.

Fast forward to this morning. The internet makes not worrying difficult. For about 20 minutes I was sure I had finally come upon the answer: I have fatal, Merkel cell, skin cancer. I couldn’t be dissuaded by the fact that the average Merkel cell patient is 69 and has suppressed immune system problems (HIV, organ transplant, etc.) I was sure that I was actually one of the 5% (of 1200 annual cases) of people under 50 who get this kind of cancer. It grows quickly and metastasizes to your lymph nodes and I have a lymph node poking out!

You can imagine my relief when I found out that Merkel tumors are fixed and mine is not!

Lesson: stop google-ing scalp tumors! My doctor told me the name of what I probably have. It’s something like “truculoma.” But that is not google-able. Also, “benign scalp tumor” yields nothing of interest. Here is the info I do have: this is a rare kind of tumor, it is benign, it occurs in the scalp, it’s not fixed, and it usually runs in families. I won’t know anything else until next week when my biopsy comes back. Until then, I’m not going to act like my mom and emotionally manipulate people (in a loving way) into thinking things are more serious than they are. Sorry if you felt emotionally manipulated by the second paragraph, I can empathize.

No skiing today: the pass is too snowy. Boo.

The Misunderstanding of Little Buddy, part 2

Misunderstanding, part 1
Little Buddy, as it turns out, is NOT a cyst at all! Little buddy is a tumor. And he’s an unhappy tumor right now, having had 2 holes punched in him today for biopsy. Don't worry, no pictures.

My new dermatologist thinks all will be well, that LB is benign, and that he can finally free LB as soon as we ascertain that LB is indeed, benign. At least I can stop taking these stupid antibiotics.

And in other news, my GRE came back and it turns out I got worked on the writing section which I think is total bullshit. My percentiles for the other two sections seemed alarmingly skewed—but in a good way.

I don’t really care. My head hurts. Life is dumb. Love is a lie. I am supposed to go cross-country skiing tomorrow, but if that’s true I have to go out in public and rent skis tonight.

The misunderstanding of Little Buddy

For those of you following the Cyst Saga, I have some bad/good news. “Little Buddy” was supposed to be removed yesterday, but the steroids that were supposed to make LB shrink made him grow even BIGGER!!! Little Buddy is not like other cysts. He is a real little person/sentient being and he FEEDS off steroids. This is me doing a visual interpretation of Little Buddy and his rage:

And here is what he looked like for real on Monday night at Dinner Club:

Side note: how great are my friends that they will do a cyst photo shoot at dinner?

And here is the cat that I talk to on my way to work many mornings. Of course I still talk to cats!

So now the cyst is bigger than it was before. My dermatologist was concerned. “What do you want to do?” she asked me because I also have a medical degree and know a lot about sentient cyst-ial beings.

For fun, she cut into it. Nothing happened. LB is solid. She gave LB 6X as much Cortizone and sent me home looking puzzled. I feel really good about things.

So anyway, it’s been a rough few days between the cyst, the insomnia, and work being pretty lame. I am feeling a little defeated and I know that now I need to buckle down and work on my graduate school application so I can eventually GET THE FUCK OUT.

My plan of action is to abstain from: g chat, thinking about insurance companies, taking work seriously, and worrying about my solid cyst. I will: learn thousands of vocabulary words and do remedial math problems until I until I can make that GRE my bitch (average practice score currently: 1420). Oh, I also have to write a “personal statement of diversity.” Whatever.

MAYBE THE WORLD WILL END TONIGHT.

Caught Blogging