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.