Friday, February 29, 2008

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.

Thursday, February 28, 2008

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!

Wednesday, February 27, 2008

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!

Tuesday, February 26, 2008

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.

Monday, February 25, 2008

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.

Sunday, February 24, 2008

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.

Thursday, February 21, 2008

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...

Wednesday, February 20, 2008

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?

Tuesday, February 19, 2008

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.


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.

Sunday, February 17, 2008

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.

Saturday, February 16, 2008

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.

Friday, February 15, 2008

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.

Thursday, February 14, 2008

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.

Wednesday, February 13, 2008

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…

Monday, February 11, 2008

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.

Friday, February 08, 2008

"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.

Thursday, February 07, 2008

Because I keep beating the odds...

I have Acute Lymphocytic Leukemia.

Wednesday, February 06, 2008

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)

Tuesday, February 05, 2008


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.


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, February 03, 2008


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, February 02, 2008


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.

Friday, February 01, 2008


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.