Sunday, December 14, 2008

Hi

I just finished my graduate school essays. My personal history statement about how cancer has changed the way I feel about my life was the most difficult to write. In the end, I ended up distilling the experience into the three biggest ideas: that I realized I harbor a positive attitude at the root of my personality, that I have new appreciation for what hope is, and that I am infinitely grateful for my investment in community.

I thought my grateful attitude was a new thing brought about by cancer, but I just found this great journal entry from November 22, 2007:

“There are so many more amazing things to come. The last few years have introduced almost exclusively wonderful things into my life and yet I still struggle with their impermanence. Living in abundance—a paradigm that I love and that is not finite seems more and more appropriate.

Things that are abundant:
Love—the love of my friends
The possibility that something good will happen

Who is to say that Nathan, my favorite jeans, my friends in PDX, my professional life, the production of good music… there is no end to crushes, creativity, and my own potential. I’m thankful for Wilco, my health, my friends, and my family. There is always more.”

Sometimes I look at shit like this and shake my head. Am I seriously that girl? I think that yes, I am. It’s ridiculous.

Anyway, I feel excellent right now. My application is complete, it’s 4pm and I’m still in my pajamas, Phil Collins is playing, we have a 90% chance at a great new roommate, my sister comes tomorrow, it’s Christmas time, I just found this fantastic journal that I forgot I started last November before I got sick…

If you’re wondering how I am, I’m good. I work all the time now. I’m tired all the time. I am getting fat because it’s Christmas and I am eating a ton of sugar and my digestive system is functioning properly and helping me absorb thousands of bad calories. I made 12 rum cakes the other day. I still can’t feel my toes. I can do a half moon in yoga without putting my hand on a block…

I will continue to update on occasion, but for all you cancer blog fans out there, the best of it is Feb-August 2008. Cancer is really short. We were talking about that the other month in my LLS group—that treatment feels like forever, but really, it’s a remarkably short span of time for most folks. It doesn’t mean I don’t grapple with cancer-related issues every day (like health insurance for grad school! Blah!) but I think it’s probably significantly less interesting.

Tuesday, November 18, 2008

Marry me, Ryan Adams

I have a dad who can give me non-condescending advice about car maintenance. It’s pretty great.

Last night I watched Singles. I cannot believe I had never seen this movie. It’s set in Seattle in the early 90s and it’s Cameron Crow and it’s mid-20s angst and Matt Dillion with long hair and people (both women and men) wear tights/leggings with shorts in almost every scene. What a great fucking movie! There is absolutely nothing deep about it and there are no great lines in it like, “I just really thought I’d be something by the age of 23…” But did I mention that Matt Dillion has long hair and wears shorts and leggings? Because that is worth netflixing, friends.

How am I? Oh, the neuropathy is getting worse again, but I hadn’t been taking my Glutamine so hopefully that will improve. And I’m tired. Really freaking tired. I way overbooked November. If I can just get through the next 4 weeks and stop trying to do 100 million things I should be fine.

My body is changing again. Whenever I say I’m gaining weight people tend to be like, “good!” even though I was slightly overweight before chemo. Chemo brought me back to what had been a healthy weight at previous times in my life. However, it destroyed a lot of my muscle tone in the process. With yoga I was able to get some amount of control over my limbs back, but I couldn’t really gain strength like I used to. It was weird.

Suddenly, I find myself gaining weight rapidly despite exercise and calorie counting. I don’t know if I’m digesting better or if my body just misses being bigger, but my legs are bulking up again. Mostly this IS good. I think the majority of it is muscle. It’s just hard because I don’t feel like I have a lot of control over my body. Throughout all of this I’ve been eating as healthfully as possible and exercising as much as I could, but the results are so different…

Well, I’m off to my next brilliant netflix find: Tales of the City PBS miniseries.

Thursday, November 13, 2008

Because I can


I washed my hair tonight!

Monday, November 10, 2008

Feel the fury

What’s the good word?

It’s been a long 10 days since the Un Hick My Heart Party. Such a large surge of love, celebration, and fun is bound to be followed by a lull. The quiet has been filled with a lot of questions: where do I belong, what do I want, what am I doing, what’s the point, etc. It’s your typical mid twenties whiny bullshit, no worries.

A highlight from the last week would definitely be attending a corporate party with Julian. His company finally got FDA approval for their product and so they celebrated with a cush party at the EMP: cocktail attire, free food, drinks, and FREE CAB VOUCHERS. Is that not the classiest fucking thing you’ve heard of? To make things better, they hired a band that played exclusively 70s/disco/rock covers. Their name (I shit you not) was HIT EXPLOSION. It was awesome.

This was a working weekend which means today was the beginning of my “weekend.” Work feels overwhelming right now—like I’m on the cusp of not doing my job. But I always felt like that when I was going at full tilt. Anyway, I don’t know how to take time off, sleep, clean my room, go to yoga AND do all my work.

What else? I dropped some serious cash at the Nordstrom Half Yearly Sale. I was out of control with the sweaters. One is this BCBG cowl neck that is that kind of thing I would call fabulous and feel fabulous in, but most men would ask, “why do women wear ugly shit like that?” I don’t care. Fabulous.

Right now I’m listening to Ben Folds and drafting letters of resignation that I will not submit. One of my co-workers commissioned a flow chart that is just a list of who everyone’s boss is and then sent it to our entire organization. It’s so fucking stupid. And self-aggrandizing. And inaccurate! The pretense was that this will help everyone know what everyone else does. But all it does is list titles (a big deal at this org, ) supervisors (it’s really important to emphasize the many layers of middle management between people who do work and our CEO), and help you visualize who is at the Top and who is at the Bottom. I also drafted some really severe emails to my co-worker that copied our supervisors, but have decided to wait 24 hours before taking action. I don’t know if I can let this go this week?

I am angry. Someone is going to feel my rage. It might be my co-worker, it might be an unwitting friend, it might be one of my roommates, it might just be a nightly news anchor, it might be another driver, it might the next waiter who is rude to me, it might be the next student who flakes out on something they said they would do. I’m a little scared. I don’t want to rage, but I can feel it burbling.

Wednesday, November 05, 2008

Q & A (the beginning of my tribute to un Hick my Heart)

Q: OMG, how was the Un Hick My Heart Party?
A: Totally fucking awesome, amazing, great, fun, celebratory, inspirational, humbling, invigorating, empowering, rad, shot-ski, fantastic, loving, hilarious, sweeteous.

Q: who came?
A: um, who didn’t come? Jenny and Richard were missed Leslie represented Eugene. Nathan and Kerry flew in from Berkeley and Pittsburgh. Jon Marc and Sarah came down from Bellingham. From Portland we had: Jesse, Jade, Kelly, Emily, Jody, Steve, Jason, Spencer, Ben, Kathryn, Virginia, Margaret, Sarah, Brian, and Joanna. Joanna brought a shot-ski. Seattle? Too many to name! Dinner club + friends of dinner club + SCA!

Q: What was the highlight of the evening?
A: doing a shot-ski with my dad, Robin, and Sarah

Q: How many shot-skis did you do?
A: I don’t know

Q: what is a shot-ski?
A: a ski… with shot glasses taped to it. Duh.

Q: Where are the pictures?
A: Coming... of course I didn't take any! So send me yours!


Q: are you happy the Obama is the next president?
A: enh, sure. Yes we can, blah blah blah

Q: should gay people be able to get married?
A: why the hell would anyone get married! But I love gay people!

Q: how long does your killer vegan red curry last?
A: based on my last meal, at least 2-weeks.

Thursday, October 30, 2008

She's got (no) game

mOh man. I just went on my first date post-chemo. It was a blind date so I went wig-ed thinking that would be easiest. I would wear my fake hair, not bring up cancer, and see what that kind of interaction was like.

I am a failure at subtlety.

So pretty much it was a good time. Scrabble, beer, get to know you conversation. I felt like this was someone I might want to go on a second date with. When we got to the end of the evening and talked about going out again, I kind of snapped. All of a sudden, the half beer, the heat in my cheeks, the itchiness of the wig... I couldn't do it. I couldn't bear the thought of doing it again. I was like "well, if we go out again, I need to tell you something..." and then I awkwardly told him about it and was like "I just feel fake with this wig on, blah blah blah" and then having gotten that out on the table, not being able to stand another minute with the damn hair on, I PULLED MY WIG OFF AT THE TABLE. Yes. That was really, really weird of me. I get it.

Anyway, poor guy. He proceeded to babble about medical conditions that afflicted him and his family. What a trainwreck. I somehow doubt this person will be calling me.

So this is my lesson learned: just show up without a wig. People can't tell. They just think I made the unfortunate choice to shave my head. I don't even have to talk about cancer.

The thing is, I didn't want to talk about cancer, I just wanted to not wear my wig for another second. I wanted to be liked for being bald.

In other news, tonight was my first meeting with Team and Training for the Leukemia and Lymphoma Society. I'm going to be the Whidbey Island Marathon team's Honored Teammate. After a few practices with them, I'll be able to determine whether or not running a half marathon at the end of March is feasible. If it is, I will need to raise $1000. But I realized that would be pretty easy. If 40 people each donate $25--that's $1000! Or there's other stuff, of course.

So this is a good way to give back to LLS.

And the team's coach couldn't tell that I was the honored teammate--and I was talking to her bald. So there you go.

Wednesday, October 22, 2008

Git 'er done

Yesterday I spent an hour with my therapist trying to talk about the process of merging back into Life without using sports metaphors. It was harder than you would think.

The Hick is gone, my hair is growing back, the scariest chemo is over. Yay! But I’m still really really tired. Pulling the Hick did NOT magically restore my body to what it was 10 months ago.

My body is tired, but what I don’t think I was expecting is that my brain is tired too. It’s kind of discouraging. One of the reasons I’ve been able to be so effective at my job and cover a position and half over the last two years is that I have the ability to focus and work very quickly and efficiently. Much like if I were to try to go for a run these days, I would fall back to my old 9:30 pace, when I work I immediately jump into my old 1.5 FTE in 32 hours/week and after a few hours I am so wiped out. I work a lot faster than I run, btw. So anyway, I’m trying to figure out how to get everything done with my decreased endurance levels.

Here’s something I haven’t mentioned. Lately, I dream about my hair almost every night. It’s weird. I listened to a This American Life about people who have been blinded or lost limbs and for years and years afterward in their dreams they could still see and walk. I dream that I have hair, but I also KNOW I’m not supposed to. In my dreams, I will incredulously touch my hair or look at it in the mirror it will disappear as my sub conscious remembers that I don’t actually have hair.

I was playing with my long-hair wig the other night and I finally got it to look like my hair used to. I put it on and walked around my room looking at myself from various angles. On one hand I think I have gotten so used to myself bald that seeing myself with hair is shocking. On the other hand, when I saw myself with like, my hair I looked so much like I used (but skinnier) that it was heart wrenching. I accept that this is how I look now, and I even like it, but then I remember… I miss my hair. A lot. Still.

Monday, October 20, 2008

More from the Pro-Choice Prom


Awkward Prom Pose

Me doing yoga after Elisa started talking about how flexible she was... check my shit out!

CL looking so fine.
Rachel in my sunglasses and the necklace I wore to my high school prom.

AC putting my boobs to shame--and in my own dress and sunglasses! Hot damn.

So let me tell you about prom. It was the Planned Parenthood Pro-choice Prom: "Choose a better dress, choose a better date, choose to have a choice." 21+

CL and Elisa hosted the pre-party. I made asparagus polenta with ricotta cheese. It was awesome. Julian was my escort for all intents and purposes. I wore my favorite black dress. It's true: Even bald, I looked better, I had a date I liked better and if I were to get pregnant (hahahahhahahahahaha) I could choose to get an abortion. Yeah!

Prom was at Garfield Community Center and they had a live band playing AWESOME 80s dance music. I danced up a storm. My performance below is really just a warm up. I mean, I boogied. Hard. For hours.

When Julian and I got home from prom we congratulated ourselves on being so young and fun and going out TWO NIGHT IN A ROW (Friday we biked to Neumos for some Inde-Folk-Country-Rock) and I was feeling really... cool? Anyway, I looked at the clock and it was only 11:45! So we were almost cool.

Planned Parenthood Prom Pre-funk

video

OK, against my better judgment this is me pre-prom. Obviously, I'm succumbing to peer pressure and performing like monkey while Christina yells direction.

Sunday, October 12, 2008

Meh

The problem with today is that it’s 5pm and I have yet to get dressed. Or spend any significant amount of time outside of my bedroom beyond several trips to the bathroom and the kitchen for more snacks. But lest you think I’ve done nothing, I have eaten about a million calories, watched half a season of Project Runway, and listened to a lot of Radiohead.

I am tired. I’m finally coming down off the high of having the Hick out and grasping the reality of 16 more months of chemo. Work has been a lot of work. And I have a cold. Bahhhhhh.

Tuesday, October 07, 2008

No, it's not a third nipple... or is it?


Hmmm...
Can you figure out which 3 teeth are fake? This is really just a shot for Dr. Sheets, my orthodontist. Nice work!

Monday, October 06, 2008

Do you notice something missing?


Yup, they just PULL it out. I mean they put some anesthetic in first, and then they pull... really hard. More pictures to come of me re-enacting the historic battle.

Wednesday, October 01, 2008

Oh Holler!

I saw Dr. K today. WBC 6.6, Crit 29, Platelets 167!!!

Even more exciting: Hickman Extraction will take place on Monday (10/6) at 1pm. HOLY SHIT.

Less exciting: x-rays of my hips on Friday because they have felt a little funny since the 4 miles of fun running I did a month ago. Damn you, Prednisone!

I can't freakin believe it. I mean, the Hick is REALLY coming out. Soon. Dr. K gave me a hug, told me he was proud of me, and it's like, yeah, this hurdle is CLEARED. I start maintenance chemo next week: methotrexate, vincristine, pred...

More GOOD news. Dr. K said the amount and frequency of my Vincristine infusions will NOT cause hair loss. Grow little baby hairs! You have nothing to fear!

Other things to celebrate:
-Gorgeous weekend at Mt Rainier with 20 high school students. I love the youth I work with. They are amazing, loving, funny, intelligent, growing, and maturing... Sometimes a pain in the ass, but I feel like I have the best job in the world about 65% of the time. The weather was amazing--Paradise (5000 ft.) was 70 degrees and sunny! So beautiful...
-Package from the lovely, amazing, inspiring, and brutally powerful Bekah F. Thank you B, how did you find something so perfect? I will post pictures of my new present when I get batteries for my camera.
-Two yoga classes with Eiric this week. The man makes me SWEAT. Friday night will be my first Kirtan--singing and chanting with my teachers and yoga-friends. I plan on dedicating most of this week to yoga, to strength, and to power.

Tuesday, September 30, 2008

Un Hick my Heart

Hickman Removal Party, now known as "Un-Hick My Heart: Giving Leukemia the Finger since 2008" is set for Nov 1, 2008 at 8pm at the Mansion. All are welcome.

Tomorrow I will see Dr K to determine when the Hick comes out and when we "get to" start oral methotrexate. I will also get a blood check. I have been feeling really light headed lately which is either a result of low RBCs or perhaps a side effect from going off Prozac. Ultimately, I decided that anti depressents were an unnecessary addition to my drug-arsenal which is now more like a... cache. Um, I only take glutamine at this point, but reserve rights to Ambien and Klonopin (mostly K for recreational purposes--like the vice presidential debates).

What else? I am having a lot of re-entry anxiety. The things I stay up late obsessing over are embarrassing and ridiculous and I'm debating whether or not I really need to share it with the interwebs. Either way, I'll wait for a day when I actually feel articulate.

Friday, September 26, 2008

Wednesday, September 24, 2008

Leukemia is my bitch

It has been 223 days since I started my ALL protocol on February 13th, 2008. In the last 8 and ½ months I have had:
8 different chemo meds
6 spinal taps
1 bone marrow aspiration
15 days of radiation
28 days in the hospital
1 trip to the ER

My blood counts have been down to zero on several occasions and today, today I am proud to report:
WBC 16
RBC 4
Platelets 37

What this means is I am now producing my OWN blood cells! I am totally out of the woods immune system-wise and as long as I stay away from knife fighting for the next few days, I should be fine.

Also, at my lowest points my secondary drug use looked like this:
GI: Zofran, pepcid, tums, stool softener, laxatives
Head: excedrine
Brain: prozac
Sleep: klonopin, ambien
Itchiness: Claritin, benedryl
Nueropathy: glutamine

Some days I would literally take ALL of these drugs. But for the last 5 days I have taken nothing but my glutamine. Goodbye secondary drugs!

And hello period! In the last 8 months I have only missed 1 menstrual period! Holler, ovaries!

I have several terrible pictures that I took over the weekend I spent in Corvallis, and I will post them later, but I had a WONDERFUL time seeing everyone. It was just so… nice. There was a lot of love and joyfulness everywhere I went and I am just so freakin grateful for everything that I have.

Next week Dr. K and I are going to talk Hickman removal, ORAL methotrexate, and long-term treatment.

This weekend is National Public Lands Day and I am going to Mount Rainier with 20 high school students. Jealous much?

I finally feel as amazing as a person finished with horrible chemo should. Thank you to all my readers who think nice things for me and my blood cells. I’m sure we’re all ready for phase 3 of this blog: Fall 2008—JessieO Dates Every Eligible Man in Seattle

Monday, September 15, 2008

It can only get better!

Well, it’s over. Sort of. In terms of how they name my cycles and the severity of drug side effects, the worst of my chemo is OVER. And these last few days (as I’ve been rallying myself constantly) are the low point physiologically EVER.

Here is what my stomach looks like after 8 Cytarabine shots. You can tell how many platelets I have on a given day based on how big the bruise is. The tiny bruise is about 120 platelets, the medium is 89, and the huge ugly one is 10. The rest of look like little pin pricks because I was over 200.

I am starting to feel better. The blood yesterday was great. I worry about my white count a lot and my body seems to be running what I have started calling “mock fevers.” It will start with chills and body aches, followed by a spike where the soles of my feet and palms burn, and then the break when I start to sweat profusely. Yet through all of this, my temperature remains under 99 degrees. Today my face and head have been burning up all day. If you were to feel my forehead, you might say “Holy Smokes! You’re hot!” You would be right on so many levels. I look kind of feverish, but I’m 98 degrees.


So it’s obvious by now what a lying, hypocritical, asshole Sarah Palin is. I hate politics. I hate that there are so many logical and ethical things to nail her with and people still default to misogyny. I hate that I’ve gotten two emails already authored by democratic men, urging me to be a good feminist and do something anti-Palin. Like, “if you’re really a feminist, you’ll realize what a terrible person Sarah Palin is and do what I and all these entitled, white, ‘progressive’ men tell you to do.” Not that men aren’t allowed to be part of the feminism discourse or that many men aren’t better feminists than Sarah Palin, but the whole paradigm is so disgustingly masculine (in the bad way,) paternalistic and condescending I could barf. And I’ve been barfing a lot lately.

Saturday, September 13, 2008

Punky

Getting up this morning at 7am and going to work--a service project with 25 high school students--was physically one of the most challenging things I have ever done. To channel an old rugby phrase, I woke up feeling like "total butthole." The longer I was awake, the easier things got, but man I was totally beat and just taking a wheelbarrow up a steep hill (empty) left me heaving and wanting to pass out.

After the work project I headed for the chemo center and CBC revealed that going to work and playing around tools all day was one of the stupider things I have done since diagnosis. Platelets 20, WBC 1.2, Crit 23.

Tomorrow I am getting my last Cytarabine shot EVER, another blood transfusion and a G-shot. Maybe some platelets. So yeah, I feel pretty punky and more than a little nervous about my counts. My nadir is supposed to be Tues-Wed, but if I get Nupagen tomorrow, I might avoid it all together. I think this is low enough for my comfort. Why is this last push so crappy? Why is the Universe trying to rain on my parade? Tomorrow is my LAST INTENSIVE CHEMO TREATMENT!!! Why can't I enjoy it?

Friday, September 12, 2008

The karmic finger

Yesterday I was running around all elated, sending emails that said stuff like, “today I begin the last of my ‘intensive’ chemo ever!” I was just Pollyanna to the max and then the Universe was like, “here’s the finger, Jessie.”

My appointment with Dr. K was at 3:20, followed by 4:00 chemo. I saw the doc at 4:15 and did not get my chemo until 5:45. I was a little flipped out at that point because why was everyone trying to ruin my fabulous day and make it so I couldn’t go to fucking yoga! But the point of yoga is to not get flipped out about these things so I was like... OK, deep breaths, chill out. Came home, ate Rachel’s delicious bread pudding and fennel-kalmata olive salad, took a Klonopin and tried on outfits for Sarah’s wedding. Eventually I took an Ambien (as you know, faithful readers) and face planted.

At 10:30 my body woke me from the Klono-Amb stupor to BARF. Oh man, I could not stop barfing, retching, DRY HEAVING for like an hour and half. The homecare nurses told me I had to call Dr. K who takes all his calls… woke him up at like midnight and he told me I had to go to the emergency room. The ER was blessedly quiet and they were happy to see someone who was “really sick” and not just trying to scam pain killers. They gave me a room immediately, started fluids and eventually pumped me up with IV Zofran since I was incapable of keeping the pills down. At 4:30 I got to go home.

Today is better. My chemo only took 30 minutes which is like a freakin record, I was able to do all my errands in the 2 block radius of the treatment center and I feel SO MUCH BETTER. I had planned on taking today mostly off for Sarah’s wedding but in light of falling counts, an unreliable stomach, and an event with 40 kids tomorrow I think I’m going to chill at home for the day and watch Netflix and sleep. I think maybe the Universe tried to apologize too because I had all green lights on my drive to Swedish and no lines at the pharmacy, bookstore, or bank.

And by the way, I really do have a much more sophisticated understanding of karma than you might elicit from this post… I mean, I was a freakin religion major.

Thursday, September 11, 2008

WWOOF

I have made a heinous mistake and credited Virgina, a stunning pie chef in her own right, with KATHRYN'S amazing pesto that we ate at dinner club. My apologies. The basil was obviously righteous basil too because it came from the farm where Faf Willingly Worked On an Organic Farm (WWOOF).

Saw the doc, the whites are down and so are the platelets. Damn you, Cytoxan. Apparently the nadir comes days 12-14 so the worst should hit next week. The plan for the weekend is watch Sarah Z get married, get more Cytarabine, work outside with high school students, see Liz Squffin for the first time in several years, try to sleep as much as possible between events... Monday I'll get some Nupagen so my whites are cookin' during my trip to Oregon next week!

Today chemo was an hour and 45 minutes late. I almost had a meltdown but settled for deep breaths and eventually coming to terms with the fact that I can't go to yoga every day and that sometimes I can take pill-yoga: Klonopin. Holler. Well, now it's 8:45 and I have added Ambien to the mix. I need to faceplant in my bed and see y'all tomorrow.

Besos.

Tuesday, September 09, 2008

Crash, burn, get up

Ah, the fog has cleared. Every few months I have a Crash and Burn few days where I just totally, totally “bonk out” as they say in endurance sports. Last week was kind of a lot—the 4 mile run, yoga, work, Cytoxan, the party, the Portland visitors… and I bonked out. But the good news is I am much better at dealing with bonking than I was the first few times. Here are the lessons I’ve learned:
-continue to eat and drink water even though you feel like crap
-freakin take your Zofran before the nausea gets really bad
-it’s OK to sleep…
-as long as you are sleeping and not just lying in bed, lacking the motivation to get up

Once I reach the lying in bed with no motivation to get up, then it’s time to get up, force feed, and go to work and attempt to engage in life. That was today.

To give you a run down, I went to the party on Friday night where I must now digress and share the uninteresting update: party not that awkward. There were a ton of people there, including a lot of people that I am friends with so while I had many normal and pleasant interactions with the young man in question (including a moment I know he was checking out my ass in my jeans—and it looks good) there was no awkwardness. Well done, Jessie! As for the evening’s entertainment, my friend Elisa is a sex educator for Planned Parenthood and my new friend Nathan seemed to know a lot about sex and so most of us listened raptly to advice about... stuff. Let's just say I learned a lot.

Anyhoo, the Weeks and Verhoeven contingent made it down around 10, we met up with Birch and I did not go to bed until TWO IN THE MORNING. I know, it was so crazy. Saturday was a whirlwind of tourist-like activities and then just like that it was over. As soon as my friends left I got in bed and didn’t get out until yesterday afternoon when I realized I was hosting dinner club for 10 people. Luckily my mom was lurking in North Seattle, waiting to be useful and together we made BOMB polenta, red sauce, and used Virg’s awesome pesto to put together the perfect late-summer dinner.

Here is my red sauce recipe:
Sautee onions, peppers, garlic, summer squash
Add a bottle of beer (I used Pacifico)
Reduce
Add a goodly amount of fresh diced tomatoes
Salt, sugar, fresh basil to taste

Mmmmmm.

Today I made myself get up and go to work and tonight I went to yoga for the first time since Thursday. I was definitely a little stiff, but more than ready to hit it. Tomorrow I get to go to Eiric’s Wednesday morning class which I love but I think I’m going to have to start limiting my 9:30-11 yoga classes to about one a week if I’m going to start working “full time.”

I was just saying to my therapist that I was getting used to my cancer lifestyle—only working part time, doing lots of yoga, spending the rest of my time with the onc nurses at Swedish… Bah—Real Life, you loom large!

Here is Ben doing plow:

Monday, September 08, 2008

Friday, September 05, 2008

On the sexy topics of sex and dating

Bekah sent me a long email the other day that brought up what would happen if we blogged about the sex and dating lives of two hot chicks with cancer. The answer: who knows? Because enough of our family and friends and people we’ve had sex with (sorry, to out you as a non virgin, B) read our blogs and really…

Anyway. Tonight I’m going to a party. There will be a young man there who my friends would like to set me up with. They brought up the subject with him many months ago followed by, “Oh… and she has cancer… so you might want to wait a few months.” I guess he responded in a slightly horrified way (much as I would… cancer—no thanks! Those people have baggage!) and then when I did meet him at a party it was horribly, horribly awkward because I was obviously cancer-girl. In about an hour and half I am going over to his house (that he shares with my friend Brandon) for a party. As I have the ultimate cancer-perspective, our last encounter ceases to haunt me and I was just excited about a party (!) with my friends (!)

This afternoon CL sent me a text that said, “ps the other person whose birthday party it is is [Roommate X’s] ex… but don’t worry because you’re smarter than her.” Now I have a lot of anxiety and fear another awkward encounter; this time purely because I will be extremely awkward around this young man. But after trying on my entire wardrobe, I have found an appropriate outfit and as long as I remember to freshen up my deodorant and put some moisturizer on my “combination skin” things should be OK.

But back to paragraph 1: the sex and dating lives of hot chicks with cancer. Or in this case, my non sex and dating life. Dr. Oz said on Oprah a couple days ago that men don’t care about cellulite, so perhaps they also don’t care about temporary Alopecia. But I have also found out over the course of my short life that men are really uninterested in smart, empowered, and independent women so I fear cancer has made me even more of all of these things. It’s going to take a Salt ‘n’ Peppa “what a man” to handle me at this point.

Here is a list of things that make me feel unsexy:
-My shiny, bald head
-Watching my pubic hair fall out every time I go to the bathroom
-Being constipated for the last MONTH
-The huge bruises that I’ve gotten from being careless and low on platelets
-Suppression of hormones due to chemo

Here is a list of things that me feel sexy:
-The fact that I’ve lost almost 20 lbs with cancer
-My new yoga bod and my sexy lean muscle that’s poppin’
-The fact that I look GOOD bald
-The mysterious tan I’ve developed in spite of hiding from the sun all summer and wearing sun block
-I have an awesome rack

Well, expect more of my thoughts on this as I get totally “Real” about my sex and dating life which will hopefully materialize at some point. And don’t worry people who I have had sex with and who read this blog: I will not out you or speak of our encounters. I’m sorry I said the food at Geraldine’s was better than anything we ever had together, but the fried egg sandwich when a girl is on Pred and not on sexy hormones will make you say things like that on the internet…

How was that, B? I have a long email drafted to you that I will send soon. Mucho love.

Thursday, September 04, 2008

There's no such thing

As too many pairs of David Kahn jeans. Especially if you buy them on eBay. I know, I said I would never buys jeans on eBay again, but the third time must be a charm because these are absolutely perfect. I found my favorite pair of jeans that I bought about 18 months ago (and since have been discontinued) but two sizes smaller. They fit beautifully.

Oh right. I went to the oncologist today. Dr. K is back! I forgot to ask him about his vacation... I was too busy bragging about the 4 mile run. Anyway, my WBC is up to 8.2, my crit is 37 (up from 25), and platelets 223. That's pretty damn good. Pretty damn normal. Normal enough to start chemo. I was like "whoa there, I don't want to take Cytoxan because I don't want lymphoma and I possibly DO want babies." And Dr. K was like, "Jessie, I wrote a paper about how Cytoxan in such small doses as I'm giving you has no effect on whether you get cancer again and EVERY drug I give you has the possibility of rendering you infertile, but you're young and we'll just see..." And I was like, "meh, good enough, shoot me up."

Cytoxan in. Ara C shot #1 (of 8) done. This was the last big one. There are lots and lots of small drugs to come, but the Cytoxan is the last drug that will send my counts down and make me feel really bad. Ara-C just makes me not hungry which is awesome since I found out by reading my chart that my ideal weight is FORTY FIVE POUNDS less then I weigh right now as 5'8" and a size 10 (with huge breasts, I might add). Will someone redo the BMI already? I think we all realize that it's totally fucked up to call me obese.

The Cytoxan should take full effect sometime early next week so I'm planning on gettin down and partying at Brandon's b-day tomorrow. And perhaps visitors from the South will arriving on my doorstep? Have I ever mentioned what BAMF friends I have? I have BAMF friends.

It's so good to keep doing the "lasts." A couple weeks ago I could tell my nurses, "this is my last Adriomyacin." Today I was able to say to everyone "this is the last Bad Drug I have to take." It was almost scary. On one hand I totally hate chemo and I hate what it's done to my life, but who will I be and what will I do when I have to merge back into the semblance of a normal life? I mean, luckily I have monthly chemo for years, but when they pull the Hick, when the big stuff is over, when my social life doesn't revolve around the nursing staff at the Swedish Cancer Center... My therapist was like, "the transition back can be rough." And I was like, "hah!" But today I had my first taste of panic. I've gotten really good at being a cancer patient. I'm like the best cancer patient at Swedish. Everyone loves me. I do everything I'm supposed to... anyway, I'm good at normal life too, I just saw the light at the end of the tunnel today and it was really bright.

Wednesday, September 03, 2008

Balder than ever?

Well tonight I was sitting in the kitchen at the counter telling Julian and Krista about how my dad was not only completely unimpressed with my 4 mile run, but urged me to do more cardio because yoga really wasn't much of a work out. Yeah, I know. What the fuck? But this is my dad who I love and who is a good man who really just doesn't think anything is quite good enough. He also told me that I needed a hobby, "a good craft project" when I told him I was too exhausted to manage work and life a few months ago. What can I say? It's hard for him that I am sick.

OK. Moving on. So I'm telling J and K this story when I notice there are little hairs all over the counter. Gross. Turns out they are MY hairs. Yes, my time has come. After 3 weeks of Adriomyacin, it makes sense: my hair is falling out. So instead of having a "party" this time around, it was just me in the bathroom with a safety razor and it was cool. I mean, if Richard isn't going to shave my head I refuse to settle for anything less. So here are the shots from head shaving #2:


The hairs this time around are shorter, but some of them are as long as 5/8 of an inch! Go little hairs!
I slightly despaired at this point and wondered if I should have gone back to Abraham at Kicks 'n' Cuts who gave me a free shave last time. But I was already committed. This project took about 45 minutes. I had more hair than I thought and getting the stuff around my ears was TOUGH.

Ah, Mr. Clean again. I only knicked myself once and while there are a few spots that could probably use a little more love, I am good for now and will correct the rest in the shower later. Being bald is OK. I was definitely pred-chubbier last time around.

Let's compare: this was taken on March 15th. I am holding up my sweater because the pred has given me a double chin like what

So I am happier about being skinnier this time around.

In other news, I think my blood transfusion from last time is bonking out because I took a 2 hour nap yesterday and a 3 hour nap today. I'm just tired. Tomorrow I see Dr. K and we may or may not go the Cytoxan route. I have serious reservations. But mostly I can't wait to tell him about my 4 mile fun run. It's my goal to be the best cancer patient ever. Give me an A! Give me an A! Approval! Approval!

Monday, September 01, 2008

"Fun Run"

Today Krista, Julian and Lissa ran a half marathon for Muscular Dystrophy. I said I would go and cheer as they crossed the finish line. Then I said I would drive with them in case they wanted to get drunk afterward and needed a DD. Then I realized that I would have to wait around for 2+ hours waiting for them. So I signed up for the 4 mile "Fun Run/Walk" figuring that I could definitely walk 4 miles. Well guess what? I CAN RUN 4 MILES. Heck yeah. I ran all 4 miles. Or jogged all 4 miles. I was so proud of my body! Fuck you, chemo meds! Rock on, blood cells.


Julian, rocking the official Team NoBea headband. You can't see it, but this homemade headband says "Team NoBea."

Breakfast of champions. Champions battle neuropathy with Glutamine.

Team NoBea: Me, Krista, Lissa, Julian. I did 4 miles in about 50 minutes, they did 13.1 miles in 2 hours 10 minutes! They credit me with pacing them the first mile and half. Haha. But let's pretend. If you ever want an 11 minute mile pacer, I naturally run an 11 minute mile...

Sunday, August 31, 2008

Because I obviously have to post

I have several potential blogging topics:
-How much I don't want to take Cyclophosphomide on Thursday and and my reservations about my treatment protocol/discussion of whether or not I even have ALL, etc.
-My growing connection to the NoBea neighborhood via my yoga studio. My growing connection to Seattle and community here
-The merits of John McCain's choice of Sarah Palin as running mate and how the Republican strategists seem a lot more together then the Dems
-Review of Murderball which I finally saw last night and loved. Segue into how much I miss playing rugby and my teammates

But I'm not feeling very bloggy. I'm feeling kind of tired. The blood transfusion rocked my world (energy! yes!) and I kicked ass in both my yoga classes so far this weekend. But now all I really want to do is watch the US Open, read, and eat. We're having a dinner party right tonight (cooked almost exclusively by Rachel--I contributed my 3-day old tabouli which is still pretty tasty) and I'm hiding in my room drinking diet coke. Last night Julian had a party and I came downstairs and stayed long enough to gorge myself on guacamole and say hi to his friend Sarah who I really like and then I retired for the evening--Murderball in bed. Perfection.

Friday, August 29, 2008

Check, check

Went in for a blood check this morning before the long weekend... Whites are up to 6.6 (holler!) and platelets 127. Go bone marrow, go! However, my reds continue to drop and it seemed like a good idea to get a transfusion this afternoon so I can have a really fun 3-day weekend. Transfusions are mostly cool because you feel so much better with more oxygen circulating. They just take about 5 hours which is pretty boring. I'm going to go home and gather netflix and Miranda July short stories and head in at 2:30.

Again, blood donors of the world: I thank you.

I have no plans for this 3-day weekend beyond doing yoga, watching TV, and shopping for skirts and t shirts at American Apparel. On Monday we have a Quest reunion with Danina and Lynn and dinner club. Awesome!

Oh, and Sarah Palin? Perhaps I will write a brilliant blog about my thoughts on the DNC and those speeches while I'm getting stranger-blood dumped in my body. O e t t i n g e r, out.

Wednesday, August 27, 2008

The beat goes on

My white count this morning was 4.1—that’s a fully functional immune system! The likelihood of me ending up in the Onc ward this week is very small. My crit (reds) are a little low and I will say that is the reason I only biked up half of Beacon Hill before getting off and walking. Low hematocrit and Adriomyacin. I heard a rumor I won’t bother to research that Lance wouldn’t take Adrio because it diminishes your lung capacity. Right. I bet Maarten took the Adrio like man.

Also, I forgot to mention in all my despair of steroid withdrawal that I got to see Jenny and Richard last weekend and it was sooooooooooo great. They brought philosophical discussion back to the NoBe Mansion. After they left Julian, Beth, my mom, and I debated the merits of organized religion as a political force. Jenny and Richard, come back and enrich our intellectual lives! No one will let me wax on at such length as Richard! No one!!!!

Tuesday, August 26, 2008

A new hero

Forget Wolverine and Lance (who's a neo-con, anyway)

This is my new hero:
Maarten van der Weijden (he even has a cool name). He just won a gold medal for distance swimming and he had ALL seven years ago AND a bone marrow transplant. Thanks, Duane for the link!

New life plan: learn Dutch, move to the Netherlands (where they have good health care and attractive people), marry Maarten and be happy forever. Swimmers are hot.

Monday, August 25, 2008

made it through to the other side

Whew. I woke up this morning feeling... normal. Well, Jessie-normal. I did 90 minutes of yoga and rewarded myself later in the afternoon with rice pudding from the Carniceria downstairs. It's really good rice pudding. I further rewarded myself by buying Half Baked for tonight's dinner club which is only me and CL.

Work was good today. It was kind of fun and busy and productive and I stayed later than everyone else for the first time in months. Of course I came in at noon, but it was almost an honest day!

What else can I tell you? I have raging acid reflux right now, but I just drank a glass of milk with 10 g of L-Glutamine in it. Today I begin my L-Glutamine regimen which should help with my returning neuropathy. Damn you Vincristine! Anyway, I had been taking it in pill form from the natural food store--100 g cost $14 and I had to take about 10 pills a day to get it all down. The powder was 1000 grams for $40 and it makes me feel like a buff weight lifter taking a supplament. As the jar informs me, I can just add this "tasteless" powder to my meal replacement/protein shake! Perfect!

Sunday, August 24, 2008

whatever

When Dr K suggested I taper off my steroids because I might crash, I was emphatic that I just was going to STOP taking them. That was stupid because now I'm experiencing withdrawal.

I feel like total, total crap. I'd elaborate, but that's sort of it. Crap.

Friday, August 22, 2008

And then some days you just want to tear out someone's eyes

Fuck.

Can you please go meditate, pray, or do whatever you do?

Thursday, August 21, 2008

The last day of steroids, cont

I felt like the most bad ass cancer patient in the world this morning. After going back to sleep post-post 1, I woke up and packed my Ortlieb bag with everything I would need for yoga, work, and chemo. This required a high degree of organization. Then I BIKED to yoga (ok it was a flat mile) but it felt so amazing. I haven't been outside on my bike in almost 10 months and I LOVE riding my bike. I mean, I really love riding my bike and for some reason I just got kind of scared off after the cancer and my legs started failing me. But this morning I did it!

Class was great. I felt good energy to just push hard and got a great sweat in. Afterwards I talked to my really rad teacher a lot about cancer and she told me that I was inspiring. Compliments, compliments, compliments. Then I rode my bike to work and worked, worked, worked. Then I kind of crashed. I stopped feeling like Lance Armstrong/Wolverine and started feeling like the world was crashing down around my shoulders. Shit. You know what Lance Armstrong and Wolverine will never have to deal with? Getting their period. Yes, it's here again. Hallelujah, but steroids and hormones together? Jesus, if it weren't for all my freakin meditating I probably would have had a complete melt down already. As it were, I'm just giving myself a break here, drinking some coffee and I called my mom and she's going to drive me to chemo as opposed to my original plan which involved biking to chemo... Some day!

Some days I just feel so good. I talk about this with my therapist and we talk about it a lot in yoga--not expecting things to be the same every day. Not letting yourself think something is going to be hard or bad just because it once was. I talk a lot about being ready for anything to happen, but when I say that I mean I wake a lot of mornings expecting to feel wonderful despite all the shitty things going on inside my body. So while my uterus does jumping jacks and my colon takes its sweet, sweet time moving anything out of my body, today is my last day of Decadron and JENNY AND RICHARD ARE COMING TO VISIT. Maybe I'll put off my weekend of despair for a bit to eat lots of unhealthy veggie food with them.

Tonight I get pho!

The last day of steroids

Well, I can't think of a better way to start my last day of Decadron then with a 4:30 am post. I feel ok. Not too crazy right now. Not like last night when I came home at 8:30 to witness a double dinner party (after myself and the house cleaners had spent the afternoon meticulously cleaning the kitchen) and was like "If this isn't clean tomorrow morning I'm going to have a nervous break down." Then I took some Klonopin, ate some food, and chilled. I really love my roommates and they took my baby freak-out gracefully and just pacified me with portobellow mushrooms. Mmm. Roommate love.

Things. Things are ok. Today is my last cocktail of the stomach killer: pred, adrio, vincristine and while I'm grateful to hopefully go back to regular bowel movements and a peaceful esphogus, step 2 (we can talk about it now) is scary. My next drug is Clyclophosphomide. Its two main side effects are Lymphoma and Infertility. Talking about poop is one thing. Getting graphic with my friends and roommates about all the correctal, Maalox, stool softner, etc I'm on often leads to funny conversations. And even while it's painful, it's... OK. Pubic hair falling out? Funny!

Lymphoma and Infertility are significantly less funny. And they aren't immediate. And I can't control them with more OTC drugs or Zofran. And who the hell knows. And yeah I'm in a very low risk threshold. So enough about that.

Today is Bekah's PetScan. I don't talk a lot about my other cancer-buddies out of respect for their privacy, but today is important and Bekah is one of the most significant connections I've made since diagnosis. If you love cancer blogs (and who doesn't?) and brilliant, sassy, thoughtful, generous, and attractive young women with cancer (obviously, you do!) check out Bekah and send her whatever you send me. It seems to work--my generous community!

Last night (speaking of great young ladies with cancer) was my LLS group. It turns over a lot--cancer being such a transitory disease, but this was perhaps the most successful group I've been at. There were 4 of us--all currently undergoing treatment. All young women between 22-30 and able to talk to each other. It's always nice to go to LLS and talk about cancer with people who REALLY get it, but for some reason last night was just easier and more fun. I was really impressed with the other women and the insight their stories provided. And now being 8 months into treatment I'm starting to feel like a wise old cancer lady. Very positive.

Cancer and The Bus. I ride the bus to Pike Place Market to see my therapist on Tuesdays. In the polite world, most folks never stare at my Hickman and only take side glances at my short hair. This is not true on the bus. I am guaranteed every ride to engage in a conversation with a COMLETE stranger about my health status. I like it. It feels so honest. And I love to talk about myself. And so far everyone I've encountered has sent me away with genuine well wishes-- random acts of kindness. On Tuesday night the two random women standing next to me (who didn't know each other) were both survivors and for 10 minutes we just made awkward conversation about cancer. But I liked it. There are places other than Swedish where I'm not a freak. I'm not a freak on the bus.

Tuesday, August 19, 2008

Manic Roid Machine

I just woke up with that blog post title on the tip of my tongue. Manic. Roid. Machine. Sweet.

Here is the good news: I only have three (3!) days of decadron left! And while I feel completely insane about 30% of the time, hyper is slightly better than depressed. Hyper. Really hyper. And then hyper CRASH! BANG! And I just drank an entire bottle of Maalox in 24 hours.

Last night I made dinner for fourteen (14!) people! It was dinner club, plus my fam, the roommates, and some Corvallis kids. Here is the delicious menu:

Black bean burgers from scratch!
Black beans mashed (with a few whole ones for appearance)
Walla wallla onions, peppers, zucchini sauteed
garlic, lime, salt, cumen, whatev
bread crumbs (gluten free!)
with a little egg to hold it together
**I broiled the burgers (both sides) on a lightly greased pan (they held together very well) and served with avocado, tomato, onion, pepper jack, and condiments on sourdough English muffins. Or tapico hamburger buns (for those of you who can't do the gluten.)

MMMMMMMMMMM

Gluten-free tabouli!
quinoa
chives
tomatoes (seeded)
cucumbers (seeded)
chopped mint
chopped parsley
garlic
olive oil
lemon
salt

Desert was the approx 4 lbs of blueberries I picked on Sunday afternoon mixed with fresh peaches, lime, and honey. We served it over vanilla ice cream and CL made the most decadent blueberry cobbler. I love food. I love community. I love Klonopin my new anti anxiety med that made it possible to lie down and stay lying down all night (even if I didn't exactly sleep) after my guests left and I had manically cleaned the kitchen (with help) several times. This isn't nearly as bad as last time's bought with steroids and it's almost, almost over!

Thursday is my last cocktail of Adriomyicin, Vincristine, and Decadron. After that I get a rest before the Cyclo and Ara-C. My plan for this weekend is to do lots of yoga and just crash hard off the steroids. I hope I cry and sleep, and read a lot of books and drink a ton of water. If you want to come over and watch sad movies, I think that might be just what the doctor ordered.

But I'm getting ahead of myself. I still have 3 nutso days left and on those days I have lots of fun things planned like going to yoga with my sister in a few hours, seeing my young adult cancer group, hanging out with high school students and writing the first complete draft of my fall programming schedule. Boo yah, baby!

Roid on!

Friday, August 15, 2008

The Post that was meant for 8/14

**Oh, happy Belated B day Annie P!**

So apparently my mom (despite continued check ins this week) put out the call that I wasn't feel so well when she posted her Jessie-update. I still haven't addressed this with her or her mass emails, but it seems we now need finally have the boundaries talk. What is, and is not stuff I want her to share with her email list. Here is the email that I sent out yesterday that reflects how I actually feel:

Warning: long, rambling email about cancer, general state of mental health, lots waxing philosophical, unforgivable bastardazations of Eastern Meditation practices, some irony, and wholy OK to skip through. But a progress update seemed necessary for many in my fan club. I won't be bashful, I have a fan club.

So here we are: the final 10ish weeks of intense chemo. It's kind of scary if I think about it too hard. Every morning I wake up wondering what my blood counts look like. Do I have an immune system today? Those blueberries I just ate—I forgot to wash them! I hope they don't have killer fungus! Etc, etc. But I've also gotten used to this cancer-life and really, I don't think it's that different than life in general. We never know what our day will bring—I'm just more… ready for the infinite possibilities?

Status: doing good! My GI track is losing cells which means I have to remember my antacids and not do things like eat spicy food and drink 10 cups of coffee a day if I want to be happy. I'm ok with that. Last night I made egg drop soup for the first time. Mmmm.

Despite an emotionally rocky July (this cancer business is taking WAY too long and I was getting a little burned out), lately I've been feeling extremely peaceful again. I feel lucky for so many things everyday: my job, my health insurance, my body's enthusiastic response to killing cancer cells, the practice of yoga and meditation, but mostly my wonderful, supportive, family, friends and community. I have heard so many people iterate that cancer cost them friends—that they learned who was really there for them. What I've learned is that EVERY one is still here from me: that my community and the love people have for me is stronger than I ever knew. And in this process I've also made friends: both cancer-related and non. I actually have MORE friends now I think… Weird. So thank you so much to all of you for your loving thoughts and words. Again, it's woo-ey shit, but I feel all the vibes you send me.

Right now my life is taking every day as it comes. It's mellow. I go to yoga, I go to work, I clean my house (massive doses of steroids again), I cook with my friends, I walk around Seward Park, and I hang out with high school students who make me laugh really hard and like to touch my Hickman line and hear about all the crazy, legal drugs I get to take. Fall should be exciting for me professionally—more turn over and rearranging has left me in a great position at work—autonomous, respected, in control of my own programming but great opportunities to collaborate! Yes!

I think of myself as building a bridge right now--a bridge back to normal life (having cancer, my use of cheesy metaphors is immediately taken without irony-relief!). Physically, my body has changed, and I'm learning where she's become so strong and the other places I've lost her. Mentally and emotionally, I'm still grasping all the issues I put on hold last January--namely: who am in the face my own life? With disposable income, a wide career track, burgeoning communities in several locales, food and clothing affectionada: how do resolve and distill what I really love above teh general hum? How do I make my life meaningful and in service of others? This was a journey I started in earnest about a year and, just above this last set of chemo-stream crossings, I see the path is back and it inevitability will look very different. Deep, huh?

I want you to know, that I have really come to accept the reality of cancer in my life: the drugs, the possible long-term effects, the sitting and waiting, the patience, the vulnerability, and at time deep exhaustion. And while I do try to save some of my emotions for healthy things like anger and sadness, I've mostly found that acceptance makes daily life do-able AND pleasurable. I'm still breathing and functioning every day and even though my emotions are often close to the surface, I kind of like the rawness and with which I get to experience things. But the over arching thought I really feel is peace. It's easy for me. No one thinks this is terminal and we (my onc team) feel like we're going to the end of something entirely curable. This process will leave scars, but maybe not the kind people associate with a cancer battle. And that's where I am.

My hair is also growing back (even though it will probably fall out again next week) and I'm including a picture of my re-grown eye brows. Following this period of intense chemo, I'll be on a maintenance protocol until 2010. I may or may not be able to grow my hair back, so I relish these last few weeks with my eye lashes. However, who knew I looked so good without hair? Other things that pertain to the future are that I will be in Corvallis in late-September for my friends' Clint and Ashleigh's wedding. I am so excited by the possibility of seeing so many of you! I promise not to drink too much at the wedding on Saturday night so I can go to church on Sunday morning, the 21st! Also, watch out for a big bash in late October when they pull my Hickman line. I haven't gotten very far, but there's going to be party and nothing about this party will involve Denial. The party will be about moving forward, purging the house of chemo deamons, and hopefully me figuring out a way to honor all the wonderful people who have supported me ceaselessly in this process. Oooh, I get excited just thinking about!

Here is something my yoga teacher shared with me the other day that I find particularly inspiring: Every day we're all looking for truth, beauty, and immortality, and really, it's everywhere…

Lots and love,

Jessie

Wednesday, August 13, 2008

Truth, beauty, immortality

So far, so good. I woke this morning with a peaceful belly and went to yoga. What it comes down to (I’ve decided) is that if I wake up and I feel good, I should go to yoga because I don’t know if I’m going to feel good again at 6pm when the next feasible class is. My therapist and I talked about this and apparently, that’s very healthy behavior (for someone who has such a flexible job).

Last night I had some prednisone mania—I cleaned out the refrigerator, went grocery shopping, and did a bunch of dishes. It’s such a weird feeling to hear your body scream at you, “Jessie! Slow down! I’m tired! Let’s watch TV” and my brain is like, “Um, we still have organize the Tupperware, and do you think the couch would look better against that wall? and I wonder what the weather will be like in Cabo in January? should I go to that yoga retreat in Mexico? I better make a detailed budget of my expenses for the next 6 months…” So then I took some Xanex (I’m going to embrace meds this time around) and was able to chill out enough to watch Broken Flowers with Julian. Jim Jaramush on Xanex is kind of hard. Boring is a good word.

Class was good. We talked about not letting the past and memories become a reality or something so fixed in our minds. Every thing is transitory and has the possibility for newness every second. When you’re trying to be optimistic about your last 10 weeks of hard chemo, this resonates well. It’s sort of what I’ve been hashing over with my therapist the last few weeks anyway because I have a lot of anxiety surrounding falling blood counts, hair loss, the unknown, etc.

The other thing my teacher said was that we’re all looking for truth, beauty, and immortality and that these things are boundless! For some reason, that just really made sense today.

Tuesday, August 12, 2008

Thanks, body

Yesterday was not my greatest day. My stomach was quite unhappy actually. Instead of going out with my roommates giving Jake a proper send off, I lay in bed half listening to This American Life Episodes that a friend sent me last time I was in the hospital. Periodically I would wake up, resume the fetal position, hear Ira Glass’ soothing voice and then pass out again. At some point in the middle of the night I managed to finally void my body of every thing offensive and when I woke up this morning I felt so great!

There's nothing like feeling terrible to make you appreciate feeling great! It’s like when you have a horrible hang over and you finally manage to sleep it off. When you wake up you walk around all afternoon marveling at how amazing it feels not to want to die! That’s sort of how I felt when I woke up. Like, yes! To celebrate I went to a yoga class and sweated out lots of toxins and got myself good and tired. Awesome. So far, my lunch is sitting gently in my stomach. When I was meditating in yoga this morning I just focused my practice on gratitude towards my body for being well today.

I love yoga. I am going to try not to get too woo-ey about it on here, but it’s been everything I’ve needed. I feel like it’s helping me heal my body and my soul. I feel like I’m rebuilding myself from the inside out. I am so grateful for my teachers at Yoga on Beacon and that I can go so often. I am in a unique position at the moment—there’s not a lot going on in my life beyond treatment and I can’t really plan much for the next few months as I go with the flow, but there are 4 yoga classes a day all week and so it’s something I can always fit in or use to kill time constructively. And that’s all I’ll say for now.

Oooh, I love you!

Monday, August 11, 2008

Gosh darn it

Would you believe that there’s a “Blogging for Blood Cancer” week and that this is it? Well, believe it, baby! Since I love blogging and in particular, blogging about blood cancer, I thought I would try to blog every day this week!

And how appropriate too. Because instead of feeling all healthy-like I am feeling pretty cancer-y today. My chemo from Thursday night is starting to take effect: my mouth hurts, I’m tired, my body is SORE from yesterday’s yoga class… Oh, cell death!

But before everything started to suck, I had a nice weekend. On Saturday I went to a community garden work project (yay community! yay gardens!) where there were goats! I love goats! And then my mom and I went to Nordstrom and bought new clothes. When I got home I forced myself to purge my t shirt drawer down to the scant few items I actually wear. Yesterday I went to yoga, had lunch at Geraldine’s (cornbeef sandwich, fries, diet coke, coffee) and then writhed in pain all afternoon because hello! my GI track is dying too! Buy I rallied for dinner at the Lemongrass with the Christinas and my mom. God, I love food. However, I think it’s back to wheat thins and bananas for the next few weeks while I wait for my stomach lining to come back…

Saturday, August 09, 2008

Check out this fuzz!

So here I am with my new 1/2 cm of hair! And look at my eyebrows! Cool, huh? Well, I'm excited even if the fun won't last too long.

On Thursday night my counts were finally high enough to start my final round of Bad Chemo. Bad Chemo is 3 weekly doses of Danorubicin (adriomyacin) with Vincristine and steroids. This is followed by 1 dose of Cyclophosphomide and 8 Ara-C shots. Then Bad Chemo is over! After Bad Chemo comes 4 more weeks of the Methotrexate and then, then, then they pull the Hick?

So the bummer about Bad Chemo is:
-hair falling out again
-possible mouth sores, exhaustion, neutropenia, anemia, fevers, etc.

Dr. K is letting me do all of this out-patient if I promise to let him know immediately if I start running fevers. I also have to promise to check myself into the hospital willingly if things go south. Bad. It's about a 50/50 chance that things will get yucky.

Precautions involve avoiding germs like there's no tomorrow. I dont' know what this means for me and yoga because yoga involves rolling around on (mostly) clean floor and getting so sweaty my bandage falls off the Hick. I would be really sad to stop practicing for a few weeks, but even sadder to go back to Swedish 12 East! (For those of you not in the know, this is the Onc wing of the hospital where I'm treated.)

Just in case people were wondering about doing helpful things for cancer patients, I think the big thing to do is get out there and give away your beautiful healthy blood. Over the course of the last 8 months, about 36 awesome A+ blood donors gave one unit each that helped me with low platelets and non existent red blood cells. Thank you, blood donors!

(Is the Prozac working or what!)

Friday, August 01, 2008

Peace

I took two Xanex, slept for 10 hours, and am no longer on the war path. But sanctimonious fucks who shave their heads for little kids to get attention from their friends still suck balls. Run a fucking marathon like everyone else, tough guy!

I think Wolverine would probably give them a slashing.

Thursday, July 31, 2008

Jessie gets angry

I was just internet-ing and came across this website:

http://www.stbaldricks.org/

I find it OFFENSIVE when people shave their heads to make cancer patients feel better. It’s stupid. It’s so fucking stupid. How can you equate you shaving your fucking head with the fact that I am taking toxic poisons that are making my hair fall out (and my stomach cells die and my mouth break out in sores and oxygen harder to circulate) ? You don’t have cancer. You don’t want cancer. What are you doing fucking shaving your head? And why didn’t you pluck out your eye lashes and shave your eyebrows while you were at it? Because you’re fucking vain and you look stupid without eyebrows and eyelashes? No shit! But that’s what happens when you have cancer, you self-serving ass hole! It’s so fucking trite. It trivializes the whole experience. Having cancer is so much more than losing your hair. Wow, I am really heated about this. I actually didn’t tell one of my friends that I have cancer because I know her to be a head shaver. She would shave her head, say it was in solidarity with a cancer patient and then everyone would tell her how cute she looked. Oh my god, I’m getting so angry just thinking about it.

So anyway, a few of my female friends did (in infinite sweetness) offer to shave their heads and I let them off the hook. If I’m sad about losing my hair, why would I want that for anyone else? I don’t. And I kind of earn the right for people to feel sorry for me in my baldness because I actually have cancer. People who shave their heads who don’t have cancer do not deserve the same level of pity-driven respect that I get when I tell people my hair loss is due to cancer! It’s one of the 2 perks! The other perk is that I’ve lost 15lbs. Of course I have to pretend to be sad about that too. And everyone has to pretend that it’s bad that I’ve lost weight and that I should gain it back. Only my bitchy roommate was honest enough to say, “God, I’m jealous you’ve lost so much weight.” Of course I look better! America is obese--most people look better down 15lbs. Even people who are a normal weight. Skinny is hot. But it’s OK, I know why you can’t tell me I look great and why I can’t tell you that I’m happy about getting skinnier.

**Note: when I shaved my head, so did my friend Richard. And I really appreciated that I got to wield the clippers and someone else was shaving their head, but Richard is a man with short hair who looked very attractive with a shaved head. So I definitely appreciated the company, but no one ever tried to equate our experiences.

Anger is the word of the week. I’m pissed. I’m pissed about having cancer. I’m pissed about other awesome people having cancer. I'm pissed my counts were too low to start chemo tonight so I have to wait, WAIT another fucking week to get this over with.

When Kelly was here we talked about how this is really just kind of a shit time. That even folks without cancer were having a pretty hard time making decisions. It’s this damn awkward mid-20s. I actually was discussing this with my shrink as well. I was doing some questioning, soul-searching, self-absorbed mulling BEFORE I got cancer. Then I got sick and it was like I kind of got a little break from making stressful, grown up decisions. I know, I’m lucky, right?

Speaking of Kelly, she and Jade were here this weekend and it was awesome. We just hung out, Tripod-style. We went and saw Mama Mia which is a good girlfriend movie. A really good one. The one thing the three of us lack is a cheer. So Kelly is working on that.

Also awesome: The Departed, my friend Sara Gribs, yoga, high school students, and both the potential roommates we interviewed.

Friday, July 25, 2008

Miss me?

Two weeks? Sorry I’ve been absent. I know you need your JessieO-updates… Things here are, well, they’ve been better.

A couple weeks ago when I was talking to Dr. K about all the sleeping and anxiety and general badness I’d been experiencing he was like, “Jessie, I think maybe you’re depressed.” The thing is, depression doesn’t fit into my idea of myself as a superhuman. Was Wolverine ever depressed? I doubt it. I mean, sure he was moody and dark a lot, but he never wussed out and started taking Prozac and crying in a shink’s office. Sorry. I’m taking Prozac and crying now, so I can make those jokes.

Oh, where to go from here? I don’t know what to tell you. AC pointed out the other day that I’m not very good at saying how I feel right now, but would rather tell you how I felt yesterday/last week and how I’ve processed those feelings in the mean time.

What I’m working on right now is being sad. I know that I obviously whine a bunch about things that aren’t going well and have general feelings of blah-ness, but it’s been hard for me to be sad about anything. Every time I try to explore feeling sad, or mourning things that have been lost in this process I try to cheer myself up/not tempt fate by reminding myself of all the things that are going well. I’m serious. It’s really hard for me to get any good woe going on because I always have to remember how damn lucky I am.

I’m not sure how I feel about the Prozac. I was really not interested anti depressants initially because I felt like this whole depression thing was situational and not really an issue of chemical imbalance. But my therapist was like, “why feel so bad for the rest of this situation when you could feel better?” and I was like, “hmm…” not letting on to my “What Would Wolverine Do?” mentality. Anyway, it turns out that admitting that I am depressed has helped a lot. It means that I have identified a problem to solve. Sweet. I’ve been talking to someone about being sad and going to yoga and walking to work and FORCING myself to be awake and socially engaged and it’s working pretty well. And it also turns out that the Prozac is making me dizzy so I’m going to talk to Dr. K about what would happen if I stopped taking it. I’d really rather not play around with brain chemicals and I’m feeling better.

Not much else has been going on with me. I’m going through the motions and some day things will be better. I see Dr. K on Wednesday to see if I’m ready for the next round of chemo. We’re looking for another roommate so that’s kind of exciting.

Kelly and Jade are coming to see me this weekend! They’ll be here tonight and are staying through Sunday. We will probably just have an eating and lying around weekend, but as Jenny and I were discussing, those are like the most important people to have: the people you can do nothing with.

Wednesday, July 09, 2008

Not the best week ever

Things have been a little rocky around here lately. To summarize the last week, I have felt totally shitty and spent the majority of my waking hours in bed watching TV on the internet. Mostly it’s my stomach, but I’ve also just been really, really tired. On Monday I went into Dr. K who was like, “call me when you feel this bad!” and gave me some good anti-nausea stuff. I know I need to do a better job asking for things like drugs, but the thing is, I hate the idea of taking lots of pills. We’ve been down this road before, internet, remember? Anyway, my stomach is better, but I’m still pretty freakin beat.

How anyone could spend four days in a row not getting out of bed? How would she occupy herself; keep from going bat shit crazy? In an effort to reorient myself with pop culture, I watched the first three seasons of Weeds, and then started in on Heroes. You might wonder why I didn’t watch the fourth season of Weeds… it’s because Weeds sucks. I know, I watched 40 episodes in 3 days. I despise all the characters and the fact that they just make life insanely difficult for themselves. Heroes is a little better, but I think I just hate TV. Speaking of TV, I re-hooked up ours to the bunny ears so we get 5 stations again and tonight I watched about 10 minutes of Girlalicious. It was disgusting, but very soothing. Actually, it’s fairly remarkable that I watch as little TV (Weeds binge aside) as I do being so lame and bed ridden for the last 6 months…

I’ve felt so… scared this last week. Feeling crummy again brings up all sort of unpleasant memories and anxieties. If I feel this bad now, how am I going to react to “Re-Intensification” in a couple weeks? You know I have to go back to the hospital right? I am just now realizing how completely terrifying I find this prospect. I have serious stress about it. I actually have a list of things I’m pretty worried about regarding my next cycle of drugs, but making a list now before anything happens doesn’t seem like it would be that productive. It’s just the unknown, you know?

Tomorrow I’m taking overnight trip to the North Cascades for work. I’m just hoping I find some crazy energy surge to help me make it through… Oh, and did I mention I gave up coffee because it was irritating my stomach? Boo!

But as I like to say, every day I just get richer and thinner. So that’s good.

Monday, June 30, 2008

Let's get Physical!

There’s so much to tell you, dear internet! First of all, I love you. I love you in the complicated way that grown-ups love things.

What have I been up to? Well let’s see. Putting out little fires at work. We’re firemen, Kerry, that’s what we are. I know I should say “fire people” but Fireman is just kind of a sexy word. Speaking of sexy firemen that are women, yesterday was the Seattle Gay Pride Parade and you bet the female firemen marching in the parade were about the sexiest lesbians I’ve seen in a while. I mean, besides all the sexy lesbians that I actually know. Which is a lot of sexy lesbians. What do you want to bet happens when people google “sexy lesbian?” They’ll end up right here! This is not what I thought my post was going to be about…

Um. Moving on. Getting physical. Last weekend I went to a yoga class, but I promised Nathan I wouldn’t be one of those people who talked about yoga a lot. I’m going again tomorrow. I think it’s a better way to spend money than the co-pays at the physical therapist who just had me walk on a treadmill for 20 minutes.


On Saturday I went hiking up in Skykomish with Julian and Beth who are training to climb mountains. I was hesitant to bring my out of shape bones with them, but they found a trail that had a nice lake-y, stopping point mid-way so I didn't have to go as far as them. I brought nectarines and the Amber Spyglass to occupy me and spent a nice 3 hours sitting on the shore of a beautiful alpine lake, enjoying the quiet and the nature. It's my job (sort of) to have high standards when it comes to trail maintenance, but still, trail was a total disaster (spring storms) and we had to bushwhack and clamber in the first mile which was pretty exhausting. I only made it to the 2 mile mark which was the lovely Trout Lake when I decided it was Golden Compass time. I won’t pretend like the hike was burlier than it really was because Julian sometimes reads this and I don’t want him to think I’m a liar or an exaggerator (even though I’m guilty of the latter often enough,) but I was pretty tired after 2 miles. Mostly I felt extremely nauseated. The methotrexate gives me this very subtle baseline nausea that’s not so bad, but combined with “strenuous” hiking, it was kind of pushing it harder than I wanted to push. Bah! Damn you, cancer! I am impatient to be through with you and get my body back!

Yesterday I went to Pride with my friends. It was really fun. I will post pictures because I remembered my camera. And then I remembered to take pictures. Glory be.

What else can I tell you about my week, internet? It was all about work! That’s why I can’t say much… When I was in PGH the other week, I noticed my colleagues running around all crazy-like and I remembered how I had been like them last year. And I thought somewhat condescendingly that they really needed to chill out and have some cancer-perspective (cancerective?) about life… Anyway, it was just that I was in denial of how much work there is and I ran around all week like a crazy person and dreamt about work every night that I didn’t take a Xanex and Ambien combo. Today, I feel like I have time to breath for… the next 20 minutes. Then I’m going to see Dr. K. He was gone last week and I kind of missed him. I never go two weeks without seeing my Oncologist-boo, so it will be good to see him. I’m going to ask him about BRAC-1/2 gene today.

Oh and last Monday I got my period again. That’s 3 in a row, every 28 days. This means that I’ve only missed one since starting chemo which I think means my reproductive system is obviously all systems go. Luckily I got tons of condoms at Pride yesterday, so just in case I ever have sex again I will be prepared. Like that will happen!