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.

Leukemia is my bitch

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

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

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

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

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

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

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

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

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

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

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.

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?

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.

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.

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:

Wake up America

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.

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.

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!

"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...