Update, Schmupdate

Are y'all still out there? I know it seems like I have given up the blog in light of the chemo thing being over, but it's more like I am just trying to keep my head above water here at school.

Things are... GOOD.

So here is a fun post-chemo update. Yes! There are changes! My weird symptoms that I had gotten so used to are slowly fading away.
-Roaming, EXTREME itches that made me want to claw off sections of skin? GONE
-Constant runny nose? BETTER
-Intense and frequent leg cramps despite my daily banana? LESS FREQUENT
-Inability to balance on one foot due to lack of feeling in my feet?--IMPROVING
-Energy level? BOOSTED. My cardiovascular system has responded well to having more red blood cells and things like riding my bike up a hill or stairmaster are easier in the sense that my pulse doesn't beat as fast to supply oxygen to my cells. Or so I believe.

My stomach and skin are both a little unsure of how to handle my boosted immune system. The initial reaction was FREAK OUT, but I think they're getting used to the extra cells. In particular I think my skin had a hard time with the adjustment and for most of February I felt like I was 17 again. Now I'm just battling dryness.

So yes, it gets better. On Monday I'm going to see a normal doctor and hear their perspective. From an oncologist point of view (which is a little warped) I'm like super healthy, but I'd like to see someone who sees relatively healthy people.

School is crazy busy and I'm trying to be focused, but with perspective. Like, I'm here to learn and not to be the best at anything (FAIL on that count) so as long as I'm learning and I'm trying I should just be happy with that. Personally I'm working on keeping my ego in check whether I'm on the yoga mat or working on an econometrics problem set. It's important to remember that I do these things because they cause JOY and satisfaction and not because I think I am going to be the "best."

Speaking of JOY I saw the Alvin Ailey dance company last night and it was fantastic. Talk about joy. The human body is constantly amazing and beautiful and it was great to watch strong, gorgeous, graceful humans DANCE to music that makes your heart feel good.

I'll be back!

crazy amped, yo

Oh Prednisone. Don't tell Dr K, but I've been cheating... I hate taking you in your full dosage and often I'll skip a day or take a smaller than prescribed dose. I know it's bad so this morning I gave you another chance and damn, you are blowing my mind. 110mg. I am manic like no one's business.

I AM SO HYPER.
Today:
*Goodwill run
*Yoga
*Made breakfast for mom
*Went on errands for work
*Went to work
*Went on a date
*Cleaned our bathroom
*Cleaned the kitchen
*Swept and mopped the kitchen
*Swept and mopped my room
*Swept and mopped the hallway and stairs
*Then I made stir fry and cleaned the kitchen
*I made notes for the garbage, recycle, and compost so everyone would know what went where
*hung out with Andrea
*found places to recycle old prescriptions
*found a place to donate my Hick supplies (saline, hepron)
*put all my good books in the car to sell to Half Price

And my hair looks fabulous. And I have heartburn.

But I just took 1mg klonopin and 10mg of Ambien so SAYONARA!

Too late for Swine Flu jokes?

Week from Hell, round 1=over. Week from Hell, round 2=nagging at the back of my mind and causing anxiety. It is now the weekend. I just awoke from a 5 hour, klonopin induced nap on a Saturday afternoon. I have no plans to leave my house until Monday morning. Even though it would dramatically improve my quality of life next week to work through this weekend, I simply cannot. It is time to rest.

This week was interesting because I knew how much I was hurting my body by working long, high stress days. I knew it was making this awful cold about 10 millions times worse. But there was no. Way. Out. I simply have so fucking much work it's impossible. And no. There are not people to delegate to because that would require taking a lot of time to explain complex systems. Stress makes me paranoid. I know it's bad--way bad. It fucks up your immune system, your digestive system, your emotional equilibrium, and I really believe it's damaging on a cellular level. I believe stress is like poison in my body. And it makes me feel grosser than the swine flu that is currently taken residence.

My health update is that despite the green goo coming out of my nose, eyes, and throat, Dr K pronounced me healthy enough to do my full cycle of chemo on Thursday night. He used his fancy doctor flashlight and said there was nothing bacterial going on in my throat and nose. Viruses--they will be the downfall of our species! I feel like absolute ass.

My personal life is taking a hard hit due to work being so crappy. I a) work all the time, b) am too tired to do a lot of stuff when I'm not working, c) rarely have the energy to reach out and talk to people who are on my social periphery and therefor look like an aloof jack ass, and d) am that annoying person who just bitches endlessly about how fucked and miserable her job is when you do finally get me in a social context. I suck. My social life sucks. My friends are still really cool.

There is a light at the end of the tunnel. Week from Hell, round 2 should conclude our Weeks from Hell for the month of June. This post is not about sympathy or people finding solutions to my problems. It's is about the reality of what's going on in my life. It's about my post-cancer answers to life post-cancer. It's about lessons learned and forgotten and a realignment of values. It's about trying to do it right, to have it all, and the bumps along the way. It's about blogging stoned on anti-anxiety drugs.

O e t t i n g e r, out.

Update 1: Prednisone

5 days a month is actually turning out to be pretty OK. I have 5 nutty, but extremely productive days a month and the worst of the side effects (horrible heart burn, total OCD insanity, sleeplessness, despondent withdrawal) are all minimized by the brevity of the situation. This round of Pred resulted in these excellent results:

-Taxes: filed

-FAFSA: filed

-Shopping: 2 new sweaters, one new bra

-Perfume bottle: fixed

-Lamb/tomato/tumeric red lentils: perfected

-Gym: joined

-Bills: transferred to roommates

-Laundry: 4 loads

-Mansion Lease: signed

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.

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.

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.

Where does the time go?

Really? It's been more than a week? Sheesh. Things have been busy and I was out of town for a while for work.

In Cancer News:
Wednesday night I was an idiot and used SCISSORS to cut the tape off my Hickman. Then I cut my Hickman line. BIG FUCK UP. But thankfully you can repair Hickmans and I watched in terror and guilt as one of my precious lumens was amputated and then replaced. I feel like the biggest asshole, by the way, for doing this. It was so stupid and I compromised my health seriously (cutting a sterile line to my heart? nice one, JLO) and made unnecessary drama in an already busy week. I'm in bed so I don't want to get alllll the way up and get my camera and take a picture, but soon dear readers, soon.

So at this work thing I met a lot of new people and despite the tube coming out of my chest I had numerous conversations with folks where they asked me how I got my head to stay so clean shaven. Drugs, man. Drugs.

I think I might have also permanently put off a co worker who I have been trying to connect with for the last two years by being overly irreverent about cancer. Whatever, I'm the one with leukemia here. It means I do what I want. I say what I want. Yo.

Non Cancer News:
I very much enjoyed my time away from Seattle at my work-y type thing. Even though it high lighted all the things I hate about where I work it also high lighted all the things I like about where I work. And I contra danced which is hard when you're as gimpy as I am these days, but I will redeem myself in one year's time.

Now it's Monday, I have lost all ability to articulate, and I'm taking some days off because I just worked crazy a lot AND Nathan3 is visiting for a few days.

Intensification

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

The answer to both of those is: Crappy.

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

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

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

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

Sleep-good, pee cup engineering-bad

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

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

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

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

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

Love doesn't have to be a lie

I'm feeling a little Tragic tonight. I know it's my body crashing off its daily fix of Pred/crack. I think it did a lot to obscure some of my Chemo side effects so today was a little rough. Physically it was a low-point since my second day in the hospital.

Here are some weird side effects:
My fingers keep going numb
My mouth tastes like I burned all of my taste buds
I have the most insane gas
I am SO TIRED

I think the burly lentils I made yesterday morning might have a little to do with the intestinal distress...

I have visitors! Nathan and Leslie are visiting from Manhattan and Eugene respectively. It is so nice to see them and you would think I get tired of talking about me and my Cancer, but nope! So far it really helps to process where I am with people I care about and trust--so that is good! We ate! I still think about food pretty much ALL the time so let me tell you about the amazing food I had today!
--Veggie Pho! from Pho Hei Yen
--Grilled Cheese Sandwich from Geraldine's
Due to whatever whatever, pho and cheese sandwiches both make me feel a lot better when my stomach is killing me. Weird, huh? Even weirder: my landlord was at BOTH places at BOTH lunch and dinner. Since I have cancer I can be rude and ignore people though!

Yesterday I got my head shaved for reals by a barber on Beacon Hill. I'd like to give a special shout out to Abraham and Kicks and Cuts for the complimentary buzz. Not only did he not charge me, he made me feel really good and normal about being a chubby white girl in a barber shop on Beacon Hill to get my head shaved because I have cancer. The whole scene was kind of bizarre which is what I suppose I was going for... but anyway, it was OK. As for the look--not so hot. I HATE being bald. Now I know. Tomorrow I am going to look for a wig. While I was sitting there a woman randomly popped her head in to ask about something and looked at me and was like "I'm a 2-time breast cancer survivor! You're beautiful! You can do it!" Life has been kind to me like that a lot lately.