When you're in hell, just keep going

Dramatic, much? That's some advice my crazy pants ex boyfriend gave me in college. God love him, that was one of the wisest, most obnoxious things he ever said.

Tuesday I went back to Alta Bates for another stab (haha) at chemo. My nurse, Valarian ("he's Fillipino...they're really good at finding veins...") hit the vein on the first try with the big needle. Huzzah. We then waited for 2 hours for the pharmacy to mix 2mg of Vincristine. You win some, you lose some. Nurse V also seemed to have read the Vinc instructions and pushed it over the correct amount of time. AB: leaving on a high note.

I called Dr. K who said he was sorry that things were rough but that they missed me and would be happy to see me in Nov/Dec/Jan. Our compromise (darn you, Dr. K) is that I have to go back to weekly CBCs (argh!) and I will do them drop in style at Alta Bates. My nurse prac there will fax the CBC/Chem panel to Dr. K. Infusions will be done in Seattle.

The last two weeks were a little rough. School picked up which wasn't too overwhelming, but I faced another round of "adjustment" mental and physical style. The whole thing culminated in public tears on Wednesday morning where I felt sooooo sorry for myself. Here I am, at this amazing graduate program taking all these cool classes that aren't really that demanding and my life is soooo hard because I'm plagued by all sorts of existential questions like "what am I doing with my life?" And "why is that the right thing to do?" I wanted to call my mom because my adviser had been mean to me, but I was like, "Jessie, get a grip. You did not enjoy hearing about other people's problems when you were in treatment."

So. I smoked a cigarette, drank 20 oz of diet coke, and got Real. It's gonna be fine. And since that moment, it has been fine. And 5 years ago that would have been 3 cigarettes and like 44oz of diet coke... so that's an improvement? I'm here to learn and I'm learning. I've taken out loans and I'll pay them back. I like people in my program and they like me. I only have 3-4 chemo infusions left. If this week sucks, next week can be better. It's fine.

My plan for the week/end is to just get back into a healthy groove. Listen to the new Avett Bros album. Clean my room, yoga, make healthy food, drink in limited quantities, balance social activity with time alone, call people at home to say heyyyyy.

In the ingenious words of Micheal Franti,

The future's comin' on like a bomb
The whole worlds rockin' and the beat goes on
Ready or not we're bringing it on
The whole world's rockin' and the beat goes on

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.

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.

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.

Bonfire of the Vanities

One of my last surviving vanities in the chemotherapy experience is my fingernails. I have nice hands. Nice nails. I don’t bite them. They grow out and I file them and I am very vain about their appearance. I rarely travel without an emery board. As promised, my nails have weakened in the last month and are now breaking. But they’re breaking low down on the nail—like on the bed. This is painful AND unsightly. I’m pissed. I feel pretty done with this whole experience lately. If I had lymphoma I’d be almost done by now! But no… And sitting through the rest of this interim maintenance period is killing me. I just want to get to the hard stuff so it can be over and I can start living my life as normally as possible. Does that sound unreasonable to you?

Lately I’ve been more afraid of cancer. This IV methotrexate isn’t bad, but it’s enough of a reminder that something is wrong that I’m dealing with another layer of acceptance. I have to really focus on my mantra of living every day for itself and not trying to project into the future where I will/won’t be alive. I realize this sounds incredibly melodramatic, but you don’t know—you just don’t. Some people’s bodies just want to die.

I’m also thinking a lot lately about breast cancer. There’s something about it that is pulling me in—maybe that it’s so female-centric, but I feel like this connection with the breast cancer folks. First of all, they have cancer, and secondly there’s something about the movement that feels more body-oriented. I don’t know. My mom’s family has a strong history of breast cancer. My aunt died a year ago of breast cancer (she was treated at Swedish as well so everyone recognizes our last name) and both my grandmother and her sister had it. There’s now a test you can do to find out if you have this gene… if you do, you have like an 87% of developing breast cancer. Do I want to be tested for this gene? Would I have the prophylactic double mastectomy? Could I deal with doing this again? Could I please stop obsessing about this? Maybe it’s time to start taking the Xanex.

What it’s really time for is work. I need to go to work. But like I said, I’m distracted. And all I want to do is go home to my distraction which is the third Golden Compass book. Annie P brought by a huge box of books the other week and there’s a lot good stuff in there. I read a good cancer narrative (about a breast cancer survivor) called The Red Devil and then yesterday when I was feeling a panic about not having enough to do with myself, I found the Amber Spy Glass. I can’t tell you how much of a sense of purpose the book gave. It was a reason to go back to bed and stay there which turned out to be very important because I just read, napped, and drank water. Fuck you, cold. I will kill you with my inactivity!

Alright. That’s enough for today.

"blah blah blah"

I just deleted my last post because it was a little maudlin. This weekend I found out my cat died, it’s the anniversary of my best friend’s mom dying, and life can just be kind of stupid sometime. Blah, blah, blah.

This morning I decided that listening to these three songs on repeat was just going to make me feel like dying over and over:

Aimee Mann “Invisible Ink”
Peter Gabriel “Book of Love”
Nada Surf “Blond on Blond”

I know: Ridiculous.

So I decided to make a new mix. I have listened to Xtina sing “Fighter” about 10 times already today. It makes me want to hit people—but in an empowered way.

Say you love me (long, emotional post)

The shit sort of feels like it’s hitting the fan today. I went to meet with the radiologist who threw a lot of confusing information at me in regards to what the hell is actually wrong with me and how that relates to my treatment. She began by saying that my case could just as easily be treated/called a Lymphoma (a treatment schedule that would shave chemo by about EIGHTEEN MONTHS) because of the lack of cancer in my blood/marrow. Then she dropped the bomb that she was still deciding whether she would just radiate my tumor and its lymph node (what I was expecting) or give me full cranial (brain) radiation as prophylaxis against the cancer spreading to my spinal fluid. The full cranial has all sorts of scary possible side effects and it seems like my chemo ALREADY errs heavily on the conservative side (the detriment of my quality of life) and I just sort of had this breaking moment where I was like “no more way too conservative courses of treatment! I have another 70 years to live—do NOT fuck with my short term memory or ability to multitask…”

Here is the deal:
I had a tumor—it had malignant white cells
I have no cancer in my blood
I have no cancer in my bone marrow
I have no cancer in my spinal fluid
I have no other tumors

Apparently, I could just as easily be on a treatment course for Lymphoblastic Lymphoma as Lymphoblastic (same as Lymphocytic) Leukemia. What the fucking hell.

If you didn’t know, I hate that I have cancer. I hate chemotherapy and what it’s doing to my body and lately, my metabolism. There is nothing in my life so far that I would do over, or have be different—except this.

The good thing about this radiologist (who said a bunch of scary radiation stuff) was that she was super excited about my prognosis. She was like “wow! This is great! It’s amazing that your blood, bone marrow and spinal fluid are all normal! You are going to be fine!”

I am also feeling incredibly surly at work. I am beginning to hate it. But I have nothing else structured going on and I’m terrified of free time after the hospital. I have a few legitimate things to be angry about (same old, same old) but a lot of the nastiness I’m spewing is pure spite and frustration and it’s unfair and I NEED to stop talking shit.

The weather is so cold. Our house is freezing. It’s going to rain all next week. Fuck you, climate change.

And bills! This winter it cost a bitch and a half to heat the Mansion. However, at least these large bills are split 7 ways. You know what isn’t split 7 ways? My cancer-y bills. I’m sure they add up to less than 1% of what my treatment is costing, but that’s still a lot for me. A pathology test here, a non-network infectious disease specialist (who I was too delirious to have any control over) there… My entire tax refund is gone. And here the major stress: the billing dept for my primary care doc, my insurance and I have all been going back and forth since December over a series of charges that insurance should cover—as long as PacMed (the clinic) bills them correctly. Every time PacMed would send me a bill, I would patiently call and explain to them what they needed to do to get paid and every time they said “Oh, we’ll send this to the insurance specialist and get back to you…” So I’m on top of things and I am waiting for them to “get back to me” but instead they SEND MY BILL TO COLLECTIONS. WHAT THE FUCK.

Never go to Pacific Medical Centers—they are a bunch of unprofessional, cheating, lazy, careless ASS HOLES.

So once the bill is in collections you have no choice but to pay. Pay now. Or they take a big dump on your credit report and also charge you 12% a year on the bill. So that was $500 down the drain. It’s up to me now to wade through insurance BS to reclaim this money. Do I have the time and emotional energy and guts to call my insurance company? No. I’m scared. I don’t want them to look at my file. I’ve wracked up about 130K in bills so far and I’m terrified that someday, for some reason, they will just stop paying. So I try not to interact with them at all. I realize this is stupid.

And those are most of the reasons that I am feeling a little overwhelmed tonight.

Back

And just like that it was over. I left the hospital yesterday morning and have been trying to acclimate back to real life.

These last 18 days took a lot out of me physically and emotionally. I’m not sure I realized at the time quite how sick I was and how hard it was on my body to run high temperatures for days at a time. Physically, I feel so weak and tired. I lost an amazing amount of muscle mass in my legs. My pants are hanging off me, but it doesn’t look good AND I can’t walk up a flight of stairs without getting really tired. This is the stupidest way to lose weight ever, by the way.

As for my emotional state, I feel wasted. The hospital really brought me down in ways I can’t explain. It was torture. My spirit feels weak which is so much harder to deal with than weak legs. I feel differently about this state of infirmary now. I am a Real Sick Person.

I don’t expect to be Sick for much longer. Being out of the hosp and back at work should bring my endorphins back. If not, my mom, the social worker, and Dr. K have all been making noises about anti depressants and how chemically, this experience really whacked out my brain and I might need some help normalizing… As for my legs, we all know my massive hams love nothing more than to gain muscle mass at alarming speed… it will just be hard work. I hate having to go back to zero.

Today I am celebrating that I am work and I have been here since 9am. It feels so good to have things to do and structure to my day.

I'm sorry that I've been so absent from this blog but today is the 2 and 1/2 week mark for me in the hospital.

The hospital is terrible. I really really really hate it here. It has done a fine job of breaking my indomitable spirit and causing what people keep telling me is, "depression." Apparently, I've never been really depressed before. Thanks, Hosp.

The good news: my counts are finally up. I want to leave today. Or I would settle for tomorrow. They're pulling me off all my anti biotics to see how my systems fares on its own.

How did we get here? No doubt the most disturbing part of this month has been the radical turn around from Superwoman to nosediving hard and landing in the H. Why was this treatment cycle so much worse? Why am I such a pansy? Turns out I'm one of .03% of people who is missing an enzyme in my blood that helps metabolize this drug I was taking: 6-MP. Without said enzyme it was like I was taking 10X the chemo dose that I needed. So that's what crushed my counts and for so long. Shout out to Dr. K for figuring that out before I start another 70-day cycle of 6-MP.

That's all for now because most of my thoughts are pretty whiney and I've been trapped in a white box for 2 and 1/2 weeks with little stimulus.

All I need

I just need some white blood cells. I can't leave until I have them. I am getting really miserable and desperate trapped here. Please, please, please think good things for my WBCs. I know you probably already are, but just in case... my sanity is on the line.

I'm alive

I realize it's been about a week which is terribly uncharacteristic of me.

I'm still in the hospital. It's been a rough go. I won't go into details now, but the bottom line is, please think very good thoughts for my white blood cells.

The good is that I am better than I was. Or something. I'm aiming to get out of here Wednesday?

Set backs

Well, well, well. What a humbling week!

Yesterday afternoon I checked BACK into the H because Friday night's test results suggest I have a staph infection in my blood. Yarg. This is AFTER I tried to convince everyone at work that I was doing a great job taking care of myself and that I was on the mend... ready to hit it! Yarg. Again.

So the deal-io is that I'll stay here until my blood cultures re-grow so we know what we're dealing with. There is a small chance nothing is in my blood and that the blood from Friday was contaminated... that's my hope. Anyhoo, in the mean time they gave me a serious dose of anti-biotics which I reacted to not well. My head got all hot and red and itchy and then later on I threw up a whole lot. Let me tell you, a great St. Patrick's Day. I sincerely hope yours was better. So between the Adivan and the Benadryl IV and the fact that I'm still pretty freakin dehydrated and anemic (more anemic today--Hematocrit is at 18!) I am finally slowing down and sleeping. And I get 4 more units of blood.

The good news of yesterday is that the UW called to congratulate me on my acceptance to the class of 2008!