Friday, October 16, 2009

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

Saturday, October 10, 2009

Firing your chemo team?

I don't know what to do.

I went to Alta Bates yesterday for my 5th to last Vincristine infusion. After 5 attempts they gave up on starting an IV and sent me home. I'll try again on Tuesday. However, I was there for over 2 hours. I did get a flu shot so it wasn't a complete loss.

The nurses seem convinced that my veins are just too small, and at this point all the good ones have been too fucked up by so many other attempts (and successes). Vincristine will really mess up a good vein--it's nasty stuff. However, this same nursing team also made a few strategic errors in which veins they poked and which IV needles they used. They were unsuccessful at drawing blood from the anacubital (the big veins in your elbow pit) so I'm not sure how much confidence I have in the general skill level.

The thing with really toxic chemo drugs is that you worry about them "leaking" into other tissue if the IV needle has punctured the vein in a few places. As a result, once you hit a vein high up (like in the elbow where they all meet) that arm is done for the day. Also, if you get in, but not good enough, it's too dangerous to infuse. Wrists and elbows, where veins tend to be more visible are too risky for chemo because if it were to leak the damage to the joint could be devastating to utility. This limits where you can get poked. I got poked in all possible places.

It's the little things: refusing to use a pediatric size needle even when I tell them my vein are too small for regular sized needles, the callous IV rip out from last time which resulted in the biggest IV bruise I've ever had, this month's blood draw failure... While everyone is nice, there seems to be a chaotic culture reigning in the treatment room and bad communication everywhere. As a systems observer, I am more appreciative now of how on it the Swedish team is. There is a huge qualitative difference based just on operating practices.

Anyway. I don't know what to do. Obviously try again on Tuesday... but everyone was making noise about having a port put in. I refuse. I am being a good sport about all of this: 2 years of incredibly conservative treatment, subjecting my body to heinous chemicals, but I am not going to have surgery to have PORT put back in my chest. No. 5 IVs.

I think it might be easiest to just start flying back to Seattle. Getting a new treatment team at Stanford or UCSF would be a pain. All the extra appointments... By the time I commute to either of those hospitals and go through all the introductory crap... I'm calling Dr. K on Monday.

Tuesday, October 06, 2009

Still here

Briefly:

#1) Tyra Banks on Gossip Girl. Glorious. Over acting, wigs, wig changes. Hilary Duff. Who knew. Lizzie McGuire infinitely more suited for Dan than Harriet the Spy.

#2) American Splendor. I realize the movie came out in 2003 but it was fabulous. Am now interested in reading Our Cancer Year by Harvey and Joyce...

This post is kind of epitomizing my life now. I could choose to blog about the things I'm learning which are really interesting and at times controversial (just like I could choose to be doing my homework instead of watching internet TV in my underwear and drinking coffee at 2pm). I could fill this blog with well crafted thoughts on healthcare, social services etc... But for some reason I'm not.

Anyway, I still get like 14 hits a day because people everywhere (all over the world!) are googling "sexy topics" and clicking on Inertia. My cancer has been mostly quiet lately. The weather is changing and my neuropathy is getting worse. I am ready to be done with treatment and resentful and bitchy about the fact that it isn't over. I miss Dr K, Swedish, my nurses, Chris and Michael, Billy and Yusef, and the guys in the parking garage who would propose to me. Friday is treatment #6 in the countdown.

My insurance company continues to pay, I continue to suppress my immune system, my hair is growing back, and it feels like all around me folks are getting bad news about Cancer. It's a weird place to be.

This last month I was at a yoga class where the theme was the harvest. This is fall. We are harvesting what we have reaped over the last year. A couple weeks ago was Yom Kippur and Rosh Ha Shannah--the turnover of the Jewish year. All of this stuff asks us to consider the year behind us and the year I'm reviewing was excellent--for me. It was full of positive momentum: feeling better almost every day, getting into Berkeley, having a wild 6 months of partying in Seattle, saying goodbye to my job and Community, and moving on to another situation full of Promise... It's like the happy montage at the end of the movie.

I'm trying to celebrate and acknowledge how wonderful this is and balance it with the tragedy that defines the year of other people. It's not just cancer, but unemployment, the failure of our legislature to actually look out for constituents, the hurtling of our culture into End Times... Anyway. I find myself using the same coping mechanism I discovered with in treatment: realizing that life is transitory, mysterious, ever changing, and still wonderful. Believing in transformation, challenging myself to be open to what can be good...

Once, in a yin yoga class, my teacher Janell gave me this meditation to help me focus on holding a pose for a long time while remaining present:
In Breath: This is the perfect moment
Out Breath: This is the only moment