Monday, September 14, 2009

small milestones

You're darn right today is the one year anniversary of finishing up intensive treatment! That means that for the last year my body has mostly been allowed to heal! Let's celebrate!
9/14/09:The hair is the most obvious difference, but I've also put on about 10-12 lbs of muscle since taking that first picture... and I don't have fatally low levels of platelets! So that's an improvement.

Today is good. Today I turned in my first grad school assignments, I lifted weights, I rode up the big hill by school twice, and now I'm at home and I'm going to read about French and German war strategy and start on my law paper. For fun I might read about sales tax in Oregon. I say NO to atrophed muscles, NO to baldness, NO to chemo brain, and NO to non clotting blood!

And the best, best, best thing about today? That's right: SEASON PREMIERE OF GOSSIP GIRL!!! Don't judge, just love.

Sunday, September 13, 2009

Treatment in Berkeley: a Rant

I had my first chemo infusion at Alta Bates on Friday. It was terrible. The whole thing took over 3 hours which is absolutely fucking ridiculous when you consider that even if you push the Vincristine at the rate it should be pushed (1 mg/minute) the actual drug only takes 2 minutes to administer. Ironically, the nurse who pushed the Vnc just pushed it--in like 15 seconds.

So pretty much the litany of sins are as follows:
-treatment room is dark, has no natural light, and cramped
-IV was put in my wrist which is the most excruciating place to start an IV
-they didn't use litacaine (a Swedish practice) to numb the IV area
-despite my telling them that I can't use large, blue IV needles and that I really need the yellow, pediatric sized needle, they attempted my first vein with the blue. It fucking hurt and didn't work. I told you so.
-everyone kept asking me, the patient, what my treatment protocol was, if i had ever had chemo before (wtf?), what kind of cancer I had, if I had ever had Vincristine before, if I'd ever had an IV before, why I didn't have a port etc. and the thing is all of those answers are IN MY FUCKING CHART. Yes, I've fucking had Vincristine at least one a month for the last fucking year and a half. Yes, I have had an IV before and you should believe me when I tell you what veins are good. Yes, I've had chemo before. Oh My God.
-then the pharmacist came by and re-asked all those questions, and then asked for a list of the drugs I was on and what doses (again, in my chart right next to her) and instead of confirming she just wrote down what I told her and printed it out.
-then the nurse practitioner came by and looked at the print out (that I had dictated) and proceeded to write my rxs based on that--not my chart.
-she then told me that she wants to monitor my blood counts because she just doesn't know how I'll do on the Vincristine and I was like "you have my weekly blood counts from the last year in my chart... and I've been on the same drugs" and she literally was like, "I don't have time to read your chart."
-this WHOLE time I have a plastic tube in my wrist vein and it is SO UNCOMFORTABLE and they won't take it out because they like to "hydrate people." This is after I have had fucking 5 liters of water already to get my veins ready for the fucking IV. They did not listen to that either.
-when the nurse finally took the IV out, instead of removing all the tape and then carefully pulling the IV out, she just ripped. She ripped it all out at once. And it bled like fucking crazy and hurt a lot.
Conclusion: no one could be bothered to read my chart OR listen to me so I'm not really sure how any information got through to them. This is pretty simple stuff (my treatment at this point) but if I weren't totally on it, if I were say, a little old lady who was totally confused (see them all the time at cancer centers) what the hell would have happened? I'm all about being an empowered patient, but this was totally ridiculous.

Pictorial evidence:
12 down, 5 to go. We're in the homestretch!

Tuesday, September 08, 2009

oh, yeah one more thing

I forgot to mention that not only am I totally into ME being alive, I am also totally supportive and into my many friends who have endured long, crazy, painful journeys as they fight for their lives. Clinical trials, radical intervention, absolutely mind numbingly awful chemo treatments... God damn, the will to live is amazing. And admirable. And they do it with so much grace, perspective, hope, and valiance. So... I just want that on record.

Mmmm Koolaid

Today my copy of Snow Leopard showed up in the mail! Shiny! New! Operating system!

But back to what everyone likes to read about: CANCER!!!

Last Tuesday I was in a FOUL mood because for the first time in many moons I was kept waiting unnecessarily (for a fucking hour and a half) for oncological med professionals with no respect for patient schedules ("oh... I guess we didn't really need to see you... nope, nothing really to talk about... sorry about the wait!") As it stands Alta Bates is getting a big fat FAIL from Jessie. There's no way in hell I'm going doctor shopping at the moment because I don't have time. And I don't have time to get treatment anywhere but RIGHT next to campus (Alta Bates' only plus thus far) so I'm gonna make due for the next 6 months, but dammit, I'm going to be a bitch about it. If I were to detect something actually wrong, I'll just head back up to Swedish and Dr K.

You probably also want to hear my wisdom on Healthcare Reform on the eve of Obama's speech? Of course! Thanks, Facebook for the inspirational quote!

"No one should die because they can't afford health insurance, no one should go broke because they get sick."

Just to be clear: I'm in favor of a single payer, public option. I want to pay for health insurance, but no one will sell it to me. My personal drama is summarized here, but in re reading that post, what I thought was more interesting was not that I'm in deep shit if things don't change (ubiquitous) but the more interesting question of what it means to deny people care/treatment and the will of the patient to fight.

The will to live. On one hand, it's like, "duh, " but on the other hand, I'm continuously humbled by my instinct to do whatever it took to save my life. Not that it was a particularly impressive action--it's more that when my well being was threatened in such a way (cancer) I did things to save myself that strayed from my general principles about The Way the World Should Work. And let's be Real, I wasn't even that threatened!

Philosophically, I am not a fan of intervention. I mean, antibiotics, sure, but I have kind of deep rooted, ass hole-y, Darwin-y, cave man-y instinct that says "when your number's up, it's up." Despite that feeling, when I got sick I was like "Drugs. Now." and I was thrilled to stick it to my insurance company. Finally! Those ass holes paid out about $500K last year. And they gave it to good things like my doctor and my hospital and more evil things like the pharma companies and all those other capitalist pigs who get rich on people suffering...

So anyway, in one of my classes we were talking about how if we give everyone access to the kind of research and treatment that comes with Good Insurance it really is going to be freaking expensive, but you just can't tell people that they can't have something that could save them. People will do outrageous things for themselves and people they love to save them. It's amazing.

Assuming that what we're trying to do is the MOST good for the MOST people, do we spend a shit ton on healthcare and lower spending in other areas? Do we raise everyone's taxes? Do we raise some peoples' taxes? Does the government nationalize the pharma industry? Dude, someone has to pay for this.

When I really think about that Facebook statement what it's saying is that people shouldn't have to bear the costs of their own healthcare which is kind of ridiculous. I mean, we've developed really expensive technology and while there are a bunch of people getting outrageously wealthy because of it even if we were to confiscate their bajillions, Healthcare would STILL be expensive. So someone still has to pay... and if it's not the patients it's... someone else? Other, non-sick people? Which brings me to the part that seems to make everyone really uncomfortable about all angles of this: it's not Fair.

It's Not Fair how some people get sick and some people are healthy and some people treat their bodies like crap and We have to pay for it and some people are soooo healthy and they get some tragic chronic illness and bottom line, it's Not Fair.

So without thinking too hard about who should pay for healthcare and how much they should pay and how much people should REALLY be charging, I think the first thing people need to let go of (on either side) is that life is Fair or that somehow things should be Fair.

Sick people need to get over the fact that it's Not Fair that they got sick and will have to bear not just financial pains, but fucking huge life disruptions, ignorance, inconvenience, TRAGEDY etc. It's also not fair that some people are born in abject poverty in war torn countries. There are 8 year old prostitutes! Horrible things happen to wonderful people every day. And it SUCKS.

But moreover, not sick/rich/insured/conservative ass hole republican people need to get over that it's Not Fair that they're being asked to contribute to a system that will make everyone better off. It's not really fair that they're rich, insured, or healthy. Most of them have done little in their lives to deserve their situation relative to their inherited privilege (genes, family situation, country of birth, childhood health habits, exposure to toxins) so screw them and their entitled belief in "fairness."

I realize this is not the most air tight, coherent, or even logical thing I've ever written but I really need to work on my micro econ homework.