Thursday, January 24, 2013

Orangeypinealaide

Oh my god, I'm still shaving my armpits, it's exasperating every time I catch myself doing it. I’m just not myself these days because I’m driving a white, Chevy Malibu while Sparky’s in the shop. I miss my pretty blue baby so much I've disturbingly begun referring to her as Princess in my head and I’m scared I’m going to slip up in front of the boys who will never let me live that down. The Malibu is a mobile monument to bad design, tacky, cheap materials, and rampant beigeism, I can’t wait to return it.

Many doctor’s in my week, first I got a call from my hepatologist letting me know that my elevated liver function tests have finally left their plateau and gone down a little and she thinks that will be the beginning of a positive trend and she says these things in just the right, encouraging tone of voice. The day before, I had a blood draw done to check the liver enzymes and the cancer marker for my oncologist. Since I’ve decided that the elevated cancer marker has to be linked to the liver problems, I was scared to get the results. I decided to just bury my head in the sand and not call the onco for the results, afraid, very afraid, finally deciding to go the denial route. But then, shockingly, he deigned to call me, to say that his tests too, revealed the liver function going down, and the cancer marker going down a bit as well... not at normal yet, but went down by a decent amount. I couldn’t, however, get him to say anything along the lines of “that’s great, I agree, I think your screwy liver is affecting the cancer marker because that’s a common cause.” And it is, a common cause, that’s what I’ve read, but he was emotionless and said “well it’s certainly not a bad thing, and we’ll certainly know more after your next test in a month.” I really started to pester him like a child, “come on, tell me this is a good thing”... I don’t know why I can’t find a cheerleader doctor.

Which brings me to the T.V. show Parenthood. Not a show I’ve ever liked much, but I’ve been watching it this season, because the breast cancer storyline was too morbidly tantalizing. If I disliked this show before, I really dislike it now. Watching this perfect, gorgeous, fun, extended family on their Berkeley, California compound while no one seems to work much, is depressing because well, I don’t get to live there or be in the big perfect family. The depiction of Christina’s doctor just drives me over the ledge. First off, your surgeon, is not also your oncologist and no doctor anywhere, especially oncologists or surgeons, give out their home phone number to patients, I consider myself lucky if I get a call back from the office within a few days. Real cancer patients have to run back and forth between surgeons, oncologists, nurses, primary care physicians and other specialists who all seem to not speak with one another. No one owns your case, they do their part in a vacuum and the patient, in a haze has to somehow coordinate it all. And then comes the PET scan. Christina’s doctor insists she have a PET scan when she completes treatment to make sure she’s cancer free. I have begged every medical professional I’ve come in contact with for a PET scan for that very reason and the only thing they’re united in is their steadfast refusal. “We just don’t do those, they’re not helpful, studies show they don’t change anyone’s outcome.” So freaking what? they give you peace of mind for the moment... they let you live in denial until something pops up. So I don’t get one, but fictional Christina sure does and then a trip to Hawaii because chemo and rads doesn’t make her hyper sun-sensitive like us non-fictional people. Yeah, I could go on and on, but I'll skip the part about no one actually talking to each other or getting to know one another's names at chemo.

I’m working my way through the vast list of items I have to provide to Dana Farber before my consult in February. Records, reports, scans, films, parrafin blocks of god knows what, actual slides of biopsies and tumor samples, it’s overwhelming, many, many phone calls are involved. I’d be picking things up this week, but it’s too darned cold to do extra errands. I’m really curious what it will be like up there... how it will all compare to how things are set up at the facility I’ve been at and a very lovely friend has readily agreed to come up with me so I don’t just wander around the parking lot in circles and remember to ask questions.

If I wasn’t already in love with all things Obama, the girls and their grandma in their jewel-toned outfits would do it. I loved the inaugural speech, loved, loved, loved it and Michelle’s eyeroll was the most priceless, thing I’ve ever seen. And if that wasn’t enough, Hilary telling the Senators Dopey-pants what they could do with it was beautiful. That hearing beyond anything else I’ve seen was the sound of that oft mentioned glass ceiling shattering.

Today, the RI house is voting on gay marriage. We are the only New England state not to have it, and the tall one is on duty as a Page today, so he’ll get to be at the hearings. He’s worried that it will go really late and he won’t get home in time to review for his AP bio mid-term tomorrow. I told him if he gets home really late I’d write a note and let him stay home and take it on Monday. He’s actually been studying these days and I think it’s way cool he’s paging at the State House, and I want him to do well on his test. Maybe I make his life too easy, I probably do, but I can’t seem to help it.

I’ve started buying orange/pineapple juice instead of plain orange and J calls it Orangeypinealaide. Need I even offer commentary on that? Except to say, you’re going to have a good day when it starts with a little imp yelping, Yay, Orangeypinealaide. I wish my oncologist could do for me what Orangeypinalaide does.

4 comments:

  1. Ha! I was wondering if you'd seen Parenthood. I was wondering if you'd had that "all clear for now" scan.

    It is a terrible show. But I love it. The girl who doesn't brush her hair is always crying; the wine is obviously juice; the coffee cups they're actively drinking from are visibly empty; Xtina should have lost her eyebrows and lashes or at least looked more sick than merely bald; everyone wears a bra and false eyelashes to bed;...but I watch every episode.

    We've been having orangemangolaide. I'm glad to know the correct name!

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  2. actually, i didn't lose my eyebrows first time i lost my hair, only the second. BUT, her bald head is HUGE because it's a cap with all her hair under it... she looks more like a big-headed alien than a cancer patient. and i noticed the empty coffee cups... i did skip the episode where i think she makes a video for her kids because she thinks she's dying... that one hit's too close to home because that video IS my worst fear. seriously though... don't you want a compound in the berkeley hills too?

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  3. Rey reporting for cheerleading duty: RIGHTEOUS that your liver enzyme and cancer markers went down!!!!!!

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  4. This post is awesome and so are you. My dad does have occasional scans post-prostate cancer. So far it's only shown when he had a sinus infection.

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