because we're all voyeurs, after all (mayalin) wrote,
because we're all voyeurs, after all
mayalin

No longer a chemotherapy infusion virgin

So, let me tell you something that impressed me about the infusion center where I spent my day yesterday. The nurse easily got my IV in on the first try and I don't even have a bruise. This is remarkable for me, and gave me a lot of respect for her skill. It's not tender, either. The nurse was very upbeat and positive and clued-in to me and smiled and laughed a lot. Really, it was a good experience. At one point I heard her refer to Jonathan as my "math major husband." So Jonathan and I laughed at that for awhile since he is an engineer and we're not married. In any case, if it weren't for the numbers of crazy drugs, it would have been a nice, if boring day. They even gave us cookies and beverages. Here are the drugs I got in my vein: benadryl, an anti-emetic whose name I forget, Avastin the anti-angiogenesis medication for which the insurance generously paid, Camptosar the chemotherapy itself, Atropine for belly pain, Ativan for nausea. Muy generoso. Next time I need to think up more complaints so they'll give me more. Just kiddin, but who knows what I'll need? If I need it, I'll take it.
I'm not happy *in any way* about being on infusion chemotherapy. I'm making the most out of a sad situation. The best-case situation here is that this will go on indefinitely. What does that mean, really? (mental note to self--ask neuro-oncologist what that means, realistically.) The nurse said that as long as the meds prevent growth, they are considered to be effective. And if we get shrinkage, that's gravy. So, I'm hoping that right now the meds are shooting all their guns at the growth, which I like to call the marshmallow creme. Which is what it looks like to me on the MRI--white and swirly. Not sweet and confection-like. I'm not a fan of eating marshmallow creme, unless it's mixed into other tastier ingredients.
When I think about my situation, though, it really bums me out.
Scenario 1: We control it with these drugs and I spend the rest of my life on every-other week chemo. Doesn't sound so fun. That's why I need to ask Susan Chang, my neuro-oncologist, what's likely to happen.
Scenario 2: We control it with these drugs but the insurance gets stingy and won't continue to pay for the Avastin ($13,500 yesterday alone) at a certain point.
Scenario 3: These drugs don't touch it. Then onto chemotherapy number three for me. Who knows what form that might take. It could be good, but every turn is another option used up for me.
All of these remind me the sad thing about this for me: it will eventually kill me. It's funny how my position to this fact has changed. A few months ago, I felt pretty untouchable. Confused from the meds, but optimistic
about my outcome. Hopeful that the radiation was going to really help, since I hadn't had it before. And being cancer, it threw a curve ball at me and kept growing, evidently. That's the constant with cancer--surprises. Good ones, bad ones. But you're never really in control. You can eat well and be positive and spend time with good people and see good movies and blog your little soul out, but cancer does what it wants. Seems like maybe today I should don my "fuck cancer" hat, eh?
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Argh.

I can't begin to imagine how that feels. I'm so glad that you do "blog your little soul out" so that we have a tiny glimpse.

Have you read that "Crazy Sexy Cancer" book? I'm curious to know what you think of it.

Blessings and light and wishes of joy to you.
I have the Crazy Sexy Cancer book and have skimmed bits of it. I think she's amazing, but very different from me. I'm honestly not much of a reader these past few months, but I know I'll return to that book. Have you read it? What do you think?
Lots of warm wishes to you as well.
No, but I saw her on Oprah's "cancer episode." She seemed impossibly bright and positive. I mean, that's fantastic and I'm very glad for her, but it just...doesn't seem real or possible to me. Hell, I was freaking out about my throat surgery two months ago and we were pretty certain that was benign.

Maybe you have the right of it--we're all different people. Why should anyone expect to deal with something in a similar way? Besides, then folks get the idea that there's a "right" way to deal with terminal illness...and that's just wrong.
Fuck cancer, indeed.

FUCK CANCER.

I think I might make a cross-stitch sampler that says that.
http://subversivecrossstitch.com/

This is a company that sells great cross stitch patterns. I've made like three of their fuck cancer things. enjoy!
...wow. I didn't even know this existed. My mind, it is blown.
oh the bad, or do I mean good? directions that that store could take you.
Oh, wow.

I am... inspired.
Yes, the patterns are actually *quite* simple, but nice. I like the pink bunnies and hearts on the "fuck cancer" one.