Wednesday, December 16, 2009

computer withdrawls

I haven't died.

My laptop's got a broken screen and I've no money to repair it, so I'll have to wait until I can borrow a computer for a real, juicy, satisfying update.

In the meantime, I've been reading Mutants by Armand Marie Leroi, which covers the history of medically documented "mutants" and human genetic variety. There is a chapter on osteosarcoma that is particularly fascinating. Apparently there is a correlation with height, growth hormone, and propensity for rampant bone cell growth. More on that later...

I've been having pain in my left leg and pelvis again, and it feels exactly how it felt 2 years ago, before I was diagnosed. It gets worse at night. It gets worse mid-month. I can practically mark my calendar. My onc says not to worry, but that's what they told me pre dx, too. I really, really, really think it has something to do with my hormones. Every doctor I've ever spoken to assumes I'm wrong, and yet no one can give me an explanation.

Maintaining a "normal" "successful" quality of life with disease is effing near impossible. I feel exhausted and broken-down every night, the consequence of trying to make it work. har har.

more later my lovelies.


Levi said...

That pain sounds fun. As if you haven't suffered enough. And the doctor story sounds familiar. "Don't worry." Then a lack of explanation.
Easy for anyone else to say.
I hope you come to pain free without having to croak to get there.
I'm sad for your exhaustion and brokendownness.

Anonymous said...

Yay you're back writing! My doctors all told me, in other words, I was crazy..before I was diagnosed with Fibromyalgia. Why do they do that? Act like you're wrong, when they don't even have an answer themselves? I wonder if the ability to bullshit someone is something they learn in med school, pfft.

keep on keeping on.

Pansy Palmetto said...

And, I, too, remain STILL NOT DEAD!
OOog. I, too, hate getting symptoms that are "exactly like before". I hope yours are merely "ghost symptoms" and, in fact, related to hormones or something/anything that is identifiable AND treatable.

I had an exciting atom bomb go off in my face to send me out into the new year: after 6 years the doctors found out in August what kind of cancer my "unknown primary" is: nonresectable bile duct cancer.

Good news: a liver transplant is the cure.
Bad news: I am (and always have been) too far gone for a liver transplant.
Good news: Fine with me! I am so surgery-phobic I really did NOT want a liver transplant.
Bad news: As soon as I knew I could not have a liver transplant, I wanted one!
More bad news: tumors are escaping the clutches of my one and only treatment option: Gemzar the Chemo Wonder Drug (it's a wonder it works on me at all).
Good news: RFA surgeries burn the mufus to kingdom come.
Bad news: An "outpatient" surgery does NOT mean you will not be bedridden.
Good news: At least I was ridden in my own bed in my own home. (Not a sexual innuendo. Well, for THOSE 5 days, for sure. Haha!)
Bad news: the docs said Gemzar "had run its course" and gave it a pink slip. The hunt was on for another drug.
Good news: Gemzar cried and pleaded and is back on the job. Seems it is still better than nothing, which is what the hunt for another drug turned up. We all are crossing our fingers a little harder.

Much like 2008 (when I had 3 surgeries) I also had 3 surgeries in 2009.
They say things come in threes: I am not a greedy person so I do NOT want 3 surgeries in 2010. But I am also not a mean person: I hope NO ONE has to have 3 surgeries in 2010.

Hang in there. I laid on the floor for 2 years and now I have ridden 6,000 miles on my bike this year. You will have your full and glorious flame returned to you, too.
Okay, I lied a little bit. I am no longer a "morning person" but that is a very small price for the rest of my day.

Anonymous said...

Honey don't take take "don't worry" crap from those doctors! Fight to make them figure out why you're having the same symptoms you had when you were diagnosed. Get a second opinion if necessary.

kaylin andres said...

Ms. Pansyfish you are ALWAYS an inspiration!

and yes, I trust my doctor's advice about as much as I trust my little brother's. He might be right. might. We all know our bodies best...

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