Posted by: jeanne | July 2, 2010

conversations with my oncologist’s nurse

my oncologist went and broke a bone and is out of action for awhile, so i’m doing a lot of talking to her nurse, the wonderful carol, who could be a sister.

i’ve had my time on tamoxifen, which is an anti estrogen hormonal cancer treatment.  five years.  ever since right before my mastectomy.  okay, six years.  anyway, the side effects were weight gain, where i had briefly been down to my high school weight of 124, and within six months i was back to 145.  when i was that hefty in my 30s, in the middle of my safe and predictable marriage, i looked like a fireplug.  but due to the hormonal thing, my tamoxifen fat looked more like the venus of willendorf.  great large hips, tiny waist, and one large droopy breast.  with matching scar.

so for six years i’ve been very curvaceous indeed, with a diminished sex drive, which i’ve worked hard to minimize, because jim likes it when i do.  tamoxifen has given me a permanent yeast infection, and my mucous membranes are so thin they tear if i use anything sharper than my elbow. enough said.  lube lube lube.

but now it’s time to abandon tamoxifen, mainly because i’ve been without a menstrual period for a year, and for six months before that.  i tell them that’s nothing, because until i was 32 and my kid was born, i only had a period once every six months at the most, and never had any warning, either; no cramps, no pms, and no bad attitude.  i always attributed my ease with my menstrual cycle to my good attitude.  i take a natural attitude toward monthly bleeding, and you probably don’t want to know how i really respond to it.  it’s not like the way you respond, that’s for certain.

carol and i discussed the next step.  they’d been hounding me for almost a year to decide what i wanted to do next.  i’m not a good patient, i read up on things too much and want to argue every point.  they put up with me, unlike most doctors, who would pat me on the head and tell me to do it because they said so.  but i’ve got a unique body with unique functions (just like everyone else) and so i shouldn’t be treated to cookie cutter medicine (just like everyone else).  but they don’t listen to my arguments.  it would mean more effort for everyone to figure out each person’s unique chemical and hormonal profile, and adjust the treatment to them.  can’t be done.

aromatase inhibitors, that’s the next step.  there are a couple of those, and they all have side effects, mostly osteoporosis.  there’s one of them that permanently kills off your estrogen, and we threw out the idea of that right away.  there’s a steroid that has a minor side effect of preventing tumors, but was mainly used to plump up people with the wasting disease, and it causes some other cancer.  so we decided to try the ai with the least often experienced side effects, which is femara – letrozole.

i asked what about sea sponges, and other way-out-there-at-this-point trial drugs.  we’re too early for the gene therapy drugs.

i looked up marijuana‘s anti-estrogen activity, but it’s not yet in my state’s pharmacopoeia, so other than agreeing that it would be a good thing when it was, there was nothing much to be done in that area.

she remarked, because we can talk about these things, that they’d been able to give me five years with the tamoxifen, and now they’re going to try to give me five more years with the aromatase drugs, and that’s about all they can do.

i told her that i only expected two years.  at the point when my surgeon cut off my right breast, i realized i’d just extended my lifespan at least two years by cutting it off.  it was unlikely to be less than two years before metastasis could kill me.  so that meant i had at least two years to live, maybe more.  so i could restart my life, reinvent myself, do what i needed to do before i died.

and i’ve been alive since then.  the mastectomy was in 2004, and that’s six years ago.  i’ve had jim for six years, i’ve had my grandson for almost three, i’ve got the life i’ve always striven for, and i’m happy as a clam.

i might even have more time.  whatever i take next could work for five years.  having had a mastectomy could have taken care of the problem for good.

but that’s not how it works.  carol and i have been honest with each other.  they can only delay the return of cancer somewhere else.  they can delay it for an average of five years with one drug, five years with another.  but it’s just a waiting game played with vitamin-shaped pills.  and when it comes back, pretty much the only thing they can do is make me feel less bad as i’m dying.  palliative care.  that plumping drug so i don’t waste away too fast.  so i have some time left, and who knows how much, and as far as that goes, everyone’s in the same boat – it’s just that i know it and you all don’t.  i act like i’m going to die soon and you act as if it’s not possible.

okay, back to the next step in our ‘fight’ against cancer.  let me not get started about semantics, marketing, and the medical/pharmaceutical complex.

i decided on letrazole.  i got the prescription called in and filled, and took my first pill the next morning.  by the time i got to bed that evening, it felt like my bones were bruised.  it was a nagging pain, constant, and no amount of walking or twisting or stretching made it go away even a little bit.  none of my pain relievers worked, even the exotic ones, and i was kicking and tossing in my bed most of the night.  nasty bone pain, mostly in my hips.

it reminded me of when i was pregnant, and my ligaments were loosening up so i could open my hips and pass an 8 pound baby.  the pain back then was constant and unignorable, and only by getting my husband to pound on my sacrum and hips with his fists could i get any relief from the pain.  i guess he numbed the area.  whatever, i got pounded every night, and never came once.

the morning after staying up all night with connective tissue pain and soreness, i took another tablet of letrazole the next morning.  i had pain when i walked, pain when i stood at the sink or the stove.  pain when i sat in my chair at the computer.  pain when i sat on the glider on the porch to read in the cool afternoon breeze.  pain when i lay down in bed for a nap.  pain with my knees up, pain with my legs down, pain lying on my back, pain lying on my side.

so fuck that.

i stopped taking letrazole after the second day, and called carol to tell her why.  she said i’m backwards from everyone else, because everyone else comes to letrazole after having bone pain from arimidex, but maybe i’d be backward enough to not have any trouble with it.  it’s another ai, but people all respond differently to them.  and that’s pretty much my choice at this point.  so we’re going to wait until my insurance cycle comes around again, and then switch to arimidex.

so we’ll see.  at the moment, i’m only using my casual, not yet legal antiestrogen treatment, and we’ll see what next month’s surprise will be when i go to the pharmacy for my new prescription.

more late.r

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