Friday, December 10, 2010

Cancer Sucks

The drains did not come out Tuesday — still too much fluid — rescheduled for this afternoon, with strict orders to lounge around, no using my arm, no walking the dog.

The drains did not come out today. Dr. Z canceled my appointment — she went home sick midday.

Attempt #6: next Tuesday.

I spent this morning being tested and scanned - urine, blood, heart (MUGA scan), chest (x-ray) and discussing another clinical trial I am considering with the research nurse in charge.

Yesterday I met with yet another doctor to discuss radiation therapy - and yes, it is recommended that I have radiation after chemo, five weeks of it, five days a week.

I'm also supposed to see a cardiologist to discuss the dangers of chemotherapy to my heart and a drug that might help protect me. I've got a list of ten or so drugs now which may come into play to protect me from various side effects of chemo. Of course there are side effects to the side effect medications. It's mind boggling.

The plan for chemo is as follows:

One dose every two weeks for eight weeks.
One dose every week for twelve weeks.
Five weeks of radiation.
Five years of hormone therapy, which means a daily pill that turns off estrogen.
And maybe then another drug after that, to stop estrogen production entirely.

It sounds straightforward, but it's not. "Things change all the time," says the nurse who oversees the clinical trial I'm considering. Chemo gets delayed because of illness, low blood counts, veins too scarred over for intravenous access so that it becomes necessary to implant a port, even bad weather and holidays.

And if I do the clinical trial, there will be another drug added to the picture, a drug that I might be expected to stay on for a full year.

Today both J~ and I had meltdowns. Short ones, but still, meltdowns just the same.

Cancer sucks.


Anonymous said...

hey we're with you Amy, you can get through it love your artwork, it's amazing!

Anonymous said...

The protocol sounds daunting. Do you have any way to compare or judge if this is standard? It sounds like the surgery was successful so is what they're doing now "insurance" in terms of making sure not one cell got loose?

This is a very difficult time--and it sounds like a long stretch ahead. Are there any local support groups where you can connect with people going through similar things?

Thinking of you--and hoping that at least you can finally get the drains out next week.

Suzanne said...

I hate that you are going through this. I think of you a lot even though we've never met. Your journey has been somehow a part of mine. I began reading while TTC and have been a loyal reader. I feel like a member of the family is going through (odd, right?).

You keep fighting. I'm so glad that you have J by your side. You will beat this - you are far too strong.

Big huge hug to you.

Anonymous said...

When my boss, who was diagnosed with extremely small, focused, early stage cancer, was going through the standard radiation therapy after the biopsy, this is where her bravado and bluster withered out.

Not because radiation was so hard (it is tiring, but not as bad as chemo), but because of the time commitment involved. It is a huge inconvenience.

I don't know how women working traditional full-time outside of the home jobs manage it. My boss tolerated it because she has no small children to care for, no husband to tend, and she was allowed to come and go as she pleased without taking any sick time. She's pretty high up on the totem pole. But it really makes me think about all the working class women out there who have to find a way to squeeze it in while being primary caregivers to their children, their boss (sadly, this is common) and their spouses (this too is sad).

I'm not saying you don't have reason to be sad and mad, but man, are you in a primo position to go through this, if there is a better way to be positioned. Not only do you get top notch health care (when you listed the clinic and doctor I was floored), but you aren't committed to earning a living outside of the home and all those expectations tied to it.

You don't have to navigate FMLA and sick time to ensure the paychecks keep coming, multiple calendars of family and coworkers, while wondering if you are getting the best care possible.

I'm sure I'll get flamed for this, but my advice--keep your hands busy and your mind grateful. You are entering what is the tedious part of cancer treatment, but you have the luxury of being bored, while other women are flat-out frustrated and overwhelmed.

Anonymous said...

Cancer sucks...understatement of the millenium to be sure. How to find the new mindest to enter into this shitty phase of life...phase being the important thing to remember....a relatively short timeframe in what we want to be decades of living. educate yourself (as you are)and be prepared to reinvent yourself to some extent. While multiple personality disorder is not a good thing, finding a voice inside yourself to help you is not!