Dark, Tangled 3am Thoughts

Monday, March 15, 2010 3:39 AM, PDT

Exposed Roots at Youngs River Waterfall

One of the lovely side effects of the drugs I am taking is that I’ve been slammed into premature menopause, complete with hot flashes, mood swings, and insomnia.  Also, all my muscles and joints ache from head to toe, with the neck, shoulders and arms being the worst.  And I lie here awake with my right breast throbbing in pain from the new tumors… When Mark is here, I can sometimes breath with his sleeping rhythm and get myself back to sleep.  But he’s not here.  He’s in NY taking care of his parents.

If you’d rather not hear me whine, then stop reading now.

Last Thursday, I had a shot that will shut down my ovaries.  My cancer is estrogen-positive, so this was the next step to take after the Tamoxifen failed to stop the growth.  For the next level of drugs, I can’t be pre-menopausal, so it was either the shot or surgical removal of my ovaries.  I’m trying the shot (Zoladex) first.  At 49, I already had a less than 2% chance of ever getting pregnant, but somehow it’s different to actually choose to do something that ends your fertility.  No children. Never now.  That’s landing very hard.  And even if I live through this and want to adopt, Mark and I would almost certainly be turned down – he with epilepsy, and me with cancer.

I think about where I want to be buried.  I used to think I wanted to be cremated, but now that death is a closer possibility, that really feels too harsh.  I can’t be buried with my brother at Arlington.  So is it here? My new home?  Or back in Mendocino, where I lived for 11 years and my first dog, Kima, is buried? Both of those would be hard for my mom.  So East Coast then? By my grandmother in Rosendale? That holds no meaning for Mark… but his family is buried in those awful New York City graveyards under the freeways. I want to be buried on a hill overlooking the ocean, someplace I love, someplace peaceful.  I think now of the old cemetery in Jamestown, Rhode Island where I did gravestone rubbings with Bari when we were still in college.  I was fascinated by the old stones there from the 16 and 1700s.  Yes. Maybe that’s the solution.  I wonder how to arrange for that?

OK, I’m not dying.  Stop it! I have a treatment plan.  I’m on the way to recovering.  Keep repeating to self: Spontaneous Remission, Spontaneous Remission, Spontaneous Remission.  NED – no evidence of disease.  I want to be NED.  My white blood cells are attacking and disabling the cancer throughout my body.  The cancer cells are being flushed away naturally by my incredibly strong immune system…

I’m angry that I had 28 lymph nodes removed from under my arm during my first breast surgery.  I didn’t know any better, and I thought I was just having a sentinal node biopsy.  The surgeon kept going because cancer was found in two lymph nodes.  He took 28, only finding one more, for a total of 3 positive nodes.  Now I know that removing ANY lymph nodes, even cancerous ones, does not improve your chances of survival at all.  In most cases it’s better to leave them in place, doing their job.  But I didn’t know that then.  There’s so much I didn’t know.

So now my right arm is forever damaged.  The way the doctor explained it, my right arm is now “diabetic”.  Prone to lymphedema (extreme swelling and pain), weakness, possibility of infection from even minor scratches.  I need to wear a compression sleeve to fly on an airplane. And because my right arm was debilitated, I overused my left arm.  Last September I was was walking a friend’s big dog on a leash and he pulled my left arm backwards, almost dislocating the shoulder.  The torn muscles and tendons still haven’t healed.  So both arms hurt most of the time.  It doesn’t sound like a lot, but try making the bed and pulling the fitted sheet down over the corners, or taking a shirt off over your head, or braiding your hair, or putting on a coat.  These motions can cause me excruciating pain.  Housecleaning, dishwashing, gardening, carrying groceries… all are dilemmas to be figured out.

Wondering if this disease can be reversed.  Can my breast heal? Will the bone mets in my hip and pelvis go away?  The next step is a Zometa shot for that.  I’m preparing for it.  I have to have any needed dental work done beforehand because there is a risk of jaw necrosis.  Yup, JAW NECROSIS.  Your jawbone dying off and disintegrating.  Nice.

I really think my best hope is Dr. Forsythe’s treatment in Reno. I must figure out how to make that happen.  Lots to do tomorrow.

I pray.  I take a half a Xanax for the anxiety.  I play my Belleruth Naparstek guided imagery for Fighting Cancer.  I pray some more.


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