And Yet Another Chapter in the Never-Ending Story

I just got off the phone with Adrienne and I tell ya…she’s angry. Probably close to the angriest I’ve seen her in a long time, and that’s saying a lot.

What is she angry about, you ask?

Side effects.

Side effects are a never-ending story for my daughter. There were the short-term side effects like nausea and hair loss from chemotherapy and burned skin from radiation during active treatment. There are the longer-term side effects like lymphedema from lymph node removal and teeth rotting out of her mouth. There is the endless emotional side effect of not trusting her body not to betray her ever, EVER again. But today’s star attraction is how incredibly crappy she feels on the ovarian suppression drugs she has to take to help prevent recurrence from a cancer that was 95% estrogen-receptor positive.

Low-grade nausea always hovering in the background. Joints feeling like she’s a ninety-year old woman. Brain fog where she needs everyone else in the room to shut up so she can hear herself think if anyone asks her a question. Sleeplessness when it’s the only respite she gets. Dizzy spells that mean she has to sit in her car for a half hour before she can go home because she doesn’t feel safe to drive. Headaches that make wind blowing through the trees sound like a fog horn. Waking in the middle of the night with rivulets of sweat dripping off her body drenching the sheets.

Looking at the calendar knowing she has five more years of this to go.

This is life for so many young women like Adrienne diagnosed with hormone-receptor positive breast cancer. We often hear jokes about older people having creaking joints or forgetful “senior moments,” but my child has been thrust into chemically-induced menopause and lives that every day… And she’s 34. She was diagnosed with breast cancer six years ago, active treatment five years done, but she has endured side effects of this awful disease every day since because she has to take drugs to eliminate the hormones her cancer looks for to grow.

Adrienne told me once that relativity has different lenses and this is a situation where that certainly applies. If she had never had cancer, she would be at the doctor’s office every week trying to get them to do SOMETHING about how she feels. Instead, she is resigned to this being her existence. She is in drug-ception where her reality is distorted and most of the time she just disassociates because if she lived there it would be too much.

Six years ago Adrienne called me in tears to say she had to go back for a second surgery because of questionable margins. I told her I knew she didn’t want to be doing that and her response tore my heart out. This month there were a flurry of cancer-survivorship appointments (which are always triggering) and the reaction to the ovarian suppression shot was particularly rough. We were alone and I could see in her face that she was holding on by a thread so I took her in my arms. We stood there as she sobbed against my shoulder and I heard her say those exact words again.

“Mommy… I don’t want to be doing any of this.”

If there was one thing I wish people outside the cancer circle knew, it would be how much effort living in “The After” takes. The emotional and physical side effects don’t stop when active treatment does and often-times the impact of maintenance treatments like ovarian suppression can be debilitating. My girl has to rise up over… And over… And over again and, although it keeps me in awe of her spirit, here’s the thing:

Oh Adrienne, I don’t want you to be doing any of this, either.