The power of self advocacy

Grief Diaries
It started as a small sore on her nipple, about the size of a pencil eraser. My oldest sister Layne made an appointment with her primary doctor. She was put on oral and topical antibiotics and told to go buy new bras.
 
Three days later Layne had an appointment with a different doctor for an unrelated issue. He asked why she was on antibiotics. When she explained, he immediately recommended she get a second opinion. She left that office and walked over to her gynecologist and asked for the soonest appointment. A retired R.N., Layne explained the situation and requested a biopsy.
 
Layne saw the gynecologist the next day. He wasn’t alarmed but clearly Layne was. She was sent to a female surgeon for a biopsy, but the soonest appointment wasn’t soon enough. Living with autoimmune disease taught Layne to become a seasoned advocate for her own healthcare. She had an appointment for a biopsy the very next day.
 
When she arrived for the biopsy, it was two days before Memorial Day weekend. The nurse made it quite clear that they were working her in. Finally Layne was called back to an exam room. The surgeon looked at the sore on Layne’s nipple and said, “I don’t think you have anything to worry about. This doesn’t look like anything bad but let’s do a biopsy just to make sure.”
 
On May 31, Layne’s surgeon called. When the doctor calls, it’s never good news. “You have breast cancer.”
 
Two of us four girls have now been diagnosed with breast cancer. Our little sister was diagnosed nearly 12 years ago with stage 4 breast cancer with bone mets. She was just shy of 37 at the time of her diagnosis. Layne is 58, and her cancer is Padget disease, a rare form of breast cancer. Genetic testing on both sisters were completely negative.
 
I’m sharing this in hopes it will save others. Layne had a 3-D mammogram eight months ago that was completely negative. Most doctors treat nipple sores with multiple rounds of antibiotics without success. By the time the true diagnosis is uncovered, the cancer has advanced. Thanks to Layne advocating for herself, it was caught early and she has a better prognosis than most.

I’m sharing this in hopes it will save others. Layne had a 3-D mammogram eight months ago that was completely negative. Most doctors treat nipple sores with multiple rounds of antibiotics without success. By the time the true diagnosis is uncovered, the cancer has advanced to a poor prognosis. Thanks to Layne advocating for herself, it was caught early and her chance of survival is much higher.

Self-Advocacy is learning how to speak up for yourself and be a partner in your own healthcare. Most of us had both reigns over to our medical team because we expect them to get it right. But just like any profession, doctors are humans who are subject to fatigue, emotional stress, family life, and more. Exercise your right to understand. Seek answers, ask questions, probe possibilities. Listen to your intuitive side when making decisions. Stay informed. Knowledge is power.

When your life is on the line, be at the helm of the team.

-Lynda Cheldelin Fell, Grief Diaries
Grief Diaries

Why suicide isn’t selfish

In light of Kate Spade and now Anthony Bourdain‘s deaths by suicide, I’m struck by the harsh comments by those who don’t understand. Suicide is not a crime (thanks to modern law), and it isn’t selfish. It happens when pain exceeds coping skills. Just as people with heart disease sometimes die from a heart attack, depression is a mental illness that sometimes leads to suicide.

It’s important to understand that suicide can also happen in the absence of depression, like a teen or young adult in acute pain from overwhelming circumstances they can’t see past.

If you haven’t lost someone who died from suicide or know someone who survived a suicide attempt, it can be hard to wrap your brain around it. But judging someone else’s actions when you don’t walk in their shoes only brings more heartache to the loved ones left behind who now face a lifetime of shame and stigma.

My heart is broken for all families left struggling in the wake of suicide, and serves as a good reminder to embody simple kindness. One hello can change a mood. One hug can change a day. One act of kindness can change a life.

National Suicide Prevention Lifeline
Text HELLO to 741741
1-800-273-TALK. It’s free and open 24/7.

 

Grief Diaries