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

A Final Goodbye

Grief Diaries

One magical moment in the summer of 1969 changed my life forever. A chance meeting. A spark. A love that was meant to be. A love that defined me. A love I will carry with me forever.

In 1964, my husband arrived as a first year teacher and basketball coach at my high school. I arrived there as an eighth grade student. No one—especially us—would have ever guessed that five years later we would fall in love and marry.

We were blessed with a son in 1976. In 1982, we moved to Las Vegas and, after a year of coaching, Vern went to work at UNLV’s sports arena. After twenty years, he retired to open the Orleans Arena. Vern was an amazing teacher, fabulous coach and inspiring mentor to many.

Vern had back issues that flared from time to time, so we weren’t initially alarmed when the pain began in 2006. However, when he got to the point where he could hardly walk, I convinced him to see a doctor. A CT scan was done but didn’t show anything, so Vern was sent to a physical therapist. And he got worse. We finally begged his primary physician to get insurance approval for an MRI. We weren’t home too long after the procedure when the doctor called and said, “My God, man, you have a tumor on your spine.” I don’t think I’ll ever forget those words.

We met with the surgeon early the next morning. A small room. Vern in a wheelchair, me on a stool, the doctor showing us the MRI scans. The tumor. The hot spots. Spinal compression fractures. And so many lytic lesions. Multiple myeloma. Cancer. Metastasized. Not a good prognosis.

And so it began, four plus years. Surgeries. Mistakes. Rehab. Physical therapy. Infections. GI bleeds. Pleural effusions. Pneumonia. Pulmonary embolism. Chemo. Radiation. So very many blood transfusions. Colostomy. Kidney failure. Dialysis. He went through so much. And then there was nothing more they could do to him. For him.

Grief DiariesVern’s final days were spent at Nathan Adelson Hospice. No more pricks and prods or waking him up for rounds. He was peaceful. I stayed with him twenty-four hours a day. And those final four days were a gift. He spoke very little the first two days and then was silent, but I have no doubt at all that he was able to hear my words.

When the death rattle arrived, I gently slid into his hospital bed, held him close and spoke to him until he slipped away.

Written by Dianne West in How to Help the Newly Bereaved. Dianne’s beloved 69-year-old husband Vern died from multiple myeloma in 2010.

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