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.

Grief DiariesGrief Diaries

A Sacred Day for Bereaved Mothers

Bereaved Mother's Day

Today is International Bereaved Mother’s Day, a day to honor those who walk the hardest journey known to motherhood. It’s been nearly nine years since I began such as transformative path, and although that isn’t much time in the world of grief, it’s enough to uncover treasured lessons buried deep under the rubble.

The journey begins very ugly.

“Why me, God?” I wailed. “What did I fail to do to deserve such a fate?”

“It’s not what you did not do,” he said. “It’s what you will do.”

I didn’t understand, and stood at the door of The Wailing Tent spewing vile words and gnashing my teeth. Outside were solitary tents for mothers who weren’t willing to accept fate’s invitation. Not wanting to be alone in my agony, I forced myself across the threshold.

Inside the tent, sisters tended to my broken soul without judgment. They taught me that love comes in many forms, and we don’t need to know someone in order to love someone. For we love our neighbors as we love ourselves.

I also learned to love without boundaries and judgment. This is  the point on my journey when judgment of others faded from my heart.

I learned about compassion in ways I never comprehended. My sisters taught me to have compassion without fixing another soul’s problem, lest I rob them of an opportunity to grow.

In addition to love and compassion, I learned about forgiveness. Forgiveness not just for perceived imperfections in others, but for myself as well. This opens the door to self love.

Next comes gratitude. This isn’t fathomable in the journey’s beginning. But through profound sorrow we learn that life can change in an instant, and to appreciate all we have. A grateful heart is a happy heart.

I then learned about hope. I discovered that grief comes in many forms, and without grief there would be no need for hope. Many are robbed of hope but when we help them find it, it helps our own heart to heal.

Finally comes beauty. I learned that our hearts can hold joy the same time as sorrow, and I merely had to give myself permission to embrace life’s beauty. In doing so, it balances the sorrow. That was perhaps the hardest lesson of all, and yet one I treasure most.

Inside The Wailing Tent, no words are spoken. The eyes and heart teach everything we need to know.

So you see, while my journey began very ugly, it has transformed into one of beauty. When I earned my membership into The Wailing Tent, an ancient and sacred sisterhood known simply as the club, I learned to become an ambassador for love, compassion, forgiveness, gratitude, hope, and beauty. Although I don’t always get it right, the lessons I gained through losing a child helped me evolve into a better version of myself.

“It’s not what you did not do. It’s what you will do,” God said.

Bereaved Mother's DayToday I’m honored to be a member of The Wailing Tent, a place that receives all mothers embarking on life’s hardest teachings. I miss my child with every breath, an ache that lives inside my bones, but without such a journey I would never have had the opportunity to learn life’s most valuable lessons.

I am grateful.

Happy Bereaved Mother’s Day to all.

Warm regards,

Lynda Cheldelin Fell

Lynda Cheldelin Fell

Feeling guilt after loss

Grief Diaries guilt

How do I describe my mom? She was a bundle of contradictions, especially toward the end of her life. My mother was born to a very poor farming family in upstate New York. She was the kid who literally got one pair of shoes a year and put cardboard in the bottom when the soles wore out. This led her to be determined that her children would never be without the desires of their hearts. She was generous with those she loved to a fault. I used to say that I had to watch her finances because she would be the little old lady eating cat food while she paid for her children to dine on filet mignon.

My father worked for the United States Government. We, my parents and four siblings, traveled the world and got to experience things that many dream of. I watched my mom entertain ambassadors and foreign dignitaries with an ease that would have put the finest event planner to shame. She always reminded me of Jackie Kennedy Onassis. She dressed like her, had amazing poise and seemed to be flawless in her ability to make everything look easy. Memories of fine china and white linen are as ingrained in my childhood recollections as Barbies and Match Box cars. Mom was simply magnificent when she was in her element.

My father died in 2001 from pharyngeal cancer. It was slow and ugly. My oldest sister and I made a pact during that time. Our motto was “no regrets.” Looking back, I have none. I was there constantly for my dad; my world stopped that year. When it was time to say goodbye, I was holding his hand and there was no doubt in my mind or in his how deep our love for the other was. In retrospect, I was afforded that luxury because Mom was once again doing her Jackie Onassis impression and keeping everything running flawlessly. We supported her and dad, but she was definitely the backbone. I hated what happened that year, but I have no regrets. I wish I could say the same for my mom’s passing.

People loved mom, but she never fully trusted their loyalty. She was always sure that she was not up to the standards of others. Her self-confidence was frighteningly low. She masked it well most of her life, but toward the end, as her filters began to fade, I saw how the fear of what she perceived others’ opinions to be had removed much of the joy from her life. It was a shame because it was all self-induced. As I said, people loved her; she just did not allow herself to be vulnerable enough to be fully loved. In June 2014, I received a call from my oldest sister saying she thought mom had had a stroke. I threw some clothes into a suitcase and immediately began the twelve-hour drive to my mom’s house, while my sister began her nine-hour drive. It was the beginning of the longest seven months of my life. Mom had indeed had a stroke and would require extended hospital and post-hospital therapy to recover. Again, my sister and I made a pact, no regrets.

I can honestly say that from that point on, Mom was not alone for one single day until she died on January 21, 2015. We battled through stroke recovery, which is a story unto itself. One must experience it firsthand to even begin to understand the trials that accompany stroke recovery. We were two weeks away from Mom being able to live independently when she took a small fall. Due to the blood thinners she was on, we went to the hospital for a precautionary check-up. They found lung cancer.

After consulting with specialists, looking at Mom’s overall health and mental state, we decided to go with an intense five-day radiation plan known as CyberKnife. Mom did fantastic. Although we would not be sure of the results for six months, we felt very confident and went into the holiday season with high hopes for the future.

Thanksgiving and Christmas went by with no glitches. We were happy and had a house full of children and grandchildren. It was a happy time. My sister came to my home to stay with Mom so I could go on my annual family vacation between the week of Christmas and New Year’s. We wanted Mom to go with us, but she was just not prepared for the amount of “go time” we experienced. Our family squeezes a lot into that week. When I got home from vacation, Mom came down with a cold which turned into pneumonia. It was time to go back to the hospital. Mom was in the hospital for about ten days. She was released to a rehab hospital to regain strength and walking ability. I was confident she would overcome this as she had every other battle. I was wrong.

Monday, January 20, 2015. I was heading to the rehab after school. I was staying there so I could be close to Mom. I got a call saying she was being combative and disoriented. I got there and found her bed had been lowered to the floor so she would not be able to fall out of it or to climb out as easily. My guts screamed to get Mom to the ER, but the nurses assured me it was just digestive and they were taking care of it. After a half hour of watching her hurt, I looked her in the eyes and asked if she wanted to go to the hospital. She nodded yes. The nurses argued with me, and I ended up telling them that they could call the ambulance or I would.

Mom arrived at the hospital around 11 p.m. I remember thinking I should call my husband, my kids, someone. But I knew I needed to be alone through this. I didn’t want to have to console anyone else. Although the doctors kept telling me that my mom was going to be fine, there was one nurse who was brutally honest. I looked at him and asked if I should call my siblings. He said it wouldn’t be a bad idea. One of my brothers and one of my sisters made it in time. The other two did not. I hold guilt that I should have called sooner.

That night has some of the worst nightmares of my life. I can’t tell anyone about them because I don’t want them to have the same images in their mind that I hold in mine. It was not a peaceful passing. I hate myself for some of the things I did. I excuse it by saying that I thought I was saving my mom’s life and doing what the doctors said, but it does not change the fact that I participated in the pain and fear my mom felt before she died.

No amount of self-talk takes away the pictures that are on a constant loop when I close my eyes.

Written by Sophia Blowers. Sophia’s 79-year-old mother died of internal bleeding in 2015. Read her full story in Grief Diaries: Surviving Loss of a Parent.

Grief Diaries