Julie

Mar 272019
 

Julie Mears Henry, 53, died March 26 at her home in Palm Bay, Florida.

She is survived by her husband, John Henry; her father, Charles Mears; and more relatives and friends than can possibly be named.

Julie was born in Kansas City, Mo., and graduated from St. Catherine’s School, Baptiste Junior High, Hickman High School and Rockhurst College.

She trained as a nurse and worked for the American Academy of Family Physicians before becoming a freelance writer specializing in medical topics, co-owner of a book publishing company, and owner of KansasCityontheCheap.com and MyrtleBeachontheCheap.com.

Julie, like her mother, brought people together. She loved to be surrounded by family and friends. When she moved to a new town, she actively sought out new connections.

As a volunteer, she cooked meals for children in a group home and worked for Alzheimer’s awareness in Brevard County through the Purple Balloon Guild.

In July 2015, Julie began chronicling her journey through cancer in a blog she titled “Facing My Mortality”. After several months of misdiagnosis, doctors discovered a tumor in her trachea, which turned out to be small-cell neuroendocrine cancer, which was essentially small-cell lung cancer.

During the next three and a half years, she wrote about her chemo, surgeries, radiation, immunotherapy, and numerous hospital stays, many of which took place only because her insurance wouldn’t cover a drug she needed to stay alive, and the only way to get it was to be hospitalized and apply for aid from the pharmaceutical company – which she was finally denied because she was deemed not poor enough.

Through her blog, she shared the difficulty of living with cancer and the extraordinary difficulty of navigating the medical system when you have a serious illness.

She wrote in May 2017:

“I’m angry. In fact, some days I’m pissed off at the world. I’m mad that this happened to me in the first place. That I can no longer hear music or sing. That I’m spending so much of my life sitting in doctors’ offices. That almost every moment of every day is a struggle. I want my life back! And then I feel guilty for being mad when there are others who have lost so much more than I. What right do I have to be angry? And that makes me cry more.

“I’m…human. I don’t think most people who have cancer (myself included) are the brave warriors people often make us out to be. We were thrust into a battle with inadequate ammunition. There was only one choice: Do you want to live or die? So we did what we had to do.”

She posted her last entry in January, after a family visit from all five of her siblings for Christmas. The day the last sister departed, she experienced a high fever:

“I actually thought I might die that night, but never said anything. It felt like 2016 all over again (That was the year I almost died for real.). Although I wouldn’t say I wanted to die, I felt okay about it. I’d just seen a lot of my loved ones, and I’d had a chance to travel more with my husband and do a lot of fun things in the two “extra” years I’d been given. So I was okay with it if God had decided it was time for me to go.”

In late February, she elected to go into hospice care and forego any further treatment.

A celebration of her life will be April 20 at her sister’s home at 1216 Lakecrest Circle in Raymore, MO. All are welcome to drop by from 1-4 pm to share food and conversation. Dress is casual (per Julie’s explicit instructions).

 Posted by at 8:51 pm
Mar 172019
 

Written by Mary

”I’m ready.” That’s what Julie told me today when I tossed out another, “Maybe you could ask your doctor about…” She doesn’t want to go back to the hospital, and she doesn’t want to try any more rounds of treatment.  She just wants the pain and nausea to go away. She is done, and she is ready.

While it was hard to hear (oh, it was hard to hear), I’m not surprised. Here’s the gist of what’s been going on since she posted in January.

  • The tumor in her stomach has grown, resulting in pain and nausea.
  • She went to the hospital seeking relief from that and to address the ongoing low sodium issue.
  • While in the hospital, she had radiation therapy to try to reduce the size of the tumor. The goal was to relieve the pressure on her organs and get her sodium level back under control.
  • She learned that now that she has Medicare, she no longer qualifies for free medication for the sodium. It has not been especially effective as of late anyway, so she went home from the hospital without it.

Since she’s been home, she’s gone on Hospice, and John has been constantly by her side. While the tumor seems to have shrunk some, she’s still in a lot of pain and the nausea is ongoing. She’s not eating, she’s jaundiced, and she sleeps a lot because she’s on high-dose pain medication.

When I talked to her today, she said she was looking forward to seeing Mom. I said maybe there would be a beach, but she told me there are no beaches in heaven (what do I know?), so there must be something even better than beaches. She said, “Whatever’s there, it has to be better than this.”

So, here we are. I feel like I should share some profound life lesson, like, be sure to say, “I love you,” every day to those who are dear to you. Isn’t that supposed to be an end-of-life lesson? It’s a thing. But, it’s not a Mears thing. We rarely heard that growing up, and we pretty much only say it to each other in times of tragedy. Like today.

But, it doesn’t have to be said out loud to be real. The Mears family knows it’s real. We love each other. We like each other. We don’t argue, we don’t hold grudges, and we assume good intent. We show up. We show up for holidays and birthdays and graduations and Chiefs’ watch parties, and vacations, and game nights, and moving days, and weddings, and funerals.

And showing up will be harder without Julie there, but we’ll keep doing it, because that’s what you do for the people you love. So, maybe that’s the lesson.

I’ll keep you posted. She’s in good hands. And, she’s ready.

 

 Posted by at 12:36 am
Oct 012018
 

Bucket list cruise to Alaska. August, 2018.

There are two types of lung cancer: 1) small cell lung cancer; and 2) non-small cell lung cancer. And within those two types are many different subtypes. I have small cell neuroendocrine carcinoma. Neuroendocrine tumors can be very tricky because they secrete excess hormones. In my case, the tumors secrete excess anti-diuretic hormone, which causes me to retain water, which causes my sodium level to plummet – a condition known as Syndrome of Inappropriate Antidiuretic Hormone (SIADH). Continue reading »