Cancer Update: Promising News, Determination & Hope. My New Goal: “Substantially” More Years

Photo courtesy of Peg’s Foundation, from The Morgan Impact Awards, Pete and Patti, 2021

(4-3-24) Since learning in February that I have Stage 4 lung cancer, I have undergone a series of scans and tests. I can now share some hopeful news.

My cancer is being treated with targeted therapy, which only can be done in a small percentage of cases. I am taking a medication (8 pills per day) specifically designed to target molecules that the cancer needs to spread and survive. While my cancer can’t be cured, it can be treated and targeted therapy is much less caustic on my body than chemotherapy.

Individuals with my cancer diagnosis who receive targeted therapy routinely survive three to four years, with some surviving substantially longer.  Clearly, this is much better than the six months sentence that was suggested in the ER.

I am 72 years old and hope to be among those who survive “substantially longer,” but this time line has certainly changed how I now look at my life.

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Your Kind Words Offered Me Hope: Thank You!

Courtesy of Cottonbro on Pixels

(3-3-24) I want to thank all of you who read my blog – A New Journey: I Have Stage 4 Lung Cancer – yesterday and offered me your support, prayers, and best wishes.

Writer Hal Lindsey once wrote:

 “Man can live about forty days without food, about three days without water, about eight minutes without air…but only for one second without hope.”

Your words offered me hope and touched my heart. Life gives us many unexpected challenges, as all of us with a loved one with a mental illness know. My good friend, Walt Harrington, once told me: “No one gets through life without getting beaten up.”

That’s true, but those punches are much easier to take when you have people who voluntarily share them with you by genuinely caring.

I will be forever joyful and appreciative because you reached out to me during this uncertain time in my life.

Hope changes lives.

 

 

A New Journey: I Have Stage Four Lung Cancer

 

(3-2-24) I was staring at the wall clock in the INOVA Fair Oaks (Va.) Hospital when the emergency room doctor spoke but I cannot tell you now what time it was. I only know that it was at that single moment when my entire life changed.

Just before Christmas, I’d fallen while hiking in the Shenandoah, breaking three ribs. Seven weeks later, I began gulping for breath whenever I walked upstairs. An x-ray revealed fluid in my right lung, which caused my wife, Patti and me to drive to the ER.

The fluid needed to be drained, the first ER doctor explained, while ordering a CT scan. Patti was nervous. “What’s taking so long?” she asked. The doctor finally returned. “We have a problem. There are three masses in your right lung.” Masses? My first reaction: “They must be from my hiking accident.” He replied: “They are highly suspicious.”

A second ER doctor arrived to schedule the draining of fluid and admit me into the hospital. “Do you understand what you are dealing with?” he asked. I blamed my fall. He said, “Cancer. Lung Cancer.” Patti and I stared at each other. Stunned! The doctor continued typing into a computer without making eye contact. Not a hint of empathy or emotion. “Lung Cancer that’s metastasized is Stage Four,” he said in a voice no different from when someone orders a pizza.

Patti urged me: “Don’t check the Internet.” I did. In less than an hour, I’d gone from being a hiking fall victim to having a fatal lung disease. “This can’t be happening,” I said out loud. Not to me.

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Parents Successfully Sue Hospital After Son’s Suicide: Doctors Agree To Listen & Not Hide Behind HIPAA

Matthew Milam’s parents sued hospital after doctors ignored warning signs their son was suicidal. No one listened. (Photo courtesy of Pat and Debbie Milam)

(12-15-23) Pat Milam was desperate. He knew his adult son, Matthew, was planning on killing himself. But doctors at the Ochsner Hospital/Clinic where his hospitalized son was being treated for bipolar disorder and paranoid sczhophrenia weren’t listening.

The more Pat tried to sound alarms, the more doctors at the large medical center on the outskirts of New Orleans, La., balked. One said he didn’t want to “upset” Matthew by sharing his father’s worries. But mostly, Pat and his wife, Debbie, were told the federal Health Insurance Portability and Accountability Act (HIPAA) prevented the hospital from discussing Matthew’s case.

“I told them, you don’t need to tell me a damn thing about my son,” Pat recalled in a telephone call. “I know my son. You need to let me tell you about what is happening on the other side” – at home.

“I took photos of Matthew standing in a thunderstorm begging God to strike him down by lightening,” Pat explained, hoping to substantiate his fears. “I got a notarized affidavit from a co-worker who described how Matthew had showed him a noose and said he was going to use it to kill himself. I documented how Matthew had dug his own grave in our backyard and had slashed his throat.” Pat went so far as to get a letter a psychiatrist not affiliated with Ochsner stating that Pat was not an “alarmist” but had reasons to be worried.

Pat hand-delivered all of those documents to Ochsner. Despite this, he was told that Matthew would be discharged. Doctors said he was stable. Pat contacted the CEO of Ochsner and begged him to intervene – as one parent to another. No one listened.

Eight days after being sent home, Matthew was dead at age 24.

Grieving, heartbroken and angry, Pat sued Ochsner Medical Institutions, one of the largest providers in the South.  It was a David vs Goliath challenge – Ochsner is a four billion dollar operation with 30,000 employees.

Now, twelve years after Matthew’s suicide and despite repeated attempts by Ochsner lawyers to drag out the couple’s civil suit, depose them with embarrassing questions about their personal lives, and drive up attorney bills, Pat and Debbie reached a settlement.

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“No Easy Task” – Gabe Howard’s Mom Talks About Her Son’s Bipolar Disorder

Susan Howard talks about her son’s bipolar disorder.

(11-7-23) Gabe Howard is no stranger to readers of this blog. He’s a popular speaker, host of Inside Mental Health: A Healthline Media Podcast, and author of Mental Illness is an Asshole.

For the first time since Gabe’s bipolar disorder surfaced, his mother, Susan Howard, talked openly about her son’s mental health on the Inside Bipolar Podcast on PsychCentral.

Gabe wasn’t present when his mother was interviewed by Dr. Nicole Washington, Gabe’s co-host on the podcast,

Many of you are parents of adult children with mental illnesses. I’ll be curious if you relate to what Ms. Howard says about her son.

Thanks Ms. Howard and Gabe for putting a human face on bipolar disorder.

Cancer Claims Dorothy Edwards: Passionate Housing Advocate Who Moved from Homelessness And Addiction To N.Y. Corporate Boardroom

Dorothy Edwards with her beloved dog, Gunter.

(11-2-23) We’ve lost a wonderful housing and mental health care advocate.

I served with Dorothy Edwards on the board of the Corporation for Supportive Housing (CHS). She died last month from rapid, advanced cancer at age 65.

For eight years, she and her dog, Gunter, lived under a freeway overpass in Greater Los Angles. She was heavily addicted to drugs and couldn’t find a way to get off the streets. She later told Bill Pitkin, of  the Conrad N. Hilton Foundation: “I craved a place of my own. I watched people who, day after day, helped me out and handed me money. I thought, I know they’re leaving and they’re going home. I was hurting and needed a home too.” Read article here.

What changed her life was “supportive housing” with “wrap around services.” Getting an apartment enabled her to focus on beating her addictions which she did, with help. It also gave her hope.  When Dorothy agreed to serve on the board of the CHS, I was tremendously proud of her and CHS. Mental health organizations routinely hire and appoint individuals with lived experiences to their boards, but not many large, New York City-based, multi-million non-profits recognize the value of having someone such as Dorothy as a board member. This is unfortunate.

“Dorothy’s insight, forged through her personal journey, has been invaluable in shaping the path of our workout CHS and the minds of many elected officials,” Deborah DeSantis, president and CEO of CHS, wrote in an email. “Dorothy reminded us that every individual is a reservoir of untapped potential, and with opportunity and support, they too, can overcome the most daunting obstacles. We remember …her unwavering belief in the power of recovery and second chances.”

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