The brother I never knew. The mother I never had.

Originally published on KevinMD

The brother I never knew.

He was buried in an unmarked grave with other dead babies. 1960.

I am now the age my mother died. She was 64 years old: colon cancer.

She was a vacant, negligent mother.

During one of my psychology classes in nursing school, we learned about the baby monkey experiment (the Harlow experiment), where a baby monkey was laid against a mother made of wires. It was an inanimate object void of heart and warmth and touch and love.

That was a lot like my mother.

It’s interesting how I seem to have flashbacks of when I was five years old. It was 1960.

It wasn’t “nap time,” but I noticed my mother spent a lot of time in bed. I knew she was sad, and that made me sad. How I loved my mother! I snuggled up next to her to give her comfort and love. The only thing I knew was how to be next to her and maybe take away some of her sadness.

Mom came from a strong Italian family. Her father was from Italy and crossed over to America, landing on Ellis Island. America: the promised land. And to have a son in the family was the ultimate blessing.

Mom was hoping this time for a son. After having twin daughters with stark black hair and then me with vibrant red hair (dad was Irish!), this third pregnancy had to be a boy.

The golden son.

Before the age of ultrasounds or NICUs (newborn ICUs) or surfactant, modern medicine in newborns had not yet developed at the time.

After eight months of pregnancy, mom started to have contractions and vaginal bleeding — all of the wrong signs for a healthy baby. Eight months gestation was too premature.

Dad rushed her to the hospital. And after several hours of labor, mom delivered a baby boy. The Italian “prize.”

They heavily sedated mothers back then during labor. She remembers being drowsy and weak with blurry visioned. She remembers seeing the back of Terrence’s head — the name given to him. His grandfather from Ireland’s name.

But this was her redemption.

Finally, she could please her parents! A boy with olive-colored skin and black hair.

And he was whisked away. My mother would never hold and bond and kiss the baby boy.

Within one hour of delivery, he was dead.

It was called “hyaline membrane disease” — now known as Infant respiratory distress syndrome or neonatal respiratory distress syndrome. It is more common in premature infants born six weeks or more before the due date. This is a condition in newborn babies in which the lungs are deficient in surfactant, preventing their proper expansion and causing the formation of hyaline material in the lung spaces.
And my mother came home to us three girls without that bundle of joy.

A dead baby.

A disgrace.

There was no therapy sessions or grieving. Everything came to an abrupt halt.

Baby Terrence was buried in a cemetery along with other dead babies in a large unmarked grave with multiple crosses everywhere.

One hour on this earth left my mother in total devastation for her lifetime.

And she withdrew from the joys her daughters eagerly wanted to give her.

My sisters and I somehow raised ourselves. We survived.

Dad climbed the corporate ladder with IBM. Dad bought the big house, the lake house, and the matching boat. He had several infidelities, and his drinking eventually surpassed “social drinking.”

What made mom miserable and vacant was all of the above.

But grieving the death of a baby or child is considered the ultimate tragedy.

There was no “hotline.” There was no bereavement support group. Psychotherapy was looked down upon.

And so she existed day after day, year after year, mentally bypassing our growth and development, our proms, our high school graduations, and college graduations and marriages and grandbabies.

She housed herself in until her death.

On my mother’s death bed as she was dying some of her last words to my father were, “Joe, do you have the baby? Where’s the baby?”

I cried at my mother’s funeral.

I cried for the mother I never had.

As John Lennon once sang: “Mother, you had me, but I never had you.”

Denial and rationalization will not save you from a heart attack

Originally published on KevinMD

Smoking was cool. And he started smoking at the age of 15. Two packs a day — every day.

When he was 32 years old, we had our first-born son. And he decided to quit cold turkey.

But the damage was done.

Somehow, someway, it would catch up with him in devastating ways.

By the time my husband was 66 years old, he developed shortness of breath and chest pain. With exertion and without exertion.

Greg, my husband, was a health educator. A computer guru. A real “cerebral.”

And he knew “everything.”

Sometimes it’s not good to think you know everything.

Even when I — his wife, an ICU nurse of over 30 years — said to him, “You’re having a heart attack,” his response to me was not to cause trouble, and he would handle this.

He called his internal medicine doctor and was put on nitroglycerin. And the medical office said: “See you next Wednesday.”

I mentioned to him that no medical office tells you to come to their office the next week when you are actively having symptoms of a heart attack.

I was hushed and silenced by my husband.

I knew nothing. He knew everything.

As he ate his nitroglycerin like candy.

After a few days, he decided he couldn’t stand the pain any longer.

The medics picked him up in the middle of the night. His 12 lead EKG was perfect, but his troponin blood level was sky-high.

The cath lab team was called in, and my husband received his diagnosis: 95% LAD, the “widowmaker” it’s called.

The cardiac surgeon stated that a 15-minute delay from when he got to the hospital — he would have been dead.

Another heart attack would follow: circumflex 90 percent, RCA next in line and more stents were placed.

His final diagnosis came: liver and pancreatic cancer eventually with mets to his lymph nodes and lungs.

Was it the two-pack-a-day cigarette smoking or the large three glasses of wine a day that led to heart attacks and cancer? Did his cells form irregular cells and mitosis occurred? Maybe.

When you are haphazard in your lifestyle, and you think you are infallible and you will live forever; you slide down that slippery slope.

Denial and rationalization are your enemies.

Look in the mirror at yourself when you smoke those cigarettes or vape those oils into your lungs or drink that bottle of wine or case of beer per day.

It will catch up with you.

But it’s your choice.

Classic symptoms of a heart attack are:

1. Chest discomfort, pain, tightness in the chest
2. Nausea, indigestion, heartburn, stomach pain, may even vomit
3. Pain that spreads to the arms usually the left arm but can be both
4. Feel dizzy or lightheaded
5. Throat or jaw pain
6. Easily exhausted
7. Snoring loud, gasping, choking-sleep apnea
8. Sweating — cold sweat for no obvious reason
9. Cough that won’t quit
10. Your legs, feet, and ankles are swollen
11. Irregular heartbeat

Call 911!

Denial and rationalization will not save you.

My husband died on September 11, 2017, due to liver and pancreatic cancer with mets to lymph nodes and lungs.

His ashes were spread over a mountain top.

He was a father, a husband, a brother, a son, an uncle, a grandfather.

He was 68 years old.

It’s your decision.

That’s why I became a nurse

Originally published on KevinMD

My anger rises when I see the TV “nurse” with her short white dress and her breasts spilling over her pronounced cleavage and her submissive voice speaking to this muscular male MD.

Her quick giggle and pretentious demeanor is a stereotype portrayed across the land. And the reality of what we really do goes unnoticed.

We have people shouting:

“Bring me a coke!”

“A blanket, hurry up!”

“The food is too cold … the food is too hot.”

“Hold my penis in the urinal because I can’t find it.”

“I’m allergic to everything but Dilaudid.”

Disrespect. Spitting. Yelling. Scratching. Hitting. Cussing.

And the waitress-like image comes across the screen and blends into reality — into our hospitals and emergency departments and intensive care units. And the degrading and harassment and the intimidation tactics and workplace violence scream at us.

And you want to end this incredible vicious cycle.

And you wonder why in the hell did you ever go into nursing?

And then there is that one person. That one patient. He’s old but not too old. And he’s just been given the death sentence.

And you want to hug him and hold his hand. Cancer ravaged his body, and he doesn’t have a chance. And he knows it, and you know it. But he’s thankful and appreciative and asks for forgiveness for “bothering” you.

And I want to give him a new lease on life — new body — because he is one in a million.

One in a million that makes you stop and think and cry

And say out loud:

“Oh, that’s why I became a nurse.”

Go quiet into the night

Originally published on KevinMD

I know what you’re thinking: She’s cold-hearted, cruel, and unkind.

But am I? Or are you?

Grandma Lilly is 87-years-old and in the ICU. She’s on a ventilator with her wrists restrained to the side of the bed. Grandma can barely see because her eyes are puffy: scleral edema. And her heart races: 140 beats per minute. Her blood pressure is low and Levophed and vasopressin drips are ordered.

Her family can’t talk to her as she phases in and out of existence. For her, end-stage renal disease means dialysis. And respiratory failure equals ventilator. She’s a brittle diabetic with uncontrolled fluctuating blood sugars.

Grandma Lilly can’t eat, and we feed her by a tube that goes into her nose and to her stomach. Tomorrow, she gets a PEG tube surgically inserted to feed her. She’s been on the ventilator too long.

Next comes the ICU package: ventilator, dialysis, pressers, restraints, trach, PEG tube.

Any second of clarity or awareness is pure brutality. There’s no pretty ending to this torture except through death.

Poor Grandma Lilly.

Oh, the memories! When we were kids, we’d chant for Grandma Lilly. She’d snuggle us up in that rocking chair and read books to us. Let us splash our feet in the puddles after a misty rain, built sandcastles at the beach, and gave us candy when momma said no.

She was our heart and soul, and we wanted her to live forever. But we don’t live forever.

There’s cruelty in putting an 87-year-old with multi-system organ failure on a ventilator; restrained, medicated, disoriented, and wishing for the tunnel to the hereafter.

“The choice can be yours”

Your memories will live forever.

The ventilator. Churning inspiratory and expiratory breaths … day after day as Grandma Lilly wishes for death.

Grandpa Joe is two doors away from Grandma Lilly.

He’s going to die too from cancer. But he’s led a good life. And he’s cognitive enough to say he wants to die peacefully with his family and his dog Rufus by his side.

Grandpa Joe is a DNR/DNI and has requested to be “comfort care.”

He is given a morphine drip that flows slowly through his vein for his excruciating pain from cancer.

He breathes slowly. But he’s happy and pain-free and surrounded by love. His room is dimly lit. Music seeps out and fills the ICU hallways. Frank Sinatra, Nat King Cole, Ella Fitzgerald and Billie Holiday.

A Boy Scout and an Eagle Scout, he was the only one in his family who got a college degree. We loved his campfires, the stories he told, the wisdom and gentle guidance. And here, his family sat around him. Good old Grandpa Joe. What a life filled with love. They held his hand as they told their loving stories of Grandpa Joe. They laughed and silently wept. Tears of love and happiness and letting go but knowing the pain and suffering of his cancer would be over with soon.

After several rounds of CPR and cracked ribs, little Grandma Lilly died.

Grandma Lilly left this earth tied down like a captured animal.

Grandpa Joe left this earth with quiet whispers of, “I love you.”

The choice can be yours.

Go quiet into the night.

This is our last dance.

Comfort in my final hours

Originally published on KevinMD

My name is Lucy.

I have stage IV liver cancer. I wanted everything done — even though the doctors told me this disease is terminal. My family, my church and my friends were praying for “the cure.”

Though I believed in God and the hereafter, I wasn’t ready to go. 74-years-old with beautiful children, grandchildren, and a great-granddaughter.

I woke up confused. In the background — wherever I was — I could hear music: “How great thou art.” One of my favorites.

I had a tube in my mouth, and I couldn’t talk. My wrists were restrained, and I couldn’t move. They had me tied down. Everything was blurry. My chest hurt like someone had pounded on it. People in white coats and scrubs surrounded me. I became aware that I was in a room with doctors and nurses and respiratory therapists.

A man introduced himself. He said he was a respiratory therapist, and he was going to pull the “tube” out of my mouth. The endotracheal tube. I gasped and took a deep breath, and I could barely talk.

The team explained to me that I was in the ICU. And because I wanted everything done to me, I had been emergently intubated, restrained, pain and sedation meds given through my veins continuously. My heart decided to stop, and “the team” did CPR on my fragile body. Because by now, I didn’t want to eat. I had lost over 25 pounds from the liver cancer.

I was told that some of my ribs cracked during CPR. I had pneumonia.

A palliative nurse came to talk to me within a few days. I wasn’t out of the jungle yet.

The palliative nurse talked to me about comfort, about acceptance, about peace and being pain-free and being with my family and friends surrounding me.

Comfort care. DNR, DNI.

New words for me.

I was so sick, so tired, so much in pain. I led a wonderful life.

Now, it was time for acceptance.

I remember those words from my doctors: terminal, no cure, palliative chemo … extending your life.

But at what cost?

Was it worth staying in an ICU in a comatose state? Was it worth having your chest beaten on with CPR and cracked ribs and pneumonia set in? Was it worth being tied down?

I knew the answers.

I was always stubborn. But maybe it was time for acceptance.

Maybe the prayers being sent my way were meant for a peaceful death. A peaceful entrance into the heavens.

I called my family in with my physician, my nurse, and the palliative care nurse.

I begged my family to please not put me on a ventilator again.

Please let me be comfortable.

Please make me comfort care.

DNR and do not intubate and do not treat.

I slept quietly going in and out of consciousness. My sons and daughters gathered around. They laughed and cried and told many fun stories of when they were young! My grandchildren and great-granddaughter held hands as they sang “Yes, Jesus Loves Me.”

Another favorite of mine.

And their tiny voices uplifted me and my soul.

I was surrounded by love.

This time — I was ready.

My husband was dying. I was being ignored.

Originally published on KevinMD

It was a long December.

A few years ago, my husband of 37 years got his death sentence: recurrence of liver cancer with mets to his lungs and lymph nodes.

He had a “Whipple” — a surgical procedure for pancreatic cancer — on Dec 24, 2015, and the surgeon discovered liver cancer too. So it was a 16-hour surgery. We were told he might die on the table.

His eyes haunted me as I kissed him good luck for surgery. I didn’t know if this was our last moment together.

The surgery was successful, and chemo and radiation followed along with two heart attacks.

95 percent LAD and 90 percent circumflex the next year.

Each time I told him that he was having a heart attack, he would let me know that I was just causing trouble.

I never professed to be a cardiac nurse, but I knew my cardiology 101 quite well! But he maintained his arrogance and maybe his denial as he chomped away on his sublingual nitroglycerin like it was candy.

For the last six months before his new diagnosis of recurrence of liver cancer, he stayed in bed almost 80 percent of each day. There was excruciating pain in his abdomen. Narcotics would only help a little.

I instinctively knew his cancer was back, but nothing could prove it: The CAT scans were negative, MRIs were negative. But then, his liver function tests jumped up — he became extremely jaundiced.

A simple ultrasound — one of the least expensive and simpler scans — finally proved what I thought: recurrence of liver cancer.

Two drains under interventional radiology to his liver would follow. And finally, a stent placed to his liver.

He didn’t eat, and he lost over 25 pounds. The stent stayed in place, but the cancer grew larger as it spread frantically throughout his body. This left him in a skeletal state, jaundiced, barely able to talk or to walk.

And this man who was the best father to our three children, who loved his granddaughter and our daughter-in-law, who faithfully took care of his mother until her death, who was an advocate for the underprivileged, who was a leader in the under-privileged community, who worked diligently at the health department as an educator and producer and director of health films and co-founder of a health care film festival throughout the U.S and became a partner to assisting in establishing the same in England, who joyfully took our children’s friends into our house and treated them as if they were his own and took them on vacations of cruises and fun parks and beaches and volunteered with our church youth group teenagers in white water rafting events and seeing these young people off on a mission trip to Ireland to promote peace and love and encouraged education to the most underprivileged …

This man who I deemed as the last hippie on earth lay in a hospice bed restless receiving morphine and Ativan.

And I wish his suffering would end because this is not a life.

It’s been a harsh two years. Many miles of driving back and forth to many doctors: oncologists, psychiatrist, surgeon, interventional radiology, CT scans, MRIs, palliative pain MDs, healing hands, internal medicine — and I’d begged for a DNR. I’d beg for hospice. I was told I had no say so as long as my husband said he was waiting for a cure. He wanted everything done. And I frantically explained: “Your ribs will crack with CPR, your body is too fragile, you’ll end up on a ventilator and your wrists will be tied down and restrained, and then you will die anyway.” Nobody listened.

His surgeon told him “We’ll do palliative chemo, and it’ll wipe this cancer out that has come back to your liver and lymph nodes and lungs. You’ll live another three to five years.”

And his oncologist said, “We will do palliative chemotherapy, you can handle it.”

And they demanded that he ate well and take 20 meds twice a day and take insulin on his frail body that he refused to nourish.

It was those false promises I resent from the medical profession. I told the MDs what they promised was not true. Why are we doing this?

And I was shunned and disregarded. But I knew the truth.

And here he lies in a hospice bed waiting for death with a quickly deteriorating body and mind that doesn’t know our names or his name. And we scrambled to adjust and prepare … because the truth is only five percent of people with liver cancer diagnosis survive this deadly cancer within five years.

There are no miracles.

I beg the medical community to be honest and upright and stop the fairy tales and false assumptions that everything will be fine.
False promises lead to more heartache.

I’m asking for truth.

I just wanted truth.

My husband passed away peacefully at 2:20 p.m. on December, 11 2017.

He fought the good fight, and as always we all wished we had more time left.

She asked for comfort

Originally published on KevinMD

Mom. She was a feisty 100 percent Italian, straight from New Jersey. Her dad, straight from Italy, was a tailor and made the finest suits for New York and New Jersey businessmen. Mom learned this trade well. She could sew some of the most beautiful tailored suits for herself. She loved to cook and every night was a banquet, a feast which required up to 2 hours of clean-up time by us kids. The food was always delicious; the clean-up was always dreadful.

Mom loved the dinner parties she gave for Dad’s fellow businessmen from IBM. And she adored Jackie Kennedy. She wore her hair like her, dressed like her, as many women across the USA did in the 1960s.

Mom went back to school in her 50s and earned a bachelor degree in teaching. Soon to quit that job after her junior high school kids climbed out the windows when the end of the year dismissal bell rang.

Mom was pretty healthy, high blood pressure, high cholesterol, but always manageable. When she turned 60, she started to have rectal bleeding and abdominal pain. And her once “well nourished” body soon started to lose weight. After a visit and a colonoscopy from her physician, the biopsy showed cancerous colon cells. Soon after that, she was diagnosed with colon cancer.

A colectomy was performed. A segment of her colon was surgically removed. And the surgeon triumphantly announced, “we got all of the cancer.”

One year later, the abdominal pain returned. The liver was suspected. And with a CT scan, a large tumor in the liver was found. She went to a large hospital Institute. The best of the best. The experts. And the surgeon told her there was nothing they could do for her. The tumor was so large it was not operable. What about the “we got all of the cancer?”

Unpredictable, those cancer cells. No one ever really knows when they got it all. A sad truth. The surgeon said, “Get your house in order.”

My father and mother drove home in disbelief. Mom entered a support group therapy called the Can Care Cancer. Unfortunately, she was not alone. She saw small children, young mothers smiling and laughing and bald headed. Each day they had learned to come to grips with their destiny.

Mom did some rounds of chemotherapy but to no avail. The tumor just got bigger. And so after a week admitted to the hospital, she asked to go home. She wanted her bed at home. She made herself a DNR. She requested hospice, and she requested comfort care.

We got Mom home, and she would go into comas, and then wake up. She saw two angels standing behind my one sister. She’d wake up and look out her window and proclaimed, “oh those beautiful dogwood trees” and she’d slip back into a coma. We had to clean mom up; she was unaware of the need for a bathroom. The oncologist told us that if we fed her, we would feed the tumor. The tumor would get even larger and cause excruciating pain. So as a nurse, I understood “don’t feed the tumor.”

But as a daughter, it tore me apart. How hard it is to separate nurse role and daughter role. We three daughters would take turns taking care of mom, along with the assistance of hospice.

Mom woke up one more time and told us of the beautiful angels that were floating around her. I would have never imagined this passageway of death could be so beautiful. Her last words to us were of the angels she saw. And I was comforted by that. She let out a final breath as her arm dropped off the bed. Her once plump body, now very thin. And the wedding ring that she had worn for 43 years … fell off her finger and hit the hardwood floor.

The loudest sound I have ever heard. But I knew mom had landed. Landed into her hereafter.

Peacefully. In comfort. And pain free.