Cancer Schmancer

"You look like a cancer patient."

I say that every time my husband gets a haircut.

I used to say things like...

Oh dont think you are going to die and leave me with all these kids.

It may not sound funny to you.

In fact you may not think Cancer is funny at all.

But let me tell you something, for a few months in 1993, I had the funniest cancer jokes you would never hear.

I cant remember even one of them now but a few weeks ago when we thought the cancer may have come back... so did my comedy routine.

I am not sure what makes me funny when Cancer is around. I guess it is my way of saying Screw You Cancer. I am still laughing and you cant take that away.

I got married when I was 18. I had my first child at 19, my second at 20, my third at 25 and my fourth at 27.

The only reason I got to have a fourth child is because of Dr. Boland, the GOD of our world.

Dr. Boland saved my husbands life.

From a cancer that had only affected 8 people at the time.

It is called synovial sarcoma and it is very rare.

My husband, Patrick, was my high school sweetheart and is the love of my life.

I met him when I was 13, became friends with him at 15 and started dating him at 16.

He joined the Navy so we could have a better life and I couldnt wait until we could finally be together.

In bootcamp he hurt his hand doing drills with his gun.

The Navy doctors diagnosed him with everything from tendonitis to "it's all in your head" itis.

The pain got increasingly worse and he started to avoid using it.

At one point a doctor prescribed steroid shots and they injected his tumor with miracle grow.

Some Captain decided to operate because it was swelling up and he pulled out a fatty mass that they still claim wasnt cancer.

Captain Idiot operated on a Friday morning, went to his retirement ceremony that afternoon and left the Navy.

He never left any instructions for the hospital personnel so they never gave Patrick any pain medicine after the surgery.

When I got there to visit him after the surgery he was screaming in pain. The officers who were doctors, RN's and other nurses said "Stop screaming and address me as sir".

He was completely denied pain killers and the bandages were never changed because... it didnt say that in his papers.

So 2 weeks later when he went back for his follow up, he had gangrene in his hand.

He needed another surgery to fix the damage.

Only in the past few years have we discovered that this is what most likely caused the cancer.

The pain never went away and he stopped using his hand completely. He started to have back trouble because his whole left side was atrophied.

Another doctor thought he could fix it by operating again.

After surgery #3 we decided the medical care of the United States Navy wasnt for us.

He faked being well to stay in until he completed his four years.

He was given an Honorable Discharge from the United States Navy on March 5th 1989.

The pain in his hand got worse and worse until some days it was unbearable.

He sought medical care at Stony Brook University where without an X-ray or Cat Scan they began physical therapy and more injections into what we would soon find out was a tumor.

I was 9 months pregnant with my third child when we ran into our doctor at a Lamaze Class. He told Patrick to come and see him about the hand. He recommended him to a hand specialist who took one look at it and said this is scar tissue and we need to fix it.

My daughter was born June 7th 1993 and on July 14th my husband went into surgery for the fourth time.

I told him it was just so he didnt have to change any diapers and I thought it was a ridiculous plan to get away with that.

On July 15th, the doctor called me at home and said "Uh, Um, Uh, I dont know what this is".

I was so confused.

He said "Well we should test this just to be sure"

Test what I thought.

Like a tumor I said.

Yes.

Ok go ahead, I said.

I didnt really believe it could possibly be cancer because people do not have cancer for 9 years just laying dormant in his body. Cancer would have killed you by then, right?

Each time we visited the hand specialist we waited for the results, but these things take time they said.

One visit I was nursing Daughter 3 in the car before we went into the appointment.

Patrick said he would go in and wait for me there.

No no I said wait for me.

No we are late anyway I will just go in I will probably be done before you.

When Patrick arrived without me Dr. Liebowitz said "Where's Nancy?"

In the car.

Lets wait the doctor said.

No go ahead said Pat.

Dr. Liebowtz started to cry.

Wow that is never good.

By the time I walk in Dr. L is crying, Pat is as white as a ghost and I have no idea what is going on.

Dr. Liebowitz tells us the name of the cancer and we dont hear anything after that.

Synovial Sarcoma blah blah blah..

He tells us that if he or anyone in his family had cancer he would go straight to Sloan Kettering.

He picked up the phone in his office and called Sloan Kettering and we had an appointment in three days.

That is when we met Dr. Boland. He is a tall, white haired man with an Irish brogue.

He wanted to run his own tests but he thought Huntingon Hospital probably got it right.

This cancer is very tricky he said.

It lays dormant in your body for a long time.

Then it spreads, quickly.

We didnt know then if it had spread or if it was contained in his hand.

I wanted to know the worst case scenario but Pat and our dads werent so sure.

Lets wait, they all said.

No I want to know what to expect.

Dr. Boland said "Well we probably wont have to amputate the whole arm, most likely just the hand or up to the elbow"

I was shocked to find out that amputation was still being used as a way to treat anything.

What about chemo, radiation...

That doesnt work on this kind of cancer.

It has to be cut out.

He went for a million tests and scans.

All the news was good from the initial diagnosis.

The cancer hadnt spread, it was just wrapped up into his pointer and middle finger in his left hand.

He had surgery on August 17th 1993, getting out of changing diapers indefinitely at that point.

At the time of surgery they didnt know how much cancer was in there. If it is too far into his hand we will take the whole thing until we see a clear margin.

He ended up having two fingers and half of his left hand amputated.

He was an electrician and thankfully worked for an incredible company that allowed him to come back slowly and figure out how to wire neon signs without fingers.

It has been a struggle.

Synovial Sarcoma is a cancer that never stays away. In other cancers you feel somewhat safe at 10 years. This is when synovial sarcoma comes back.

He has gone to see our GOD Dr. Boland in Sloan Kettering first every 3 months, then every 6 months, now every year.

At last years visit, Dr. Boland said you know its been 15 years and I thought we could say goodbye to you but we just had someone have a recurrence after 15 years.

The survival rate of this cancer was .17 percent. It has gone up a little over the years but still...

I tease him all the time, is that just you?

Cancer has changed Patrick's life but it has changed our whole family.

Our fourth daughter knows she wouldnt be here without Dr. Boland.

I know this story is long and I am thankful to anyone who took the time to read it.

I could go on and on with so many stories but there is just one lesson I want to share.

Healing Lesson #1

Cancer has changed our lives. There was a time when getting stuck in line would freak me out and I would be so annoyed. I try now to always just be grateful for the moment. For the chance to spend time with the ones I love and know that they may not be here forever. Life is too short to worry about things that you cannot change.

When the cesspool backed up at 2:30pm on Christmas Eve, we laughed, called desperately until we found someone nice enough to come over. When our daughter, weeks after she passed her road test, backed one of our cars into the other in the driveway on her way out to get oreos and milk, I laughed. And when I stopped laughing I realized the real tragedy. "You arent going to get oreos now are you?"
Then I cried.

I cant teach anyone to appreciate life like I have learned to with the love of my life almost being taken from me. All I can tell you is that if you knew the person you loved would be gone tomorrow would you be so quick to yell that he didnt change the toilet paper roll or dragged mud in on his shoes?

There is always a chance his cancer could come back. He has two lumps in his arm right now that they are monitoring. Any day our lives could change and we could be back to spending our days at Sloan Kettering waiting for test results. We never know and that is why we make every moment count.

When we cut out of work early or spend our entire savings on a vacation, when we spend our last dollar on going to a movie or taking the kids for ice cream... I know this is the right thing to do because I am sure that if I found out tomorrow that I only had a week to live I would not wish that I spent more time at work or saved a dollar and missed out on making a memory, which may be all we have left after someone is taken without warning.

Here is picture of Patrick on our recent trip to Jamaica. You can see where his fingers were amputated. We went to celebrate, 25 years together and our oldest daughters graduation from college, our second daughters return from a semester in Spain, our third daughters Sweet 16 and our fourth daughters graduation from middle school. It's all good and even when our flight was delayed and they lost our luggage and it rained every day... we were together and no cancer could ever take that away.



If you are ever looking for a charity to support please donate to Sloan kettering. You can click on the link above to see their website. They saved my husbands life and they made the journey as painless as possible. They are truly wonderful people who run an amazing hospital.

Not sister by blood but straight from the heart

Sisters By Heart

It was 1989 when I first heard the words Hodgkins Disease.

"What is that?"

CANCER...!!!

It's Cancer?

The Big C word?

How can an 18 year old girl who is just beginning college have cancer?

It started with night sweats and a small lump in her neck.

The doctor's suspected right away it might be cancer.

A biopsy confirmed it.

Before the days of internet, you had to look things up at the library.

I think that probably protected us from all the information we really shouldn't have.

She had her spleen removed, a somewhat radical approach to hodgkins disease but one that ultimately saved her life.

She had radiation, she was sick, some of her hair fell out.

She kept going to college though.

And she only lost one semester.

She wasnt my sister by blood but instead by marriage.

My sister in law.

A girl I had known since she was 12.

She got better.

She graduated college.

She got married.

And yet somehow her life took a horrible turn later on, and it had nothing to do with the cancer.

For more information on Hodgkins Disease please connect to the link above.

Queen No one but you, only the good die young

The Phone...the phone is ringing

The first time I knew the phone could bring bad news was in 1987.

My daughters first Thanksgiving.

My husband was in the Navy and stationed in Florida and so we were celebrating alone, just the three of us.

We could barely afford a turkey and some potatoes but we were excited and thankful for what we had and we were looking forward to a very special dinner.

Before the days of caller id we just answered the phone to see who it was.

"Nan its your dad."

"I already spoke to my Dad, what does he want?"

Seriously thinking they wanted my recipe for the best gravy in America, I hurried to the phone.

"Hey Dad, What's up?"

"Richard was killed by a drunk driver, I am only telling you now because I know you are supposed to see Grandma and Papa tomorrow and they are already on their way to the airport to fly up here."

Richard Kalderon, my only boy cousin, older, wiser, artistically talented, loving, gentle, sweet, funny...

Gone in one blink of an eye.

A drunk and drugged driver right through a traffic light a block away from his house. At one in the afternoon.

Richard had a trunk full of groceries for a family that couldn't afford a Thanksgiving Feast. He was delivering it to them so they could have a happy Thanksgiving.

My aunt was on her way back from the store when she saw the horrible accident.

"Wow, that looks like my car" she thought.

She stopped to question the police officer.

"Is everyone OK here,I think my son may have been driving that car?"

"No ma'am, this car is registered to a woman."

She drives home frantically, believing she will see her car in the driveway and all will be fine.

No such luck.

She drives back to the accident and asks the officers where the injured were taken.

She drives to the hospital, knowing that she is just being overprotective, that he must be OK, that this is all a mistake.

But when she arrives at the hospital her greatest fears have come true. It is her precious son just weeks away from his 24th birthday.

He is gone.

He was a Christmas Baby.

An angel you might say.

Newsday wrote a huge article about him.

He had recently taken over my uncles store Danny's Rideaway in Levittown. He started a club so kids could come ride their bikes safely in his parking lot. He reached out. He touched lives.

For such a short time, but forever in our hearts.

Please visit the above site for MADD. They are a wonderful group who has done so much for drunk driving awareness.

The Journey

This is an intensely personal journey for me as I recollect about the tragedies that have been a huge part of my life for so many years. I don't want you to think that I am stating that my life is bad or that I think that I am the only one who has undergone life changing events. This journey is mine to tell and I share it with you for my own healing. Please feel free to comment on any posts or share your own stories with me.

I love to write... short stories... poems... blogs... letters...I love the physical aspect of writing... I do calligraphy... and the emotional feelings that surface when I write... I cry often... This project is something that I feel will connect the words that are forever in my head and my heart and the love I have for the people that are in my world.

This is me...

Healing begins with the story of the Dragonfly

Down below the surface of a quiet pond lived a little colony of water bugs. They were a happy colony, living far away from the sun. For many months they were very busy, scurrying over the soft mud on the bottom of the pond. They did notice that every once in awhile one of their colony seemed to lose interest in going about. Clinging to the stem of a pond lily it gradually moved out of sight and was seen no more.
"Look!" said one of the water bugs to another. "one of our colony is climbing up the lily stalk. Where do you think she is going?" Up, up, up it slowly went....Even as they watched, the water bug disappeared from sight. Its friends waited and waited but it didn't return...



"That's funny!" said one water bug to another. "Wasn't she happy here?" asked a second... "Where do you suppose she went?" wondered a third. No one had an answer. They were greatly puzzled. Finally one of the water bugs, a leader in the colony, gathered its friends together. "I have an idea". "The next one of us who climbs up the lily stalk must promise to come back and tell us where he or she went and why."
"We promise", they said solemnly.

One spring day, not long after, the very water bug who had suggested the plan found himself climbing up the lily stalk. Up, up, up, he went. Before he knew what was happening, he had broke through the surface of the water and fallen onto the broad, green lily pad above.

When he awoke, he looked about with surprise. He couldn't believe what he saw. A startling change had come to his old body. His movement revealed four silver wings and a long tail. Even as he struggled, he felt an impulse to move his wings...The warmth of the sun soon dried the moisture from the new body.


He moved his wings again and suddenly found himself up above the water. He had become a dragonfly!!

Swooping and dipping in great curves, he flew through the air. He felt exhilarated in the new atmosphere. By and by the new dragonfly lighted happily on a lily pad to rest. Then it was that he chanced to look below to the bottom of the pond. Why, he was right above his old friends, the water bugs! There they were scurrying around, just as he had been doing some time before.

The dragonfly remembered the promise: "the next one of us who climbs up the lily stalk will come back and tell where he or she went and why." Without thinking, the dragonfly darted down. Suddenly he hit the surface of the water and bounced away. Now that he was a dragonfly, he could no longer go into the water...


"I can't return!" he said in dismay. "At least, I tried. But I can't keep my promise. Even if I could go back, not one of the water bugs would know me in my new body. I guess I'll just have to wait until they become dragonflies too. Then they'll understand what has happened to me, and where I went."

And the dragonfly winged off happily into it's wonderful new world of sun and air.......