Terminal....Does It Mean Imminent Death?

Hearing that my grandson who is now 24 and my daughter have been termed 'terminal' caused the breath to catch in my chest. That word had more power than it should have. It suggested to me that they both would be gone ----way too soon. Having them gone is not something I had ever wanted to consider. But as the years have passed I have come to understand that the world means that there is no cure and it will be something they deal with all of our lives. Once I have been able to view it that way, I have been able to live our mantra----do not miss one single moment of any day trying to second guess the future.

http://pstraubie48.hubpages.com/hub/When-Catastrophic-Illness-Comes-Knockingpart-1

http://pstraubie48.hubpages.com/hub/Cancer-Comes-Knockingpart-2

Hair grows back. So losing it is no biggie, right?? Pretty much. But, when it begins to fall out by the handful, then it is disconcerting. After huge patches of scalp become evident, all over the precious head, it is time to shave it all off.

There are those who allow their thinning hair to stay wearing it like a badge of honor. And that I can totally understand. My daughter decided to wear her baldness as a badge of honor instead. Our motto became "bald is beautiful."

We traveled together to our favorite shop in St. Augustine and bought lovely silk scarves to further adorn her sweet head.

In the picture above, she has just gone through her fourth clinical trial and she can still smile. Smiling with her is our NuNu pup.

The words of Mr. Edison apply so appropriately to the situation in which my daughter and grandson find themselves.

They have refused to give up and give in...despite the years of treatment and uncertainty, they continue to push forward.

And, I am so thankful for that.

Not too many weeks ago, a question was posted by me that read:

Is there a line you should not cross when talking with others?

What prompted me to post the question was the day before I had been asked:

"So, when is your daughter going to die?"

After picking my jaw up off the ground, I responded that what people do not understand is that terminal does not mean the person will die THAT day, the next day, or very soon. It quite simply means that the disease is not curable. Those who are diagnosed as terminal may live only a short time or they may live on for years.

Do not be fooled by appearances. For many of the years that both my grandson and daughter have gotten up each day to face once again CANCER, they have "looked so well."

So often those who knew me well would say those words to me. As in disbelief that those who were so ill could look so healthy It preyed on my mind too. They did not look sick. And often do not now. Until I take a closer look into their faces. And see etched into their faces the pain and scars of the years of fighting to have so normalcy.

There were times that they looked frightfully ill. Too weak to move, too ill to even chat. Huge amounts of weight lost or gained depending on what drug they were taking at the time.

Do not be fooled. Cancer has no look. It is deceitful and cunning.

At the time of the diagnosis, she was told she had about a year to live. There was no way she would survive longer than that. She had had aggressive chemo and radiation and it had made little difference.

But her resolve remained. She would get up every day and embrace it. She remained active in Relay for Life and in volunteering at the American Cancer Society office until she was just physically unable to do so. In the photograph with the hat trimmed with fluffy purple trim, she was heading up a Relay for Life.

She would go in for her oncology visits and the doctor would look at her and say:
"You know, you aren't supposed to be here." And, she would just smile and say. "I know. but I am."

The only way he and other doctors in whose care she found herself told her that it was only a miracle that she was on the planet. Her primary oncologist died last year.

We know why she is here. Angels have followed us all of these years and they surround her and her son and shield them against that diagnosis.

A diagnosis of terminal can turn a family upside down. It can tear at the very fiber of each member in the family. The whole dynamic of the family can change.

For a moment, the telling of this story slows down for a moment and flashes back to the day I heard the diagnosis my daughter received.

By the time she was told her cancer was terminal, we had already been on the roller coaster for 3 years. There hardly seemed much more we could be told that could make our lives any more complex. Cancer had already spread throughout her body. Chemo and radiation had become a part of our lives.

One day my daughter came home from a routine oncology appointment. As I usually did, I asked what they had told her that day. And, she quickly replied. "They told me to party like a rock star."

Zap. Bam. Shudder. All of it internal. Flashback even further to the day 3 years earlier when we were told she had colon cancer. We held each other and wailed. It was not crying. It was wailing. Our insides exploded onto the red Georgia clay and our tears fell in waves onto the ground. And our hearts struggled to stay in our chests.

And, then when there were no more tears, as if we washed the fear away, we began our lives anew. And it has remained so since that time. I told my child that she should never miss one moment of any day from that point forth.

Trying to second guess the future buys not one extra moment. But walking into each new day with the resolve to greet it and find the goodness and joy there, is the only way to live.

I guess you can say that hearing party like a rock star was yet another bump in the road, my daughter would say. It changed nothing. Our resolve remained.

One family member with a terminal diagnosis is one too many. But, some families face this diagnosis with more than one beloved family member. Four years before my daughter was told her years on the planet were numbered, she had been told the same about her son.

She had received correspondence about her son from a doctor. She called to speak with someone about the correspondence. A young man came on the phone and began to talk to her. He said that since her son was now terminal his medical coverage would change

She said, "Wait, Wait, what??? That's my son you're talking about. What did you just say?"

He sort of mumbled and then said, "Oh, M'am. I thought you knew."

That was how she found out of his diagnosis. When she went in to visit his oncology team later in the week, the doctor apologized profusely. The young man was not supposed to break the news to her.

It really did not matter in the long run who had told her. The sting was still there.

This remarkable young boy did not know at that time of the diagnosis. He just knew he felt pretty rotten most of the time but he got on with the business of living. We have often said he taught us how to live. He embraced and still does embrace each day and squeezes all of the living out of he can.

He could moan and groan and wail..."Why me??" But not once has he ever done that. He learned to make his own pathway out of darkness into the rays of hope and light that surround him.

As my daughter's Momma and my grandson's Nanan (his baby brother calls me Nini), some long and winding roads have spread out before me.

Through the chemo, the frequent trips to the doctors, the radiation, the vomiting, the hair loss, the days of being unable to move from a chair because of a weakened body, the hospital stays for both daughter and grandson, the loss of appetite, the dramatic loss of weight, the swelling from the meds, I have been there.

I will not pretend that I have not cried a few thousand tears. I will not pretend that focusing on living one day at a time was easy.

But the reality of life is one day at a time is all we have. When I came to terms with that, it enabled me to wrap my arms around each new day and rejoice. Worry would change not one thing. Worry and trying to figure out what would happen at some time in the future would not add one moment of living to either grandson or daughter.

So, I have chosen to believe that H O P E comes with each new day. Relishing each moment in that new day and the time I have to spend with these loved ones makes it possible to live one day at a time.

When my grandson was younger, he would see his Momma shuffled off to the hospital at all hours of the day and night. He would see her admitted to the hospital and he would visit her each day while she was there.

He would see her come home and be so ill she would spend days curled in a little ball.

It takes its toll on a young life. it becomes more real and more frightening as the young child becomes a young man and understands much more than he did as a little boy.

It has been difficult for him. He does not really talk about it much but when he does we can hear the fear he tries to hide. And, it is okay. It is good for him to share his concern and fear and know that what he is feeling is perfectly normal.

When the new day is about to arrive tomorrow, get up early enough to watch the sun's rays peek through.

• Stop for a second and love and hug those precious to you
• Stop as you rush out of the door and look around your yard.
• Take a look at any beauty nature is offering you.
• Take time to be thankful for the small things in your life that add up to big things.
• Do something unexpected for someone.

Live each day completely and thoroughly EVERY DAY.

Carpe diem...carpe diem...seize the day.

No one knows when their time will come.

A terminal diagnosis means no cure. It does not mean to give up. It does not me to stop living. It means the doctors must tell you what may happen---according to what has happened to others in the past, this diagnosis is what they think you can expect.

It does not mean to go dig a hole in your back yard and get in it. It means to seize the day.

Scream, holler, lose your mind, throw things, swear ---do all of those if you must. Then look life squarely in the face and be thankful that you have today. Be thankful that your loved one has today. It isn't over till it's over. Trite, but true.

My daughter had gone off of chemo for two years as it was killing her faster than her cancers. She has just begun a new chemo today which has been known to slow growth in brain tumors. So, another new attempt to keep this disease from progressing even further.

Each day is a gift. Each loved one is a blessing. Hug 'em and squeeze 'em.

Our lives were turned upside down and inside out with this nightmare that came to us just as I imagine it does for those millions of others who come face to face with catastrophic illness. But then we realized we had a choice to make about how we would live. And we have chosen to love each other TODAY because no one is guaranteed tomorrow.
Each time some new, scarier part of this hellacious disease raises its ugly head, we swerve a little, crash and burn a little and then dust ourselves off and go forth .It renews our determination to bathe ourselves in the joy of all of the things we may otherwise take for granted---precious moments just enjoying watching baby grandson discover, problem solve, and play is just one part of that loveliness.

You see there really is too much wonderful in each day for us to be stuck in the grips of worry and fear. A diagnosis of terminal for this family was really a wake up call.

The whispered words came to us--- Before it is too late, find what really is of value and immerse your lives in it.

And, that is our goal each day. It has become a way of life, it comes with the dawning of each new day, without thought: It is a part of who we are now.