/Our “Silent Song”

Our “Silent Song”

By |2018-11-01T13:38:21-04:00October 16th, 2015|Member Stories, News|

My husband Brian, and I have been married 33 years and have worked together in an 8 x 10 room. Brian has literally been by my side since marriage. When I was diagnosed with Wildtype GIST, we knew this was a journey we’d be taking on together.

My father and aunt died of an extremely rare cancer called paraganglioma. Our link is a SDHB germline mutation. Wildtype GIST currently has no tyrosine kinase inhibitors (TKIs) that help and that leaves us at the mercy of what the next CT scan might show. It is a precarious life lived in three-month segments where at any given appointment the oncologist could announce that the tumors have grown as they always do, and when surgery will be advisable. Two months ago I added another long scar to my abdomen.

Brian has been a musician and artist since the age of ten. When I met him in the early 1980s he was performing at folk clubs and Celtic festivals.

One morning in June, it was pouring rain and he took our daily walk without me. He came back with a new song in his head. I cried when I read the lyrics. This song said he “got it” and my cancer wasn’t about “me” but about “us.”

Brian touched a double chord within me. The power of song expressed what was felt but not said. There are days I just want to SCREAM. But I don’t scream. Not out loud. That is not socially acceptable. The general public doesn’t want to hear about cancer, especially a cancer they haven’t heard of, a cancer that baffles the research doctors.

Cancer is not a singular journey. It is a team effort. No one knows that better than the patient and their caregiver. The patient deals with the real pain, both physical and emotional. The caregiver deals with an equal amount of anguish that includes their fears of watching someone they love in pain. Everyday is an unknown. Will the tumors ever stop? Will planning for the future ever go beyond the three-month CT scan appointment?

Having your marriage partner as your caretaker is scary for both. I have this panic routine before every CT scan where I don’t function for 24 hours because of fear of what the results might be. Brian has to hold my hand tight and say, “No worries,” as we drive five hours up and five hours back in order to see a GIST specialist.

“Silent Song” is the story of how we try to “hold it together” when our world is falling apart. It is a silent song because society as a whole is still scared of the word “cancer.” Brian and I have the real fear of my oncologists telling me “the tumor is in a location where we cannot operate.” Thus SCREAM is a word I can type, but the action behind the word is held in check.

Some songs touch the truth and go straight to the heart. My husband hit the target for me with this one.

 

Silent Song

Waiting for the revelation that may never come
Listening to the explanation told with tangled tongues
Waiting for the day I’m told there’s no more to be done
Waiting is my last horse in the race that I can run

Every hand that I am dealt I have to fold once more
Every time I hear a knock there’s no one at the door
Special is a word that I’m beginning to despise
Special isolates you from your ordinary life

Who hears the scream that make no sound
So few can hear this silent song

Somewhere is the key that’s locked behind an unseen door
Somewhere is the balm to soothe a battered, beaten soul
Time is always running never pausing for one breath
Leaving me behind to try to catch up with the rest

One moment there is sunshine then a fog too thick to tell
If I am walking in this world or crossing into hell
Adding pieces to the puzzle, no more in the box
The picture will not come together, far too many lost

Who hears the screams that make no sound?
So few can hear this silent song

Waiting for the revelation that may never come
Listening to the explanation told with tangled tongues
Waiting for the day when there is no more be done
Strangers fight inside me, when they’re silent I have won

Who hears my screams that make no sound?
So few can hear this silent song

Who hears my screams that make no sound?
So few can hear my silent song
©2015 Brian Freeman, Fifth Finger Music

We live in a world where silent screams come on a regular basis.

There are some personal stories hidden behind the lyrics. I spent summers after my father’s death at the Del Mar Racetrack betting on every long shot hoping maybe our family’s luck had changed.

The term “tangled tongues” arises from how often we have experienced a doctor who is afraid to say what he needs to say. Two weeks ago I told the radiologist, “What is the worst thing you can tell me? I have cancer and it has metastasized. I’ve already heard it.” Then they actually tell you the truth.

When they tell you “There is no more to be done” – those words are our fear becoming real. I heard them when my father had paragangliomas. I’m dreading the day I hear them about my own case.

Two months ago I had major surgery. Today I felt a lump near my breast. Possibly a metastasis? Hopefully- benign. In any case it means more cuts to the flesh and waiting for a biopsy. Once again, I SCREAM the silent scream.

Each one of us has our own silent song. I am fortunate that my husband hears mine.

 

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