Journeys

Personal Journeys

by Bruce Shriver

From time to time, we highlight in ESUN some of the new entries that have been made to our Journeys page. Each of us — whether patient, family member, friend, or a member of the medical team — journeys down the road dealing with cancer along a different path. Our personal journeys are filled with our own hopes, fears, anxieties, concerns, dreams, needs and expectations. We publish accounts of these journeys. Some of the accounts are written as essays, others are poems, while others are photographs of paintings, drawings, or sculptures. In this issue, we highlight new entries by Rachel Baumgartner, Stephanie Remsing, and April Brenneman.

Rachel Baumgartner

[Editor's note: Rachel, a survivor of a rare sarcoma called Askin's tumor, has shared some of her poems with us before (see Poems Along the Way). She now gives us several more gifts: three of her poems and two of her drawings.]

Spots

December 9th, 2006

Spots-

Good on a shirt

Or a dog

Bad on an x-ray-

An x-ray of mine

In my lung

By my tumor beds

And they are new

Bad when they puzzle

The doctors

Most of all

Why or how I have

Not been as upset

As expected

Escapes me

It is easier

To ignore

Than go "there"-

To the scariest place

I know.

Wondering

December 10, 2006

Sometimes when I am walking around

I think and wonder

What others might perceive

When they look at me

Or through me

I forget that my hair is long

Sometimes I still feel

Like that bald-headed cancer girl

My self confidence was damaged

All those years of stares and whispers

Rumors and so much missed

The deep scars and memories remain

They are just more hidden these days.

A Miraculous Gift

April 19, 2007

Life-

So complex, yet so simple

So many wonders

And disappointments

It does not stop

When I need to catch my breath

It keeps going and going

So much to do

I use way more energy

Than I have in me

But I must do it

This way

Because my life here,

My time here,

Is precious-

A miraculous gift

From above

First Drawing: Pain

From Rachel: This is a charcoal and pencil drawing about the pain and scared feelings I felt this summer when they found a spot in my back and I thought maybe I was relapsing.

Second Drawing: Beautiful

From Rachel: This is a drawing of a bald woman with my "personal symbol", a dragonfly on her head. It's actually the exact dragonfly on my favorite ring (besides my engagement one).

Stephanie Remsing

[Editor's Note: Stephanie, a rhabdomyosarcoma survivor, wrote this poem when she was 12-years old. She is 15-years old now. Her Mom and Dad told me. "This was written during Stephanie's lowest point during treatment. Down to 45 pounds from 62 pounds, bedridden, unable to eat, barely able to see, and being fed thru a g-tube. We think it was her inspiration of hope, that she was going to win the battle."]

I Won

What are you looking at? Haven’t you ever seen the face of a survivor before?

Have you never seen the face of a real winner?

For over a year, I fought a long and valiant battle of a deadly cancer that had taken over my body, and I WON.

There was a time when I could neither eat or drink, because of the radiation and

chemotherapy affects on my body, and I dropped down to 42 pounds. But I fought a long

and valiant battle, till I was able to eat and drink again, and I WON.

There were times I was hospitalized for extended periods of time, because of an infection

that normally would not be serious, but because of my depleted red and white blood cell

counts, could have been deadly for me. I fought a long and valiant battle, and I WON.

For over a year, I was very sick, nauseated, on a daily basis, usually all day long, but I

fought a long and valiant battle, and I WON.

I went thru a period of time where I had to literally fight for each and every breath I took,

but I fought a long and valiant battle, and I WON.

I went thru a period of time when I could not walk because of the affects of

chemotherapy on my body, but I fought a long and valiant battle, and I WON.

I went thru a period of time when I was unable to speak, not even to tell my Dad and

Mom just how much I loved them, but I fought a long and valiant battle, and I WON.

For 28 straight days, my head was bolted down to a table, so that I could not move during

radiation treatments, but I fought a long and valiant battle, and I WON.

I went thru a period of time when it was almost impossible for me to see because of the

effects of chemotherapy on my body, but I fought a long and valiant battle, and I WON.

I went thru many initial diagnostic tests on a daily basis for over a week, scared to death

because I did not know what was happening, but I fought a long and valiant battle, and I WON.

I went thru a period of time when I did not know if I was going to be alive to see my Dad

and Mom the next day, but I fought a long and valiant battle, and I WON.

My hair may be a bit shorter than yours, but I am very proud of each and every one of

them, because each and every one of them show you I WON.

I still wear braces on my legs to help me walk because of the affects of chemotherapy on

my body, but I am walking, because I WON.

I am a survivor, and I WON.

April Brenneman

[Editor’s Note: April Brenneman is the mother of five children, including 7 year old Josh, a Ewing’s sarcoma survivor who lives with a tracheotomy, g-tube feeds for extra nutrition and daily thyroid medicine as a side-effect of the radiation he received. See also "Josh's Tree House" which appears in the Stories of Courage & Hope Column of this issue of ESUN.]

Heaven and Hell

I know what hell is like...and I've seen glimpses of heaven too...

Hell is watching your child suffer terribly and NOT being able to do anything about it. Hell is hearing the words "round blue cell and sarcoma" in the same sentence with your 4 year old son's name. It's pale, skinny, baldheaded children with little energy trying to play in the waiting room of a pediatric oncology clinic. Hell is hearing all about the damaging side effects of chemotherapy and radiation, both long and short term, from the doctors and knowing you have no choice. It's wanting to pick your baby up and run...but where? To whom? It's not being able to watch that first dose of toxins being pumped into your baby’s body. Hell is holding your screaming child down for needle pokes and IVs. It's fighting insurance companies for every penny and mixed up communication with hospital staff and children with feeding tubes and yellow plastic tubs for vomiting. It's crying for eight months straight and knowing your life and your child's life will never be the same. It's finishing treatment, and then grieving the damage done to your little boy's body, but being grateful he is alive. Hell is watching some of the other childhood cancer children around you die and being thankful it isn't your child...yet grieving the loss deeply...and feeling guilty...

I've seen glimpses of heaven too...

Heaven is the love and care poured out by neighbors, friends, strangers, the church and the community so much so it could never be repaid. Heaven is a kind shoulder to cry on, ears that are listening, hands that show up to grocery shop or clean the house or drop off a meal or drive your other children somewhere. Its people coming together creating fundraisers to help with medical costs and foundations created through loss that help pay the bills. Heaven is free family camps, doctors who cry when a child they’ve treated dies and nurses with a gentle touch. It’s that special childlife worker who goes out of her way to help your son make a Spider Man costume. It's the smile on your son’s face when he's given a toy even though he's too sick to play with it. It's the chemo pals and the art therapists and all the children and their families who show up for the "end of chemo" party! Heaven is the people who encourage your child to dream big, and then actually make that dream come true! Heaven is the love that is shown to a suffering child and his family over and over again, day after day, week after week, month after month and year after year...

We welcome accounts of personal journeys of all forms. Knowing others are experiencing some of what you personally are going through can be of great help in confronting cancer. Please consider sharing your journey or that of a loved one or friend by contacting Bruce Shriver.