Rachel's Story

Rachel, an Askin's Tumor Survivor

Rachel was 15 when she was diagnosed with Askin's tumor at the spine, and she dealt with two recurrences. Her treatments included chemotherapy, radiation therapy, surgeries and a stem cell transplant.

I was playing high school field hockey in the fall of 1998, and my back hurt more and more each day. The pediatrician thought it was from my backpack being too heavy. Then basketball season started and it was hurting even more. One morning I woke up and my feet felt strange. I didn't think too much of it. The next day my legs and chest were numb. We called the orthopedic doctor (since I was so healthy and only broke my arm once). They said it sounded neurological and gave us names of neurologists. Well one could schedule me in a month, another on Monday (it was Friday). My mom was on the phone with my dad trying to decide what to do and the third neurologist broke into the phone line and said he was off that day but to come in anyway. He did some tests and when we returned from the MRI, he had an oncologist, surgeon, anesthesiologist, etc. lined up.

I had an egg-sized tumor pressing on my spinal cord at T3 and T4. It was already rapidly suppressing my breathing and emergency surgery was in order. I had surgery early the next morning. Thankfully I regained all my feeling during surgery. I started chemotherapy within a few days when it was determined it was Askin’s Tumor (in the Ewing’s Sarcoma family) It all happened so fast but I recall comforting my mother and worrying about letting people know about what I was going to miss. From the first minute of this crazy journey, I accepted it and whatever I had to do to get through it, I just would do it.

Treatment

I had emergency surgery December 5, 1998, for my first tumor. They removed as much as they could of the egg-sized tumor but it had spindles that went all over. I did a year of chemotherapy–I had a "lovely" time with VP16 and Ifosfamide every 6 weeks. Then every 3rd week in between I’d have "fun" with juicy red Adriamycin (the word still makes me shudder) and Cytoxan. Vincristine was a weekly event until I had trouble walking in March of 1999 and it was stopped. In March and April, I had 6 weeks of radiation interlaced with the chemotherapy.

I was in remission for 2000. December of 2000 stem cells were taken to store in case I ever needed them. While studying them, cancer cells were discovered. I was more IN than out of the hospital for the next 5 months. Cisplatin and Ironotecan were the drugs of choice this time. June 3rd, 2001, I was admitted for my autologous stem cell transplant. Days of fluids led to VP16, Cytoxan and Thiotepa. I was in for a good 6 weeks and had many complications including layers of skin peeling and internal intestinal linings peeling. I went into septic shock with various infections throughout my bloodstream. I was not expected to make it through, as doctors have said I'm one of the sickest they have seen that survived.

Another year and a half of remission followed. Then, in November 2002, a new tumor was found between my heart, lung and spine. I had already maxed out on a lot of chemo and radiation plus a transplant. Everyone else who ever had Askin’s Tumor and relapsed after a transplant had died within weeks. My prognosis was nonexistent. Months passed and the tumor only grew slightly. I had a tiny bit of radiation and a tiny bit of chemo just to keep me comfortable and help with breathing. During this whole time, my doctors were told by worldwide experts to put me on hospice-there was nothing left to do. A year passed and it seemed stable and not growing. PET scans showed little to no activity in the tumor region. In May of 2004, an amazing cardiovascular and thoracic surgeon took the tumor out safely. It was the size of a small Nerf football. When they biopsied it, it was completely dead. The doctors were baffled and it is a HUGE miracle. It is believed I am the only person ever to survive this long with my type after a relapse after a transplant. I have been in remission for 8 years now and just take it a day at a time–there’s no one to compare me to!

Recovery

I have come a long way but still deal with many long-term side effects and take various medications. I have a weak right lung from radiation, my knees have arthritis, my gall bladder was removed and my thyroid does not work correctly so I take medicine for that. I also have hormone deficiencies and chronic pain in my back and legs along with chronic fatigue. My intestines are damaged from my transplant and give me some problems, although with time it has improved dramatically. Despite all of these possible deterrents, I live a very active and full life. There have been lots of ups and downs physically, emotionally and psychologically in this journey.

Life Now

Rachel with her husbandI received my Associate’s in Interior Design, Bachelor’s in Studio Art, Psychology and Art Therapy. I am currently getting my Masters in Art Therapy Counseling. I am a national inspirational speaker, and I occasionally go abroad. I do art commissions (murals, furniture, t-shirts, logos, canvases, a little bit of everything). I travel quite a bit for cancer-related events and speaking opportunities. I help out with cancer kids’ camps and do things for local and national charities having to do with various aspects of cancer and other causes. I am also a published writer and maintain a blog. I was voted as Glamour magazine’s 2008 Woman of Your Year, which was a very amazing honor. I am always up for helping and meeting new people.

Thoughts for New Patients

Trust your instincts and speak up. Ask lots of questions! Find a doctor you feel comfortable with who is familiar with your disease. You can get through this. Take it a day at a time. Plan little things to look forward to: a trip, buying a new book, whatever it is. It’s key to have things to live for and work towards. Accept that some days are bad and some are good and that’s okay. Surround yourself with people who support you-not ones that bring you down. And don’t ever underestimate hope!

Donate in Rachel's Honor

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Sign Rachel's Guestbook

Signatures in Rachel's Guestbook will appear here. Please share your thoughts!

Nickola Symes 27/03/2014 05:02 am
Hi,

In 1984 I was diagnosed with exactly the same. I endured
endless trials and was told that I had. 15% chance of beating this and at 14 I was one of only 4 other people world wide to of been diagnosed.

The scars still show after 28 years and I have been fortunate enough to stay in remission.

I have 3 teenage children after being told I would be infertile.

Xxxx
Laura 17/01/2013 06:06 pm
Rachel, thanks for sharing. I would LOVE to hear you speak someday. Yes we can have great joy and a full life in spite of the effects of our treatments. Art therapy sounds like a fantastic fit. I wish you the best!!
Craig Guenther 06/12/2012 11:41 am
My Daughter Camryn (12 years old) has the same but in her shoulder. Chemo start this Friday. Thank you for your story...I'm still scared for her.
MiMi Olsson 29/09/2012 03:24 pm
Rachel, you are a miracle...I am going to tell all the people in the Ewing's support group to read your story. You will give so much hope to them. Thank you for sharing...
With Hope, MiMi
Mary 26/09/2012 01:54 pm
Rachel - thank you for sharing your story with us. It has been such a joy to get to know you and spend time with you. The way that you gracefully handle difficulties, and help others handle them too, is something that one has to experience first-hand to understand. I can honestly say I would pick up and go on any adventure with you, whether or not my arm and back were cooperating, because I'm sure we would make it fun no matter what! :)

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Poems Along the Way

This series of ten poems are written from the perspective of a survivor of a rare form of cancer called Askin's tumor. Rachel was diagnosed with Askin's in 1998. There is a brief, introductory comment before each poem to give you some idea of what was happening in her life around the time she wrote the poem. Many readers will immediately relate to the issues, feelings and emotions that she is dealing with in this selection of poems.


June 1, 2006: "Control" was written right after I had my 2-year remission anniversary.

Control

Cancer was a full out war
Inside my body
I could not control
What happened
No matter what I did

It was terrifying
Made me feel like
A helpless baby
I could not see
What was happening

But I could control
My hopes and dreams
I could control 
My attitude.

 

January 21, 2006: "I Know the Routines" was written about a year and a half after my miraculous surgery.

I Know The Routines

I know the routines
Too well
I could do them
In my deepest sleep
And probably have

"Hold out and straighten"
The arm
For B.P. or I.V.
Blood pressure or intravenous, 
That is.

"Lay on your back"
For inspections
Of heart, lungs
To stomach activity
And beyond

"Open your mouth wide"
To check on mouth sores,
Thrush, temperature
Or other

"Hold out your finger or toe"
For oxygen levels or 
A finger prick

"‘You will feel sleepy"
As the anesthesia kicks in
Or the Benadryl suffocates

"Hold still"
When some part of me
Is violated and foreign objects
Are shoved inward

"Undress from the [insert part] down or up"
So I can be inspected
Or sampled or helped

I know them
Too well.

 

June 20, 2005: "Run Away" was written about one year after my miraculous surgery.

Run Away

I want to run away
Yet nowhere
Is quite far enough
Because everywhere
I go
There is my body
The thing
That frightens me
The most.

 

April 26, 2005: "Stronger" was written a year after my amazing miraculous surgery to remove the tumor between my heart, lung and spine.

Stronger

The cancer seems gone
Medically anyways
Yet in so many ways
It is not
The remnants will remain
Forever within
My skeleton, mind and beyond
Affecting all I do
From the day it invaded
For good or for bad
It has made its mark
Permanently in time
Cancer remains influential
But I remain stronger

 

November 11, 2004: "Scars" was written about 6 months after my big miraculous surgery.

Scars

Scars all over my body
To remind me of my battles

Scars all over my mind
To remember all the trauma

Scars all over my heart
To feel the losses

Scars all over
Healing along the way
But never disappearing.

 

May 10, 2004: "Waiting Out" was written nine days before the tumor between my heart, lung and spine was removed.

Waiting Out

Days spent in the confines
Of a building
Sometimes my house
Other times the hospital

Challenged by the cancer 
Dwelling in me
No strength to get out
Forced to lie back down

Waiting out a better day
When I can go out 
And play.

 

November 6, 2003: "Waves of Pain" was written a year after finding out I had what was thought to be an inoperable tumor between my heart, lung and spine.  It would be another 6 months before a surgeon would agree to take it out.

Waves of Pain

Waves upon waves of pain
From my back and out my arm
Like a faucet dripping
It just keeps draining

But the pain never runs out
It can sometimes be paused
Like a videotape in a VCR

But eventually it starts again
It cannot be held back forever 
So it keeps running
And scaring the life out of me
PLEASE run out of pain…

 

September 15, 2003: "Hair Care" was written when I got chemotherapy a third time for the third time I had cancer.

Hair Care

I must remind myself 
I am beautiful
Hair or no hair
It does not change me
It cannot alter me
I am in control
I need to
Believe in myself
Know it does not matter

But still
It hurts
I stand out now
Screaming to the world
‘I have cancer’
‘I am sick’

 

April 14th, 2003: "Have You Ever Felt Death" was written 4 months after being told I had Askin’s Tumor for a third time-this time between my heart, lung and spine and expected to have weeks to live.

Have You Ever Felt Death?

Have you ever felt death? 
At the ripe age of 20? 
Trying to climb on your back 
Clawing at your skull 
Stepping on the backs of your shoes 
Pounding on your chest 
Suffocating your lungs 
Wrapping your face in 

I hope not 
I thoroughly despise it 
But if so
You must keep going 
Hitting it off 
Fighting it back 
Yelling at it 
Pushing it away 
Bringing out all your weapons 
Brushing it off 
Then you will not feel it 
So much

 

April 3, 2003: "Radiation Revisited" was written four months after the third time with Askin’s tumor while doing radiation again like I had done during my first diagnosis.

Radiation Revisited

This week brought me back to that place 
Almost 4 years ago I had known it well 
A daily routine spanned over six weeks 
Then, a girl of sixteen yet so much wiser 
My last bit of hair banded into petite pigtails 
Keeping my head up and eyes straight ahead 
Overlooking the elderly outnumbering me all to one 
And shocked eyes following every movement 
They seemed to think out loud 
Disbelief and denial creeping in 
Will she put on a gown or her mother? 
Ignoring the obvious absence of hair 
I would return clothed in the temporary apparel 
How lucky some felt to know long healthy years 

Silently I knew I had prevailed 
Aware I had stirred the stale air 
After visiting the special room 
For minutes lesser than a power nap 
I would transform back into the teenager 
Only until I returned the next day 
Shutting that door after 6 weeks. 

Now I was back at that place 
Even on the elevator I smelled it 
The haunting familiar smell of times ago 
A chilling revelation that I was back again 
Partly by choice, partly by need 
The basement hallway before me 
The doorway on the left after the indoor pool 
The same face greeted me 
A different hairstyle-updated, I guess 

It was out of place to be back 
The ungreased stiff door reopening 
A flashback in reality and not in mind 
I headed towards the dressing rooms again 
A memory awakened from deep within 
A natural instinct to grab a folded gown 
From the back shelf and then into a stall 

I straightened the curtain and took a deep breath 
After removing my red t-shirt of more recent times 
I draped the scratchy gown around me 
Finding the cheap ribbons immediately 
I hesitated and looked in the mirror 

I suddenly had to step closer 
Was I really seeing that 
Or were my tired eyes tricking me? 
A woman with hair-for once 
I saw very deep, glossy eyes 
Someone could easily get lost 
I had a realization 

I truly have grown up 
The radiation would be treating a woman now 
Her deep eyes still puzzling me 
The reflection stirring the still air 
The wisdom within them intimidating 
Begging me to keep going

Gifts

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

 

Pain

Pain

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.

 

Beautiful

Beautiful by Rachel Lozano

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 ring).