My first tumor was discovered when I was in college, just 19 years old. Last year they found a malignant tumor on the head of my pancreas that was resting on my small intestine. Just one short, hectic week after finding this out, my life was uprooted and I was in the OR at Rhode Island Hospital, having pancreatic surgery known as the whipple procedure. A whipple procedure entails removing part of the pancreas, stomach and small intestine, as well as the gallbladder and liver duct. The entire digestive system then needs to be rerouted.
After the surgery, they determined the tumor to be pancreatic cancer called a pancreatic neuroendocrine tumor. This led them to discover that I have a cancerous genetic disease called VHL.
After more testing, they also found that I currently have three brain tumors, known as hemangioblastomas that they continue to monitor. These tumors rest on the back of my brain and spine and continue to cause symptoms like nausea and migraines.
Throughout recovery, maintaining a healthy weight has been most difficult. I am severely underweight and malnourished and my tumors and digestive issues make it extremely difficult to maintain a normal 27 year old lifestyle.
In recent weeks, I have had to take a leave of absence from my teaching career because of my debilitating symptoms. I have the most amazing seventh grade students this year and it breaks my heart that I am no longer well enough to teach them and spend their last few weeks of this school year with them.
Right now, I ask you to please help me in any way you can. I am currently struggling to manage my symptoms enough to get back to my students, my life, my wonderful fiancé and my caring family. I am finding it more and more difficult to maintain my job, my health bills, my doctor's appointments, and pay off my student loans. If you can help in any small way, it will mean more than you know! Thank you for reading my story. I will be using any money I earn on my medical bills and maintaining my student loans while out on leave.
This is an inspirational poem I found that was written by a fellow VHL warrior. I couldn't explain my situation any better than she does!
“To look at me you’d never know
But the tumors in me just grow and grow
No matter what I do or say
They just won’t go away
At first the feelings just flowed
The time stood still, it got very cold
From a care free teen with my whole life ahead
To a dying teen lying in a bed
That night I lay awake till dawn
And before I knew I had a new plan drawn
I realized something in the dark of night
That I was going to win this fight
The tumors the doc had found
The news that put my parents on the ground
They said that I was going to die
But I wasn’t prepared to say goodbye
So I got myself ready for war
And promised my loved ones I’d walk out that hospital door
And sure enough the road was rough
But I was never willing to give up
I know my war is not over yet
But one thing I’ll never forget
To smile in troubles remember I’m blessed
God gave me this imperfection
Cause he knew I could handle the stress
And in a funny way I’m glad for that day
for the scars and the tears
I’ve gathered through the years
For all these things is what makes me
My von Hippel-Lindau, My Life, and Me.”
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