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Fight the fight: Surviving a deadly brain cancer prognosis as a mom-to-be

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120806tracey2.JPGBy Tracey Schoettelkotte

When I received the initial call from MD Anderson asking me if I would be interested in writing about my cancer journey, I had to laugh because my brain does not operate the way it used to.  

As a former trial attorney, I could intelligently write 500 words in just a few minutes. This blog post took me more than a month to write and it has been difficult and frustrating. But in writing my story, I have found I'm happy to hold a pen in my hand again.

So, one more thank you to MD Anderson and those who have supported me along the way. Because of you, I am here to share my story.

 
2002 was the most amazing year of my life. 

In a short sweep of time I got engaged, turned 30, graduated from The University of Texas School of Law, passed the Texas Bar, got married, spent a month in Europe on my honeymoon, started my new legal career in a boutique trial law firm and became a mom-to-be.

My life had come full circle -- everything that I had worked so hard for, dreamed of and prayed for had all finally came true.

During this time, I paid no attention to the daily headaches I was experiencing -- Tylenol had become my everyday regimen -- until Christmas Day.

My husband and I were celebrating with my family in Virginia. It was a tough time because my grandmother had just passed away and the pain in my head was the worst it had ever been. It was so unbearable that after Christmas dinner I fell to the floor and could not get up. My devoted husband and my loving father took me to the local hospital, worried about me and the baby I was carrying.
 
Test after test at the Virginia hospital showed that everything looked normal. The doctor decided to do one final imaging test called a CT scan before sending me home. The results changed my life forever. 

Putting up a fight

The scan showed a baseball-sized tumor in the lower left lobe of my brain. Immediately, the doctors diagnosed it as an advanced (grade 4) glioblastoma multiforme (GBM), one of the worst and most aggressive brain cancers. I was told that I had three months to live, and the odds of my child being born were slim to none.

Despite the doctor's grim prognosis, I remember sitting in the hospital thinking that I was not going to die and neither was my child. We found out we were having a baby boy and we named him. The mother in me knew I had to fight.

We kindly told the doctor that we would be heading back home to Houston, to the only place we wanted to go for treatment: MD Anderson Cancer Center.

Are you ready?  
On Dec. 27 we had our first appointment at MD Anderson in the Brain and Spine Center with Raymond Sawaya, M.D., chairman of the Department of Neurosurgery

My tumor was located in the area of the brain that controls one's ability to speak, read and write, as well as short-term memory. My husband spoke to Dr. Sawaya, showing him my CT scan and telling him about our visit in the Virginia hospital, including the doctor's prognosis that I had three months to live.

Dr. Sawaya said nothing. 

He turned to me, put his hand on my knee, looked me straight in the eye and asked the most incredible question I have ever been asked, "Are you ready to fight the fight?" Without hesitation, I replied, "Yes! Yes! Yes!" 

Finally, I was surrounded by hope and an opportunity to see my son live.

Celebrating 10 years 
After years of surgery, radiation, and a trifecta of chemotherapy, I look forward to celebrate this Christmas Day watching my 9-year-old open his presents. I am one lucky lady.

My family and I did not believe that three months was acceptable, so we turned to the right place at the right time. The hope and attention I received from Dr. Sawaya and the neuro-oncology team at MD Anderson was nothing but fantastic.

Don't ever forget to fight the fight and don't look back!

3 Comments

Thanks for your story. My husband is an attorney too and has just been diagnosed with AA3. I too have seen reports of how long he may have to live and I am scared to be left to raise our boys. However, your story gives me hope. He is a fighter and I can only hope that we will have an amazing survivor story too one day!

Tracey, thanks for sharing your story. My son has just had his brain tumor removed (March 13, 2013) at Swedish Hospital in Seattle. The tumor is also the grade IV GBM and I was devastated when I heard the news. My son has just turned 29 in February and one month later, he has diagnosed with such a terrible form of cancer. What is striking is how different our doctor prognosis is from what we have been reading on the web, where most of what is reported is that the vast majority of the people with glioblastoma have painful treatments followed by death within 15 months. Dr. Foltz at Swedish Hospital said that it was extremely good news that no tumor cells could be found on the MRI of my son and that part of the tumor residue has been sent to the pathology lab for analysis and they will also perform a gene sequencing on it which will give them an indication of the type of mutation. The pathology report should be ready next week; the gene sequencing the week after. His treatment will be finally determined after they have the pathology and gene reports, but most likely it will entail oral chemotherapy of a drug called Temador combined with radiation directed to the area from which the tumor was removed. They expect most of the remaining cancer cells to be close to the locus of the tumor. The combination of Temador and radiation have been very effective in treating this type of cancer in others. The radiation will go on for 6 weeks and the chemo will go on for a year, during which my son will take the drug for 5 days each month. Side effects from this therapy are mild, and he should be able to live his normal life.
We are researching the options of getting second opinion. Tracey, can you kindly share how you were being treated?
Thank you so much and congratulations on your success of fighting such a terrible cancer and you are cured with no recurrence.
Sincerely,
Connie

Tracey, I was moved by your story and signed-in (first time I have done this anywhere) - I wish you a long and joyful life with your child and family. My wife was diagnosed with aa3 on xmas eve 2013, met surgeon on Dec 27 (chairman of department of neurology), and had operation on the left hand lobe - tumour the size of a baseball but only a small amount could be removed for biopsy.... The tumour has in fact breached across to the right lobe. They tell us that the tumour was there for years without any sympton until my wife threw up 5 times in the week before the diagnsis. We have a 6 year old son and leave in melbourne australia.

Our fight is just starting (just started radiotherapy) and we expect it to be a tough one - we pray that our outcome be as good as yours. My wife is not stable on her feet, can not recall certain words and not good at short memory. She also gets angry quickly. I don't think she has the ability to fully comprehend the situation. Our little one is starting to get used to a different mum.

I would be interested to know about your treatment (it seems you had numerous surgeries) and any research you did - I realise things change over 10 years but I wonder if the anderson centre may be of help to us (we are a small country and so far away).

Sincerely
Sam

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