Go Gray in May: Living with Brain Cancer

Picture of Jody on a site visit in Anchorage - author provided image

Jody on a site visit in Anchorage

December 23, 2011 is not a day I will ever forget – Glioblastoma Multiforme (GBM) Right Parietal Lobe.  Not words you hear every day and certainly not words you want to hear before you even turn 40.  But that is how my journey with brain cancer began.  Little did I know what that diagnosis meant and how drastically my life and outlook would change as a result.  Nor did I know of the times to come.

Following my release from the hospital after a craniotomy to remove the golf ball size tumor, I was instantly loaded up with multiple prescription pills multiple times a day.  Suddenly, my life was dictated by doctor’s appointments, radiation treatments, chemo pills, MRI scans, and massive weight gain.  I spent numerous hours crying, trying to understand why this happened to me – no one could give me an answer.  I certainly was not ready to die.  Normalcy was hard to achieve with friends and loved ones.  The stark reality of my situation was etched in hard lines on my 19 year old daughter’s face and was perhaps the hardest part to move past.  The look of sorrow on the faces of others was devastating and hard to digest.  People didn’t know how to act around me.  It was as if for some, the diagnosis was my death sentence and they could not move past that.  All I wanted was my life back, to be treated like the old Jody.  But at that point, the old Jody was gone.  In its place was anxiety, trauma, and fear.  But I wasn’t willing to give in.

A year and a half later, my situation is much better.  No more chemo and hardly any pills. Fewer doctor’s appointments although the MRIs and PET scans continue on a regular basis.  It has not been an easy road but I’m still here to tell about it.  Living with brain cancer is the hardest challenge I could have ever imagined.  To this day, I still at times relive the trauma from being in the hospital, going in for the craniotomy, ICU, and the weeks of recovery after.  I now have bouts of severe anxiety which I never had before.  I worry when I get headaches, neck aches, or feel dizzy and sick.  I cringe every time I go in for MRI results, waiting for the axe to fall but much relieved when I hear the doctor’s words that all is clear.  My outlook on life has changed drastically – life is too short takes on a whole new meaning when you are living with brain cancer.  I have learned to slow down, enjoy every moment of life, and love my friends and family unconditionally.  The tears still come at times and the vivid memories of all the anguish I experienced have not diminished much but I’m now able to live with those memories and understand they have just made me that much stronger of a person and who I’ve become today.

The month of May has been dedicated to brain tumor/cancer awareness.  Brain cancer does not discriminate.  This cancer affects males and females of any race and at any age. Brain tumors are the second leading cause of cancer-related death in children under 20. Over 688,000 Americans are living with a primary brain tumor. Each year, over 66,000 people are diagnosed with primary malignant and non-malignant tumors. GBM is the most aggressive form of brain cancer one can get and is considered a grade IV – the highest grade a brain tumor can be considered. It accounts for approximately 15 percent of all brain cancers. The prognosis after receiving a GBM diagnosis is not good.  Even when the tumor is removed, GBM often grows back quickly.  Most die from the cancer within 15 months. And the decline is often quick and painful.  Not a pleasant experience for anyone especially for those on the outside looking in.

Somehow or another I’m one of the lucky ones. I’m 17 months out from my diagnosis of GBM.  Although it could come back at any time, as of now my scans have been clear.  People often act amazed at how well I’m doing and tell me how good I look.  I place all the credit for that on the love and prayers of all those around me who never gave up on me.  Lots of love and humor, even during times that are devastating, has the power to heal. I am a firm believer in that.  I also know that no matter what happens in the future, I still have the here and now.  I continue to beat the odds.  Living with brain cancer?  No….I choose to just live!  GO GRAY IN MAY and support all of us affected by this devastating disease.

Health and Wellness, Whole health