Wednesday, January 5, 2011

The Scoop

In November of 2010 I was diagnosed with a large and a-typical tumor of the head and neck.  I had been having pain in my neck for over two years which progressed to headaches, shoulder pain, limited range of motion in my neck and right shoulder, weakness in the right side of my face, hearing loss, jaw pain, and dizziness.  The symptoms would come on gradually causing me to wonder if I had done something to cause myself an injury.  There came a point where it was undeniable that something was not right.
I first saw an ENT who ordered a full head and neck MRI.  The tumor was then discovered and I saw several physicians most of them neurosurgeons.  I found an excellent team of doctors at the University of Miami. After running numerous tests, and debating about performing a biopsy, it was determined that a biopsy was too risky and surgically removing the tumor would also be impossible.  Removing part of the tumor is considered a high risk procedure that could cause me to have more symptoms than I currently have.  The doctors felt my best option was to try radiation treatment.
I am in the process of scheduling the radiation treatment.  The radiation physician told me I would need 6 weeks of radiation, 5 days a week.  The radiation treatment is considered a success if the growth of the tumor stops.  It would be a very welcome bonus if it also shrunk the tumor and/or some of my symptoms were alleviated.  There is a 70-80% chance that radiation will be a success.

The Fine Print

For those wanting some more details...The tumor is thought to be a benign glomus tumor.  It is amorphous in size, highly vascular, and measures greater than 6cm.  It is visible through the ear canal and extends into the base of the skull and deep into the skull just behind the right eye.  It is  encasing the carotid artery and affecting several nerves (hence causing the pain and range of motion problems).  These types of tumors can occur spontaneously but are more likely thought to be due to a genetic mutation.  The tests that have been performed include 2 MRIs, CAT scan, angiogram, carotid angiogram, and a nuclear medicine scan.  The nuclear medicine scan revealed that I do not have any other tumors in my body.
The side effects of the radiation vary from person to person.  The only guaranteed side effects are sensitive skin in the area treated, coloration of the skin like a sun burn, and hair loss.  Other symptoms include fatigue, nausea, headaches, and worsening of my current symptoms but these are not guaranteed.  Long term side effects are rare and scary so we'll discuss those if they ever come up.

How I'm Holding Up

Overall I'm doing very well.  My attitude had remained realistic but positive this entire time.  I do feel that there will be some tough times ahead but that at the end I will come out of this not only physically better, but a better person as well.  I'm blessed to have a big wonderful and supportive family and great friends who have been by my side every step of the way.  I pray that God give me strength, that he guide me, and that he open my eyes so that I may see and learn what I need to in order to help myself heal.  A mentor of mine told me that during the hardest of moments we can also live the fullest of lives.  These words really resonate for me.  The hardest of moments help us to appreciate and become present to the wonder of being alive, sharing with those we love, and the beauty all around us.  It's put into perspective for me how precious things we often take for granted are.  Most of all, during this time I've felt gratitude not only for the love and support, but for the ability to be present to it.

1 comment:

  1. your spirit is amazing and an inspiration to all! God bless you. you're in our prayers.

    with love,