Go Grey in May –

No, I’m not talking about grey hair.

I had a brain tumor. I was 44 years old. It is news you never expect to hear. At the time (1999) the news was like hearing that someone I knew had been killed in a plane crash. It was a death sentence, so I thought.

I woke up on a Friday with an awful headache. I never got headaches. So I took Tylenol, which I also never take. The headache never went away.

I was a healthy mom of 6. My youngest, my only boy, was only 11 months old. I was falling asleep on a Friday night after an evening with oldest daughter, who had come over to watch a movie with her husband. We sat around that evening peeling peaches.  As I dosed off, my body went into some weird sensation that was quite traumatic.  I couldn’t see any movement but from the outside, my left side had some sort of electrical charges moving violently up and down my face and arms. I was to find out later, it was an internal seizure.

My teenage daughter heard me scream out and called 9-11. In the emergency room, I was asked a myriad of questions and an C-Scan was ordered – and there it was. Larger than life. It’s a good thing I wasn’t medically trained or I would have fainted when I realized how large it was.

“The size of a man’s fist”, my mother was told when she asked my surgeon, as she looked at her first, “The size of MY fist?”. He said, “No, the size of MY fist.”

I did have to wait 2 days for surgery. I was administered Dilantin and they were waiting for the swelling of my brain to go down. For some reason, my tumor had begun to bleed which caused the seizure. I had to lay still and not move much. It was 2 days of reflection. I did a lot of praying.

I was told before surgery that I could possibly be blind, paralyzed, deaf, my speech impared or even death. It was large and the tumor was growing tentacles.

I’ll spare the details of my grief as I thought of leaving my 6 children. I wasn’t ready to die, but who is?  My faith was strong and I knew that either way, I was in good hands.

On a side note, a good friend of mine passed around a blank journal for all my friends and family to write notes as they sat in the waiting room. To this day, it is one of my treasured positions, from my Dad.

So my question to all of you is this – why do we wait until someone is gone or seriously ill to tell them how we feel? I never knew my Dad felt this way. Tell someone today that you love and value them.

My head was shaved and all of my hair was gone. I also had over 40 staples in my head. But, I was alive and that is all that mattered, of course. I felt no pain. Brain surgery was quite surprising to me. I thought I would be in pain. But, I could see, I could move and walk. I was very much alive.

Three days passed when the doctors came in to tell me the good news….I was cancer free.  CANCER? That word had never entered my mind and I’m glad it didn’t or I would have worried. It was a very large benign meningioma. The tentacles were just beginning to emerge (that is usually the part that goes bad and wraps into the brain).

Then another shocker – wait? There is more?

I was pregnant.

It was advised due to surgery, medications and my age that I terminate the pregnancy. For me, that was not a choice I would need to make. Part of me thought because of the all I had been through, the pregnancy would probably terminate by itself.

My left side was effected for months later due to the seizure. I had a hard time typing and playing the piano. My left side couldn’t keep up with my right. Large spaces made me feel dizzy. I was not allowed to drive for a year. Friends brought me to the places I needed to go. Dilantin made me very tired. But I was determined to get back into life and to give life to the baby I was carrying.

At the time, we had Yahoo Groups and I joined one for John Hopkins Brain Tumor Survivors. I was 45 years old when Caroline was born and I posted her photo in those groups. Many in the group told me that they took that photo and placed in on their refrigerator as a reminder that there IS life after brain tumor surgery!

Caroline is almost 21 now and it’s been almost 22 years since my brain tumor surgery. I’m no longer on Dilantin and I’m doing very well.

I would be amiss if I did not thank the wonderful team of the Howell Allen Clinic. The staff was amazing, the doctors incredible. My nurse was a dad who understood and let me see my children when I’m not sure they were allowed in 😉

Sites you might want to visit:

American Brain Tumor Awareness 

National Brain Tumor Society

On Facebook 

Facebook Brain Tumor Survivor Group

QUICK BRAIN TUMOR FACTS

• An estimated 700,000 Americans are living with a primary brain tumor
  • Approximately 70% of all brain tumors are benign
  • Approximately 30% of all brain tumors are malignant
  • Approximately 58% of all brain tumors occur in females
  • Approximately 42% of all brain tumors occur in males
• An estimated 84,170 people will receive a primary brain tumor diagnosis in 2021
  • An estimated 59,040 will be non-malignant (benign)
    • Meningiomas are the most commonly occurring primary non-malignant brain tumors, accounting for 38.3% of all tumors, and 54.5% of all non-malignant tumors
  • An estimated 25,130 will be malignant
    • Glioblastoma is the most commonly occurring primary malignant brain tumor, accounting for 14.5% of all tumors, and 48.6% of all malignant tumors
• The median age at diagnosis for a primary brain tumor is 60 years
• The average survival rate for all primary brain tumor patients is 75.2%Survival rates vary by age and tumor type and generally decrease with age
  • For non-malignant brain tumor patients, the average five-year survival rate is 91.7%
  • For malignant brain tumor patients, the five-year relative survival rate following diagnosis is 36%For the most common form of primary malignant brain tumors, glioblastoma, the five-year relative survival rate is only 7.2% and median survival is only 8 months
• An estimated 18,600 people died from a malignant brain tumor (brain cancer) in 2021

Follow me on Instagram for more and read more about going grey – hair, that is. No more toxic dyes for me!