Collette Henry: My Journey With Brain Cancer (Part 1)

October 11, 2016

me and dad

By Collette Henry

In hearing about the many people who have cancer, it never felt so real until I was diagnosed with brain cancer.

I’m into my fifth month living with brain cancer. Well, it’s actually been five months since being diagnosed but no one can tell me how long I’ve been living with cancer. It all started on May 20th. I was doing something I love to do. I was racing in Central Park along with my company running team. I was 2 miles into a 3.5 mile race. I recall feeling weird, then turning in the opposite direction. I don’t recall spinning in circles, or hopping on one leg, or falling and scraping my elbow, or my front capped tooth falling out, or convulsing. This was relayed to me by eyewitnesses to my seizure. I vaguely recall being in the ambulance, but I don’t recall giving a fellow team member my phone number. This also was relayed to me later. I do remember being in the emergency room and calling my brother, later I was taken for an MRI and CT scan which both revealed that I have a tumor in my brain.

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My first surgery was on May 26th 2009 to remove the bulk of my tumor. The surgeon did not want to remove the entire tumor because it was resting on my motor cortex. If he went too close to the cortex, it could have left me paralyzed on my right side. The medical team concluded I have a Grade II Glioma. The doctors decided the best treatment for my residual tumor is to aggressively monitor it with frequent MRIs, until it grows back. Fortunately, the tumor is very slow growing. Unless I develop symptoms like increased severe headaches or another seizure, they will hold off on radiation therapy as well. It’s like when a person has a bullet lodged inside of them. The risk of removing it is high and the doctors feel it’s best to just leave the bullet alone barring any symptoms.

I had another surgery because of an infection that started in my eye, one week of being released from the hospital. I woke up and my eye was swollen. Within a matter of hours, it was swollen shut. This turned out to be an infection in my brain.  So, the surgeon had to re-open my incision to “clean out” my infection. Since, they were re-opening a fresh wound; the recovery from my second surgery was much more painful from my first surgery. I am amazed and sometimes wonder how I was able to deal with the pain. Truth be told, I didn’t have a choice.

I finally realized the severity of what I am going through when I was allowed to resume my regular routine. That’s when it hit me; I should enjoy every moment of my life. A few of my friends asked how this could happen to me-an otherwise healthy person. I work out, don’t smoke, rarely drink, etc. but not once did I question “why me”. I quickly went into acceptance skipping right over denial. I seem to have dealt with my cancer well. However, I do sometimes think that one day I will breakdown and have a very long cry.

I’ve been thinking long and hard about advice I can give to others in my condition. I could say that you should seek comfort in knowing that you are not alone, but that didn’t help because I don’t seek comfort in other people’s misfortune.   I do say to:

  1. Seek strength in knowing that many others are surviving with cancer.
  2. Believe that even though cancer is a physical condition, we don’t have to succumb to it mentally. It’s the mental part of us that gets us through tough times.
  3. Learn to think and act positively. Don’t fall victim to how you are supposed to feel with having cancer. You are unique, like no other, and so too is your cancer.
  4. Work to breakthrough all the negative statistics, and start to think and act as though you want to be a positive statistic. Show cancer who’s the boss!
  5. Don’t only rely on your doctors for your treatment. Help them to help you! Question what they tell you. Take notes. Read up about all your medications and treatments. Keep an eye out for side effects you may be experiencing. Help them to decide what is best for you.

Reflection (part #2)

Life Changes: Since my seizure and surgeries, my life has changed. Not necessarily good or bad, it just changed.  I can no longer look at a headache or upset stomach as just a headache and upset stomach.  I have to always think of these otherwise minor symptoms in terms of my overall health, and with consultation with my doctors, determine if further investigation is needed. While many people just have a family doctor, dentist and optometrist who they see once a year, I now have a team of doctors that include my neurosurgeon, infectious disease doctor, neuro-ophthalmologist, and oncologist. It’s nice to know that so many people are looking after my well being.

The Pain: I think I handle pain pretty well. After my first surgery, after having my skull cut open from almost ear to ear to remove the bone, do a partial resection of the tumor, then replace the bone, I don’t recall rating my pain more than a 6-7 out of 10. Generally, most days it was 3-5 which was not uncommon for me since in the past I suffered from sinus headaches.

I previously mentioned that I am waiting for the day when I breakdown emotionally and have a good cry. Well, I had a not so good cry from the physical pain of my surgery. Such pain that the word pain was not severe enough to describe the anguish I suffered. After my second surgery, I awoke to a pain level 10 of 10. It made me realize the previous 6-7 was really more like a 3. I wanted to put myself out of my misery but I didn’t have the nerve to commit such a sin. So, I lay in my bed crying, thinking the pain couldn’t possibly get any worse.  I was wrong.  The pain intensified.  I quietly prayed that God would take my life. Then, the morphine set in and the pain started to subside.  Thankfully, God didn’t act on my prayers.

My Infection: My infection was so bad that I required a second surgery. Then, I had to have a PIC line surgically implanted in my arm so that I could self-administer my antibiotics while at home. I had to do this twice a day for six weeks. The steroids that I was taking to help reduce brain swelling upset my stomach. Luckily, I didn’t have to take the steroids for too long.

This is a totally new paragraph:

Lack of sleep:  While in the hospital, I was generally awakened every few hours for various reasons: to take medication, to have my temperature taken, to have my blood pressure taken, to have my I.V. fluids changed, to draw blood, to be examined by various doctors, etc.  My body quickly got used to being awakened, so that even when I left the hospital, I would still wake up every few hours.  After 4 months of this, I got a prescription from my family doctor for a sleep aide, which I took for only one week.  It did help me to fall asleep, but it didn’t keep me asleep.  One night, I recall taking a pill, then lying down to watch television.  The next thing I knew, I woke up in the middle of the night, with no memory of removing 1 of my 2 pillows, turning off the television, or removing my glasses.  That was the end of the sleep aide for me.  The commercials did say that some people experience memory loss, which was a bit frightening for me.  Now, almost 5 months later, just 2 weeks after I started running again,  I am now able to sleep through the night.

Outpouring of Concern: While I was in the hospital, I was truly grateful at the amount of people who came to visit me, and for those who sent their well wishes. My friends were a blessing to see. As for my co-workers, I can truly refer to them as more than just co-workers. They showed true friendship. As for my family, I will forever be grateful for the level of support they showed me. My younger brother and sister let me recuperate at their homes. My older brother has made resurgence in my life as well. My mother who lives in Florida stayed in New York with me for a few months. As for my father, we both have cancer. No one knows more than we as to what the other is going through.

Continuing: People still continue to show their support and concern. A friend who I work with keeps her eye on me while we’re at the gym. People still call to check up on me. When people say, “let me know if there is anything I can do for you”, I can hear the sincerity in their voice.

I’m continuing to get my life back on track.  The hair around my incision line has almost completely grown back.  I’m back to work, and back to driving.  And one of my happiest days so far was when I was told that I could go back to running. I look forward to rejoining my running team for the 2010 season.  Maybe I’ll even train for another marathon.   I feel as though I’ve come full circle.

Healthcare: I’m very fortunate to have good health coverage. The hospital bills were incredible. My anesthesiologist fee was $3,750. One night in neurosurgery-intensive care cost $9,000. One particular bill I received was $88,000. Then, there’s the medication. A month supply of my anti-seizure medication without insurance cost $177. Then, I have all my follow-up appointments for the rest of my life. How can anyone afford these types of bills? It’s more than a shame that people get sick on a daily basis and have to stay sick due to lack of health insurance. I shudder to think of what my life would be like and how sick I would be if I didn’t have good health coverage.

Question:  Can the “Healthcare” paragraph come somewhere before the “Continuing” paragraph without interrupting the flow of the article?  It would be nice to end my story on a good note of resuming my running.  If not, it’s okay as is.

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A first person story by Collette Henry (pictured on the right)).

To read Part ll of the story click HERE.

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