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 exactly how long I’ve been living with cancer. It all started on May 20th 2009. 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.
My first surgery was on May 26th to remove the bulk of my tumor. My 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 (low grade) 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 have another seizure, they will hold off on radiation therapy as well. I think 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 appeared to have started in my eye, one week after 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, my 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:
- Seek strength in knowing that many others are surviving with cancer.
- 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.
- 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.
- 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!
- 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.
- It’s important to realize that there is not a “quick fix” when it comes to cancer. What works for one person might not work for another. You might be given medication or treatment that does not work for you. Inform your doctors so they can find alternative treatment. Your doctor can only recommend. He or she can not guarantee.
- You may not get back to who you were before your brain tumor. I say don’t try to. Just look ahead and move forward.
A brain tumor and its effects: The skull is basically meant to house 3 things; the brain, cerebrospinal fluid and blood vessels. A brain tumor is a mass of abnormal cells. The skull does not expand to accommodate this mass, therefore the mass presses into important parts of the brain. (Even a benign tumor can be harmful since it’s pressing into sensitive areas). The mass seems to start from one abnormal cell that grows when it is not supposed to. It learns to stimulate its own growth, lose its tumor suppressor genes, invade, become invisible to normal immune cells, and then form new blood vessels to increase their nutrient supply. A brain tumor has a major impact on our overall health, since it’s our brain that controls our physical, psychological, and emotional nature, therefore a brain tumor and its subsequent treatment can change who we are. I am fortunate in that so far I have not noticed any major change within me. I was told by my oncologist that my surgeon did a wonderful job with my surgery, since I am not showing any signs of neurological distress, and to date, my family and friends have not noticed any behavior changes in me.
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, removing as much of the tumor as possible, then replacing the bone, and having staples put in to secure the incision site, 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 second 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.
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 what I did the night before. 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, I am finally able to get decent nights sleep.
Life Changes: Since my seizure and surgeries, my life has changed. Not necessarily good or bad, it just changed. I now need medical clearance before I can get any other work done, including dental work. 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 treatment is required. 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.
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. 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.
Encouraging words: Ivan Noble, a BBC reporter said “wishing for miracles is a silly waste of time in precious days” and “cancer is succumbing all the time to both the incremental improvement of science and the determination of those of us living and surviving the disease day by day”. I also recall a quote from President Barack Obama who said “Hope is not blind optimism. It’s not ignoring the enormity of the tasks ahead or the roadblocks that stand in our path. It’s not sitting on the sidelines or shirking from a fight. Hope is that thing inside us that insists, despite all the evidence to the contrary that something better awaits us if we have the courage to reach for it and to work for it and to fight for it”. I am determined to be more than a one year cancer survivor, or a decade long cancer survivor, but to be a long term cancer survivor. I am determined to fight my cancer by doing my part to stay otherwise healthy, both physically and emotionally, and I encourage others to fight as well.
Continuing: As of my last MRI I still had some brain swelling, but it has reduced from the previous MRI. So now I can go from getting an MRI every month to not having to get another MRI for at least 6-12 months. 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 move forward with my life. The hair around my incision line has almost completely grown in. 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 start running again. I look forward to rejoining my running team for the 2010 season, and maybe I’ll even train for another marathon. I feel as though I’ve come full circle, and now I’m planning for the road ahead.
Healthcare: I’m very fortunate to have good health coverage. The hospital bills were incredible. 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.
A first person story by Collette Henry (pictured on the right)
(Published originally in Nov. 2 , 2009)