My 1st article for Harlem World My Cancer: Only a Small Part of my Life was in October 2009, when I was into my 5th month living with brain cancer. Here’s a brief recap before I get into what’s been going on. I had surgery to remove the bulk of the tumor; the entire tumor could not be safely removed. As for the residual tumor, the plan is to monitor it with MRI’s. And the good news is that as of the date of this article, the residual tumor has not increased in size. However, the residual piece of tumor could cause seizures so I am currently on an anticonvulsant medication. Also, since this piece of the tumor is still in my brain, my cancer likely won’t ever be “in remission”. I’m okay with that. I just remember that “Cancer is a word, not a sentence” ~John Diamond.
Before I get on with what’s been happening, I would like to take this opportunity to make a general apology. I’m going to blame all my prior bad acts on my brain tumor. How else could I explain some of the insensitive things I’ve done that I’ve come to regret? Yes, I think it was my brain tumor pressing on all the sensitive areas of my brain. For everyone who I’ve ever wronged, I am truly sorry, in particular to my sister Toni who has been so good to me while I go through my current challenges. Also, I would like to acknowledge that I am grateful to all my family and friends; my parents, siblings, extended family, my gal pals, my gym family, and to my work family.
Now, let’s get on to what’s been happening since my last article. In November 2009, I had a seizure while I was at work. I was sitting at my desk with a co-worker when all of sudden I put my hands on my head and told her that I wasn’t feeling well. My head started to deviate to the side and I started to scream at the top of my lungs, at though I was in physical pain, but I wasn’t. I could not control the screaming. Then my body started jerking. I was fully aware of what was happening, my co-worker trying to protect my head, holding my hands, and trying to comfort me. I could hear everything around me, but my eyes were closed. 911 was called. Once the EMT personnel arrived, they asked me a series questions to see if I was lucid, and I passed the test. Very shortly after this seizure ended, before being taken to the hospital, I had the presence of mind to pack up work to take home with me, and I asked my co-worker to cancel my nail appointment. Who thinks of these things 10 minutes after having a seizure?! I stayed overnight and they performed a 24 hour video EEG monitoring which involved having 23 electrodes hook up to my head, however, while in the hospital, I did not have another seizure. But since my CT scan and MRI results were okay, I was released.
Then at the end of November I had another seizure while at home, and then my medication was increased. I had another seizure in January of the following year. My medication kept getting increased to the point where I started to develop a rash, and then I was put on a different medication. Then I went from January 2010 all the way to April 2010 without having another seizure.
My One Year Anniversary!
So, how did I spend my May 2010 1st year anniversary living with brain cancer? In the hospital after having approximately 35 seizures in one week. That’s how.
It all started in May 2010 while I was at work. I was sitting at my desk when I started to feel that familiar “aura” and I knew a seizure was about to happen. I struggled to call out my supervisor’s name, at first I couldn’t speak, but somehow I managed to call out Joan’s name. She came to my cubicle and with the help of another co-worker; they lowered me to the floor. At this point I was already well into my first seizure which they said lasted about 3 minutes. Then I was unresponsive for about 5 minutes. Then I went into my second seizure, which lasted 2 minutes. Then I was unresponsive again, but I briefly acknowledged Joan right before going into my 3rd seizure. During all these seizures I could hear Joan’s voice trying to comfort me. She held my hand and protected my head. The EMT’s arrived at the end of my 3rd seizure. Then, just as they were getting me up on the stretcher, I went into my 4th seizure. I could still hear everything going on around me; I just could not communicate with anyone.
A co-worker rode in the ambulance with me as I was taken to NY Downtown hospital. Another co-worker arrived shortly afterwards. We chatted and laughed for a bit, I was thinking I’m okay to go home. Then, I went into a set of three seizures and was sedated. Right before the sedatives sank in, I told my co-worker that I was concerned because I had 4 seizures in a row while at work and was unresponsive, which was not a good sign. At this point, since I was heavily sedated, this was the last I can remember on my own. All I’m about to share with you are from notes that my family and friends kept for me in my journal. Before this first day was over, I had 10 seizures.
My parents flew in right away. It must be horrible for a parent to witness their child go through any kind of illness. At some point during this day, I reached for my phone and fell off the bed. I had to have a CT scan done and the results were ok. Then I asked Joan to give me a beauty treatment, so here she is in the hospital applying my eyeliner, lipstick and eye shadow while I’m hooked up to equipment. I guess I was too delirious to realize this was not a “normal” thing to do, but she obliged me anyway. That’s what friend’s are for.
The doctors at NY Downtown Hospital were in contact with my neurologist from Beth Israel in regards to my course of treatment. The primary goal was to try to control my seizures which was why they kept me sedated, but it wasn’t helping. After 2 days, my friends and family(mother in photo above) rallied together to have me transferred to Beth Israel Hospital where both my neurologist and neurosurgeon work out of. A nurse came and told me to get my things together since I was being transferred. I was so sedated I could barely keep my head up. Thanks to whoever helped me get my things together. As I read the visitors log in my journal, I was so touched by the many people who came to visit me.
One day, my doctors came in and informed me that they determined that my seizures were not epileptic seizures; they were psychogenic (non-epileptic) seizures, which I’ll get into more detail later in this article. By the time noon rolled around that day, I already had 4 seizures. These seizures are sometimes a bit draining, usually requiring me to take a short nap afterwards. This was another bad day for me, tied for 10 seizures in one day.
However, the next day I woke up feeling really well. My visitors said that I looked so much better on this day compared to most days. And all this time, since I was sedated, I don’t have any recollection of any of my visitors, and I barely remember my mother being there even though she stayed with me every night. I’m so glad that I took pictures with most of my visitors and that my visitors kept a journal for me.
The next day, I finally had my own recollection of what was going on. I was set to be released that day. A physical therapist came in and fitted me for a cane since I was walking a little unsteadily. I had some papers that I needed to have faxed to my doctor’s office, so I walked up to the front desk, with my new cane, and asked them if they could fax the papers for me. Then, oh, oh, I felt the familiar “aura”. I told the staff I didn’t feel well, and I had a seizure right there at the nurse’s station. My neurologist came to see me and told me I could not go home today, we’ll aim for tomorrow. Then the rest of the day was a blur.
Finally, home sweet home on May 20th! And this was how I spent my first year anniversary living with brain cancer. I was out of work from May 2010 and I did not return to work until August 2010.
So now it’s August 2010 and I’m back to work on a part-time basis. However, I’ve had my moments of being emotional, crying at work for fear of not knowing how I will get all my work done. I also snapped at a coworker which was out of the ordinary. I felt as though I was becoming a burden to my co-workers since I was only working part-time and they are left to pick up a great deal of my workload. I’m not a slacker and I don’t like this feeling of helplessness. However, they have assured me that I am not a burden. I have such wonderful coworkers who I truly consider to be my friends.
Unfortunately, I had 3 seizures during my first month back to work. I’ve been keeping a daily log to track my moods, diet, sleep, and exercise, to see if there is a pattern in my daily life that corresponds to when I have a seizure. So far, there has not been a clear pattern to my seizures.
Then, in September 2010, I another hospital stay. I had a seizure while at work but I opted not to go the hospital and was sent home by car service and I felt okay for the rest of the day. The next day I awoke and felt very dizzy and suddenly exhausted. I really thought something was wrong with me. It took me a while before I could feel well enough to focus and a pack bag. Then I called a cab and went to the Hospital. I was there from September 21 thru September 28. While there, I had 30+ seizures in 1 week, ranging from blank stares to full body convulsions. Then I was transferred to Beth Israel Hospital on September 28 where I had another video-EEG monitoring performed where it was re-confirmed that these were non-epileptic seizures. With the amount of times I’ve been hospitalized, I recall the quote from Francis O’Walsh that “A hospital should also have a recovery room adjoining the cashier’s office.” I’m truly blessed that my insurance covers the bulk of my hospital stays.
Then in November 2010, after having a wonderful weekend staying with my gal pals, I had a seizure while at one of their homes. I had 5 seizures before 911 quickly arrived and I was taken to St. Barnabas Medical Center in New Jersey. At one point I briefly stopped breathing. When I reached seizure #12, they started to sedate me. On my first day in this hospital I had 13 seizures, the most I ever had in one day. While at the hospital, they also performed a video EEG monitoring and came to the same conclusion as at previous hospital, these were non-epileptic seizures. So now I had 3 tests done at 2 separate hospitals which rendered the same results. It’s hard to dispute medical outcomes. I had 16 seizures in total during this hospital stay, and was released with instructions to follow-up with my neurologist.
2010 ended with me getting the wonderful news that I can start to run again, as long as I wear a bike helmet. If you know me, you know that running is one of my passions and I had gone so long without being able to run. Now I’m like a kid in a candy store.
However, 2011 did not start off particularly well as far as seizures are concerned. For the month of January 2011, I had 23 seizures in total. At least February was better, I only had 3 seizures. To date, I’ve had 141 seizures. It’s truly amazing what we can endure. I just keep remembering the quote by Alex Karras that “toughness is in the soul and spirit, not in muscles”.
Continuing With My Life
So now it’s March 2011, almost 2 years since my surgery when I first found out I have cancer, and now I’m coping with seizures. So, what was my official diagnosis of all those seizures? First let me explain what a seizure is. A seizure is a sudden abnormal electrical discharge in the brain. After spending a week in the hospital hooked up to video-EEG, it was determined that my seizures were psychogenic non-epileptic seizures or PNES. They are episodes of movement, sensation, or behaviors that are similar to epileptic seizures but do NOT have a neurologic origin, rather they are somatic manifestation of psychological distress. PNES are stress related or emotional seizures. The course of treatment for this is psychiatric and psychological therapy.
Therefore I am now under the care of a psychiatrist, who had diagnosed me with an anxiety disorder. She has prescribed various different medications, and I am also under the care of a psychologist for regular therapy sessions. She feels that my brain had “subconsciously” learned to have seizures when I’m stressed. She compares it to a pair of pantyhose. After the pantyhose have been worn, after you wash them, they still retain the shape of your foot. My brain has “subconsciously” retained the ability to have seizures when I’m anxious; stressed or when my body is out of balance. However, the prognosis is good. With proper treatment, these types of seizures usually disappear in a certain percentage of individuals.
As for my epileptic seizures, my medications were changed 3 times, but I’m currently only on one (likely for the rest of my life). For my psychogenic non-epileptic seizures (PNES), my psychiatrist currently has me on 2 different medications. I take some medications at different times of the day, but at nighttime, I take a dose of 3, which usually puts me in a zombie like state of mind.
So what’s else has been going on? Well, for one, I have finally embraced my grey hair, no more using a hair coloring stick or wearing a head scarf. I’ve started juicing fruits and vegetables. Wow, my insides never felt so good. I’ve been keeping up with my doctor appointments, as I suggest you all do. It’s very important to keep up with doctor visits, and to give them full disclosure, no matter how trivial or embarrassing the detail is. They need to know about any change or abnormalities in our health, so that he or she can recommend a specialist for us.
My sense of independence has now changed. I’ve been very self-sufficient for such a long time, yet now I had learned to depend on others, which took a lot of adjusting to on my part. I have not driven since November 2009 due to the seizures, and I actually gave away my car. I now need to be accompanied everywhere I go. I don’t even take a walk to my local grocery store anymore for fear of having seizure, so my sister takes me to run my errands once a week. I feel like a prisoner in my own home. Trust me, I’d rather be at work than to have to have a babysitter everywhere I go. I’d rather be able to carry on with my regular routine than to feel confined within the walls of my apartment. So now, I’ve learned recognize a window of opportunity when I see it. When friends come to visit me, I humble myself and ask them to take me to do my running around. I’m grateful to have a strong family and friend base. They call me so often to check up on me and offer up their services. Some of my friends have even taken a day off from work to take me to my doctor’s appointment, driving from borough to borough to borough just for me, and I’m so appreciative of that.
So again, here I am, in March 2011, and I’ve been out of work since September 2010. While I’m currently out of work, I plan to make good on some of the things that I’ve started, and will finally “walk my talk”. One such thing I’ve taken seriously is reading religious books. I’m currently reading The Bible, and with the help of my mentor (thanks A.O.G.), I’ve now read more now than in any of my previous attempts to read the Bible. This is such a major accomplishment in my “new life”.
I’ve also set up a couple of sites where people can turn to for sharing similar stories and to obtain support, such as:
1) “Collette Henry Brain Cancer Awareness” Facebook page here.
2) a Harlem World Magazine Support group Blog here.
Through these sites, I’ve come to learn about many people who also have varying types of cancer and other illnesses, and they’ve mentioned that by me sharing my story and my journey about brain cancer and seizures, it has given them comfort and inspiration in their lives. Also, a friend’s son interviewed me for a High School project he is working on regarding cancer in general. I hope I helped him to earn a good grade.
I know this is such a familiar cliché, but we should all live life to the fullest and not take tomorrow for granted. I fully realized this once I finally and truly acknowledged deep down that I have brain cancer. I remember that day clearly. It was October 24, 2010 and I was watching the Showtime series “The Big C” about a woman who has cancer. The main character reminded me of myself in that she reacted to her cancer in the same type of nonchalant manner in which I did. It wasn’t until she was speaking to her doctor about how long she has to live, that I realized that I never spoke in-depth with my doctor about how long I have. The tears started to fill in my eyes, but I didn’t sob. Then as she was preparing for her eventual death, packing gifts away in a storage locker for her son that I finally broke down in tears. But even through this, I have never asked myself “why me”? At first, I thought that unless some freak accident takes my life, I’ll likely die from cancer related issues before old age sets in. But then I realized that the doctors can only give me a ball park time frame based on generalities and can’t speak specifically about me, (since I’m a statistic of one), but only God know when it’s my time. Whether I have 6 months, 6 years, or 60 years, I likely wouldn’t do much different that what I would plan to do anyway. So if there’s something I want to do, big or small, I should just do it, and not let cancer be the driving factor.
I’ve also decided to take the attitude “so what I have brain cancer”. I’m just going to continue chipping away at my forever growing “to do” list, instead of working on my “bucket list,” because “Attitude is a little thing that makes a big difference.”~ Winston Churchill
My advice to others comes in the form of quotes:
“A sad soul can kill you quicker than a germ”. John Steinbeck
“To fear is one thing. To let fear grab you by the tail and swing you around is another.” ~Katherine Paterson
“Oh, my friend, it’s not what they take away from you that counts – it’s what you do with what you have left.” ~Hubert Humphrey
As I continue with my life, I would like to leave you with a few lines from my song of inspiration Nina Simone’s: “It’s a new dawn; it’s a new day; it’s a new life; and I’m feeling good.”
Thank you for taking the time to read my story, and God willing, stay tuned for Part III.
A first person story by Collette Henry.
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