Nose to nose and toe to toe with cancer

Deena Moore, left, was diagnosed in April with a terminal brain tumor. She continues to endure through her faith and humor. Her sister, Martha, pampers her with a manicure. Photo by Shavonne Potts, Salisbury Post

Deena Moore before her surgery. Photo submitted by Deena Moore.

Deena Moore during treatment, with the 'steroid' look. Photo submitted by Deena Moore.

The radiation mask Deena Moore used. Photo submitted by Deena Moore.

The view out of the seventh floor of the hospital. Photo submitted by Deena Moore.

By Deena Moore

Special to the Salisbury Post

At no time was having a malignant brain tumor removed from the base of the right side of my brain on my bucket list.

On April 21, the bucket list took on a new dimension.

I returned home from running errands. Going into the house, I noticed something wrong with my vision. Out of the corner of my left eye, I was seeing tiny, flashing red, green and blue lights. They had a festive Christmas-like aura.

I felt a slight headache which was unusual, since I rarely have a headache. I could not walk straight and was falling into the door frames.

I called my sister and asked her to take me to the emergency room. For me to ask to go to the hospital is close to a life-or-death threat. I then called Pastor Paul at Grace United Methodist Church. I had planned to go to the viewing for member and friend Ted Brinkley. I wanted Ted’s wife to know I was sorry I could not attend.

By the time my sister arrived, I was in a state of confusion. I was wearing two pair of glasses, arguing about how to shut the computer down and being a general know-it-all.

I have no recall of the ride to the hospital, only my sister pulling up to the doors at the ER and shouting for someone to get a stretcher because “she has had a seizure.” I started looking around to see who else was in the van because I knew I have never had a seizure and wanted to tell everyone my sister was just being a drama queen. Good thing I could not talk because I was in need of immediate help.

Stolen days

My next memory was waking up in Forsyth Hospital in Winston-Salem.

Nurses began to question me to test my cognitive thinking. I knew my name, date of birth, the current year, but not the month and date. I could also give the name of the president. In years past I have had the occasion to quiz others on their lucidity, so I knew the drill. I was able to name the months of the year backwards, starting with December and going to January.

When I looked at the date on the dry-erase board on the wall, I realized someone had stolen about three days from my life. I do not know where they went or exactly what happened during those three days. I later was able to plug in some of the missing fragments through the tremendous outpouring of love and support from family and friends.

Calling mom

It doesn’t matter how old a girl gets, in a time of distress, she still wants to talk to her mother, and I needed to talk to mine. I also needed to let her know I was awake and OK. The nurse on duty loaned me her cell phone to make the call. It felt good. I don’t have much recall about our conversation, only the tears of joy stinging my eyes.

My next vivid memory was of the neurosurgeon coming in and introducing himself. He asked me to repeat his name, which I did, and told him I would probably be asking him to repeat it for me the next time we met.

He then informed me I had a malignant brain tumor and asked if I knew what that meant. Without blinking I replied, “It means cancer.” He nodded an affirmative.

My only question was, had it metastasized? His answer was no, typically this type tumor does not metastasize but is rapid-growing.

He pointed to the location of the tumor and explained it was on the right side of the brain stem, near the spine. At least those are the words I heard: “brain stem” and “spine.” Not where I would expect a cancerous tumor to be.

He said the tumor was called a glioblastoma, and I would be seeing an oncologist to discuss treatment options, such as surgery to remove the tumor, followed by chemo and radiation.

I had never really given any thought to how I would react if I learned I had cancer. And I had definitely never given any consideration to having major brain surgery. It was kind of a relief to know the cause for my being in the hospital had been determined, the tumor had a name, and a plan for treatment was being formulated.

It would be a couple of weeks later when I would learn the prognosis for this type tumor was very grim, and there was no cure.

The clocks at Forsyth have to be the slowest in the world. I would look at the clock and it would say 1:15 and, by my mental internal clock, three hours later it would say 1:35. Time did move slowly. During the day, staff members would pop in to test my physical strength and mental clarity. I was instructed to squeeze fingers, push, pull, with my legs and given the touch-the-nose-to-the-floating-finger test. I felt like I was being given a field sobriety test.

The daylight hours gave way to evening and stretched into night. All I could find on TV were infomercials, all with neon red, blue and black color schemes. There was one episode of a ghostly, grainy, black-and-white “I Love Lucy.”

I turned the TV off and decided to listen to the voices in my head. Don’t panic. These were not the voices which summon you to university rooftops or water towers while packing an assault rifle for target practice. These were the voices of the past. The ones I use when I am bored or waxing nostalgic.

Looking backward

As a child, and later as an adult, one of my favorite pastimes was to have someone read or recite poetry to me. On this night, I summoned the voice of my mother and listened as she read or recited two of my favorite childhood poems, “Little Orphan Annie” and “Get Up and Bar the Door.”

Next my memories called upon friend Fred as he recited and explained “My Last Duchess,” followed by his “Yawn With the Wind” limericks featuring “Scarlett the Harlot” and the “Barefoot Prissy.”

It wasn’t long before Dale came along with his oh-so-perfect imitation of Rod Serling and, without missing a beat, slid right into one of his silly cartoon characters. Next, Hayden invaded my romp down memory alley, proudly displaying the “Quarter” machine he had acquired from the old Yadkin Hotel, and then proudly installed the machine in his bathroom.

I listened to Sylvia as she read the “letters to her aunt.” I could not hear in my mind what she said, but could only feel the bond between the two.

It was the day I learned I had a deadly brain cancer, and I was handling it by looking backward and not forward.

As the night wore thin, I started to listen to the sounds of the hospital. Since I was in a neuro ICU unit, there were no hallway sounds to hear, only the sounds in my room. I could hear and feel the blood pressure cuff on my telemetry bed monitor my blood pressure every 15 minutes.

I could hear the bong on the IVAC IV pump sound off each time the IV line became occluded. This was not a little ding ding ding. This was a deep echoing bong bong bong! If the sound had an illustration, it would look like a large, round, spiked iron anchor sitting on the floor of an ocean being pounded by a smaller round iron object.

A cuff on my leg pumped up and released pressure about every five minutes. I was told the purpose was to prevent blood clots. I think the machine thought I was a turnip and was pumping for blood.

Did I pray and talk to God? Absolutely!

Did I ask for healing? No. I gave him praise and thanks. I looked for and found the same peace and comfort I get each time I pray.

Surgery

On April 28, I underwent an MRI to determine the mapping for the surgery the next day. The young man pushing the stretcher placed a monitor near the foot. I made a comment about having my own personal TV set, and he responded by saying, “That thing probably cost more than I will make in two lifetimes.” Oh great, I thought, two inches from my foot and one small push away is a half a million dollar boo-boo. My foot did not slip and the monitor remained safe throughout the test.

I was first on the list for surgery the next morning. The neurosurgeon had explained how he would go in and delicately remove the tumor. When he described how he would cut the skull open with a horseshoe-shaped incision, all I could see was Charlton Heston in “Planet of the Apes” standing outside a fenced-in area, staring at his flight partner screaming, “You cut out his brain!”

On April 29, “they” cut out the tumor part of my brain. I recall being rolled into a room with a digital wall clock that read 7:17 in red. I knew it was 7:17 in the morning because I had been told I would be the first surgery of the day. I closed my eyes and heard a youthful masculine voice say “in 7:17.”

I opened my eyes, and the red digital clock had been replaced by a “school house” analog clock. I figured the surgery was over, but I could not focus on what the time was. Somehow I guessed it to be lunch time or a little after. I felt good.

I was taken from the recovery room to a neuro ICU room. Really fancy equipment. For the next few days, I was “pushed around” by Lisa in physical therapy to test my stability. On one occasion, she gave me a gentle shove and I came close to losing my balance. She may have taken me seriously when I told her, “one more move like that and you may be wiping your smile up off the floor.” Someone should have warned her about my sense of humor.

The first day, I was allowed solid foods. The young man from dietetics came by to take my order for supper. When he read off the list of available desserts, I heard the word “chocolate.” I told him he did not have to go any further, he had shown me the golden ticket.

Visits from friends

Amazingly there was very little pain. It could be best described as discomfort. Anyone who has ever slept in the gray brush rollers with the pink pokers can identify with the feeling.

Whenever people came in my room, they would always ask, “How ya feel?” I did not want to give the same trite answer of “Fine, I hope you are,” so just for grins and giggles I would often answer “I am in the hospital, I have just had major brain surgery, how should I feel?”

When I realized I may be hurting the feelings of someone who was only trying to be cordial, I changed my response to “Like I have been kicked in the head by an eight-headed mule, wanna see the hoof print?”

Fortunately, I did have a scar in the shape of a hoof print. Sometimes I would make jokes about having to give up pole dancing or being late for my break-dancing class.

Over the next four days, I was blessed with visits from family, friends and neighbors. I received phone calls from former co-workers who are now in Florida. When cuz Rob set out to let people know I was in the hospital, he had no idea how far his reach would go.

No place like home

Four days after having my skull cracked open, a nasty tumor and surrounding tissue removed and a titanium plate put in for protection, I was discharged home to the loving care of my mother and sister. My mother became my nurse and my sister, my taxi and personal assistant. Both get my vote for employee of the year!

Home is always a good place to be. It becomes even more favorable when it is filled with the love of family and friends. Not only did they bring love, they often brought cakes, pies, flowers, fruit baskets and casseroles.

It was not uncommon for one of them to stop by and say, “I am on my way to the Farmers Market. Do you need anything?” Or maybe on their way to another store.

Sometimes I would look out the window and a neighbor would be mowing the lawn in between the time for our regular cuts.

Another neighbor places the morning paper on the front porch near the door.

We are blessed with wonderful friends, neighbors, relatives and the ever-faithful people of Grace UMC. I would not attempt to name all who brightened my day for fear I may omit someone. I even received cards from the churches and Sunday schools of relatives and, in one case, the church of a friend of a friend.

And I did feel the touch of every prayer.

Chemo and the mask

A couple of weeks after my discharge, I had my first appointment with my oncologist.

I took an instant liking to him. One of the first things he said was “I will not sugar coat anything.” Good start. He could manage to be straight-forward and honest and still maintain a strong presence of compassion. Besides, while I was there, I shot off a couple of zingers and he caught both of them. I have to like anyone who can appreciate my sense of humor.

My chemo and radiation began about six weeks after my discharge. Day one of chemo and radiation was not as exciting as I had anticipated. After about six weeks of tests and preparation planning, I was more than ready to get this pony on the road.

The radiation itself was painless. I could have done without the sounds of the Jackson 5 in the background, but I did not see a radio button dial anywhere to adjust the mood music.

I was placed on a table with my personalized mask in place while a machine of sorts traveled around my head delivering a blast to the prime area and other parts of the brain. Occasionally I would hear the “Star Wars” sound effects and only hoped the Storm Troopers did not come charging in wearing their white suits.

As the weeks wore on, I was treated to the sounds of the Temptations, some country music and some music that was one step above elevator music when platform shoes were vogue.

Since I was taking the chemo in pill form at home, it was not too troublesome.

The radiation seemed like a walk in the park the first few days. It did not take long for it to become an unpleasant experience. I could tolerate the table without too much grumbling. It was about the size of a morgue tray and a little more comfortable.

The purpose of the mask was to hold my head in one position so the blast of radiation could be delivered to the precise parts of the brain. When the treatment was completed and the mask removed, it was as refreshing as taking off a pair of too-tight shoes at the end of a 10-hour day.

I think the mask was originally designed as a torture device to extract information from the enemy.The mask became increasingly tighter as the steroids I was taking reshaped my face into chipmunk cheeks and moon-face Minnie. The custom-made mask became tighter each time.

Kojak and Tootsie pops

I don’t remember how long it took before my hair started falling out. I just remember the e-mail update I sent mentioning I had not had any nausea or vomiting. One response said if I did, Tootsie Pops were supposed to be a good cure. I replied that it would go well with my new Kojak image, since my hair was falling out. Without missing a beat, I got two responses telling me to stick a pop in my mouth and walk around mumbling “Who loves ya, baby?”

About a week later, I received a care package in the mail. Packed very neatly with a Roy Rogers CD was a jumbo bag of Tootsie Pops! Roy Rogers was this friend’s hero. As a child, she sat on the front steps and waited for him to come by on his horse. So this was a cherished gift. Also, Roy always ended his show with “Happy Trails (Until We Meet Again).”

Yup, I got some really sharp friends.

Giving up job

It wasn’t long before the other nasty effect of radiation kicked in with a wicked vengeance. I had radiation burns on the side of my head, top of my ear and on the inside of my ear. The only thing I did not have was a glow-in-the-dark look from the radiation.

Unfortunately, I had to give up my job as part-time secretary for Grace UMC. I dearly loved the job and everyone associated with it. There were times I thought I should be paying them for the privilege of working there. But my computer skills had suffered a setback with the tumor, the surgery, the radiation and the chemo treatment. I could see an improvement but knew it would be a while before my mental acuity was where I wanted it to be.

It’s back

I completed all the radiation I could have. Any more and I could be plugged into McGuire Nuclear Station and light up the whole state.

In a couple of weeks, I started a new round of chemo.

About a month ago, I saw the neurosurgeon. He explained the type tumor I had was known as a focal tumor, and all the tumor was in one place. It allowed him to go in get the tumor and a wide area outside the tumor. Sounds like he took part of my brain (a lobotomy?).

He also said I was a good candidate for the list of long-term survivors. My eyes started to pool and I got a lump in my throat too big to swallow. I don’t think he understood I was happy.

In early August, I received the results of a MRI done after the treatment. They were not favorable.

The glioblastoma is back. In less than five weeks, it has grown from nothing to 4 centimeters. The tumor survived surgical removal, heavy doses of radiation and chemo and has left me on the caboose of the long black train.