In the beginning

The Facts

Penny had been scrambling her words and sometimes unable to conclude a thought. She told her doctor who order a CT-scan on Friday 1/2/09. The scan showed an abnormal something in the left side of her brain. The radiologist at the imaging place wouldn't let her drive home. She called and Mike went to retrieve her and take her to CHARLESTON AREA MEDICAL CENTER General Hospital where we waited for quite some time (eight hours) before finally being admitted. An MRI on Saturday showed two tumors -- a walnut sized one at the base of the scull that appeared calcified and inactive. A second, larger tumor, was clearly visible over the left ear. This tumor was likely the cause of the speaking problems. The best neurosurgeon in Charleston would be consulted. A doctor friend said he thought the larger (half medium orange size) tumor may have been around since childhood. We waited for the neurosurgeon to look at the MRI pictures and give us a reading on what to expect.
Bulletin written on 1/3/09 by Mike Youngren

The Story

On Christmas Day, 2008, I was speaking on the phone to my daughter, Nicole, when I garbled a few words. It took me a couple of tries before intelligible words would come out of my mouth.

“What’s wrong? What happened?” she asked. Brushing aside her concern, I continued talking without further incident. This was not the first time I’d stumbled in my speech, just the first time I was “caught”.

Whenever I would notice signs that I might have any health issues, I first minimized the symptoms, then made a diagnosis, researched my symptoms on the internet, and sometimes interviewed my friends asking if they’d had similar problems. If I thought taking vitamins or minerals, changing my diet or exercise, I’d follow my own advice for a while before calling in a consulting physician. Most of all, I kept my concerns hidden – even from myself. But, when Nicole found me out, hiding was no longer possible. No longer could I hide from the changes I’d been noticing over the previous eighteen months; symptoms like fatigue, changes in my handwriting, and tripping when taking a walk.

Two days later I expressed my concerns to my trusted friend and minister, Rose Edington, as we along the river. It was my belief, based on my recurring speech difficulties, I’d been having Transitory Ischemic Attacks (TIA’s or mini-strokes). Rose urged me to see a doctor without delay and I promised that I would. Now I was scared, but also relieved to have my secret revealed.

Scared, but unclear as to how best to proceed; unclear what level of concern was most appropriate. Should I call the doctor or skedaddle to the emergency room at General Hospital before I had another mini-stroke? I turned to my friend and neighbor, Doris for help. She suggested I ask our doctor friend, Greg. Seeing I was hesitant to call him, Doris dialed his number before handing me the phone. After briefing him on my symptoms, he suggested I make an appointment with my primary care doctor who would most likely arrange for diagnostic testing. Unless I started experiencing symptoms once again I could skip the ER experience. Before we hung up, he requested I let him know what happens. I agreed.

At dinner, I matter-of-factly reported to Mike what had been happening to me, what I learned from Greg, and that I would be making an appointment with Mellissa (Dr. Gamponia) as soon as possible. The news landed with a thud. Utterly stunned, Mike said very little. I could tell he was upset.

Mike accompanied me to the doctor’s the following Monday where I learned that my diagnostic skills might be somewhat less than accurate and that a variety of tests would be ordered. On the next day I was given dates for three tests, the first being a CT-scan on January 2nd, at noon at the Imagining Center. A little before noon that Friday, I assured Mike there was no reason for him to go with me since results wouldn’t be available.

“See you in a while.” I called walking out the door not knowing my life was about to take a very sharp turn.

As I walked into CT-scan room, I focused on being curious instead of worrying about how strong the radiation might be. The radiation tech asked if I'd ever had a CT-scan as she showed me where to lie down. After I was properly placed and instructed, the machinery started grinding and the tray slid me into position for the scan. I forced myself to keep my eyes closed and my mind focused on my breath so as to avoid feeling claustrophobic. The noise was annoying but not unbearable as I’d expected. The entire procedure didn't take very long before the machine went silent. From having experienced mammograms, I deduced the radiologist was making sure the pictures were clear enough for a good read.

Before I could lift myself up to stand, the tech was at my side, solicitously helping me into a standing position and asking if I felt okay. This was in sharp contrast from her casual demeanor earlier alerting me to danger. My hairs snapped to attention as I noticed the man striding toward me and introducing himself as Dr.____. I didn’t hear his name. I did hear him asking if I'd been having any trouble with my balance, or having headaches. Getting right to the point, he said, "Your CT-scan shows you have two abnormalities in your brain. Come into the lab and I’ll show you.” I dumbly followed him into the lab, my legs beginning to quiver.

Unthinkable! The radiologist pointed at my tumors and spoke about how my brain was being compressed and was swelling while I was withdrawing into myself. I became more aware of everyone else in the room than I was aware of myself. Their discomfort with the situation was palpable. Shock! I felt tiny inside my body, trying to escape, to stop what was happening. The radiologist continued asking me about symptoms, “Have you had any falls? Any seizures?”
And finally, "Do you have someone with you who can take you to the hospital?"

"Right now?" I gasped.

"We will call the hospital and tell them you are on your way. Do you have someone with you? You should not be driving because you could have a seizure at any time." he insisted.

"I drove over here and it's only a couple of miles. I can drive home and walk to the hospital. It's only two blocks from home."

"We cannot let you drive." he repeated.

By this time I knew I was in no condition to drive. My legs wouldn't stop shaking.

I reached for the phone after they dialed our home number, "Mike? Can you find someone to bring you to the Imaging Center? They won't let me drive. It seems I have two brain tumors and they want me to go to General Hospital immediately."

Silence and I heard Mike say, "Ten minutes ago you were perfectly fine. What happened?"

The radiologist and the radiation techs stayed quietly with me until Mike arrived. Once again the radiologist introduced himself and again I didn’t hear his name. As the doctor spoke with Mike, describing the problem as he pointed to the pictures on the screen, I tried to follow the conversation. I remember learning that one tumor was compressing the left temporal lobe to such a degree that it seemed to have penetrated the brain tissue causing edema. In spite of my shock, my curiosity peeked through as he explained the pictures.

Stunned and in shock, everything felt very far away – surreal Mike took my arm and guided me out of the building and into the car after thanking the radiologist. In a haze, we went home to have lunch before proceeding to the ER. Thinking wasn’t happening. I had no room in my mind for thoughts beyond tumors, hospital, tumors, hospital, over and over.

We arrived at CAMC’s General Hospital’s ER a little before 1:00 p.m. It was unusually busy even for a Friday afternoon. It was standing room only shortly after our arrival. Extra chairs were hauled into the ER and the hallways for the sick, the injured and their families. More people arrived, and In short order it was SRO again.

Thirty minutes after we sat down, our friend Lois appeared having already been treated for her difficulty. As she walked toward us I leaned over to Mike saying, "So much for not telling anyone.” Lois was in the middle of telling us her story when it dawned on her there must be a problem with one of us. She wrongly guessed it was Mike. After hearing our tale she left expressing her hopes and prayers for me. We didn't have to wait long for Mike's phone to start ringing. Connie and Chuck phoned were the first to call asking questions and offering assistance. The word would quickly spread for Charleston is a very small town.

Mike asked why I couldn’t just get admitted without sitting in the ER. It took me two hours to remember that my PCP gave up hospital privileges when she closed her private practice and began working at a clinic. At the time, hospital privileges didn’t make any difference to me. I never got sick and I couldn’t imagine my ever needing a hospital. Once I realized how long it might be before I’d get any attention, I decided to honor my agreement with Greg and let me know what had happened so far. Maybe Greg could help. Not having his phone number with me, I had to rely on mutual friends. Two calls to two friends later, I was explaining what had happened and where we were sitting, he said, “I’ll fix it.” And, he did. With his help, I got a bed by eight o’clock that evening.