Portraits of Care -- Essay 5

December 09, 2008

picture disc.
Jason Shoo, a medical assistant at The Nebraska Medical Center and a head and neck cancer survivor, is featured in this charcoal drawing by Mark Gilbert. This is among the many images that will be featured in Gilbert's "Here I Am and Nowhere Else: Portraits of Care" exhibit at the Bemis Center for Contemporary Arts.
Leading up the Dec. 12 opening of Mark Gilbert's "Here I Am and Nowhere Else: Portraits of Care" at the Bemis Center for Contemporary Arts, UNMC Today will run a series of essays that detail the experiences of patients, loved ones, health care workers and others who were exposed to the project.

Gilbert, a Scottish artist, composed the works that make up the exhibit while serving as UNMC's artist-in-residence for two years.

During his time at UNMC, Gilbert drew portraits of many different patients and their caregivers.

The patients, who included children and adults, were dealing with a variety of health promotion and illness situations from childbirth to medical conditions such as AIDS, head and neck cancer or some sort of organ transplant. Most of the collection will be on display at the Bemis Center for Contemporary Arts through Feb. 21.

Today we feature an essay by Jason Schoo, a medical assistant at The Nebraska Medical Center and a head and neck cancer survivor who took part in Gilbert's project.

I participated in this project to share my situation and to inspire and instill hope in other cancer patients and individuals dealing with serious dilemmas. I was diagnosed with sinus cancer (olfactory neuroblastoma) in 1995. I have received 12 surgeries, 11 different chemotherapy treatments and 60 treatments of radiation. These treatments exclude any that I received for the metastasis to my lung in 1997.

I would like to share with you and others why I believe cancer was a gift for me. When I was diagnosed in 1995, I was only 22 years old. I felt I was invincible and had the world by its horns. I had no idea what it took to be patient, to persevere or to fight a deadly illness. At this young age, I had no idea what cancer was nor of its treatments and prognosis. I was about to find out.

Kickoff and opening

A kickoff event for the "Here I Am and Nowhere Else: Portraits of Care" exhibit will take place Thursday from 7 to 9:30 p.m. in the Witherspoon Concert Hall at the Joslyn Art Museum. The event will feature remarks from the exhibit's creator, Mark Gilbert, as well as Ted Kooser, former U.S. poet laureate and Pulitzer Prize winner who was treated by UNMC's Bill Lydiatt in 1998 for tongue cancer. Malorie Maddox, morning anchor for WOWT (Channel 6), will serve as emcee for the event, which is free and open to the public. The exhibit officially opens at the Bemis Center for Contemporary Arts on Friday.

My original surgery in 1995 included the removal of tumor (7 centimeters by 3.5 centimeters) and the surrounding structures, which included a portion of my left orbital floor, most of the sinus, the left upper jaw and half of the soft palate. Obviously I went through some reconstructive procedures, too. About one month later, I was to start radiation but the treatment plans were altered because the tumor had already reoccurred. I then received my weeks of chemotherapy treatments, which were followed by 35 treatments of radiation. After all these treatments I had an MRI and a follow-up appointment with my physician.

I thought for sure all my cancer was gone! I endured all the treatments. I was feeling well and looking good, but exhausted. My physician entered the room to deliver the news, "Your tumor has shrunk significantly, but it's still there." I was told I couldn't receive any more chemo or radiation treatments due to the high-level tissue and organ damage they might cause and that I had a six months survival rate. My mind, heart and spirit had nothing else to give -- I was devastated!

A week or two later the sadness and depression lifted as my family and I began to fight again. We looked for alternative treatments. We found one! It was going to be an experimental procedure with more chemo and 25 more treatments of radiation. By participating in the experimental treatments, I took a huge risk because of the damage these treatments could cause to my face and other organs. I had my optimism back and was ready for that small chance of hearing my physician say, "You are in remission."

After six weeks of the experimental procedure and treatments, I once again had an MRI. The physicians and I felt really good about the treatments. I then received a phone call in June of 1996 with the results of the MRI. I was told the tumor was still there and that I needed to have surgery. Once again sadness overwhelmed me. I cried for hours.

The surgery was to include a total resection of my left eye and my nose with massive reconstruction. I was told even if they performed this surgery there was less than a 1 percent chance of this cancer never reoccurring. You are probably asking yourself the same thing I did, "Why have the surgery then?" I wanted to live, didn't want to leave my family, and I had come this far and wasn't ready to give up hope.

Five days before the surgery we performed another MRI that revealed the tumor was still there. The day of the 23-hour surgery I prayed, read the Bible and read the calendar Bible verse for the day. Prayer was the source of my strength; it helped me to fight, to stay optimistic, to persevere, to be patient and have faith in God, my higher power. That morning in my preoperative room, I was laying on the bed praying and crying when a surge of calmness and peace came over me. I saw a white cloud/fog from under my closed eyelids. I began to feel I was moving closer to this light or my spirit was floating away from me off the bed. None of this made sense at the time. Next they came and rolled me into the operating room, which was the last thing I remembered until the physician was standing over me with two fingers in the air. As the physician was standing there with his fingers in the air the lights above them began to flash. I asked what are the two fingers for and the physician replied, "You have both your eyes and nose." I began to pat my face in disbelief as if I was surreal. I realized I wasn't dreaming and this was real. The physician then proceeded to tell me that the tumor wasn't there and it had miraculously vanished in those five days.

As you can see by the portrait, I still have both my eyes a different style nose but its still there. As for the lights flashing, the hospital was struck by lightning when I awoke. I believe someone came to save me that day and was going to make sure I knew it.

I continue to live day by day, take nothing for granted, and help patients that may go through similar situations. I am very thankful for the miracle, the mercy and the inner peace the Lord has provided me. I hope others can use my fortune to understand the battles, the perseverance, the patience and the hope and optimism it takes for all situations. I always say a person must keep living, loving and laughing. We must give up control -- God is in control!