Wrapping up my cancer story

A few pictures end up in today’s final slice of “Legally Bald & Sentenced to LIVE.”

Two doors down from me on Seven West was a five-month-old baby girl named Leah. My dad and sisters gave her bottles and took care of her whenever they visited me. After leaving the hospital and living in foster care with a nurse from Seven West, Leah was a regular visitor to my room. The nurse, Lori, lived so close to the hospital that she brought Leah to visit whenever I called (a few times a week). Lori ended up adopting Leah and my family continues a strong relationship with her. She visits my house every few weeks for two or three nights and always brings humor to our home.

The low intensity bone marrow transplant at age eighteen changed my blood type back to O positive. My first donor was a 6/6 match and the donor’s blood type was O negative. I was glad to return to my original blood type. The only information I was given was that my donor was a 33-year-old man. He donated 17 million bone marrow cells to me; doctors wanted at least four million.

I learned after one year that my donor’s name was Kevin and he was in the Air Force. He sent flowers to my house after learning my address. I met Kevin when he had a layover at Detroit Metro Airport when I was twenty one. My parents, Sarah, Leah and I enjoyed the brief meeting, finding Kevin kind and easy to talk to.

Dr. Yanik commented how hard it would be for police to find me if I murdered someone. “You’ve had so many transfusions that blood at the scene of the crime would be difficult to trace to you,” he said. I rejected the bizarre idea but found the “sick” humor amusing.

I continued my high school education while battling leukemia. A classmate named Michelle delivered a videotape to my house during my senior year of high school. A white sticker was taped to the video that read “Amy Barta’s Get Well.” The video featured students wishing me well and telling me what I wasn’t missing in school. My favorite part of the video was three boys who sang, “Get well soon, Amy!” One of the boys broke apart from the group and sang solo, “Oooh yeah! Won’t you get well soon?” The boys had good voices and their animated singing cheered me up.

The time I utilized for schoolwork during long days in a hospital bed or receiving transfusions paid off. I was too ill to attend my high school graduation, but I graduated on schedule and was seventh in my class of 223 students.

Since my plans after high school included attending the University of Michigan-Dearborn in the fall of 2002, I also used time in the hospital to write essays for college scholarships. I talked on the phone in my hospital bed to a woman from a scholarship committee because I was unable to attend an interview in person. I was so sick I barely had breath to talk. My efforts were not in vain. Several times I received news in the hospital I won scholarships I applied for.

I enjoyed “breaking in” new resident doctors. Residents timidly approached my bedside and asked, “Can I feel your stomach?” (part of a routine exam). I gasped in pain after their hands touched my stomach. The residents always recoiled and their eyes widened. Their hands instantly retracted as they inquired with concerned voices, “What’s wrong?” I laughed and informed the residents I was kidding. I was introducing them to hospital life. Fooling residents was one way to get a laugh during the difficulties of cancer treatment.

I didn’t always fool rookie residents, though. I met a great resident named Pete Aziz. I wrote a poem for him titled “Hospital Hostage” because I was admitted to the hospital with low blood pressure; since my blood pressure normally ran low and I was never symptomatic, I felt trapped in the hospital without good cause. Part of the poem read:

        I have not taken a turn for the worst,

        But I met Pete Aziz, he’s a resident, this year is his first.

        Great bedside manner, but lots more to learn,

        Have no fear, there is hope for this rookie intern.

Pete laughed hard after hearing the poem and had me write a copy for him to share with his colleagues.

Sarah bought me a “regular” hat to wear to college instead of a baseball cap. I eventually agreed to wear the hat after I decided Sarah was right: the hat looked ten times better than a baseball cap.

I was enrolled at the University of Michigan-Dearborn in September 2002 after a fourth relapse was discovered in August 2002. My eyes turned fuzzy at random times and I couldn’t see clearly for a few minutes. Doctors dismissed my complaints of blurry vision and said my eyes were better than theirs.

Knowing something was wrong, my Mom took me to neuro-ophthalmologist Dr. Trobe, who informed the BMT team something was seriously wrong. The leukemia, it turned out, was in my spinal fluid. I opted for cranial/spinal radiation instead of just spinal, in case the cancer spread to my brain.

Patients receiving radiation are sometimes tattooed with tiny blue dots to ensure the correct area of the body is radiated each time. Even though I was told by doctors I would be tattooed, I was extremely relieved to hear the radiologist technicians say they would mark my spine with washable marker.

I learned that cranial radiation and claustrophobia do not go together. My head was held perfectly still for cranial radiation by a cage-like device. I soon became able to tolerate being facedown with my head strapped to remain immobile after initial anxiety. Unlike most people, I felt the radiation waves penetrate the back of my skull. A nauseating feeling overcame my body each time I received cranial radiation.

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One time my Dad accompanied my Mom and me to a radiation appointment. I told him all people, whether patients or family members, had to wear a hospital gown before entering the radiation waiting room. My Dad readily agreed to wear a gown. I raced into the women’s changing room and quickly put on a gown. My Dad emerged from the men’s changing room a few minutes later, flustered because he couldn’t tie his gown in the back. I tied the gown for him and we walked to the waiting room.

My Dad was the only person who wasn’t a patient who was wearing a gown! I tricked my loving-but-naïve Dad into wearing the gown. What’s more, my Dad wore shorts under the gown; the shorts weren’t visible, so it looked like he wore the gown by itself.

Radiologist technicians later said they wondered who the man was who wore a hospital gown because nobody recognized him as a regular patient. My doctors shared a good laugh when I told them about the incident.

Chemo was injected into my lower back twice a week in addition to radiation. Attending school and having radiation and chemo proved too hard to continue. I was too sick to attend college classes while undergoing cancer treatment. I withdrew from my classes and began college again in January 2003.

The preceding story is the short version of my experiences as I fought for my life. Thankfully, Dr. Cooke was helpful during the time prior to the diagnostic brain surgery. He scheduled me for several necessary Magnetic Resonance Imaging Scans and ultimately helped to smooth the progress leading up to the surgery.

The brain biopsy on May 14, 2003 revealed that neurotoxicity on my damaged brain stem was the cause of my symptoms. A titanium screw was used to close my skull. The neurotoxicity was probably caused by the combination of radiation and the chemotherapy drug Methotrexate.

One important lesson I learned is that good friends, true good friends, stay by your side and offer support and encouragement no matter the circumstances. Two of my good friends, Jessica and Lisa, I have known since I was a young girl and both remain great close friends. Beth, Bethany and Mandy, as well as the McBays, parents Chuck and Jo and children Chelsea, Gabriel and Breanna, are all trustworthy and close friends.

The most important lesson I learned in college was from linguistics professor Dr. Daniel Davis. His courses included students giving presentations relating to course material. Students were instructed by Dr. Davis to respond in writing to presentations with positive feedback. I tried to focus on positive, not solely negative, aspects of my struggle when writing about my experiences fighting cancer. Focusing on positive feedback, I learned firsthand, gives me a positive attitude as I recall events.

The most difficult part of college was being ill while simultaneously going to school. Several times I threw up in a bucket in my car between classes. I was determined to achieve a degree and at different times throughout my ten semesters, I attended college wearing a walking cast, riding in a wheelchair, and walking with a cane. My Mom was my biggest advocate and sacrificed time and energy to drive me to and from school. She wheeled or accompanied me to classes and also carried my backpack.

I graduated with high honors from the University of Michigan-Dearborn with a bachelor’s degree in Journalism and minors in Psychology and Linguistics on April 29, 2007 at age twenty-three.

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Never before did I appreciate the simple abilities people use everyday without a second thought, like seeing and walking. I often wear contacts or glasses because GVHD weakened my eyesight. Facial paralysis tightened my facial muscles to prevent me from smiling. I wear a hat because radiation and chemo eliminated my ability to grow hair. I walk with a cane because neurotoxicity caused me to be unbalanced. Some people who see me with a cane treat me as though I lack intelligence. They’re wrong.

The only thing I lack is hair.

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THE BEGINNING

 

 

 

 

 

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