Photos are included in today’s chunk of my story.
I was lying in the hospital bed and so sick at one point I moaned instead of speaking. I remember being severely ill and silently praying to God that if it was my time, I was okay with Him taking me. A peaceful feeling surged throughout my frail body.
I wasn’t able to see many visitors due to my compromised health. People not seeing me in poor health was okay with me. Besides, my hospital room became like my second home. It often felt like intrusion when people came into my personal space. Nurses, doctors and housekeeping staff were some of the people regularly in my room. A break from outside visitors was a relief.
Rachel was an adorable young daughter of Carrie’s boss at Allstate Insurance. Carrie often took care of Rachel as a toddler and brought her to the hospital to visit me. Rachel peeked through the lowest window on my hospital door (which was perfect for her height) and loudly called my name, “Mamee! Mamee!” I wasn’t allowed to see her up close because of my weakened immune system, but my days always brightened when Rachel peeked through my door.
“I can’t wait to get out of this place,” I said when I was stable several weeks after the transplant.
One Sunday afternoon I was given a pass by doctors to go home for a few hours. Going home was bittersweet because I was so used to life on Seven West. I relearned to walk after lying in bed immobile so long and was still hooked to an IV.
I carried the bag of medication to my bedroom and set it on my bed. A few minutes later I looked at my IV line and screamed because the tubing was filled with blood. I didn’t know then that IV bags need to be kept at a height above your heart. Donte` stood on a kitchen chair holding the bag of medicine until the blood returned to me. The hardest part was returning to the hospital after spending what seemed like mere seconds in my own room in my own home.
Bone marrow transplant patients are not allowed to be around fresh flowers because they are germ-carrying threats. Flowers sent to me in the hospital were immediately removed from my room. At home after the transplant, flowers came through the front door and went right out the back door.
A person from the specialized Survival Flight team was called to my room to start an IV during one hospital stay following the transplant. Nurses were unable to access my bruised veins after years of needle pokes. He was successful the first try.
“That’s so weird, how can you sleep like that?” asked Sarah, commenting how unusual she thought it was that I slept sitting up.
My Mom and I both slept sitting up after returning home. Many nights of my Mom sleeping in a chair and my bed adjusted to a sitting position programmed our bodies to continue the style at home.
I didn’t like unexpected visitors coming to my house. Wherever I was at the time company arrived, I was stuck. I didn’t wear my hat around the house all the time and was not keen to show people my bald head. Therefore, I was often caught without a hat and stuck in that spot until the people left.
One weekday morning my Mom and I were at Twelve Oaks Mall at a time when few people are likely to be shopping. Mask-free, I tried on clothes during this rare time when I experienced the outside world after being confined in the hospital or at home for so long. My Broviac bandage came undone as I tried on shirts (the tube was flailing with every movement I made instead of taped securely in a loop on my chest). I kept the news of the loose Broviac line to myself because I craved the fleeting freedom I experienced.
I received IV medication through my Broviac at home on many occasions. One time I received an IV antibiotic daily. Every morning I took the antibiotic from the fridge (the container fit into my hand), hooked it to my Broviac tubing and put the medicine into a pocket of my grey cargo shorts. I walked around the house or watched television for about half an hour until the medicine was finished.
With my teenage years full of chemotherapy and other treatments, I was glad to have a full head of hair for my license picture when I turned sixteen. I was happy to be well enough to receive my permit and driver’s license when I was not sick and had hair on my head. My hair growth was severely impaired following the chemo that preceded the bone marrow transplant.
I received a “welcome” the first day of school in eleventh grade I never could have predicted. Ecology was my first class and the teacher singled me out as I chatted with a few friends by the windows before class began. She stomped toward me with a furious look and menacing tone.
“TAKE THAT HAT OFF RIGHT NOW! HATS ARE NOT ALLOWED IN SCHOOL!” raged the teacher. I stood still, stunned, while she screamed at me for wearing a baseball cap. Little did she know I was given special permission to wear a hat over my chemotherapy-balded head. My cheeks burned with embarrassment and I was incredibly uncomfortable because I was already more than conscious of being the only student wearing a hat. The principal failed to notify teachers and staff before school began of my exception to the “no hat” rule.
My favorite class as a junior was newspaper. I enjoyed the freedom working as a writer and eventually co-editor for the school newspaper, The Eagle Eye. Students left class whenever needed to gather information for a story. My first article was about a school secretary who donated her bone marrow to a young boy who needed a transplant.
I was hired to work at Gap as a seasonal sales associate when I was sixteen. I worked at the clothing store from September through December 2000 and was underpaid and overworked. Gap remains one of my favorite stores, but working at that particular Gap location was not a good experience.
I finished my junior year of high school at home after leaving around April following a second relapse discovered in March 2001. Doctors were guessing by this time how to treat me. My condition, according to doctors, was out of the textbooks because my symptoms did not follow protocol. I received 60 doses of an investigational drug called Arsenic in the Cancer Clinic.
My Mom and I met another mom, Beth, who was in the infusion room while her two-year-old daughter, Holly, got treated for cancer. One time Holly was near me and got up to leave. She dragged the IV pole with her, accustomed to pulling it wherever she went.
“Stop, Holly!” yelled our moms.
Holly forgot she wasn’t hooked up to an IV – the pole was mine! Beth and my Mom jumped from their seats to rescue my pole so my IV line wasn’t yanked from my chest.
I once did something similar while admitted on Seven West. After being so used to dragging an IV pole beside me, I got up from my hospital bed to brush my teeth. I rolled the IV pole alongside me, forgetting I wasn’t hooked up at the time. My Mom and sisters were in the room and shared a good laugh.
I was told to stop getting Arsenic after Dr. Mody heard a few patients receiving the investigational drug suddenly dropped dead. I continued on the investigational study when it was learned the patients were all overweight middle-age males.
Learning to knit helped pass time during the long hours of Arsenic infusions. A hospital volunteer named Ann, who lost her son years ago to leukemia, taught me to knit. She volunteered regularly at the Cancer Clinic. Ann taught me to knit scarves, dishcloths and purse slippers. I knit colorful scarves for family and close friends and sold some dishcloths as well. Arsenic was unsuccessful in making me cancer-free because I relapsed less than one year later.
I was able to complete the first semester of my senior year of high school. Following my third relapse discovered in January 2002, I received stronger chemotherapy than I ever had before. I was relieved to go home. I was so weak my Mom helped me walk from the couch in the family room to the nearby bathroom. I was too sick to talk but I thought, There is no way I can walk back to the couch. Next thing I knew, I was lying on the carpet with my Mom giving me mouth-to-mouth. My low blood counts combined with the grueling chemo caused me to collapse.
I was severely ill and rushed back to the hospital. IV fluids leaked into my tissue and ballooned my weight from 115 to about 170 pounds. The condition was called third spacing. Kidney dialysis was used to remove the excess fluid from my body.
I was scheduled for a low intensity bone marrow transplant in May 2002. Dr. Yanik began paperwork to petition the hospital for permission to give me the transplant because I was so ill. Dr. Levine told me later that second transplants aren’t usually given to patients after a third relapse, but my fighting attitude convinced the BMT team to continue treatment.
Dr. Cooke, who moved from Boston to work with the pediatric BMT team, was a great doctor to work with. Dr. Hutchinson, also an excellent doctor, was on the bone marrow team as well.
Protocol included full body radiation prior to the transplant, which was low intensity because my body couldn’t withstand a full blown transplant. Nurses forgot to give me anti-nausea medicine before my Mom took me to radiation for the first time. The radiation gave me a headache and queasy feeling. Unfortunately, someone set off an alarm in the hospital that stopped the elevators from working.
“I feel nauseous,” I told my Mom as we hurried back to my room. A doctor with a key to the stairway let us use the stairs. I barely made it to my room before I threw up all over the floor.