Acute Myelogenous Leukemia (AML) Subtype M3. That was the official diagnosis of the bone marrow test. One infected cell (nonfunctional) within the marrow multiplies and crowds out the normal cells. As a result, a decrease in red blood cells and white blood cells destroying the body’s immunity and opening the possibility of infections. Causes include cigarette smoke, types of chemo and radiation treatment for other cancers and exposure the large amounts of benzene (a chemical found in pesticides, plastics, detergents to name a few). My mother smoked briefly in her life in an effort to lose weight but this did not last long (she didn’t even inhale). She had never had chemo or radiation before. After researching benzene, I could not even begin to guess where my mother could have come in to contact of “high doses” of the stuff. Then of course there was genetics. My brother had passed from Leukemia forty years prior but not AML. The doctor said there was no indication genetics played a part in this. So what could have caused it? I ask this question even to this day.
The doctor did the best he could to prepare us of what could happen and Mom’s treatment plan. I always had the feeling though the doctor never fully told us everything. Not that he did not answer questions, he did. But I always felt unsure of the responses and I felt there were more answers but I did not know how to follow up with the right question.
Induction (initial chemotherapy treatment) had already started. Mom was to receive four chemotherapy treatments. One week chemotherapy treatment, followed by three weeks rest in the hospital or in my home, followed by one month at home in Carthage. Then, do it all over again. He warned us Mom was going to lose over a quarter of her body weight. At this point, I couldn’t help but start laughing. The doctor looked at me as if I had gone mad. With a giggle and guilty response I explained to him our family genetics with weight. “Our family is large people. Believe me when I say, we will not have a problem with weight loss.” Mom agreed by nodding her head up and down.
“Considering your age, health prior to the Leukemia and the will to beat this thing, the prognosis is 70% chance remission.” When the doctor was explaining these details, we were clueless to the terms and jargons he was using. Fortunately, Mom was an outstanding administrative assistant in her employment days taking great pride in her note taking and attention to detail. She took notes as the doctor spoke. My talent lay with finding resources. The next day, I would go to the Leukemia and Lymphoma Society and gather as much information as possible to decipher the doctor’s prognosis. The Leukemia and Lymphoma Society ended up being a great support to us and sometimes felt like they were the only people who understood our plight. With all the information I collected, I always sat and read everything before giving it to Mom. Mom was a hypochondriac and I didn’t need to let her read overly dramatic literature that would reinforce any negativity with her diagnosis. I found the information from the Leukemia and Lymphoma Society to be very patient and family friendly and I was quite comfortable with giving Mom the booklets.
“Will I lose my hair?” Mom asked with great concern. If there was one thing I inherent from my Mother, we are both vain. My Mother raised me to “never go out of the house with your makeup on.”
“I don’t know” the doctor admitted. “Some people do and some don’t.”
Remission! Most people do not understand what remission means. Most think it simply means the patient is “cured”. Remission is defined being cancer free for more than five years. The first year being the most difficult to achieve. So, the prognosis was, Mom had a 70% chance to be Leukemia free after five years. If you are a gambling person, the odds are in our favor! If you are my Step-Father, the pessimistic, there was always that 30%.
The first series of chemo was not as bad as expected. Mom’s appetite did diminish during the week. She complained everything tasted like metal, even water. They gave her medication during chemo that discouraged getting sick and it appeared to be working. She started to run a fever after the first dose. There was a concern she may have an infection so antibiotics were started. When week one was completed, she had lost 10 pounds and was wiped out.
Her appetite came back immediately and the 10 pounds within one week. With my daily visits, I would bring her treats and sometimes full dinners on the weekend. I had to travel a lot for my job so I gave her a calendar and wrote everyday where I would be…Glens Falls, Johnstown, Ithaca; along with every emergency phone number to find me or Bobby. We were fortunate to have a mild winter and I went to visit her everyday after work. Bobby came up every other day. I decorated her room with family pictures and a Yankee poster. She started receiving get well cards by the galore. Mom was a very popular person. She never missed anyone’s birthday, wedding, baby, funeral or get well. Some sent flowers and plants. She could not have flowers and plants in her room so I would take the plants home, take a picture of them and then put the picture up in Mom’s room.
During the second week of January 2006, I came to visit Mom one afternoon and she was laying in bed on her back watching Judge Judy on T-V. I walked up to the side of her bed and she said “Tammy, I think I am losing me hair. I have hair all over my pillow.”
I looked down at her and did notice a couple strands on her pillow but did not see anything obvious. “I don’t see anything Mom. Sit up; let me look at the back.” When she sat up, a bolt of shock ran through my body straight to my heart. The back of her head that was lying on the pillow was completely bald. Large clumps of hair remained on the pillow. As she rested back on the pillow, I desperately tried to hide my shock and quickly found the words to tell her she was going bald.
“Don’t worry Mom, I will get ya a wig…a nice wig. We will get scarves too.” I searched for the correct words to use.
She didn’t cry and agreed with me. The next day, I had located a woman who came to the hospital with an assortment of wigs for Mom to try on. Mom selected the one she liked and a couple scarves. I wrote a check out for $100 to the lady. I also bought Mom a pink Yankee cap.
By mid January, the doctors started to give her these shots for one week that would boost her cell growth and immunity to endure life outside of the hospital.
On January 14th, I stood outside my home smoking what would be my last cigarette and reminiscing the past three weeks. The first week was just plain fear due to lack of knowledge. After you become educated, the anger starts to manifest deep inside and grows. I started to think about my Mother’s primary physician. “Why wasn’t the doctor more assertive? Why didn’t she insist on Mom getting into the hematologist faster? Why isn’t Frank here to support his wife (he did come one day; a friend drove him)? How much more convenient can I make it for him?” My internal thoughts became toxic growing blackness over my heart and my perspective. This moment was the start of my own world spiraling into negativity and blame. I would have to take control to make everything right. I was the one who would be the advocate for those who had no voice. I became angry….bitter angry…. at everyone. Everyone but Mom and Bobby. My Mother and Bobby remained the only purity in my life. I took a drag off my final cigarette and stared at it. I was going to be an advocate with the Leukemia and Lymphoma Society….I can’t do that if I smoke. And with that, I put out twenty years smoking.
On January 18th, Mom came home with me. On the 20th, I took her home to Carthage for one month. Although he called everyday, my step-father Frank visited only one day.
