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Chapter 6: January 2006 Induction and Wearing a Pink Yankees Cap

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.

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Chapter 5: Sunday, December 25, 2005, Holidays in the Hospital

How do you make Christmas special for someone stuck in the hospital, just informed they had a life threatening disease and separated from her husband of 29 years? This was the dilemma before me.
We had planned on entertaining my husband’s family for Christmas. Although the family said they understood and could cancel the dinner, I knew my husband always looked forward to the dinner and I did not want to disappoint him. Dinner on!
I planned the menu and calculated time to cook and time to “reheat”. My husband is as far as anyone could be from the galloping gourmet. On one occasion, I had come home from work with a migraine. Bobby told me to go take a nice hot bath and lay down. This was my normal remedy for the migraine headaches that plagued me for most of the first half of life. I had fallen asleep for a few minutes and woke to the sound of pots and pans clinging in the kitchen. It then comes to me that my husband is “cooking”. The thought alone shot images of black smoke and the fire department outside our house. Feeling much better, I jumped up and wondered into the kitchen where Bobby was sitting watching t-v.
“Hey! How ya feel?” Bobby said.
“Better. Ughhhhh, whats ya doin?” I said scanning the kitchen for an open flame.
“I’m makin myself somthin to eat.” Bobby said holding his attention to the t-v.
“What are you making?” I asked seeing no food items out.
With a great deal of confidence, Bobby said “Chicken!”
My eyes rested on the oven door. “Chicken? I didn’t have any chicken pulled out of the freezer.” I walked to the oven which was set for 300 degrees and opened the door. There in the oven sat one frozen chicken thigh on a pie tin. With the oven door still opened I turned to Bobby who was looking at me with innocence. I said “I think your chicken dinner will be ready in about six hours.” I then started laughing so hard, my migraine nearly came back. Bobby just glared at me in jest.
We had already celebrated Christmas because of the unpredictable weather of the North Country in New York so we had exchanged gifts at Thanksgiving. When Mom was transported down here, she did not bring anything with her so Christmas shopping all over again was easy but I had to work fast. I bought her some night gowns, slippers, a terry cloth robe, personal care items, a deck of cards, body lotions, a pocket date book (which later is helping me to recall specific events), pens, notebook, and an electronic solitaire game. I also bought a one foot plug in Christmas tree with lights at Rite Aid. On Christmas Eve, I decorated Mom’s room extra décor I had at home, put up her tree and placed the wrapped gifts around the little tree. I did give her some of things ahead of time as she needed them immediately. As I decorated, the nurses outside were hustling patients expeditiously to the elevator trying to get people home for the holidays. Some nurses congregated at the nurses’ station chatting about their holiday plans with their families and nibbling on Christmas cookies given by patients and their families.
“Could you bring cookies or something for the nurses tomorrow Tammy? I feel bad they have to work on the holiday and they are so nice.” Mom was also sensitive to others and wanted to do for them.
I had dinner prep figured out and ready to implement and I could spend most of the day with Mom. The only other detail was my Step Father, Frank. At 76 years old, Frank had mellowed out in his senior years but still posed “quirks”.
In my younger years, I truly disliked Frank. He was not physically abusive to my Mother but I may question psychologically and verbally. He seemed to gain pleasure when he mocked her weight, attacked her beliefs or yelled about something she did. I would sit there and glance at my Mother who would display facial hurt perpetuated by her need to please him. He angered me and we would fight. Mom nearly divorced him when I was younger because of my resistance to the marriage. In my senior year of High School, I had abandoned my anger and now looked to the future away from the house and from him.
After college, I moved to Schenectady, NY and had a small apartment. Bobby and I had started dating November 1986. On Thanksgiving Day, I was supposed to be on my way north to have dinner with my Mother and Frank but Bobby and I were together and did not want to separate. I called once before I left to say I was going to be late. I made the three hour trip and was over an hour and a half late. I walked into the kitchen.
“Where in hell have you been?” Frank exploded.
“I called I was going to be late!” I bellowed back.
Frank returned “Your Mother has been cooking all morning and has been worried.”
There were a few other words in there I cannot recall or for whatever reason, I have blocked them from my memory. I do remember saying as I walked back out the door I had just come through “I’m 20 years old and an adult. I don’t have to stand here and take your shit anymore.” And with that, I drove three hours back to Schenectady. When I got home, I called Mom and apologized for my behavior. That was the last time Frank would yell at me.
Even though Frank had mellowed out with age, he now had a few other issues including just having a pace maker in two weeks prior. Not only was he uncomfortable with being in places he did not know, he refused to drive in cities. That includes Albany. Understanding his fears and Mom wanted him near by, Bobby and I started working on a plan to get him here to support Mom. Albany Medical Center is located near The Albany Veterans Administration Hospital. Right in front of the hospital is “Fisher House”. Fisher House is a program that supports veterans and their families in times of need. That would include a place to stay. I would present Frank with choices. He could stay with us and either Bobby or I could drop him off at the hospital and pick him up in the afternoon. Or, he could stay at Fisher House and walk to the hospital (or a cab). We would drive to get him and take back north. Frank refused all of the above.
Even now for Christmas, he was permitting his fears to stop him from being with his sick wife to support her. I felt anger over his weakness. Once again, he is hurting her. He was abandoning her when she needed him the most.
Christmas 2005 is a true gift in my heart. I brought in the Christmas cookies I promised her for the nurses. She got in her wheelchair and I placed the cookies on her lap and wheeled her to the nurses’ station. I enjoyed seeing her face light up as she handed the cookies to the nurses. Back in her room, Mom (who was active into her induction chemo now) opened all of her gifts. Mom started crying. I sat next to her on the bed, stroked her head and kissed her on the forehead and said “this will be the most memorable Christmas I have ever had Mom. The Christmas Mom and I had at Albany Medical Center in Albany, NY. We’re going to beat this Mom. Whatever it takes, we are going to fight.” I had never felt stronger and more optimistic than I did at that point.
She stopped crying and nodded her head.
Later that day when I got home, I cried. It was now apparent being the only child. It was just me (with Bobby’s support) and I needed to stay positive, diligent with her treatment plan and focus on doctor’s orders to get Mom through this. The roles had officially reversed and I was my Mother’s caregiver. That would be the last time I would cry for 10 months.

Chapter 4: Friday, December 23, 2005 Swimming In Fish Bowls

I meandered around the house. I kept checking the clocks as I wandered in and out of each room. I had grown to perseverate on punctuality so I had put a clock in every room of the house including hallways and bathrooms.
My Step Father last called around 2:30 AM. The ambulance had left with my mother, ETA 6:00 AM Albany Medical Center. I had showered and dressed; ready to go when the call comes in.
By 6:00 AM, I called the hospital. She was not there yet. Bobby eased half way down the stair well. “Is she there yet?” he inquired as I gently placed the cordless phone back on its base.
“No” I said frustrated and worried, “they left around 2:30 AM. Where could they be?”
“They are coming from the north, it maybe icy up there.” Bobby reasoned. “I’ve called into work; I just have to go shower and dress.”
By the time Bobby had finished his personal care regiment, the hospital had reported Mom had arrived and was in the emergency room; the first of many visits.
When we arrived at the hospital, a clerk behind a glass window questioned our presence and then buzzed us into the emergency department. As we followed the clerk through a maze of hallways, I looked through the fish bowl rooms. Some had curtains pulled across the front concealing its contents. But most rooms were wide open revealing suffering and fatigue.
When we got to Mom’s “fish bowl”, it was dark and I could make out a body under the white sheet. I walked to her side and with gentle touch I stroked her hair. “Mom?” I whispered. Bobby stood right behind me.
My Mother looked at me revealing those grayish transparent eyes and smiled, “Hi honey. Thank you for coming.”
I turned on a light and leaned over to embrace her. “How ya feelin Mom?” I noticed how good she looked. In the last couple years, my mother had lost weight and became an exercise freak. Even now, she did not look like a sick person, maybe a little pale, but not sick.
She commenced to go into the details of the prior week. At sixty-six years old, my Mother was lively and active. She told me the week before, she had gone to water aerobics three times, twice at the gym, volunteered at the nursing home, volunteered at the veteran’s café and went Christmas shopping with her daughter-in-law. Not to mention, my Step Father was still recovering from a pace maker implant. She said as the week went on, she was tired. For most forty year olds, that level of activity would make them tired. But for my Mother, this was business as usual. Yesterday was quite bad. She said she felt like she was going to pass out all day. Finally, she asked my Step Father to take her to the emergency room. She reinforced the discussion about Leukemia in the emergency room in Carthage and how they did not have the resources to make a diagnosis; but it looks like Leukemia. Her red cell count was dangerous low and she would need at transfusion to endure the trip to Albany.
Always trying to be an optimist, I tried to down play possibility of Leukemia and stay fixated on the combination of her medications was the root to her illness. They had already started doing tests. Around 8:00 AM, I walked outside to have a cigarette and call my supervisor to let her know what was going on. Just before noon, they moved my mother to a private hospital room.
Around 1:00 PM, the doctor came in and told us, early blood tests are in fact indicating Leukemia but they did not know the type yet. The type of Leukemia along with my Mother’s age would determine how they would next treat the disease. The only way to determine the type of Leukemia my Mother had was to do a spinal tap. My Mother flashed back immediately of when my brother had to have spinal taps. According to Marriam-Webster, A spinal tab is a “puncture of the subarachnoid space in the lumbar region of the spinal cord to withdraw cerebrospinal fluid or inject anesthetic drugs”. In other words, it sucks! My Mother instantly recalled my Brother screaming and then echoes of his pleads to stop. In forty years and in today’s modern medicine procedure, this has got to be one of the more barbaric procedures. I believe the doctors who have to perform this procedure would agree with me.
Before the doctor would do this, he wanted Mom to go have a PIC Line inserted. This time with the help of Wikipedia, “A peripherally inserted central catheter (PICC or PIC line) is a form of intravenous access that can be used for a prolonged period of time (e.g. for long chemotherapy regimens, extended antibiotic therapy, or total parenteral nutrition”. A catheter will be inserted into the inside of my Mother’s left arm and run directly into her heart. It would stay there for at least six months (unless it became infected).
I followed my Mother done to have the PIC Line done. While they were doing the procedure, I sat in the waiting room. At this point, the reality of the situation was setting in along with extreme fatigue; I felt tears welding up around my eyes. I got up and went into the bathroom. I washed my face with cool water and dried with a brown paper towel. I went back out to the waiting room and sat in the same chair I was before. Two seats from me was a young woman of thirtyish. She was young but looked old and tired. She wore no makeup and just stared into another dimension. Preoccupied by her thoughts. I continued to struggle with my display of emotion. I had become so desensitized over the years; I could not remember the last time I had cried. Now, I was fighting to stop it. I could not let Mom see me crying, I thought to myself. I have to be strong for her! Stop this foolishness! As I continued to scold myself, tears were flowing freely. The young woman became aware of my battle. She reached into her purse and unfolded a couple tissues and handed them to me. I accepted them and thanked her. She gave me a couple more tissues.
“Here, always keep a few tissues in your purse, this is just the first of many” she said with kindness and understanding. Before I could thank her again, she was gone. I still think about her today and hope her plight was positive.
Still trying to control my emotions, the specialist who put Mom’s PIC Line in came and got me to be with my Mother. When I got to her, I lost control altogether. I started crying out loud. This display caused Mom to lose it. Now the two of us were weeping unhindered by our surroundings. I kept apologizing to Mom. “I’m so sorry. I should not be crying like this. I’m supposed to be here to support you, not make you feel bad.”
Through her own tears Mom cried, “Its o-k, we’re going to fight this! We’re going to fight!”
I nodded. The specialist was now running around the room searching for tissues. By the time she found and brought the tissues to us, she was crying.
Back in Mom’s room, the doctor came in with a nurse to do the spinal tap. He explained he was going to inject Novocain into Mom’s back. And then with a needle, he was going to pull fluid from the outer layer and then penetrate spinal bone to pull marrow out. My Mother was deathly fearful as she turned on her left side. I knelt on the floor, held both of her hands in mine and looked directly into her face. The doctor introduced the first needle. Mom’s face twisted slightly and then relaxed. The Doctor said “Are you o-k?”
I thought he was talking to Mom but he was looking at me. “I’m o-k, why?” I said. In a condescending way I thought to myself “what do you expect?’
“You don’t look so good.” He said concerned.
“I’m fine, lets just get her through this” I focused me attention back to my Mother.
“One down; one more to go. This one is going sting a little more.” The doctor said.
Mom and I fixed our eyes on the each other. The needle went in. As the doctor applied pressure to penetrate the spine, my Mother’s face became disoriented. “Hurry up!” I yelled and cupped her hands to the point of cutting off blood flow.
“We are done. We will have the results of the first test in an hour to proceed with treatment but we will not know the specific type for a couple days” the doctor said.
Within the hour as promised, Acute Myelogenous Leukemia was the diagnosis. Thirty percent chance of full remission (full remission is defined as being disease free for more than five years). Chemo was to start immediately. Induction (first round of chemo) would start that night. One week of chemo treatment followed by eight weeks of rest. Then this rotation will repeat three more times. That night before I left, Mom had started her first treatment.
That night, I thanked my husband for being there all day with me and for his support. Bobby was always my pillar of strength. When things didn’t make since, he made it make since through humor and sometimes plain bluntness. Little did I realize what lessons laid ahead for the both of us.

Chapter 3: Friday, December 23, 2005 Anticipation

My brother Ricky died before I was born. According to my Mother, he was diagnosis with a childhood form of Leukemia at the age of two and died shortly after his fifth birthday. Growing up, my Mother kept two black and white professional taken pictures side by side of my brother and I next to each on a bookshelf in the living room. He was probably three years old, dressed in a wool suit and tie. He sported a blond crew cut and a dimpled smile. I was probably two in my picture. I wore a dress made of lace and netting and a petite gold chain necklace with a little heart charm dangled from my neck. My strawberry blond hair had not completely grown in yet. One resemble featured stood out in both pictures, the eyes. My parents both had the same rare shade color grey eyes. It was natural both my brother and I would inherent this feature. When I looked at him, it was like looking in a mirror and seeing the same ghostly eyes. They seemed transparent but angelic. I never knew him but I always felt him. But in the physical world, I was still an only child.

I hung up the phone and sat up in bed in the dark. By this time, Bobby was fully awake, propped up on his right elbow and put his other hand on my back. “What’s wrong?”
“Mom’s in the hospital. Frank said she had not been feeling well all day and she thought she was going to pass out tonight so he took her to the emergency room.” One of the things that always brought me comfort was the hospital was across the street from where they live. “They did some tests and they are not confirming it but they think she has Leukemia. They said she needs to get to a big city hospital immediately. They were going to take her to Syracuse but when they heard I lived in Albany, they said the ambulance could get her to Albany Med. They just need to give her a blood transfusion so she could endure the trip here. They think she should be here around 6:00 AM.”
At this point, I got up and went down stairs. Bobby asked if I needed him to be with me. I told him no, he better get some sleep because the next day was going to exhausting.
In the living room, I grabbed a large fluffy pink blanket off my swivel rocker and curled up on the elbow of our sectional couch and turned on the T-V. I needed to process what was going on. It was December 23, 2005. Mom and my Step Father had made three hour trip to Albany from Carthage, NY for Thanksgiving. It had become a tradition I would do Thanksgiving ever since Bobby and I bought our house in 2003.
When they visited at Thanksgiving, Mom told me she had a colonoscopy in September. At the pre-examination, the nurse doing her screening had asked her if she knew she was anemic. My Mother said no and that she felt fine. The nurse said she would pass on this information to my Mother’s doctor. In October, the doctor called my Mother into the office and said she should go to a hematologist in Watertown. Attempts were made to make an appointment but they could not get her in until January 2006, three months away. The rural north country of New York State illustrates the deficient availability of specialized health services. In a 75 mile radius, one hematology clinic exists. My Mother said she feared it was Leukemia. I had become used to down playing every health concern my Mother perseverated on. My Mother was a hypochondriac. At 66 years of age, she took perhaps a dozen medicines daily and always insisted the worse whenever she caught a cold.
“Its all of those damn pills you take! One is interacting with the other”. I justified. As I grew older, I was developing less and less patience for self pity. Perhaps a side effect from working in the human service industry for nearly twenty years or the result of maintaining a fast paced business approach. Stay on task! Maintain an intense structured environment and get the job done! Somewhere along the way, along my climb to excel at my career, I became an ugly person who was conditioned to do what I had to do to get the business ahead and if there are casualties, that is part of war.
“You know, that’s what Ricky died of.” She whispered.
I sensed her fear and in a more compassionate tone I said “Mommy, I am sure its nothing. I bet between the blood pressure meds and arthritis meds, one is causing a reaction with the other. Remember when you thought you were having a heart attack and we went to Syracuse? And it ended up being a reaction to gout medicine? Or how about the time you thought you had cancer? I am sure it is nothing.”
“You’re probably right.” Mom said not quite convinced. I didn’t hear another word about it. That is until now.
In addition, my Step Father had a pace maker implanted the week before. So when the emergency room said Mom had to get to a big city hospital right away, Syracuse was the closest. My Mother knew my Step Father who was still recovering from his pace maker would not be healthy enough to endure daily trips to Syracuse, not to mention the long days in a hospital. She then thought how will I get to her, Syracuse was still over two hours away from me. The young doctor attending to her in the ER asked her where I lived. When she said Albany, the doctor said they could get her to Albany Med.
I couldn’t sleep. I continued to organize the thoughts and possibilities in my head. A common compulsive trait I had developed over the years contributing to my insomnia. What if it is Leukemia? Is it possible? Is Leukemia genetic? I didn’t know too much about Leukemia except it was a blood cancer and my brother had endured some pretty painful procedures from it.
I got up and threw on my winter coat and boots and stepped outside for a smoke. Bobby had quit smoking 5 years before after his heart attack. I continued to smoke but not in the new house. I stepped outside into the frigid crisp air. We had a small snow storm two days ago. It is a good thing the weather is cooperating tonight I thought. I had developed a need to be in control of every situation. Christmas was two days away. I was supposed to host dinner with my husband’s family. I could get everything ready so all he would have to do is heat everything up and then be back to the hospital for Mom. Then I thought, Mom, stuck in a hospital for Christmas. Christmas was her favorite holiday. I will have to make it special I thought.
But for now, let’s see what we are up against.