Leukemia Lessons

AuthorHouse

Prologue

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It will be years on August 29, 2011, since I watched my mother leave this world due to the disease Acute Myeloid Leukemia (AML). If I had tried to write this right after she left me, this book would have been filled with 100% anger. I am still 100% angry, but not 100% filled with anger. It is more sadness and missing that I am filled with now. Some days it is more, some days it is less. That is how grief goes. I lost a great person and I continue to realize her void every day. I may have taken her for granted, but I will never forget this wonderful person. I continually remind myself that she is not in pain and she is also in heaven.

I wanted to write this book to lend advice to other adult children who are on the journey of losing their parent just when the relationship turns from parent/child to friend/friend relationship. Also, I wanted to lend a perspective, as I am a health care provider (Speech Language Pathologist) who knew nothing about Leukemia when Mom was diagnosed. I also wanted to provide my nieces and nephews with a "history" of Gran Betty that they will be able to keep forever and pass on to their children. And finally, I wanted to provide others with a summary of my leukemia lessons that I learned.

In 1993, I remember seeing teams for the Leukemia/Lymphoma Society and thinking they are just fighting a childhood exotic disease. I also thought how lucky I was that cancer had not touched my immediate family. I may have provided a donation, but never really thought about what was being fought.

Cancer did initially touch my extended family as my Aunt Alma had breast cancer surgery and successfully made it to remission around 1996. Then, my uncle, my mother's awesome brother, Tom Weber, developed colon cancer in the late 90s. My Mom who was a family practice nurse in a doctor's office began the caring relative role as Tom's sister. She was a very compassionate sister. Mom went about her way providing support to her siblings, working in a busy family practice office, and providing support to her own family. I remember thinking, "My Mom is invincible."

I will remember it clearly as long as I live. On Thursday, June 7, 1999, Mom and I were walking up the hill from the Our Lady of Greenwood Festival to the parking lot to drive home, when she said, "It is so hard to believe that we now have a family member with active cancer." Little did we know that on Friday, June 18, 1999, our lives would be forever changed when she was diagnosed with AML. Thus, adding to the number of family members with cancer.

Because I was ignorant, the clues that Mom gave did not faze me. She showed me these little bruises on her arm about a week ago before the diagnosis. She even showed my sister Sara little bruises back in mid May of '99. (The more I think about it, Mom was just in denial. She had seen these signs in her office patients and I think she was just in shock and also thought, "I am going to not be identified as 'sick with cancer', until I absolutely have to be identified.") We both brushed it off. She was very tired the week before her official diagnosis; I assumed it was because she was always the busy, caring Mom on the go, either relating to work or family.

On Sunday, June 9, 1999, we spent the day volunteering at the Our Lady of Greenwood Summer Festival selling bracelets in the ticket booth on All You Could Ride Day. Oh my. It was so hot and busy; we both could not wait to leave. When we left, we both said we were going home to take a shower and that we would talk to each other in a week. She had planned to go visit her mother (Helen Weber) and mother in law (Mary Cheaney) who were both in the same nursing home in Evansville, Indiana for the first part of the week and then coming back to Indianapolis on Thursday night so she could work Friday as a nurse at Greenwood Family Practice.

The week was busy and hot. On Friday, June 18, I came home from work to pull weeds in my back yard, and had just come in side when my Dad called. "Hi Maria, I just have to call you to tell you that your Mom has been diagnosed with Leukemia." My first thought was, "Cancer!!!" I told him he was a liar. I was sobbing hysterically. How did this happen?? I just saw her last week. He patiently listened to me and said, "I hate to let you go, but I have to make more phone calls."

I did not know what to do. I called a girlfriend just to cry on the phone. She did not know what to do except to say she was sorry. I was so glad for that girlfriend to just be on the phone while I cried.

I then called one of my Mom's co-workers, Anita. I told her I couldn't believe it. She came over to give me a hug. I remember saying, "Everything has changed now." She said, "Yes it has, but she is still your mother." Anita, earlier in the day, had gotten word that Mom's boss, Dr. Richert, demanded that she go get a stat blood test at St. Francis Hospital after showing him her bruises. She wanted to wait until Saturday to get a blood test as she was off work that day. He would not hear it. After the test, she drove back to work and started working again. Dr. Richert got the call from the lab that Mom's blood count was 245,000. Normal is between 5 and 10 thousand. He grimly told her she more than likely had leukemia. He sent her to Dr. Mary Lou Mayer whose office was next to Community South. Dr. Mayer explained to Mom that she could treat her or that she could be referred to IU as she refers about 10 cases a year to Dr. Larry Cripe. Mom decided to go to Indiana University (IU). Mom tried to call Dad at work, but the number was not right. Dr. Mayer asked where he worked, and Mom said Indianapolis Power and Light. Dr. Mayer smiled and said, "My husband works there." (He has a different last name) Dr. Mayer got on the phone and within a few minutes Mom was talking to Dad. Talk about a small world.

Friday evening, Anita offered to take me to see her but I said, "No, we should let her rest." I think I was so shocked I could not face her yet. My Mom's friend told me I needed to get some rest. I slept fitfully, but soon it was morning. Life goes on even with a cancer diagnosis. Laundry had to be done on Saturday morning.

It was early morning when I called my Aunt Marian Seib venting my anger. She was sympathetic, but said we have to pull it together and start praying to St. Jude. I remembered about St. Jude Hospital, but I remembered thinking that it was a children's hospital and only little children get leukemia.

I finally got the nerve to call my Mom at Indiana University Hospital. I called information and was immediately dispatched to the room. The conversation went like this:

"Hi Mom."

"Hi honey."

"I can't believe it, Mom."

"Listen, honey, I am not going to hold back the tears." She proceeded to cry. I told her she had every right to cry.

I asked if I could come see her and she asked if I would wait until Sunday so she could look a little better. She said something about being hooked up to a Leukophoresis Machine on Friday evening, and she was tired, plus, now she had a port in her chest, and she wanted one more day to rest before I came with my sister Susan to visit.

She also told me that on Friday night a doctor came to see her late that evening and she was not impressed that she could smell traces of alcohol on his breath. "Some big time physician doing Friday night visits after a cocktail party," she said. She and I both just laughed.

I said, "Okay, we will wait until Sunday." My sister Susan McDowell who lived in Bloomington at the time decided to come see me on Saturday and spend night and we would go with Dad to see Mom on Sunday. (Susan could not believe Mom was diagnosed with Leukemia, just that previous Thursday evening, Mom helped her make copies for her teaching lesson at Kinko's.) Susan was a Teaching Assistant at Indiana University, teaching beginning German while obtaining a MAT in German.

I talked to my Mom's beloved sister Elaine. She was stunned and said she would have to process this before coming up from Evansville, Indiana. I really felt for her. Elaine was one of Mom's biggest cheerleaders. She left her comfort zone and would drive up from Evansville to the IU Hospital Campus. She'd tell me that she would drive somewhat slow, people would pass her, and she would wave and say, "Go ahead and pass me, I am having a bad day." When Mom lost her hair, Elaine was even able to get Mom a free hat from J.C. Penny's. You would laugh if you knew Aunt Elaine. She said she went to Penny's and got overwhelmed by the hats.

The woman who was helping her listened to Elaine tell her about her sister. The woman gave her the hat as a gift. It was a cute blue jean hat, with a yellow flower on top.

I talked to Uncle Tom (Mom's brother) and Aunt Mary. They were very encouraging. Uncle Tom said, "I talked to my oncologist in Louisville and he said this type of blood cancer was beatable." I did not realize then that so many subtypes of AML existed. Mom had a very severe subtype of AML.

When Susan came later on Saturday, we were both irritable and tired. We made plain angel food cupcakes to take to hospital so Susan could celebrate her birthday with Mom on June 20th.

We were basket cases the whole day preparing to see Mom the next day. We argued over silly things. I had no patience. We literally fell into bed that night. I secretly dreaded going to the big IU hospital.

I had never been to IU hospital, but I had always associated it with big time medical problems and I knew this was a big time medical problem. Before going to see Mom, we went to mass with Dad at Our Lady of Greenwood. I told the news to Fr. Kneuven, and he said, "Betty Cheaney has blood cancer???"

As we were in the lobby of the hospital with Dad he approached the elevator and said we are going up to 5 North, which I would thereafter refer to in my own thoughts as 5 Hell.

As we got to the nursing station, I saw flowers on the desk. The receptionist said, "Oh these are the patient's flowers. You know, they can't have flowers in their room." I thought to myself, "What? No flowers?" Flowers are supposed to brighten the room and make a sick person feel cheerful.

All of a sudden, we opened a door and walked into a hallway. It was a stark white hallway. I thought, "This is so scary." All of a sudden I saw her name on the door, "Oh, this is really official when you see your loved ones name on the door." I looked in and saw this very tiny room, what I would later refer to as jail cell. She was sitting in a chair with her gown on with a tube hooked into her chest. This was a port. I about died. I had never seen a tube in the neck. I had seen a naso gastric tube and a feeding tube and a breathing tube, but not this tube. It was hooked up to a pole with a bag of blood that she was receiving.

She saw us and immediately said, "Hi" and then tried to start singing Happy Birthday to Susan. She cried the whole way through. I looked at her not knowing what to do. The nurse who was in the room said, "Go on in the room, give her a hug. She won't break; she won't break."

But, before we were allowed to go in, we were on the other side of the window where you have to wash your hands, put a gown on, gloves and a mask. Every time you go in to see her. I again about died; "You have got to be freaking kidding. She is really in isolation." Now, granted, I had worked with patients in isolation, but this was my own family member.

* * *

If I had a dollar for every time I wore a gown glove mask, I would be a billionaire. Boy, did I hate the ritual. However, I knew it had to be done. I forgot just once, and the nurse gently but firmly reminded me.

The room she was in was so tiny. The only items in the room: One bed, chair, T.V., a sink, a trash can, and a bedside commode.

"What? No shower? No regular toilet? You have got to be freaking kidding me." She said it was all for infection control rules. "Whatever," I thought. Mom was so mad that the wastebasket did not have a lid on it. "This is so gross," she said. (At one of Mom's later hospital stays, a nurse went out and bought her a plastic trash can with a lid on it) That did not bother me, what bothered me was the lack of decor in the room. Working as a speech therapist in rehab hospitals or just regular hospitals, the rooms were so pretty. Also, the fact that she could not have any stuffed animals in the room, only cards and pictures was sobering.

We tried to make small talk, but she was in pain even though she tried to hide it. Susan, an awesome flute player, brought her flute to play Mom a song. She played, and I guess the next-door neighbor banged on the wall to quit. I was like, "Who cares? We are trying to make our Mom feel better."

We stayed about two hours when it was clear she needed to rest. So, we went home. I fell in bed emotionally exhausted at 5 p.m. This was the worst day of my life. (Little did I know there would be a few of those worst days). I literally slept until 6 a.m. the next morning.

I was a basket case at work as I tried to tell a co-worker about the events of the previous day. As soon as work ended I made my way to the hospital. When I got to the lobby I freaked. I had no idea where I was going. I could not remember where I was the day before. I could not believe as I have an excellent memory; I felt so intimidated by the hospital. I never felt intimidated by a hospital before, but this was the big house.

I finally looked at a nurse in the hallway and trying to talk while fighting back tears I said, "Look, my Mom has leukemia, what floor is that?" She said, "Honey, 5 North."

I went right up and to the room. Not a good sight. She was in pain and she was bleeding profusely around the port. I could not believe the blood, it was like she had a gunshot wound and nobody could stop the blood. She was not with it at all. I just stared, mortified.

Our neighbors came to visit and she remarked she remembered seeing her Dad who had leukemia bleeding immensely from the port.

I went to the little lounge that seats four people. There was a woman sitting in the small room. I just cried trying not to be heard. She came over and gave me a hug. I did not know her but that hug was needed. The little lounge on 5 North may have been tiny and impersonal, but it was a refuge at times to get away from the chaotic atmosphere that sometimes existed in her room.

* * *

I came back to her room and it was time for Dad and I to go. Mom was not with it and the nurses told us to go home and rest. As we walked out with our neighbors, we thanked God for the warm evening. For me, it is always easier to deal with adversity when the weather is good.

From June 18 through July 15, '99, Mom was basically in a coma. Everyday I came she never woke up.

She finally aroused on July 15th. She could not believe she had been out of it. She was not happy to see all of her hair gone. We cut it all off in the hospital while she was sleeping, because she was shedding so much from the chemo and it was always making her bed messy. My sisters and I had no qualms about changing her bed or rubbing her body with lotion. We were just trying to keep her comfortable. We even argued quietly amongst each other about how much lotion to put on.

We would have whispering shouting matches with our masks on. It was funny. No way did we want to argue in front of Mom, but we were going to argue. Mom finally started to do her own self-care with help of a physical therapist and an occupational therapist on July 16th. She was proud that she could brush and comb her hair, brush her teeth and try to walk.

She announced she was ready to go home.

So, on my 32nd birthday, July 17th, she came home. She could barely walk into the room. She plopped into an easy chair. Ahh, to be home. The house was decorated in Welcome Home! signs courtesy of her wonderful next door neighbors, The Zabel Family. She kept saying how awesome it was to be home.

She did not get to go to her first grandchild's baptism the next week. Colin was born on May 7th, '99. Mom, Dad, and I went to see him for the first time about a week after he was born. During the Baptism, Aunt Mary stayed with her. She was disappointed, but she knew she could not go. I felt so cheated that she could not share in this special day with family. It was her first grandchild being baptized into the Catholic Church. However, I did remind myself that she did see Colin a few weeks after his birth and she held him a long time.

(Continues...)

Excerpted from Leukemia Lessonsby Maria R. Mabe Copyright © 2011 by Maria R. Mabe. Excerpted by permission of AuthorHouse. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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