Leukemia Lessons
Mabe, Maria R.
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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...
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