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Librería: PBShop.store UK, Fairford, GLOS, Reino UnidoPBShop.store UK
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New Book. Delivered from our UK warehouse in 4 to 14 business days. THIS BOOK IS PRINTED ON DEMAND. Established seller since 2000.
N° de ref. del artículo L0-9781456744847
- Título
- Leukemia Lessons
- Autor
- Maria R. Mabe
- Editorial
- AuthorHouse
- Año de publicación
- 2011
- Estado
- New
- Encuadernación
- PAP
- Idioma
- inglés
- ISBN 10
- 1456744844
- ISBN 13
- 9781456744847
- Peso del artículo
- 118 gramos
“Sinopsis” puede pertenecer a otra edición de este título.
Fragmento. © Reproducción autorizada. Todos los derechos reservados.
Leukemia Lessons
By Maria R. MabeAuthorHouse
Copyright © 2011 Maria R. MabeAll right reserved.
ISBN: 978-1-4567-4484-7
Prologue
Betty's love for God was preeminent in her life. She expressed this in her work, family, church, and friends, among whom I was privileged to be one. We were friends here on earth from 1992-2001. Wanda Pear, LPN* * *
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.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.
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We collect and process data for the following reasons:
personal data collected and created in relation to our selling books and other items; and
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We may also use your personal data in the following situations, which are likely to be far less common:
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where it is needed in the public interest or for official purposes.
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We will collect names, addresses, contact details, education and employment history, identity and other background checks (which may include appropriate criminal and financial checks and confirmation of the right to work in the UK), marital status and information on next of kin and dependents, financial information (such as bank details and NI numbers), date of birth, gender, a copy of your passport and driving licence, performance information and compensation history, recruitment information (including references), salary, benefits, pension and annual leave information, disciplinary and grievance information, photographs, information about your use of our information and communications systems and CCTV footage or other information obtained through electronic means.
We may collect and use special categories of personal data as required in the carrying out of obligations and exercising specific rights of us or the data subject in the field of employment. This may include information relating to matters such as health, racial origin, religious belief and offences or alleged offences.
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Personal data of our people will be used for HR administration and management, both in respect of the selection of people to work for us (including suitability, eligibility and/or fitness to work), and those who do work for us, to include learning and development, disciplinary and security (of people, offices and data) requirements, providing and liaising with benefits providers, business management and planning (including accounting and auditing), paying you and dealing with tax and NI deductions, assessing and deciding on salary reviews and compensation, conducting performance reviews and managing performance, dealing with legal disputes involving you or others, preventing fraud, monitoring your use of our information and communications systems, ensuring compliance with our policies, and equal opportunities monitoring.
We will only use your personal data when the law allows us to. Most commonly, we will use your personal data in the following circumstances:
In performance of a contract with you; and/or
compliance with a legal obligation; and/or
vital interests of the data subject; and/or
where it is necessary for our legitimate interests (or those of a third party) and your interests and fundamental rights do not override those interests.
We may also use your personal data in the following situations, which are likely to be less common:
where we need to protect your interests (or someone else’s interests);
where it is needed in the public interest or for official purposes.
In respect of all disclosures of personal data, we will only share the personal information which is necessary for the particular purpose for which it is provided, or where we have another legitimate interest in doing so, and we will ensure that the personal data is appropriately protected.
In respect of special categories of personal data, we may process this in the following circumstances:
in limited circumstances with your explicit written consent; and/or
where we need to carry out our legal obligations and in line with our policies; and/or
where it is needed in the public interest (such as for equal opportunities monitoring or in relation to our occupational pension scheme), and in line with our policies; and/or
where it is needed to assess your working capacity on health grounds, subject to appropriate confidentiality safeguards.
Less commonly, we may process this type of information where it is needed in relation to legal claims or where it is needed to protect your (or someone else’s) interests and you are not capable of giving your consent, or where you have already made the information public. We may also process such information about our people (or former people) in the course of our legitimate business activities with the appropriate safeguards.
The special categories of personal data may be used in the following ways:
in relation to leaves of absence, to comply with employment and other laws;
in relation to your physical or mental health, or disability status, to ensure your health and safety in the workplace and to assess your fitness to work, to monitor, manage and administer benefits and absences;
in relation to your race, national or ethnic origin, religious, philosophical or moral beliefs, or your sexual life or sexual orientation, to ensure meaningful equal opportunity monitoring and reporting.
DISCLOSURE:
Personal data may be transferred to service providers who support the operation of our business (such as payroll service providers), to other third parties reasonably necessary in the conduct of our business (including insurers, professional advisors, regulators). These third parties may be acting as processor, or controller of personal data in their own right.
In respect of all disclosures of personal data, we will only share the personal information which is necessary for the particular purpose for which it is provided, or where we have another legitimate interest in doing so, and we will ensure that the personal data is appropriately protected.
RETENTION PERIOD:
We will keep personal data only for as long as is necessary to fulfil the purposes for which we collected it, including for the purposes of satisfying any legal, accounting or reporting requirements. We will normally keep personal data of applicants who we do not employ for six months after we receive it.
We will keep personal data of employees throughout your employment and normally for a minimum of six years after your employment ends.
Changes to your personal data
It is very important that the personal information that we hold about you is accurate and current. Please tell us if your personal information changes during your relationship with us.
Data Security
We have put in place measures to prevent your personal data from being accidentally lost, used or accessed in an unauthorised way, altered or disclosed. In addition, we limit access to your personal data to those of our people and other third parties who have a business need to know. They will only process your personal data on our instructions and where they have agreed to treat the information confidentially and to keep it secure. We have put in place procedures to deal with any suspected data security breach and will notify you and the ICO of a suspected breach where we are legally required to do so.
Where we store your personal data
We principally store data, both electronically and on file, at our office.
Personal data may be transferred outside of the EEA by processors acting on our behalf. For transfers to countries not considered adequate by the EC, we will ensure that personal data is adequately protected, as required by the GDPR. This would include by use of the Standard Contractual Clauses adopted by the EC to protect personal data.
Your rights
Under certain circumstances, you have the right by law to request:
access to your personal data. This enables you to ask to receive a copy of the personal data that we hold about you and to check that we are lawfully processing it.
correction of the personal data that we hold about you.
erasure of your personal data.
object to processing of your personal data where we are relying on our legitimate interest and there is something about your particular situation which makes you want to object to processing on this ground. You also have the right to object where we are processing your personal information for direct marketing purposes.
restriction of processing of your personal data.
transfer of your personal data to another party.
Links from our website
Our website may, from time to time, contain links to and from the websites of third parties that we permit to make such links. If you follow a link to any of these websites, please note that these websites have their own privacy policies and that we do not accept any responsibility or liability for these policies. We recommend that you check these policies before you submit any personal data to these websites.
CHANGES TO THIS PRIVACY POLICY
Any changes we may make to our privacy policy in the future will be posted on our website, so please ensure that you are viewing the correct version.
Please contact us if you have any questions, comments or requests regarding this Privacy Policy.
Last amended May 2021.