Adolescent and Young Adult Survivor Week 2009

We have just completed Adolescent and Young Adult Cancer Awareness Week. It is the 7th National celebration of this event, but the first year I am aware of attention being drawn to it. Many national cancer centers held conferences or other events to bring together patients, caregivers and long-term survivors who were diagnosed between the ages of 15 and 39. When I was diagnosed with Hodgkin’s disease at the age of 25, people preferred not to talk about cancer in children and young adults. Survival rates were 50% or less so if you were diagnosed, family and friends jumped to the assumption that you did not have long to live. I remember the first time I was admitted to the hospital. I went in for a week of tests to stage my cancer. Today, all of this would be done on an outpatient basis. When we exited the elevator on the fifth floor of the hospital, there was a sign welcoming us to their new Cancer Center. A social worker greeted us. My mother immediately switched from her regular glasses to her sunglasses. We had just come inside and it was not sunny in the hospital. I did not understand what was happening with my mother at the time, but the social worker did. She suggested the nurse take me on a tour of the unit while she talked with my mother. The sunglasses were so that I could not see her crying. I think she was glad to go to the social worker’s office and close the door so that she could have time to adjust to the fact she was leaving me on the CANCER floor of this hospital.

When we got to my room, there was only one bed and there was a woman in it. She was about 60 years old and told me she had kidney cancer. The nurse had been telling me about all the state of the art cancer treatments that were available at this hospital, which was staffed by UCLA physicians. I asked her if sleeping on the floor was a new cancer treatment. I was trying to lighten the mood, which had been way too serious since I was told I had cancer and would not be going home from the doctor’s office. My nurse was able to locate a bed for me, but I found that I had trouble talking to my roommate. I was worried about missing school, telling my husband I had cancer and using up my sick days at work. I rarely used sick days and the only time I was out for a week or ore was when I went on my honeymoon. She was worried about her bird being home alone. Her cancer was detected when the chiropractor she was seeing accidentally broke her arm while treating her. Somehow, that led the emergency room to a diagnosis of kidney cancer. My mother developed a friendship with this woman. I think it helped both of them to have something other than my cancer to talk about

When I had my surgery to determine how advanced my cancer was, I found out that some of the patients on the floor had asked that I be transferred to the pediatric unit. They thought I was a teenager and did not belong on an adult cancer floor. They changed their minds when I developed a pulmonary embolism after surgery. What I remember about that day was visiting with my friend Linda Bader, a friend from high school who had come to California to help me get through treatment. Her younger sister died from Hodgkin’s disease several years earlier. Linda wanted to make sure I did not die. I knew this because as the nurse was pulling her out of the room during my “code” she looked me in the eye and yelled at me, “If you die now, I am going to kill you!” I remember thinking that did not make any sense. That is the last thing I remember hearing. The last thing I remember feeling is someone stabbing me with a needle in my wrist. None of the doctors or nurses in the room talked to me during this emergency. I did not get a warning before being stuck with needles, before a hard board was shoved under my back or before someone pulled down my nightgown to attach sticky pads to my chest. At this time in my life, I was not a nurse and had no idea what was being done to me or why it was being done. It would have helped me immensely if anyone in the room had told me what they thought the problem was and what they were doing to fix it. All I knew was that it felt like someone was lying on top of my chest and that the someone weighed a ton. It was hard to breathe. It was scary. All of my support system had been dragged out of the room while the silent, masochistic medical team ran in.

This was my first major encounter with the medical system. I had appendicitis at 16, although I am still not entirely convinced it was appendicitis . I thought at the time it was a pulled muscle from helping someone out of a wheelchair while working as a candy striper. When I had my cancer surgery, I imagined I would be back at work the following week. I never imagined it would be six weeks recovery time or that the incision would be from my breastbone to my pubic bone. I felt as if I was carved up like a Thanksgiving turkey.

The first support group I attended for cancer patients was called Make Today Count. It was held at the community hospital near my home. At the last minute, I decided I did not want to attend. I had no idea what it would be like and I was shy, nervous about telling anyone I had cancer and frustrated at the fact that I was too weak from radiation and surgery to walk in the front door on my own power. Linda drove me to the meeting. She was pushing my wheelchair and when I told her I changed my mind about attending the group, she said she was pushing the wheelchair and it was going to the support group (with its passenger).

As we entered the room where the group was meeting, I saw a long conference table. Each seat was occupied by someone with either gray or white hair. Many people in the room were very thin. Most were wrinkled. Not one person in the room was younger than my mother's age. I wanted to turn around and run out the door. The group was very welcoming. They made room for the wheelchair at the table, served cookies and drinks and then went around the table and introduced themselves individually. As part of the introduction at their meetings, each person was required to say one good thing that happened to them since the last meeting. I could not think of anything to say. I hated my doctor, hated having cancer, hated missing work, hated having to drop out of school, and hated my body for not doing what I wanted it to. I just dumped all that negativity in the meeting. I was not planning to come back, so I thought this would be a safe place to vent. The group members had many helpful suggestions, the best one coming from a man who was in his 40’s. Prior to my attending the meeting, Allan had been the youngest group member. He loved his oncologist and suggested I fire my doctor and go see his instead. This was a shocking idea to me. I never considered it a possibility to fire my doctor. I thought if I told my doctor he was terrible at communicating and that I always felt as if I had failed him some way when my lab tests were abnormal, he would not want to take care of me and would tell all the other oncologists I was a bad patient so they would not want to take care of me either. Allan assured me his oncologist was different. He was right. Gary Dosik had just moved to LA from MD Anderson Cancer Center. His area of research was lymphoma. The first time I saw him as a patient, he told me we had to be a team. Since I lived in my body, he told me I was the best source of information about what was going on in my body. He wanted to be able to rely on my information while treating my cancer. He actually asked me if I would agree to be part of my own healthcare team. I do not know where Dr. Dosik is today, but if you are lucky enough to be one of his patients, you have a great doctor. You have a doctor who gets it.

It is an amazing thing to have a week dedicated to adolescents and young adults with cancer. It has been educational to find that cancer is the leading killer of young adults who die from any illness. It saddens me to learn that there has been no significant progress in the survival rates for young adults with cancer in the past thirty years. There are 9,500 new cases of pediatric cancer annually in the USA and 70,000 new cases of cancer in young adults. While 94% of all cancer occurs in those over 40 years of age, 10% of all survivors are in the young adult population (age less than 40). This means there are more than 1 million young adult cancer survivors in the USA alone. [Source: www.imtooyoungforthis.org]

Today there are a few clinics devoted to young adult survivors of cancer. We need this type of clinic in every cancer center. Some survivors have become researchers into our own peer group. Dr. Brad Zebrack, a professor of social work at USC was part of my Hodgkin’s support group from the 1980’s. Others lead advocacy or support groups – Ellen Stovall of NCCS, Lance Armstrong and Doug Ullman, of LAF, Matthew Zachary of I’mTooYoungForThis.org, Heidi Adams of Planet Cancer, Selma Schimmel of Vital Options. Still others have written books to help new survivors on their journey: Wendy Harp ham, Kathy Later and so many others. Since I know all of these people, because we are all passionate about survivorship and tend to travel in the same circles, it is easy to generalize and believe that all cancer survivors are talking about their disease, coping better than in years past and have the information they need for healthy survivorship. I have only to go to a national cancer meeting, or talk to patients in my own cancer center to be reminded that this lofty goal has not been achieved. Newly diagnosed survivors do not have the information needed to deal with the side effects, both physical and psychosocial, of treatment. They still struggle with financial issues, waiting months to hear from social security, fighting with their insurance provider for coverage of their treatment, trying to work through treatment or finding ways to pay the bills when they are unable to work. How far have we come in 30 years? How much farther do we need to go? Will the Obama health care reform improve survival for young adults with cancer? If we want to make things better for young cancer survivors and for all cancer survivors, we must work together to change the status quo. Go to the website for NCCS (www.canceradvocacy.org), click on “Take Action” and find out how you can help.