Helen's Story

Background on Helen's experience is shown below along with an essay she has written about her journey with breast cancer. To read Helen's biography, please click here.

To read the article that Cleveland Plain Dealer Reporter Connie wrote about Helen, click here. Connie Schulz has won a Pulitzer Prize! Click here.

Helen is celebrating her fourth year as a metastatic breast cancer survivor. She is dedicated to helping women and their families cope and survive in their struggle to free themselves of this dreadful disease. She has added another goal and that is to thrive and rejoice!

In 2000 Helen chose two role models. The first is Meryl Streep in her performance as Karen Blixen in "Out of Africa", who overcame a fatal disease by choosing to take arsenic poison to live. This is akin to Helen's choosing chemotherapy and radiation. Ironically, her second role model is Bruce Willis' character John McClane in the original Die Hard movie. He was an "everyman" who killed the terrorist who threatened to destroy a building filled with innocent people, including himself and his wife. John McClane saved everyone while filled with angst, even to the extent of walking on glass. His resistance helped save his family and many other people. Helen thinks that this is the thing to do: kill off this ugly disease and save many women and their families. What irony that a feminist identifies with Bruce Willis. Read more about these files here.

With the help of her friends, Helen started this foundation for research on breast cancer, a disease which in effect tosses a grenade into the lives of the victim's family. The money is the necessary ammunition to annihilate the disease through research and education

In 2004, Helen modified her role models after this experience. She recently wrote:

"When I first discovered my cancer, I very naively felt that I could be just like Bruce Willis' character in 'Die Hard' and that I would fight this cancer off and be victorious. However, the treatment pulled me down and 'fighting' or that mind set drained my energy. By meditating or coming to terms with the illness, not panicking but doing my best without depleting any more energy when things were not going well, facing the statistics, gave me strength. I decided to do the best I could by calmly thinking outside the box, turning in my mind other alternatives to the treatment or how to alleviate the suffering.

Even though all people fear death, we should at least take a peek at it. By peeking at it, I felt better about my life and what I wanted to do. First of all, I decided that I wanted to live a productive and quality life no matter how long and that I refused to be sick anymore from treatment. I know that with my cancer there is no cure, but there is something called 'continuing' to survive. I know that the treatment probably did not kill all of the cancer in my body, but the best is all I can do. That 'best' has given me 3 1/2 years of happiness and productivity with more to come."

"Perhaps by prolonging life as opposed to just looking for a cure,
that will be the cure"

 

My Journey Through Cancer Treatment

by Helen Moss, April 2001

I hesitate to share this information because it is very personal, and I do not wish to discourage cancer patients facing this treatment. However, unless the public understands the battle, the pain, and yes, the danger of death from the treatment itself, it will not recognize the importance of raising more funds to find better and less toxic treatment.

N.B. Reading this may make you very uncomfortable.

Surgery

I went through my mastectomy in shock. The first month after I was told that I had breast cancer, and that I was going to lose my breast and perhaps my life, I felt as if I were in an aquarium looking at the fish. But it was not fish I saw in the light blue translucent water, it was people whom I knew, my friends and colleagues, smiling and going on with their lives while I was suddenly pushed out of the tank. It was then that I decided to create this foundation. I did not want one more woman to have to face this ordeal, but if even one woman could be spared as a result of my experience, it would have had some positive value.

Just before being wheeled into surgery I kept waiting for the tranquilizer that I have always been given before other surgeries. I was hiding my terror and holding back my tears, waiting for this drug to take away my fear. My family surrounded me, all trying to be brave. It made me feel good that most had tears in their eyes. I was wheeled out of the room and, in a panic I asked where my tranquilizer was. I was told that because of the kind of anesthesia I would be given, I could not have it. I must tell you that the tears flowed then...I was scared. Someone grabbed my hand and squeezed it.

 

Bad news

The next thing I remember is waking up There was no pain. I was calm and emotionally numb for the first three days after surgery, gearing myself up for the pathology report. On the fourth day came the report: the doctor said, "Fifteen out of sixteen lymph nodes positive for cancer." He turned and walked out of the room. I had metastatic breast cancer. I was stunned. I told my husband to get me another opinion as soon as possible because "I am a dead woman."

 

Chemotherapy

I chose a very aggressive form of treatment. The regimen was to be four treatments of high-dose chemotherapy, each treatment three weeks apart, to be followed by a bone marrow transplant. I was blank when I signed the paper that stated all the possible horrible side effects of the treatment, including death. I would have done anything to save my life, short of putting my head in Lake Erie's water for half an hour.

 

Tea Party

Just after my second treatment I hosted the first annual Tea Party of the new Foundation, a fundraiser for over 300 people. Later that night, my body convulsed with agonizing pain in my sternum with muscle spasms in my chest, my arms, and my legs. I thought I was having a heart attack. My husband called an ambulance. It was not a heart attack, but my body's reaction to stress caused by the chemo and the effort required by a big party. The same reaction occurred twice again during my treatment. Each time, it resulted in a trip to the hospital emergency room.

"Thrush"

In the middle of the night I awoke with my mouth suffering excruciating pain and my tongue so swollen that speech was impossible. I panicked, and pounded on my husband to awaken him. I felt like an animal, less than human. I had developed "thrush," a mouth infection that newborns sometimes have, because the chemo had so weakened my immune system.

Lost teeth and other casualties

I lost my hair, two teeth, and my toenails.

I developed mouth sores and a salivary gland infection. I could not eat. The sores spread completely through my GI tract, and I was in terrible pain. I took many trips to the hospital for IVs to counteract dehydration. I took morphine to function.

Hospitalized again

After my third chemo treatment, my white blood cell count was almost down to zero and infections seemed out of control. I suddenly discovered after a phone call from the hospital that I would be ineligible for the bone marrow transplant due to a bad liver. I spent the next 13 days in the hospital with friends, family, and husband caring for me. 'They brought food from home to try to tempt me to eat. My mother gave me shots to increase my white blood cells. Flowers and cards sustained me. I lost 25 pounds in two weeks.

 

I stopped chemo

I stopped any further chemo. I just said to everyone, "I am too old for a liver transplant." I received another opinion from the University of Texas, who conferred with my local doctor. They agreed that I had had enough. I was unable to go through the planned bone marrow transplant. I was glad that I missed that.

Gall Bladder Removed

My gall bladder failed, and had to be removed. I did get a tranquilizer before this surgery.

Radiation

I went through 28 radiation treatments, all of which seemed surrealistic. It felt as if I were in the space station in "2001: A Space Odyssey." I had wonderful friends who had experienced this treatment and who talked to me daily. They were my coaches. It was a "walk in the park" compared to the chemo. Even so, one of the women whom I met had a very bad experience that I can't talk about. I considered myself lucky. I had a strict regimen of going to work every day at 10 a.m., leaving at 2:20, driving to the hospital and receiving a treatment at 4:30, driving home, eating dinner, and going to bed by 8:p.m. I did not socialize or go out for six weeks: I was a soldier.

Radiation Ends

The last day of radiation, I finally broke down and wept, hugging all of the technicians. It was the first time I cried since being wheeled into surgery without a tranquilizer. I was grateful to all the nurses and the radiology technicians who were so kind and helpful to me. Both of my oncologists were with me every step of the way and handled my emergencies with speed and concern.

Hair Returns

Halfway through the radiation, my hair began to grow back. I was overjoyed. I felt as if it were spring and that crocuses were coming up out of the ground. It represented life to me, a sign that I was going to live. I had worn a wig only once and never put it on again. I felt as through I had done something wrong and was trying to hide. I shared my illness by not wearing a wig. I did wear hats because I was so cold from the baldness. I went to work when I could with my colleagues cheering me on, even though I sat at my desk bald. My son, John, kept my business going.

Post-treatment weakness and weakened immune system

After treatment was over, I was physically very weak with a weakened immune system. I knew my "cancer coach" did not completely recover his old energy and health for two years after his treatment. He taught me not to become impatient with myself when I became tired and instructed me not to overdo it. My doctors told me that they were not trained to help me after the traditional treatment had ended, but my friends referred me to an alternative care physician and I have been under his care ever since. I like and respect the doctors who attended me throughout my treatment. I hated to leave them, but they could help me no further.

Getting my life back - my husband makes me laugh

I look very healthy and feel as if I am glowing. I have been back to work full time since March, but it has taken the six months following my last treatment to return to my daily rhythm and regimen - getting up, going to work, seeing my grandchildren again, getting involved with my friends. In short, reclaiming my life. My husband tells me that I look beautiful with my new short silver hair and my thin body. He says that I look like an anorexic model. He makes me laugh.

 

Foundation moves ahead

This Foundation kept me going every day. More than ever I believe that its mission is to provide grants for education and development of innovative ways of treating cancer and its aftereffects.

 

We must return cancer patients to health as quickly as possible

Since the first diagnosis I have been through a prolonged battle. Just as the discovery of penicillin led to its replacement of arsenic as a cure for syphilis (Karen Blixen's disease in "Out of Africa"), another discovery must be made for the treatment of cancer. Until a cure is found, we must find ways of lessening the suffering of current cancer treatments and returning cancer patients to health as quickly as possible.

April 2001