Tuesday, September 25, 2007

Jana's Story from Utah

What is Cancer?

Listen to me. I will tell you what cancer is. I am in my bedroom getting dressed on Christmas morning. My husband walks in and asks me how I got the bruise on my left breast. I haven’t ever noticed the bruise. I walk closer to my mirror, and notice the blue, hard circle. My husband advises me to get it looked at as soon as possible. The next day I make an appointment to see a doctor. I have a mammogram, several doctors poke and prod me.

After several tests and hours of waiting; a doctor, who is a woman, comes into the waiting room where I am sitting and asks me to follow her to her office. I follow her and we step into a small, windowless office with bad lighting. She tells me that I have been diagnosed with breast cancer.

As she goes over the options of surgery’s and medicines, her voice seems to fade out. I cannot understand what she is saying. The office is getting darker; I turn around in my chair looking for a way out. I am blinking trying to fight back tears. I wonder how many other women she has told this to? I am only thirty one!

Listen with understanding. I leave the hospital and do not remember how I made it home. I wait in the kitchen until my husband arrives home from work. He comes in, and by looking at me he can tell something is wrong. I start to cry and try to explain. Words aren’t coming out my mouth. My husband comes to me, holds me, and he knows. He pulls me gently into a bear hug. My husband starts to cry and says; "I am so sorry, you don’t deserve this."

Cancer is having four operations in twelve days. The first operation is a lumpectomy to test the tissue around the breast. The second surgery is done in the Emergency Room at four in the morning; I am bleeding internally. The third operation is having your lymph nodes removed. The cancer has spread. The fourth, and most cruel; a complete mastectomy.

At first it seems too much to comprehend. I will only have one breast! Can you wear a swimming suit with one breast? How will I wear t-shirts? Will people notice? Cancer is secretly worrying that I will repulse my husband. That he will no longer find me attractive. Cancer is not having a choice.

Listen to me. Put yourself in my shoes. Cancer is being grateful for warm blankets and good pain medicine. Cancer is lying in bed, wondering if the physical pain and emotional shock will ever go away. Cancer is being tired. Cancer is being tired of feeling lousy. You are advised to start radiation at the end of the month. A treatment used like an ex-ray with energy waves to kill cancer cells. Exposure to this focused laser will shrink the cancer. The side effects will be fatigue and nausea. Your skin will feel like it is burning and will peel like you have sunburn.

After six weeks of radiation you are advised to start chemotherapy. Chemotherapy is six months of going to a doctor’s office each week. You sit in a chair and a nurse inserts an I.V. into your arm. For over an hour, chemo is pumped into your blood stream. It is poison. It will kill all of the cells that are living. Good or bad.

The doctor informs you that because of this poison, chemo, you will become sick. You will become nauseated, vomit, your mouth will have open sores, you won’t have any energy, you will get migraines, your body temperature will drop five degrees, the skin inside your mouth and nose will peel off. You won’t be able to taste things. Your red blood count will be low and therefore you cannot come in contact with any person under the weather, publicly or privately. "But we will give you medicine that can help with these side effects." They say. This medicine may have minor side effects such as; insomnia, diarrhea, burning eyes and itching.

They inform you that because of this poison; chemo all of the hair on your body will fall out. Your eyelashes, eyebrows, arm and leg hair, the hair in your ears and nose and the hair on your head. Are you still listening?

Cancer is wishing for something to take your mind off of yourself. To help end your self pity party. Be careful what you wish for. Cancer is hosting a birthday party for your four-year-old daughter. However, the birthday girl does not seem to be herself. She has been complaining of headaches. Her balance and equilibrium are off. She is running into walls and other people. Maybe she is just a clumsy four-year-old. She complains she cannot see the television and must sit close.

Cancer is taking your four-year-old daughter to an eye doctor. The eye doctor refers you to a specialist, a neurologist. She can see fine. Listen to me. Cancer is taking your four-year-old daughter to the hospital for an M.R.I. Cancer is being told by a man with terrible bedside manner that your daughter has an inoperable brain tumor.

The tumor is entwined around her brain stem and is swelling which explains the headaches and lack of sight. The tumor is wrapped so tightly around the brain stem, which controls her eyesight, hearing, and breathing, he is surprised she is doing so well. I start to cry and ask him how this is possible. He explains that they don’t know how long the tumor has been there. Don’t know?!? They are the experts and they DON’T KNOW?!

Cancer is your four-year-old daughter asking why you are crying. Cancer is telling your daughter, that everything is going to be okay, and she believes you. You ask the doctor what this means for her? He states that by the size and rapid growth of the tumor she may have six months to a year to live at best. Do you want to know what cancer is? Sit down, I have not yet begun to tell you what cancer is.

Listen with a heavy heart. To prolong her life, you are advised to have her go through radiation and an experimental form of chemotherapy. The side affects will be the same that were listed above. I try to look on the bright side of things. We can go together. A mother-daughter bonding experience. Some mothers take their daughters shopping or to the park. We will go to radiation and chemotherapy treatments to prolong our lives. Are you still listening?

Listen with your ears and with your heart. The first day of radiation we go together, I explain to my daughter that she has a big owie in her head that is giving her the headaches and we are going to try to make it go away. She agrees with the idea. Cancer is taking your small daughter to Primary Children’s Medical Center where hundreds of other cancer patients are being treated. Cancer is seeing first hand what will happen to your daughter. What happens behind closed doors.

To receive radiation, you must hold perfectly still while an oversized machine focuses on the area needing radiation. For my daughter it is her head. A four-year-old cannot hold still for more than thirty seconds especially when this machine is three inches from her head and very loud. She cries and begs you to come and get her. The nurses decide to strap her down. She starts to get hysterical, kicking and fighting the nurses. "Mama don’t you love me? Why are you letting them hurt me? Mama don’t leave!" I walk out of the room in tears. Do you want to know what cancer is? It is hurting your daughter to save her life. After the first treatment a mutual decision is made between the doctors and I that we should give my daughter a pill before coming in for radiation. The pill will be taken with food and will sedate her within minutes.

The next day it is time for the pill. She cries and pleads with me; "Please Mama, I will do anything, please don’t make me take that pill." She doesn’t know what it will do but the pill tastes bad. She slumps into a deep sleep after me forcing her to take the pill and both of us crying. She will stay asleep for over three hours. I must drive to the hospital, forty-five miles away and get her treatment done before she wakes up. I pick up my purse and empty out all of the unnecessary items. I put it over my left shoulder, my bad arm where the lymph nodes and breast were removed. I pick up my thirty-pound daughter and carry her on my right shoulder to the car. She is dead weight.

I park illegally at LDS Hospital in a red curbed No Parking Zone, knowing I cannot carry her very far, I try to get as close to the hospital as possible. The radiation goes smoothly. When she wakes up, she is mad that I tricked her. She complains that her ears are buzzing and that she sees double. I tell her I am sorry. Cancer is knowing we will have to do the same thing tomorrow.

Listen to me. Cancer is trying to live a "normal" life for your daughter and three other children while enduring your own personal hell of chemotherapy. What is "normal" with cancer? Cancer is knowing that the time you have left with your four-year-old daughter is very short and trying to make the very most of what you have. Cancer is hearing the dreaded news that your daughter’s tumor is again growing and there is now NOTHING they can do for her. These are the experts - - they can do NOTHING?!?!

Listen with a broken heart. Cancer is having your daughter say to you "Mama, I need to ask you a question and I want to know the truth." I say "OK, what would you like to know?" She then asks "Mama, am I going to die?" I cannot breathe, my heart has stopped beating and I am at a loss. I finally choke out "Yes, but we will all die someday." She then says with a knowledge that can only come to one who has endured what she has in her short life - "But I am going to die soon aren’t I?" Again, I feel an unbearable weight in my chest and manage to say "Yes."

Listen to me. Let me tell you what cancer is. Cancer is lying in bed with your beautiful daughter between you and your husband and holding her as she slips away to Heaven. Cancer is watching your big, strong husband sob and cry for our loss, knowing that there is nothing you can do to comfort him.

Do you know what cancer is? Remember I did not come from another place or time. Others like me are all around you. Look at us with a grateful heart. A heart; that can be healed.

Saratoga Springs, Utah

6 comments:

Michal said...

Jana is a powerful example of strength and faith and hope in my life. She has endured much and contiues to smile at the good things in life. Thank you for posting her story. I have linked this post to my own blog to share with others.

Anonymous said...

I heard you, and I am so sorry about your daughter. I have Cancer also, and I understand the words you are writing. You are amazing, and have touched me by your words. May God Bless you and your family, and your angel in Heaven

Anonymous said...

I'm listening now, thank you for teaching.

Anonymous said...

I too am listening with a heavy heart and I hear you. You are the face of Cancer, the face of Faith and the face of Hope. The Hope that every woman with cancer is looking for.

Suzie said...

Each time I hear this I remember the pain & heartache, the faith & trust, the unbelievable trial that this woman & her family has gone through.
I stand in disbelief that one mother could have such a trial.
I know that today she is happy, loving & kind despite the unexplicable loss she endured.
I've been moved to tears & touched forever by Jana.

Anonymous said...

Thank you Jana for having the strength and wisdom of sharing your story. I am moved beyond words or expression. Your endurance is an amazing example to us all. Your story has made a profound and indelible mark on my life. May God bless you and your family.