My cancer history 2003-2008

I am a 36 year old stay at home mom with a Master’s degree. Despite my education, I have never held a full time job in my life. I am a textbook example of the need for breast self-exams, as well as the need for regular check ups at the ob/gyn. I noticed a lump in my right breast in the fall of 2002. I remember watching a talk show about breast cancer and I specifically thought, "My lump can’t be cancer. At my age, it is almost certainly benign." I guess I figured if I ignored it, maybe it would go away. David and I celebrated our 10th anniversary that December. In January, we decided to sell our starter home and move into a newer and nicer home, close to David’s office. We made an offer on our house the same day we saw it; the house had been on the market only one day before the owner put out the "sold" sign.

In January, I decided to make an appointment with a surgeon. During the office visit, he asked me to have a mammogram in February before he could remove the lump. The technician called me back the same day and asked me to come for an ultrasound. The radiologist did a biopsy and the next day I was reeling from a diagnosis of breast cancer. I was 31 years old.
The year 2003 was one of surgery and treatments. I had a lumpectomy, mastectomy, oopherectomy and axillary dissection (lympyh nodes removed under my arm.) I had a PET scan which found that the cancer had already spread well into my bones, putting me at an immediate Stage IV. Instead of chemo, my oncologist recommended tamoxifen and later I had six weeks of radiation to the chest wall that autumn.

2004 was my year of reconstructive surgery. A plastic surgeon did a TRAM flap reconstruction and I was happy to look more normal again. The insurance paid for everything, after the deductible and out of pocket maximum had been met, of course. We estimate that it costs around $9000 to keep me alive, each year. That includes my insurance premiums which cover the entire family as well, though they rarely need the coverage. I went from being healthy to being terminally ill in a matter of weeks, but of course the cancerous tumor had been growing in my body for 8 or 9 years, probably since the time I had my first child in 1994.

Fast forward 4 years. My cancer has slowly but surely marched throughout my body, taking hold in new places and causing new aches and pains. Every year, I got a little bit sicker, had a little more pain, had more frequent tests, and new treatment changes. In March of 2007, the oncologist found evidence of cancer on my liver, so I began chemotherapy. I was worried and scared, but I believed that by enduring the horrible side effects, the chemotherapy drug could help save my life, and prevent the cancer from spreading into my vital organs. After five months, I couldn’t stand the treatments any longer. I got weaker after each treatment and it was harder to bounce back before the next treatment knocked me down. I thought, "Surely by now the treatments have killed those cancer cells." Every month I would need a blood transfusion to replace the red blood cells destroyed by the chemotherapy drug.

I took a break from chemo and started a part time teaching job in September, 2007, at the charter school my childern attend. Unfortunately, without the treatments, my pain began to get worse. My bones ached and I was tired and worn out. I would come home from work and take a nap, as the pain medicine made me sleepy and I was catching up on sleep, since I got up early for work. By November, I could no longer stand it. I felt like I had tried to beat back the cancer with the chemo, but as soon as I stopped treatment, it came roaring back with a vengeance. It made me wonder if the chemotherapy had left my body weaker, my immune system so taxed that I had more pain and more cancer than before I started treatment. Still that was all the oncologist had to offer me.

I wasn’t as sick with the second drug. Through Christmas and the winter, my pain was slowly but surely lessening and I had hope that the treatment was working. In April of 2008, my doctor ordered another PET scan. I was hoping to see improvement, but the news from my oncologist was not good. She reported more progression of the cancer into lymph nodes in my abdomen, numerous lesions on my liver, additional metastases in my hips, spine, shoulders, neck and knees. I immediately took the doctor’s advice to switch to a third drug. In August 2008, it was time for more tests and another round of bad news.

Suddenly I questioned my past decisions. Did chemotherapy actually make my cancer worse? Why do I keep getting sicker? Why doesn’t my doctor give more hope or more options?
I was confused and overwhelmed at the sheer number of websites about cancer therapies, many of which contradict each other or vy for your attention with helpful anecdotes of miracle cures and remissions. Whom to believe? Where to turn? Suddenly I could not take my doctor’s word for absolute truth. It was time to stop and reevaluate, but I had less time than I had counted on.
Three weeks ago, I spent the better half of Labor Day at the ER, where my liver tumors were enlarged enough to give me abdominal pain and trouble breathing. All tests pointed to the cancer as the cause. After several doses of morphine, I was sent home with the instruction to follow up with my oncologist on Tuesday morning. I was sure she would want to see me. I imagined she could recommend some type of treatment for my pain, perhaps radiation, perhaps the new radio frequency ablation, or the cyber knife?

The reaction of my doctor blew me away. She wanted to know if I had enough pain medicine. When I said no, she instructed me to ask the nurse for my prescription. "What should I do about my liver pain?" I wanted to know. "These episodes are to be expected," she said calmly and ended our conversation. Stunned, I tried to re-analyze what just happened. Does my doctor care if I die? Does she just expect me to take pain medicine to "make me comfortable" until my liver fails in the coming weeks or months? Does she expect me to take her only recommendation of more chemotherapy, so I can live out the remainder of my days with nausea and baldness?
That day, I decided to get a new doctor. On my insurance plan is an oncologist in Salt Lake. Born in Jordan in the Middle East, Dr. Shehadeh attended med school at University of Michigan and recently practiced at the University of Minnesota. He has four children himself and seems to care about me and wants me to improve my situation. He has recommended a combination of drugs, beginning with two infusion treatments, once today and once in 3 weeks, of a new taxane drug called Ixempra. I will also have an oral dose of Xeloda, a chemotherapy drug which is taken in the form of a pill. In 6 weeks, Dr. Shehadeh wants to do another PET scan to see if the chemo is shrinking the tumors.

I’m a little scared today and worried that I will be quite sick in the next few weeks. One blessing is that a new pain management Dr. met with me last week and prescribed some new pain medicine which has helped to keep my bone and liver pain under control, so I will mostly be fighting nausea and fatigue, with the chemotherapy. I also got my hair cut short yesterday, as I anticipate having to wear my wig once again.

At the same time, I feel blessed and don’t have the time to list the wonderful friends and family who have called, written, left messages, sent flowers, given gifts of comfort and inspiration, have helped with my children and my household and so on. I created this blog so you can connect with each other and I can read your comments and write my own. I’ll try to answer your questions. I appreciate your prayers and your love.
Emilee