September 4th, 2008 9:30 PM

Does my doctor care if I die? Does the state I live in determine the level of health care available to me? Does my income or type of insurance dictate how long I will live? I am in a battle for life or death. Decisions made today could affect how many days, weeks or months I have left to live. I am staring death in the face and I am scared witless.

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 was 30 years old and I didn’t want to visit the doctor because it cost money. Office exams were not covered by my insurance unless I first met a deductible, which I never had before. When I had chronic back pain, I went to see a chiropractor. Since he was not on my insurance plan, I paid in cash for each visit. The chiropractor could not understand why a healthy woman would have so much back trouble; at least the xrays and my health history hadn’t given him any clues. In the fall of 2002, my three boys were young, all under the age of 9. I was busy every morning with making a healthy breakfast, packing a sack lunch, volunteering at school and church, tending the children for long evenings while my husband worked to achieve a foothold in the mortgage industry. I noticed a lump in my right breast that fall. 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. As the end of the year drew near, I specifically wanted to wait and visit the doctor in January, since I would most likely have to meet my insurance deductible if I had to have the lump removed. 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 before he could remove the lump. He wanted to be sure what he was dealing with before attempting surgery. My mammogram was in the middle of February. The technician called me back the same day and asked me to come for an ultrasound. The radiologist doing the ultrasound was quite blunt. “This lump has the typical star pattern of blood vessels feeding it. If this isn’t cancerous, I’ll take you out to dinner,” he boasted. I really hoped to take him up on his offer. The radiologist took a biopsy. The procedure was painful and tears welled in my eyes. I went home and waited for the news. The next day, the lab called on the phone with the confirmation. My tumor was cancerous. My life would never be the same.
The radiologist made some calls and arranged for me to see a general surgeon the same day. It was at the end of his day. I was the last patient and he took almost an hour to educate me and inform me of my options. I needed to make a decision. Do I have a lumpectomy? A removal of the lymph nodes under my arm? He offered to try a “sentinel node biopsy” which involved injecting a dye into my breast and removing the lymph nodes that were closest to the tumor, on the rationalization that if the first nodes were positive, then we knew the cancer had spread “down the line.” My surgery was at the end of February. I was still recovering when we moved into our new house on March 1st. I met my oncologist for the first time. I chose her because she was the closest doctor who was also on my insurance plan. She informed me that I was facing chemotherapy and radiation and she also recommended removing my ovaries, since my cancer was estrogen receptor positive. She ordered a PET scan, which would show any other areas to where the cancer may have traveled.
The sentinel node biopsy was positive. The surgeon indicated he thought I still needed more lymph nodes removed. Also, my tumor had been against the chest wall, 2.4 centimeters, and he hadn’t been able to remove clear margins of tissue surrounding it. The oncologist recommended a mastectomy now, in addition to taking out my ovaries and removing the remaining lymph nodes. I made the decision to go back under the knife. I couldn’t feel peaceful about the way things were. I wanted every bit of cancer out of me. Later, we learned that would never be possible. The PET scan indicated that the cancer had already spread to my bones. Once in your bones, cancer can be treated but not cured.
My oncologist changed the treatment plan. Instead of chemotherapy, I would have radiation and “hormonal therapy” in the form of tamoxifen. The doctor would monitor my condition and do tests from time to time to determine if the treatment was working. I followed her advice. I had six weeks of radiation treatments to the flat side of my chest. I took my pills and submitted to occasional tests. A year after my mastectomy, I consulted a plastic surgeon and was able to have a TRAM flap reconstruction. The insurance paid for everything, after the deductible and out of pocket maximum had been met, of course.
We estimate that it costs around $8500 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 terminall 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. Ironically, if I had spent the money to visit the doctor, he might have found my tumor earlier, before cancer had spread into my bones. If our little family hadn’t struggled with financial challenges, I might have bought healthier food. If we had better insurance, I might have gotten more check ups. If we had more money, I would have exIf our little family hadn’t struggled with financial challenges, I might have bought healthier food. If we had better insurance, I might have gotten more check ups. If we had more money, I would have exercised more, eaten better, had less stress, and on and on. I could think of endless “should haves” and “would haves” but in the end I had to accept my illness and deal with it and not look back.

Fast forward 4 years. My cancer 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.
The month I quit chemotherapy was the month the mortgage market crashed. Almost every loan my husband was working on fell apart. Wholesale lenders were going out of business left and right. For the first time in 6 years, we had no money coming in. We struggled to cut our losses and reign in unnecessary expenses. We took a family road trip, but only because we didn’t know when we would get another chance, with school starting and the market reeling. Since my youngest boy was in 1st grade, I took a part time job at the school. We sold our travel trailer. We sold our nice SUV and bought a cheaper, older one. We paid off any outstanding debts, wanting to reduce our monthly obligations.
At the end of September, 2007, the 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. Knowing that if I didn’t get treatment, I could die, I began my second course of chemotherapy right before Thanksgiving.
I wasn’t as sick with this second drug. 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. I was hoping to get a break from chemotherapy, to let my hair grow back again, to have some good news, even though my husband had just closed the doors of his mortgage business because it couldn’t turn a profit. The news from my oncologist was not good. Instead of improvement, 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. The only good news was that my pain was still subsiding. How could the test results be bad when I felt just fine??
I immediately took the doctor’s advice to switch drugs. In May, I quit my job several weeks before the end of the school year. I tried to eat healthy foods and take more supplements. I tried to research alternative cancer therapies. 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. Who to believe? To whom could I turn? What treatment can I get with the limited insurance plan that I have? Suddenly I could not take my doctor’s word for absolute truth. 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?
In August, it was time for more tests. My hair was actually growing back and the current chemotherapy drug was tolerable and I was only sick a few days per week. The test results came back worse than ever. The doctor said I was at risk for liver failure, as the tumors continued to grow. One of my shoulders was at risk for fracture, as the cancer had eaten away much of the bone. The cancer was progressing faster now and the prognosis wasn’t good. The only treatment offered me? Chemotherapy, of course. Though, it was not likely that the next drug would be any more effective, given my recent track record.
It was time to stop and reevaluate. Similar to last August, my husband had almost no income. We still owe the clinic for the amount our insurance didn’t cover. We can use credit to pay for groceries or the mortgage. Surely the next month won’t be so bad. Then, the bottom dropped out of my world.
Four days ago, I woke up to pain in my shoulder. As the morning went on, I felt pain in my abdomen, right below my ribs, on the right side. Every time I took a breath, I felt pain. My abdomen was swollen. It hurt to press on the painful spot. The pain got worse and I started to panic. I considered calling my husband or a friend. Then, I figured the best thing was to drive myself to the ER. It was Labor Day, unfortunately, and the doctor’s office was closed. The hospital seemed like the best option. I could barely walk from the car. Breathing was difficult because of the pain. I made it through triage and into the exam room. The doctor came in and pressed on my abdomen. I started to scream. The pain was intense. I didn’t know what was happening. Was my liver failing or was it something else.
Subsequent tests ruled out any problems with my gallbladder or a blood clot. The only possibility was the tumors on my liver. They had grown to the point that my abdomen was bloated and even the ultrasound technician couldn’t put the probe on my abdomen until the nurse administered pain medicine. After six hours and 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? Is that all the medical community has to offer me?
That day, I decided to get a new doctor. Surely another opinion could help me with my decision. I got a referral from my insurance plan. Transferring my records was somewhat tricky. That took about 48 hours, but today the new clinic has my chart. As for an appointment, the secretary has an opening in 2 weeks. Would I like to schedule for the 17th? “Hold on,” I thought. Will I be alive on September 17th? Will my liver fail in the next week or month, possibly while waiting for the appointment with my new doctor? “Go to University of Utah,” one friend recommends. “I know a great oncologist in Rhode Island,” says another. “Our doctor in Utah gave us no hope, but my husband’s life was saved by going to Cedars Sinai in California,” advised a neighbor. Whom to believe? Whom to trust? What to do?
Travelling out of state is not an option. I have no money for gas or a plane ticket. Consulting someone in California will not be covered by my insurance. I have enough debt already, without adding more. Even visiting the University of Utah is not on my insurance plan. But, will spending more money save my life? I sit here, tonight, on September 4th, pondering these questions. My children are asleep. My husband is getting ready for bed. I’m typing on the computer. I have been crying on and off all day. What will happen to me? Should I ask someone to take up a donation to pay for my health care? Should I sit and wait until my scheduled appointment with the new doctor, hoping against hope that he will have some additional insight that my previous doctor may have missed. My oncologist gave me no reason to hope, no reason to expect that my illness will continue to progress, quicker and quicker, until my liver fails and I pass away.
I don’t even have a burial plot. I haven’t planned my funeral. Two weeks ago I was looking for another part time job to supplement our income, but today I am looking for hope. Today I am praying to God. Today I am hugging my children, telling them that I am feeling better, that my blood transfusion yesterday has helped my energy level, that my pain has gone down. But, my abdomen is still swollen. No one from the oncologist’s office has called to see if I want more chemotherapy. They are waiting for my decision, and I am scared to death to make one.
If I had more money, would I live longer? If my family were rich, would I be sitting in a clinic, on the other side of the United States, receiving treatment from the best doctors? Would I be in Switzerland getting stem cell therapy? In India, getting herbal drinks and massage? If I lived in another state, would the cancer treatments be more advanced? If I had another insurance plan, would it pay for another treatment or another doctor? Does money buy health? Tomorrow I will open my eyes to the beauty of Utah and the wonder of nature. Tomorrow I will wake up and have my family close by, but how many tomorrows do I have? I wonder…