"You are not getting any better." She could have said "you are getting worse," but I guess that's not exactly how an oncologist starts a conversation with her cancer patient. Neither statement softens the blow, although her approach was the kinder of the two. I wasn't surprised by what she said. I knew the circumstances even though I didn't know the details of the situation. I haven't been feeling better, and I mumbled something to that effect in response. She pulled up the rolling stool and sat down to face me. Now what? Today, with this headache, I was unprepared to handle any more bad news about my health.
She wondered why the Imaging Center did not do the CT scan that she had requested. I told her that my insurance company had sent me a letter stating that they would pay for the MRI and PET scans that my oncologist ordered but they would not pay for the CT scan. I will never understand why it's acceptable for an insurance company to make medical decisions. Since I began this ordeal in 2007, this was the first time I had been denied coverage. Realistically, I guess the insurance company isn't saying that you shouldn't have a specific test done. Just understand that they will not pay for it if you do. She said that she would take care of it. She needed the test to decide what to do about my liver, which showed progression on the PET scan. Without the CT scan, she wasn't sure if there were more liver tumors or if the one tumor that we've been watching had increased in size. She also needed that information to decide if I should start chemotherapy. Even though I knew there was a tumor in my liver, I had not been having any problems from it that I knew about. With more progression in the liver, chemotherapy may be inevitable. At the mention of chemotherapy, the pounding in my head seemed to become more intense. Chemotherapy had nearly knocked me out of this world in 2003. I began to wonder if I was strong enough to go through it again. Starting chemotherapy meant that I was running out of treatment options. I wanted to run out of the office. I wanted to hide. I wanted to scream. And I wanted to cry. I felt every ounce of energy drain from my body. My body. It was failing me. I have not been a saint, but I have tried to treat it right. Why was my body turning against me?
The MRI showed no cancer in the brain, but the constant headache that I've been having for four weeks indicated that something was wrong. I have no signs of having brain cancer (dizziness, nausea, and light sensitivity). We knew that there was definite progression on the left side of my skull. Last week when I came in for my monthly treatment of Zometa, my oncologist had given me an IV bag of steroids for the headache, since nothing in my arsenal of pain relievers was helping. She also gave me a step-down six-day pack of steroids in pill form to keep the inflammation under control until I had the MRI on yesterday. The images from the MRI showed that some type of trauma had occurred. There was a lot of inflammation. She said that the images resembled those of a person who has had a stroke. No, I have not fallen. No, I have not been hit on the head. And, forgive my ignorance, but wouldn't I have had signs that I've had a stroke??? She gave me a prescription for a two week supply of a different steroid, and the plan is to send me to a brain specialist for further evaluation.
Progression continues in my pelvic bone, especially on the right side. She asked if I was ready for radiation to that side, since the radiation on the left side that I received in June had been successful in reducing the pain. Since the tumor flare several weeks ago on the right side, I had been having tolerable pain. I wanted to save my radiation option for when I had unbearable pain, so I told her that I wanted to wait until we got to that point.
All this means is that the Aromasin was not working. Tamoxifen had failed. Femara had failed and now the Aromasin had failed. She would forgo trying the last of the aromatase inhibitors (Arimidex). My own research revealed that Faslodex was just as effective as Arimidex, but when it was administered as a fourth line of treatment, it's effectiveness was not very good (less than 20% of patients showed stability) because the body had developed a resistance to hormonals. Instead of taking a daily pill as I've been doing with the other drugs over the last three years, I would have two injections of Faslodex (one in the muscle of each butt cheek) once a month. We would continue the Zometa infusion once a month and the Lupron injection once every four months. So, I still had another treatment option, but I seemed to be going through my options rather quickly.
My oncologist also wanted me to sign a consent form to have samples from my cancer tissues (collected from my mastectomy in 2003 and biopsies in 2003 and 2008) analyzed for possible participation in upcoming clinical trials. She wanted to make sure that she wasn't missing a treatment protocol that would work for me. It will take about two months for the results to come back. I didn't hesitate to sign the 10 page consent form. I'm willing to try anything and everything. But, I have to say that I didn't even realize that they saved the cancer tissues. Upon reading the consent form, apparently, the samples can be saved for up to 15 years.
I'm having a "woe is me" day. I'm frustrated, angry, and sad. I'm trying to stay positive and trying to will my body to good health. I'm trying to keep my head up. But, it is taking a lot of energy to deal with the pain, to deal with the side effects of the medications, to work a full time job, and to just deal with life in general. I want to fight. I haven't given up. But, damn it, I need a freaking break! I'm tired. I want it to just go away. With the headaches, I have not been able to run to relieve the stress and to re-energize myself. Walking or any type of sudden movements makes the pain worse, but I can't just lie down all day. The steroids have me wired, and I can't sleep well, even though I'm exhausted. I have to work, and even my work is suffering because I can't seem to think straight for long periods of time. And I need my job. For whatever hoops the insurance company puts me through, I need the insurance to pay for my treatment. Plain and simple, treating metastatic breast cancer is expensive, and I'm not an independently, wealthy woman.
Lately, I've read a few articles about the expense of treating patients with terminal illnesses. The trend of thinking now is that if a patient has not improved after three different treatment protocols, then the doctor and patient should discuss end of life decisions (no treatment, hospice care, etc.) because it burdens the insurance companies. Also, those families with insufficient health care insurance are forced to spend their life savings to pay for treatment of a person who will die in a relatively very short period of time. Faslodex is my fourth treatment protocol, but I'm not ready to discuss end of life decisions. No thanks! My insurance company had better prepare to be sucked dry, because I will try every treatment protocol out there that I'm eligible for in order to find the solution that will eventually work for me. And when the insurance company kicks me to the curb, I'll sell everything I have to pay for the treatments. I'll be the patient on her death bed with a lap top computer still looking for one more treatment protocol to try.
I need to relax, and I can't seem to do that. If I can relax, maybe I can refocus my energy to manage this disease. I once thought that I would be in that rare group of metastatic breast cancer survivors who gets to experience NED (no evidence of disease), but lately I've been thinking that I may be in the majority group of those dying from this disease. Thoughts like that are not productive. I need to acknowledge the facts and then move on quickly. I seem to be lingering, however. I'm not afraid of dying. I'm just not ready to die. I love my life. And I want another 30 or 40 years to enjoy my life. I hate thinking about death. I hate thinking about cancer. I HATE CANCER!
4 years ago