I absolutely loathe anyone using the term "living with Stage IV breast cancer." I ask: Are you really living? Is your life still the same as it was before the cancer? Do folks around you treat you differently?
First and foremost, I am not living with the disease. I am fighting to exist.
Seventeen years ago, I had a biopsy. The results indicated zero-to-one stage breast cancer. Not bad if you're going to get diagnosed with cancer! There was a very tiny lump detected that didn't show up on my mammogram. (By the way, I was faithful in getting mammograms every year!) When the surgeon looked into my face and said the words "You have cancer," I went into shock. I sat frozen and then began to shed tears. My younger sister tried to console me while trying to be brave. But, she began crying, too. I thought: How can this be true? There must be some mistake. We had no breast cancer in our family history. Surely, the surgeon was wrong.
He was not wrong. I had to undergo a quadrille lumpectomy. About 20 lymph nodes were removed from under my armpit. The pre-op was grueling. Sitting in a booth-like seat, the surgeon asked that I remain very still while a bunch of needles loaded with dye were stuck in my breast. Now that I look back, the procedure seems very antiquated. My intubation presented complications and the surgery took longer than predicted. Worried family members thought the long wait was due to a last-minute decision to perform a mastectomy. Fortunately, that was not the case.
The news after the ordeal was good. I had no node involvement and the margins were clear around the tumor. In other words, the cancer had not spread anywhere; it had not metastasized. After three days in the hospital, I went home. The havoc to my body wasn't over, however. I would have to return for eight weeks of out-patient radiation.
I was extremely sore. It didn't matter; the radiation process had to begin. Having been recently separated from my husband, I drove myself to radiation treatments each day. I would leave my job at two o'clock -- five days a week -- until it was over. Never having gone through cancer radiation treatment, I thought it was strange that the attendants put tattoos on me so they wouldn't lose sight of the area to be radiated.
My final visit provided a ray of hope. The radiologist said all was good and the disease would not return. Thank goodness. It was over. I could start to lead a normal life again. Though the appearance of my breast was no longer normal -- mutilated and scarred -- and my weight loss left me weak, I decided to move on and not look back.
Fast forward to 2005. Continual back pain forced me to visit several primary physicians and pain doctors. I suggested to one doctor that perhaps I should have a certain blood test for cancer. (Once you have cancer, it never leaves your state of mind.) She said, "No you're fine; you look great. Just keep taking the meds." The pain didn't go away, it only got worse. I decided it was time to see an oncologist. After the initial blood work came back, I was told that the breast cancer had more than likely returned. Doctors determined that a cancer cell escaped through the blood stream and entered my sacrum during my first bout with cancer in 1994. It stayed dormant.
The return of my cancer came just months after my husband's passing. (I had remarried since my first test with the disease.) His sudden death frayed my emotions; coping was difficult. No one on the medical team could be certain -- opinions were mixed -- whether the traumatic loss of a loved one could "wake up" the cancer. Since the cancer never left my body, I think it's a real possibility.
My fight with breast cancer has taken me to four states. I have been examined by 11 oncologists. For the past five years, I have been exposed to various cancer treatments designed to suppress, block or slow down the growth of cancer cells, otherwise known as aromatase inhibitors. Monthly bisphosphonate infusions are given to strengthen my bones. These drugs are keeping me alive. And while the drugs have severe side effects, I'll stay on them for as long as I can. I refuse to have chemotherapy.
It's difficult to think of myself as a breast cancer survivor. I don't feel like one. I've done the walk. I've talked the talk. I've even run the race with Oprah in Grant Park. There is no "pink" in my daily walk with cancer. I'm a living human being who happens to have Stage IV, and pink doesn't apply to this advanced stage of breast cancer. Since my cancer has metastasized to my bones, I'm a fighter, not a survivor. I'm fighting to exist, plain and simple.
So, now you have it. The last five years of my life have been ruled by a disease that is incurable. I wake up each day and never know what to expect. When the treatments begin to fail, I try another. I'm running out of options. I say I don't want chemo and I mean it. We'll see; I'm fighting, after all.
A disease like this one disrupts a person's life. I've traveled to see one doctor after another. I've sold my homes and given away animals along the way. Breast cancer has not only affected my body; it's affected my relationships. Friends and pets are left behind in search of new doctors, new medications, and a renewed hope. My future is difficult to plan. My cancer is now my baggage.
I'm surrounded by oncologists, radiologists, phlebotomists, bone scan technicians, MRI readers, and CT/PET scan experts. My life has become all about waiting. I wait for what is called Scan-ziety: wondering if the cancer has progressed or if I've made it through another round. I also wait for blood results that tell if my tumor markers have risen. I wait for doctors to examine me. I wait for the horrible pain and suffering to subside. And sadly, I wait for support group friends I have met in cyberspace to die from this ugly, unnecessary disease.
I'm grateful for sisters and brothers who remain close in spirit, and for my dad, who talks with me every day. But it's still a lonely fight. My quality of life isn't great. I'm single and live with my cats. I have no children. Cancer is always at my side; it's the shadow behind my back that keeps lurking. It's my opponent.
Life for me is a fight... and I'm in the fight of my life. I've got my gloves on, and I'm in the ring. This disease will eventually beat me. But for now, there's no knock-out. I'm still standing, fighting to exist.
Until next time,