On the Way to the Dentist I Discovered a Brain Tumor!
Marcia’s Journey Through Stage IV Breast Cancer
"Hi, I am Marcia and I was diagnosed with Stage III breast cancer in 2010, after repeated visits to the doctor because I knew something was just not right. I was put on hormonal therapy to relieve seizures, myolconus jerks from lack of estrogen, and was a guinea pig with bioidientical estrogen. My doctor was practicing on me so to speak. I liked him and came to trust the estrogen in spite of my initial doubts. So the estrogen fueled the cancer to start. Got the hormones even though I instantly baulked; [I wanted to] walk out of his office because he suggested hormones, right after I told him my sister had just been through stage I breast cancer. Unfortunately, I should have followed my gut instinct and walked out of his office.
"So that is how it started, bioidentical hormones, and it was not caught in time. I went through a mastectomy, then chemo and radiation during which time I had a bad time with lympededma. I had to get a sleeve and do months of therapy which never really healed that arm. I used reiki and special foods to assist with the possible recurrence that I feared. I bought a juicer, and did not know how to use it. I went west to visit a naturopath, who recommended I do only traditional therapy with some food modifications, mistletoe, his supplements. I left his office after one $1,500 treatment. He was way expensive though he had success at treatment of his stage IV lymphoma, and was cured.
"I taught art history online with tons of typing. I ended rads a bit early because I had just had clear scan MRI on both breasts and because I was afraid to lose my typing hand. Oddly, my intuition informed me that I would lose a hand; not the left hand, but the right hand. Gradually my fingers became numb and tingling, as well, I could no more hold a pen, pencil, and I am an artist! I was devastated and kept returning to the same neurologist who gave me the hormones. He never correctly diagnosed the brain tumor that was the culprit underlying my numbness and hand's loss of motion. I kept persisting and no one could tell me why I could no longer use a pencil, zip my pants, or button a coat. I had to resign from teaching as I could no longer do typing, or grading. My hand lay there limp.
"One day on the way to the dentist in early 2012, I had feeling like I was about to have a stroke while driving. At the dentist's I had high blood pressure. They held me all day in the ER. I was about to walk out, but something told me not to. I mentioned to the doctor that I had started with head pains and could I have a head check or MRI? She booked it. There it was, a big tumor in my left and parietal lobe.
"I was devastated, but now I knew what had caused my right hand to stop working. Small comfort.
"I went home that night feeling my life was done. I was on steroids for only 3 months. At the local clinic they only offered me brain surgery -- which I did, and it was a long recovery. After that they insisted on WBR (whole brain radiation). I opted to look at studies on clinical trials.gov.
"I was not wanting to lose my sight, or mind. I did read Breastcancer.org and saw the ladies with stage IV complaining of no vision and hearing loss.
"I found a study of radiosurgery, only to learn it had closed. My oncologist, now having left her practice due to breast cancer herself, at the local clinic was totally unaware of the 50-60 studies I sent her. No time to read or reflect for me. I had to find my way. I found Rush University, and sought consultation with them. Although the study closed, they had the new treatment available, and saw me. There were all research, young, and professional. I was out of [my insurance] network, but insurance promised it would be covered at 100%. I owed $50,000 later and had to fight that until I was considered unable to pay the full amount due to lack of employment.
"Rush University was a big and great research institution. I got radiosurgery at Rush University Medical Center in Chicago in one day, painless, reassuring as cancer was residual spot left in my tumor bed of my left lobe. I had considerable hand loss and wasting of muscle, compounded with my left arm lymphedema. I was forced to apply for disability and had to have help in the home for daily living skills. I have been cancer free for almost 3 years now. Had I not taken responsibility for my own care, I might not be here. I was not in an area of the country where good care was available.
"I am still a painter, and recently exhibited my former artwork at the Hoogland Center for the Arts. The art was to benefit breast cancer victims, but never reached the press. It was titled Diana, Queen of Hearts, a tribute to Princess Diana. I went back to teach online in arts and entertainment lectures, but then was fired for being disabled. I have had many satisfying life experiences and want my old life back, that of publishing books, and hosting radio shows. It has not come to pass. I have to live each day with a daily exercise regimen of adapted yoga, lymphedema, juicing 2 lbs of carrots, using a biomat, and hoping that something will come along by the day I get the news that it has returned.
"I would like to travel internationally but have been unable to, and hope to do more painting using my adaptive brushes. I have retired from teaching and speak to cancer groups and appear on radio concerning my journey. I am a reiki master and assist other cancer patients with the soothing benefits of reiki as a complementary approach to treatment. I believe that anything is possible and many friends tell me that I look well and I am an inspiration to the other cancer patients and in general. I love to present workshops and enjoy public speaking when I can. My life will never be normal again but I am so grateful to be here. In order to survive stage IV, I found that you need to do your own research, and try alternatives as well as traditional therapies. Eating organic/vegan and juicing seems to help in prevention of a recurrence, at least in my case. My oncologist said I am the only one she has had that survived a brain tumor and looks so well."
Note: See Marcia's work at www.dianaspeakstotheworld.com.
--MarciaM, 2 1/2 years metastatic