One Moment Can Change Your Destiny

My Symptoms had been mounting for months. Malaise and fatigue had been my companions each day as I awoke. I had also noticed a subtle pain in the right upper quadrant of my abdomen for the past eight weeks. I tried ignoring these symptoms, attributing them to my " workaholism "over a lifetime. Moreover, I had decided that my abdominal pain was a result of the daily weight lifting routines before my nightly runs.

The day in question started routinely. I had showered and then went to the medicacal center to start a ten hour stint in the emergency room. Around seven that evening I got home and started my nightly four mile run. I can remember it like it was yesterday. The temperature was around twenty five degrees and the snow had started to fall. I had worked ten days straight and was so looking forward to these periods of solitude.

I recall that the discomfort I had been feeling in my abdomen had started up again during this run. When I came home, as I opened the door mof my condominium, my whole world started crumbling down around me. I had difficulty breathing and felt an excrutiating pain in my right ribs as I collapsed. As I lay on the floor, the pain came in waves. Even though I didnt realize it at the time, I had lost fifteen pounds and had a fever of one hundred and two degrees. I somehow made it to my car and drove to a trauma center of a large medical facility near my home. The staff thought I might have an acute abdomen so all they could do was give me IV fluids and oxygen. I could have nothing by mouth and they said it would be dangerous to address the pain with medication. It was one of the most horrific nights of my life. The next morning after a battery of tests I called my father to come in. . While he was standing next to me in the emergency room, the attending physician walked in and said he had some bad news. The tests , he said, had shown that I had cancer all over my liver. Not only that, he stated that the lesions seemed to be in most of the quadrants of my liver with metastasis to my lungs. They were going to keep me in the hospital to find out the primary source. Tears started crawling down my face as my father held me. We both were speechless. Here I was a health nut and semi-vegetarian looking death straight in the eye at fifty years old  Anyone that knows anything about cancer knows that primary liver cancer leaves the patient with very few, if any options. Most people with this kind of diagnosis are doomed.

During the hospital stay my oncologist performed another battery of tests but could not find a primary tumor source. I was send to the operating room for a liver biopsy. My temperature had risen to 102.0 F, my bllod pressure was very low and I was lethargic. The radiologist told me that it would be a risk to give me anesthesia or sedation., therefore, only a mild local pain medication ( lidocaine ) was administered. After I was prepped and sterilized for the biopsy with betadine, I felt a large needle go into  the right side of my abdomen.  The nurse standing by my head gave me a tongue depressor to clench when the pain got too bad. he also told me to squeeze his hand at the same time. After 25 minutes of clenching and squeezing, the radiologist could not get a sample of my liver and told me that they were going to go through my chest. A larger needle then bore into my right chest wall as I clenched, squeezed and grimaced in pain. During the height of my agony the tongue depressor split in two between my teeth. Tiday waves of searing pain were traveling and rushing from my right chest wall down to my liver. The agony continued over the next twenty to thirty minutes untill the needle was finally pulled out. Forty eight hours later I was told that I had one of the rarest liver sarcomas in the world. ( Stage 1V ). The oncologist told me that he had never seen this before and there was no therapy or protocols availble to give me. As he walked away,,, he told me to get my affairs in order.

NEW WORLD OF CANCER / MEDICAL LIAISON, RESEARCHER

Over the past thirty years of practicing medicine I have seen so many cancer patients at the end of their ropes. Most had tried some kind of conventional treatments and others wanted to do only holistic therapies. A portion of these patients were lucky enough to survive and stabilize, while others were not as lucky.

Cancer is a very complex set of over 100 diseases that can fool the brightest minds in medicine. By the time a patient is diagnosed, often the disease has advanced and spread without the person ( or their clinician ) even realizing it.

Studies have shown that patients who are assertive and proactive have better outcomes then those that don't. There is a new relm of the patient-clinician relationship called "Shared Decision Making ". This is where the patient often comes to the oncology appointment armed with a list of questions and concerns to be discussed. During the interview the risks and benefits of his or her therapy is discussed along with any other concerns.

Over the past decade a new kind of relationship has evolved. Patients with rare or advanced cancers are starting to look for other professionals to help research their illness. I would like to call these individuals medical liaisons or researchers. They could be your personal physician, nurses, nurse praticianers, or physician's assistants. The medical liaison can help you get past the gate keepers in doctors offices or medical centers. They could find consultants and specialists on your behalf and hook them up with your oncologist. A liaison can open valuable doors for you. They may be able to find opportunities and therapies that you or your clinician are not aware of. They also may be able to help you find integrative evidence based therapies for you to investigate. Moreover, they can use the library resources in medical schools or medical centers to assist in your research. Knowledge and information are very valuable weapons to use in your fight for survival. They are ESSENTIAL LIFELINES that many patients do not have access to.

An intelligent assertive medical liaison could help ( along with your oncologist ) tilt the balance between life and death. It would behoove patients facing rare or advanced cancer to consider finding a person such as this.

We are leaving the OLD WORLD OF CANCER ( SHOTGUN THERAPY ) and entering into " THE NEW WORLD " which is " PERSONALIZED CARE ".