Last month, while at the hospital to have blood cultures drawn, I had a discussion with the phlebotomist. After my routine orders to her to be cautious with sterile techniques to prevent contaminants in the cultures, the young woman asked me if I had lymphoma. I told her my official diagnosis is a leukemia/lymphoma diagnosis (CLL/SLL). She proceeded to tell me that her mother had recently had a stem cell transplant for lymphoma. A bond between us was instantly knitted as we shared the common connection of these vile diseases.
I was struck with concern and outrage when she told me that her doctors told her mother not to be on the Internet or researching her disease as she would have a worse outcome. My blood boiled. Had the Holy Spirit not opened my eyes to the wealth of medical knowledge and contacts available to me on the Internet, I believe I never would have lived this long. Most times, if a physician tells the patient something to this effect, he or she does not want the patient learning about his or her disease and challenging the physician.
I am empowered by gaining knowledge about my body, my disease, treatment options, the interpretation of laboratory and radiology reports, and the diagnosis, treatment, and prevention of infections. My family physician is one of the best physicians I have ever encountered. She has supported me and encouraged me as I have advocated for myself. I constantly maintain an active role in the management of my disease. She has encouraged me to enlist the use of alternative and complementary medicine. Despite declining health, we partner together to prevent other diseases and to support my body in every way possible.
Ongoing research, its findings now made more convenient and accessible by the Internet, is critical to surviving disease, procedures, and infections. Online drug interaction programs allow patients to double check their medications to be certain no interactions or warnings have been overlooked. Research being released is quickly available to the patient community. I use many online resources to remain abreast on late-breaking leukemia developments. Despite local oncologists' best efforts, we must remember that they are treating multiple types of cancer. There is no possible way for these physicians to remain abreast of every new drug or development for every type of cancer.
Compliant patients are easy for physicians. They just walk the course charted by the physician, never questioning, never doubting, never going against the flow of what the specific physician feels is in the best interest of the patient. With a serious diagnosis such as cancer, too much can be lost by not involving ourselves in our care.
It is not a comfortable task to become your own advocate in the world of health care. For generations, we have been instructed to go to the doctor, be examined, take our medications, and obey every order that is given. While hospitalized, we have been expected to lay in the beds and question not. Take a moment to review how many patients are killed each year by medication or medical errors, hospital acquired infections, and other mis-steps by the medical community. You will be enlightened.
As the threat of government run health care looms larger and larger, I will speak with certainty that each of us will be well advised to become stronger, more vocal health care advocates for ourselves. The squeaky wheel gets greased, so goes the old adage. Take for example, the Neupogen injections I take to support my immune function when my battered bone marrow cannot or will not produce neutrophils. Normally, I travel daily to the cancer center for these injections. And in the process, I walk into a doctor's office, exposing myself to germs I would rather avoid. Last week when I learned that I was in need of Neupogen again, I called the doctor's office, my insurance case manager, the pharmacy and the claims processor. I explained to them that it is in my best interest to self-inject this medication at home. After multiple conversations, I accomplished this task. Had I not advocated for what was best for me (avoiding daily trips to the cancer center), no one else would have done this for me.
I will tell you with complete confidence, if I had not gained the courage to become my own best health advocate, I would be dead today. I have unhooked my own IV and walked out of the local hospital in the middle of the night due to the negligent care I was receiving. I have turned down the recommendations of many oncologists over this 13+ year cancer journey. I have been told that if I refused treatment, that my bone marrow would fail in 3-6 months and I would be dead, dead, dead (that comment was made in 1999 when I refused treatment).
Mainstream medicine has mocked my treatments from Mexico, the Ukraine, and Canada. It has been critical of my use of acupuncture, Chinese massage and the use of multiple herbs, vitamins and other supplements. Yet, I have outlived the predictions of any physician.
Obviously, I give God all of the credit and glory for my longevity with cancer. By His courage and peace that the Holy Spirit imparts to me, I am able to stand up for myself and make my own decisions regarding all medical options.
I have learned that I (with God's guidance) can improve my medical outcomes by being an informed, empowered patient. I have a multi-faced collaborative team - God is the CEO; my family physician is the Company President; my varied physicians are all Department Heads; and my nurses organize, orchestrate, and assist me, the Chairwoman of the Board!
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