I’m re-publishing, in full, an article written by good friend and now-regular TFG commenter, Tom Galli. I was introduced to Tom by my Uncle The Country Doctor on the occasion of my diagnosis of lung cancer. Tom was the first non-family, non-lifelong friend I talked to after leaving the hospital. His advice that night has stayed with me, and it has been an extremely important part of my own (fight for) survival. His continuing support and advice, from the viewpoint of one who has gone through it all, is and will be very valuable to me. The words that follow are from Tom, not me.
Step One – Invest in sophisticated diagnostics before diagnosis
If you smoke, were a long-term smoker, or are in an occupation that exposes you to carcinogenic toxins (asbestos removal, auto mechanic, painter, etc.), get a computed tomography (CT) scan, often called a CAT scan, of the chest once a year. Insurance won’t pay for it, but CT will detect tumors far earlier than a chest x-ray. Early detection of small tumors dramatically enhances your survival chances. I had a chest x-ray in January 2004 and was diagnosed with inoperable Stage 3b, non-small cell lung cancer the following month. The tumor hadn’t shown on the x-ray; but at diagnosis, it was almost 3 inches long and ½ inch in diameter. The only symptom I had was coughing up blood the day before diagnosis.
Step Two – Choose a good general practitioner
Your general practitioner will be the manager of your lung cancer treatment. The GP likely will pick your cancer team and may need to do a little arm-twisting to get things moving. Therefore, he or she needs to be seasoned and well known in the medical community. I prefer doctors of osteopathic medicine to medical doctors. I’ve found that the former treat people, not patients. I believe a good physician shows kindness, consideration and compassion toward those in his or her care. These characteristics are essential. Be sure you know your GP and your GP knows you. Such knowledge and trust will give you a survival edge.
Step Three – Ensure your oncologist is a physician
A doctor has a degree in medicine and a license to practice, but a physician is devoted to restoring, maintaining and promoting your good health. My physician oncologist does a complete examination (looks in eyes, nose, and throat, checks pulse in the extremities, checks reflexes, listens to breathing and heart rate) every visit. He reviews and explains all test results and asks how I feel. He looks at me as I speak, and he listens and makes notes on what I say. He carefully explains medical treatment alternatives that may arrest the disease, and together we choose each next step. He never rushes consultations and, consequently, often is late to scheduled appointments. Because his tardiness results from spending time with those he treats, I know he cares about me and every other patient. These are characteristics your physician oncologist should possess.
Step Four – Learn about your disease
At diagnosis, I had no idea what lung cancer was. Moreover, I didn’t know what an oncologist did, nor could I spell the word! After diagnosis, I read everything I could find about the disease, starting with the American Cancer Society website. Then I read medical journals, government reports, research papers and studies. I made notes about things I didn’t understand and asked questions at my oncology consultations. My wife attended every consultation, procedure and test to ensure every question was asked and answered, and that we understood the answers. You need to know about type, stage, statistics, radiation, diagnostics, chemotherapy, side effects, surgical options and so much more. Your chances of survival are improved if you are informed enough to ask highly perceptive questions.
Step Five – Acquire a Sanguine attitude Quickly
Cancer is a disease of death; lung cancer kills more than all other cancers. Your attitude toward treatment is, I believe, essential to survival. When you acquire a sanguine attitude, your treatment team will notice your optimism. They will enjoy interacting with you; they will care about you. I strongly suggest you read Stephen Jay Gould’s essay “The Median Isn’t the Message” to help you understand survival statistics and find optimism about what appear to be bleak probability of survival projections. Join a cancer blog. I am a member of RedToeNail.org, a place where I can broadcast my complaints and protestations to people who understand and have useful advice for coping. Find cancer support groups and join one or several. Most people who treat you have no idea how you are feeling. But survivors in cancer support groups understand; they know how you feel—you’ll fit right in!
Step Six – Any port in a storm
There is no such thing as “a little stick!” During procedures and treatment, almost everyone will attempt to gain access to your veins with an intravenous device of some type. All such intrusions are uncomfortable, and unless the practitioner is good and lucky he or she will miss more often than not. If your treatment involves intravenously administered chemotherapy, you likely will get stuck at least once a week. A good way to avoid discomfort and frustration is to ask for a port. Installation involves simple, low risk surgery. Once in place, you need to keep the area clean and exercise precautions when bathing—but access to your veins is no longer a storm but a port in a storm!
Step Seven – Don’t believe the miracle cure
The consequences of a lung cancer diagnosis are frightening. For most, it will be your first serious encounter with the prospect of death. When you type “lung cancer” into Google, you will be bombarded by advertisement that promises miracle cure at considerable expense. There is no such thing as a miracle cure! Before you invest time (now precious) investigating one of these “too good to be true” remedies, check it out on www.quackwatch.org and discuss it with your physician. Oncology is a medical science. Procedures, drugs and protocols are tested using scientific methods that are published and reviewed by peers and regulating organizations. When science-based breakthroughs are discovered, they are broadcast very quickly throughout the practitioner community. One of the smartest technologists and businessmen the world has ever known—Steve Jobs—might be alive today if he had accepted treatment by conventional means.
Step Eight – Don’t try to tough it out
I am a retired Soldier and believed I was man enough to handle almost anything. Cancer proved to be the “anything” I could not handle! I suffered a long time trying to tough it out before I admitted I was depressed. My physician’s response: “Of course you are depressed—how could you not be?” He prescribed appropriate medication, arranged consultations with a physiologist, and suggested I attend support groups. Unless you are tougher than I, you will experience depression. Admit it and accept help. Here are some other things you might try. Ask for the “freeze spray” before an IV is used. If claustrophobic, get a script for Xanax and take it shortly before scans. Even in summer, wear warm clothing to diagnostic and infusion sessions. Areas where these take place are kept very cold. Many treatment centers have American Cancer Society volunteers—engage one in conversation. Most are survivors or caregivers and have a wealth of helpful information. During consultations, I was so frightened I couldn’t rationally ask questions about results or next steps, and I certainly couldn’t remember what was said. Consequently, never go alone to a consultation.
Step Nine – Become a Calendar Maniac
If you have a Smartphone with a calendar application, become an expert in its use. If not, keep a paper “cancer calendar” to record information. Your life after diagnosis will become filled with scheduled appointments, and given the nature of the disease and intensity of the battle, these are appointments you don’t want to miss. For example, my chemotherapy cycle required an infusion every third Friday. I had to record three rounds of steroid medication taken every six hours before each infusion. I had a scheduled blood test every Monday following infusion. Nausea started Sunday morning and lasted until Tuesday. Joint pain started Wednesday and lasted until Saturday. If I took the nausea medication about an hour before onset, symptoms often were minimal. Furthermore, if I started pain medication a couple of hours before onset, my pain was manageable. I used the alarm feature on my phone to warn me in advance. Plus, there was life to live, and the calendar helped me avoid conflicts between my cancer treatment schedule and my life events schedule.
Step Ten – Choose To Live
When asked about my cancer experience, I often tell those in treatment that cancer is a disease of life or death. If you choose treatment, you are choosing life. And if you choose to live, do something with the life you are given. The “something” will be different for each of us, but doing whatever you enjoy or find fulfilling is so important. If you enjoyed an activity before diagnosis, do it afterward. Look at yourself in the mirror every morning. If you don’t see an expiration date stamped on your forehead, then enjoy the day and look forward to the next! Oh by the way, your hair will grow back! Baldness is a beautiful badge of courage.
Want to know about my lung cancer experience? Google Tom Galli – Chronicles of Cancera.
The author acknowledges the competent editing talents of Kathy Nolan.
[TFG here again: if you have a blog, please feel free to re-post all or part of this, with (or even without) a link back here. The message is important.]