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Found 5 results

  1. MY STEPS TO SURVIVING A LUNG CANCER DIAGNOSIS Step 1 – Invest in sophisticated diagnosics 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.), I suggest getting a computed tomography (CT) scan, often called a CAT scan, of the chest once a year. Insurance now covers it and 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 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. Learn more about early CT screening. Step 2 – Choose a good general practitioner Your general practitioner may 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, there can be great benefits to having a GP who is seasoned and well known in the medical community. I prefer doctors of osteopathic medicine to medical doctors. I’ve found that in my experience 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. There are great health care professionals out there. Step 3 – Ensure your oncologist is a physician A doctor has a degree in medicine and a license to practice. 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 some characteristics your physician oncologist should possess. Step 4 – 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; a good resource is the www.LUNGevity.org 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 5 – 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 or messageboard. I am a member of several 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. 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 6 – 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 7 – 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.Read about Steve Jobs—one of the smartest technologists and businessmen the world has ever known—who delayed his cancer treatment. Step 8 – 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 psychologist, 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. Some areas where these take place are kept very cold. Many treatment centers have volunteers—engage one in conversation. Many 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, I never go alone to a consultation. I suggest if you can, always have someone with you too. Step 9 – 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 likely 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 10 – Choose to live When asked about my cancer experience, I often tell those in treatment that cancer is a disease of life or death. I believe 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. Stay the course.
  2. Perhaps you’ve heard? The federal government is a large insurance business with a standing army. Social Security is insurance — a specific kind of insurance called an annuity. The insured and employer pay premiums every month to fund a defined benefit at a specified year (normally your federally mandated retirement year). Everything is peachy-keen till a disability affects work because one has late stage lung cancer. And, when a lung cancer survivor files for disability, allowed by law and regulation, the federal government almost always disapproves. So, here are some suggestions for obtaining disability benefits by disapproval. 1. Expect to be Disapproved. I know a lot of folks with lung cancer. Among this population, only one was approved on initial application. He passed before he received his first benefit check. My company provided disability insurance carrier filed my first application. I had an unresolved bronchopleural fistula after a pneumonectomy that required a second and third surgery and indications of tumors metastasized to my remaining lung. My claim, filed by a former Social Security claims adjuster, was disapproved. 2. Involve Your Doctors. The disability application requires you to disclose all your physicians and medical providers. Then, the administration asks for medical records, reports and observations. Doctors are busy folks; oncologists are bombarded by SSA requests for information, and for good reason. Late-stage lung cancer (including treatment and side-effects) is often disabling. Inform your medical providers of your application and ask them to help by responding to the request for information. 3. Complete the Application. The Social Security Administration is a bureaucracy. Bureaucracies love to find “nits” in applications and return with some very vague description of the problem. This delays a decision and delays payment, and these are typical insurance company behaviors. Read every word of the disability application process (it is all online at www.ssa.gov) and check your application closely to ensure it is complete and error free. Have several family members check it also after reading the application instructions. Ensure you completely describe your symptoms including those caused by side-effects. Also, completely describe how these symptoms affect your ability to stand, sit, walk, bend over, think, concentrate, and etc. (Hint - read the criteria that will be used to determine your disability finding and use those words as descriptors). 4. Understand the Fine Print. There is payment delay: six full months after the date of disability (date shown on claim approval letter). Depending on other income sources, payments may be taxable. You are not found to be permanently disabled. Regulations allow a review of your status after start of disability payments. It is not a good idea to join an adult softball team while receiving disability payments! You are not eligible for Medicare until 24 months after receipt of first disability payment. Your disability payment will be less than your full retirement benefit, and when you reach retirement age, your retirement benefit will not be increased. 5. Lawyering Up. Filing the initial disability application online is a good idea, as long as it is properly completed and supported by doctor reports and observations. But when denied, it is time to level the playing field and retain a lawyer. Not any lawyer, but a law practice that specializes in Social Security Disability appeals. By law, they cannot charge you for their services. They collect fees directly from the Administration if an administrative law judge approves your appeal. And, most important, they know what they are doing and it is in their financial interest to do a good job on your appeal! The disability process is deliberate, lengthy and frustrating. Like lung cancer, success involves persistence. Insurance companies don’t relish paying claims and every approved disability claim turns a premium into a disbursement. But, Social Security is insurance with disability payment provisions that you pay for! If you can’t work, apply, appeal and persist! Stay the course.
  3. I am writing this from the pool deck of a cruise ship while on a transatlantic sojourn. Our fourth transatlantic and our favorite form of vacation, we cross then pick several countries and explore. This year, after docking at Barcelona, we fly to Ireland and tour the wild and unpopulated western coast, then spend a long weekend in Edinburgh, and fly home. The cruise and the touring after is wonderful. The flight back is a nightmare because my incision scars throb in pain in a pressurized aircraft. We need to make the return flight in two legs (overnighting in Boston) to recover from the pain. The national hope summit concluded, and missed for the second time because of our annual spring migrations, I tell you about our cruise as two examples of hope. First, we undergo treatment and endure discomfort for a reason -- extended life. It is important to shelve the treatment and uncertainty mantle to do something enjoyable with this life extension. We enjoy these long (and reasonably priced) repositioning journeys on a cruise ship. We step out of the mundane and into the lap of luxury and enjoy interactions with the international assortment of passengers we sail with. Second, to the essence of hope, if I can survive to do this, so can you. I will never go back to my lifestyle before lung cancer. But, I can have an enjoyable and meaningful life after lung cancer. And, my attitude dictates the amount of joy and meaning experienced. It is so important to realize this point. We endure treatments for a reason. Find your reason. Revel in your new normal. Life indeed is what you make it. Make yours. Stay the course. Tom
  4. I like thinking about choice. It is an interesting concept and can involve logical, rational thinking and irrational and illogical thought — sometimes concurrently. Choice is not just a human phenomena. Animals make choices, some deliberate and some random. But when all is said and done, a choice is a decision that has an outcome (or consequence). When we make rational choices, we are said to be informed of the consequences. Irrational choices are those where consequences don’t matter. To digress for just a moment, consider the age-old saying involving cake. It is generally cast as a statement of choice that resolves to a consequence: if you eat your cake, you can’t have it. Think about the statement for a moment. If I truly want to possess a cake, I can’t eat it. Both are desirable: having a cake is nice, eating it is better. But, the consequence of eating involves the loss of cake and, for example, a further consequence if one planned to use the cake to celebrate a child’s birthday. Most would characterize eating this presentation cake as irrational. Disappointment is the consequence and it is known and understood before making the choice to eat. Let’s extend our thought experiment to a choice between lung cancer treatment and continued smoking. Surgery, radiation and chemotherapy all irritate the lung, and presume the smoker realizes that tobacco smoke (indeed any smoke) is also a lung irritant. Choosing smoking under these circumstances is irrational. The known consequences range from healing problems, surgical failure, and premature reoccurrence. Yet these don’t seem matter. The impact of consequences will also disappoint the treatment team and family who are praying and hoping for success. There are many choices in lung cancer, all with consequences. Not choosing treatment because disease is at an advanced stage is rational. Implicit is the forbearance of side effects with little prospect of success but yielding a higher quality of end-time life. But when one chooses treatment, one is choosing life extension. Choosing also to continue smoking while undergoing treatment is not rational and puts at risk the opportunity for extended life. Let’s make rational behavior choices and avoid undesirable and disappointing consequences. Chose either to have your cake or eat it. Stay the course.
  5. Now, long after the commotion of active treatment, my wife and I often share recollections. Martha is my caregiver and for more than 3 years of near constant therapy she held the long thin line. In doing so, she had to confront my anxiety, discomfort and fear. These were variable; the constant foe was my general irascibility towards medical treatment. Now a 12-year survivor, we both laugh at some of my antics. But during treatment, there was high drama to deal with. It is not easy to watch someone you love encumbered by all manner of tubes and wires in intensive care. Nor is it pleasant to attend to the full-throttle roar of chemo-induced side effects. Moreover, there is recognition that the side effect bedlam will occur with the same progression and intensity a short time in the future. Add to that the burden of failed treatments and the inability to influence outcomes. These are the plight of the caregiver. While in the throes of treatment, most appreciated were the little things Martha did for me. Discharged from hospital with a chest tube in my lower back, scratching my back was a godsend. I was beset with “taxol toes” and rubbing my feet with Aspercreme provided immense temporary relief. But most appreciated was her homemade chocolate mint chip ice cream. This was an effective counter to a waning appetite, enormous attitude boost, and a relished wonderful concoction. There is a fundamental reality about treatment recollection: the patient and caregiver have vastly different memories of the same event. I find it useful to accept Martha’s version as a higher order truth for two reasons. She was an observer and not under duress, and I was normally at wits end totally undone by the experience. This difference in perspective points to the essential role of the lung cancer caregiver—a steady hand in a sea of turmoil. Stay the course.
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