We’d like to introduce you to David, another member of your 2015-2016 PatientsLikeMe Team of Advisors. David has been living with Stage IV lung cancer for four years and hopes to be an inspiration to other cancer patients.
He has worked to raise awareness for his condition as a political advocate for the NGO Lung Cancer Alliance. And as a retiree, he stays active by cycling, gardening and baking bread.
Here, David stresses the importance of forging a strong partnership with his care team and reflects on what he calls “some of the best years of my life.”
What gives you the greatest joy and puts a smile on your face?
Knowing at the end of a day that my time was spent wisely and productively. To me this means, like any other person, I have accomplished one or more tasks that are important to me. As a retiree each accomplishment mostly orbits around my avocations that include (1) road cycling (2) gardening or working in my greenhouse (3) baking artisan bread (4) photography and (5) traveling. Each avocation reinforces my emotional well-being and belief that despite having a terminal disease (Stage IV Lung Cancer) I can live like any other retiree and enjoy my life. I have successfully adopted this mental framework for the past four and a half years and know that my disease does not define me. Equally important, I have demonstrated while cancer maybe active in my body, my mind has the power to control my response to the disease. I have chosen to embrace life through my hobbies; I successfully rejected the alternative, which is to fold and identify myself as a hopeless, depressed, terminally ill cancer victim. How ironic that the years since I was diagnosed with cancer have been some of the best years of my life.
How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?
While nobody has directly asked me what is it like living with Stage IV lung cancer, a terminal disease, I suspect many people want to know. Outwardly, they see me living a normal if not an envious life and simply cannot comprehend how mentally this is accomplished (without folding) knowing that I have a terminal disease. I would tell them that advanced lung cancer patients can be grouped into two large cohorts.
The first group represents 80% of all NSCL lung cancer patients that do not have equal access to breakthrough therapies and are treated with traditional chemotherapy and radiation. These treatments exact a toll on the physical condition of the patients, and others often experience the person as looking sick. Then there is a much smaller group (20%) that can benefit from breakthrough therapies, which are called targeted and immune therapies. I fall into the targeted therapy group where you take a pill(s) that controls the cancer without the debilitating effects on the body of those that receive traditional therapies. This is why people who know that I am sick greet me with the words “Dave, you look great.”
Despite this façade, living on targeted therapies has significant psychological consequences. Dr. Vicki Jackson, chief of palliative care at MGH, commented on the emotional state of long-term survivors living on targeted therapies: “It’s amazing, because people can live like they don’t have cancer, just by taking a pill. But patients either expect it’ll happen forever, or the roller coaster ride of waiting to see whether there’s another trial drug…gets incredibly stressful.” Truer words were never spoken. The life that I live becomes soul searching every two months before my next scans. What will be the outcome and how might it impact my long-term journey with advanced lung cancer? Emotionally the ritual is wrenching to the psyche.
If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?
My advice to a person recently diagnosed with lung cancer would be to take a protracted deep breath so that you have time to absorb the shocking news your provider delivered to you. Once your equilibrium has been restored, develop a partnership with your oncology team so that you can informatively participate in your treatment options. Given your situation, be chary about popping the big question “How long do I have to live?” Your blunt question makes your provider respond in kind and the answer may not serve you well. No one lung cancer presents in the same way. Our immune systems are unique and how our disease responds to a treatment modality can be very different from others treated like yourself. For example, my surgeon told me I had one to three years to live. In December I will be alive for four and a half years living through targeted therapies as though I did not have lung cancer.
The more self-serving first question to ask your oncologist is if a DNA analysis designed to reveal mutations in your tumor has been performed. This is extremely important because the answer will help you and your providers to decide where and how you should be treated. If the analysis reveals the tumor harbors an activating mutation, for which there is a targeted therapy, then where you are treated can become a critical question. If clinical protocols are not available at your hospital do you make the decision to travel several hours to another hospital to enroll in a clinical trial? Know that research data shows that targeted therapies can significantly extend the progression free survival of a patient. Alternatively, if no activating mutation is found does it make a difference in outcome if I am treated locally versus being treated at a research hospital?
For the newly diagnosed my final words of wisdom would be to cautiously use the web for information. There is a natural tendency for our minds to go to dark places in this situation. The web offers a plethora of data to reinforce the darkness, which may compound depression and a sense of hopelessness. What is most important in the early stages of your journey is to form a good partnership with your oncology team and to find an anchor that shines a light of hope and promise in the dark spaces of your mind.
How can you use life insurance to reduce the financial burden associated with lung cancer?
People purchase life insurance for a variety of reasons so that families can absorb the loss of income when you pass. Typically, families need money to pay off medical bills, pay off a mortgage and to provide a spouse to give the family time to readjust to a new standard of living. Most people purchase term insurance which insures people for a stated period of time. Buried in some of these policies is a benefit sometimes called Accelerated Death Benefit or Living Benefit. This policy benefit is intended to help ease the financial burden of an individual who has a terminal disease and is expected to die within six or twelve months of their diagnosis. By default, stage four lung cancer qualifies for this benefit. Therefore, without question this allows a policy holder to cash in half of the value of the life insurance policy. The money is considered a death benefit and is not taxable. The other added value to the family is that the premium on the policy is reduced by half.
Share this post on Twitter and help spread the word.