Chicago Health is committed to publishing a diversity of opinions. The opinions expressed in this op-ed article are the author’s own. This op-ed is part 2 of a two-part series. Find part 1 here.
As I’ve faced my cancer diagnosis, I’ve learned more about myself in the past 11 months than I learned in my first 62 years. A lot of it has been very challenging, but also rewarding. I have always said that when you stop growing, it’s time to die. Based on what I have learned recently and what I still need to understand, I should have many years left.
The following are some of the lessons I have learned from dealing with stage 4 clear cell renal cell carcinoma the past 11 months. I’m sharing these thoughts in the hopes that you will learn from me and share with others.
Realize statistics are just numbers
Medical teams tell people with cancer not to search online for information about life expectancy — and for good reason, as it’s hard to know what information is reliable and valid. But we can’t help ourselves. I know I looked at all the numbers, and my family did as well.
My initial research indicated that the five-year survival rate for people with my type of cancer was 10%. On the one hand, that sucks. On the other hand, maybe I can be that one out of 10. Well, it still sucks.
But, when you do further research, you realize that these numbers reflect earlier treatments and don’t include some of the newer therapies, including newer immunotherapies. A study released in September showed that Opdivo plus Yervoy — the treatment I’m on — has a five-year survival rate of 48% in people with previously untreated advanced renal cell carcinoma. So, context is everything. I will not allow numbers to dictate my life, nor should you.
Select the right medical team
One of the most important decisions people with cancer face is finding the right medical team to lead them through either cure or durable remission.
Find specialists who have expertise with your specific cancer. Go outside of your city if you don’t have the right experts locally. Look for a teaching hospital with the most up-to-date research. Bedside manner is also critical. I want a highly trained specialist who is also a nice person. They do exist.
When a doctor says, “it’s your decision” after explaining the options, ask them what they would do if it were their child or spouse. I have found it a great way to get doctors to tell me more information.
You also must be a self-advocate. Ask questions, challenge your doctors, seek second and third opinions if the decisions are hard. Remember, you are the buyer of medical services. You have a right to demand high-quality services. In addition to being your best advocate, you should also designate a family member or friend to be an advocate for you as well.
Double-up when dealing with insurance companies
With cancer care, treatments are expensive, and you may be in a position where you are fighting your insurance companies for coverage. My father gave me lots of great advice, none better than telling me to never skimp on insurance — especially health insurance. He didn’t tell me, however, that there will be times in your life when insurance companies act as barriers to getting the treatment, for reasons that I don’t understand.
Some basic guidance: When seeking insurance approval, use a two-pronged approach. First, have your medical team seek approval, while you make calls as well. In your calls to the insurance company, stress that this is the treatment your medical team strongly recommends and that there are no other viable options. If they are not responsive to your calls, keep calling.
Second, if they refuse to cover a certain procedure, ask your medical team to appeal, and you should do the same. Escalating the decision to higher-ups in the insurance company may help get you a positive result.
If all else fails, many of the pharma companies that make the very expensive treatments will provide medicines for free or greatly discounted rates if you show need. Don’t let insurance companies dictate the medical treatment you should have.
Take advantage of palliative care
The first time I saw the phrase “palliative care” in my file, I thought it was the equivalent of hospice. I wish someone had explained to me exactly what palliative care is — and what it isn’t.
Palliative care is focused on providing relief from the symptoms and stress of the illness; it does not mean you are at death’s door. The goal is to improve quality of life for both the patient and their family. Palliative care is provided by a specially trained team who works together with a patient’s other doctors to provide an extra layer of support. They help the patient deal with pain, get the right pain medications, find a nutritional diet, and balance the mental issues of dealing with the disease.
My strong recommendation for anyone dealing with stage 4 cancer is to take advantage of the palliative care team. I have received so many benefits from social workers, doctors, nurses, and physician’s assistants who address issues beyond treatment of the disease. They’ve given me several book recommendations to help me deal with the disease and have introduced me to meditation and other anxiety-reducing methods. These services are not something an oncologist typically focuses on.
Palliative care is based on the needs of the individual, not on their prognosis. It is appropriate at any age and at any stage in a serious illness, and it can be provided along with curative treatment.
Live in the moment and be mindful
I am a type A person on steroids. I was never diagnosed with ADHD, but I’m certain I have it. My mind is always running 100 miles per hour. Getting this cancer diagnosis is challenging for people like me because we spend inordinate amounts of time looking into the future and thinking about getting sicker, becoming bedridden, and dying. When you get scans every three months, you can get scanxiety. It’s real and can have a huge impact on your mental health.
My palliative care team helped me focus on living in the moment, such as thinking about what I am going to do today versus where I will be in two years. They also helped me with being more mindful, which is the ability to be fully present, aware of where we are and what we are doing, and to not be overly reactive and overwhelmed by what’s going on around us. This has helped me focus on things I never focused on and find beauty and enjoyment in them.
Develop a marathon attitude
One of the first pieces of advice my oncologist gave me was to think of dealing with cancer as a marathon, not a sprint. I am very much a sprint type of guy, but unfortunately there is no 100-yard sprint to the finish line. This is a war, and the goal is to win several battles and keep the war going for years.
Like any marathon, there are ups and downs and moments when you want to give up. But, like the best marathon runners, I need to fight hard to get past the parts where I just want to quit. I have to find the strength to move to the next mile. Now that I understand this is truly a marathon, I am better positioned to season the obstacles that have and will continue to come my way.
Find a community where you can share
I found the most incredible private Facebook group where everyone either has my disease or is a loved one of someone who does. It is a place to share, learn, and comfort each other. We can safely ask questions of others and get their perspective, vent, complain, and bitch, and people don’t judge.
I urge those of you who have cancer to find a resource that’s as beneficial to you as my Facebook group is to me.
Address the financial toxicity of cancer
Many people are not only dealing with cancer, but also the costs of care. Financial toxicity is real. Many people are not insured, are underinsured, or simply can’t afford the expenses that arise from cancer even with good health insurance.
I don’t have a panacea to this problem, but we must better address the issue of financial toxicity of dealing with cancer, so all people get the medical advice they need, have finances to sustain their family, and are able to live life with dignity and hope.
Find a strong support network
Your support network is of paramount importance. Having a few people who have your back is critical in battling cancer. If you don’t have that network, get it.
My entire family has been outstanding, including my wife, Donna, and my three amazing daughters. They put up with my moods, cater to my needs, and are always optimistic, without being Pollyannas. I am thankful I am supported by Team Stern, including family and friends. They make a huge difference.
Have the right attitude
Value experiences more than material objects. Experiences have a much longer beneficial effect than material objects that lose their luster shortly after purchasing. Create a bucket list of experiences you’d like to have, and make your dreams happen.
Having the right attitude is critical. Optimism, sense of humor (even a warped one like mine), and positive outlook are all important. People with positive attitudes are more likely to have a better quality of life and a longer life than those who can’t see the blue sky when it’s right in front of their eyes.
Address your legacy
With this cancer diagnosis, legacy becomes even more important to me. I want people to have wonderful memories of me.
When my brother Mitchell died in 2001 of a brain aneurysm, I was one of several people who spoke at his memorial. I advised friends to “take something from my brother that touched you and make it part of your life. It could have been his smile, unique humor, or warm personality. And, when you use that in the future, think about where it came from, and you will always remember my brother and what he meant to you.”
I ask my loved ones and friends to do the same for me.
Face the future
I don’t know what the future holds for me, but you don’t know either. From the day we are born, we begin the process of dying. With my cancer diagnosis, nothing changes, except I have more obstacles confronting me.
As Paul Kalanithi said in his book, When Breath Becomes Air, I knew two things for certain before my cancer diagnosis: I am going to die sometime, and I don’t know when. Now that I have cancer, I know two things for certain: I am going to die sometime, and I don’t know when.
What I do know is that I’m going to enjoy every moment of my life with my family and friends and take nothing for granted while enjoying all the amazing things that are out there for me. That is my silver lining with this horrible disease. While it may seem to be an oxymoron, I have stage 4 renal cell carcinoma, and I am more content with myself than I have ever been.
