How to Take a Dire Diagnosis and Make the Best of It
By Joel Stern
I Have Stage IV Cancer: The News No One Wants to Hear
I am addicted to playing tennis. I play in USTA mixed leagues, I play every Saturday with a group of guys I have played with for years, and on Sundays, I play with another group of players. I play with 18-year-old kids and adults 60 and above. Now, that love of the game doesn’t necessarily equate to being great or even very good, but I get such enjoyment out of the game and typically play four to six hours a week. However, as I get older, the five knee operations and Achilles’s tendon surgery start to take their toll, my back takes more time to recover since I have Stenosis, herniated disks, spondylolisthesis (don’t ask) and other “old fart” ailments that come with the territory. So, in September of 2020, when I was barely making it through matches due to excruciating sciatica pain that started at my left hip and went down my entire left leg, I assumed it was just more of the same and that I needed to just “suck it up.” However, the pain was bad enough that I started going to a chiropractor for the sciatica, but saw very little improvement. One day in November, when the pain was so severe that I couldn’t get out of the car without assistance, I went to my orthopedic surgeon to tell him it’s just another one of those ortho issues and to ask for something to help with the pain. The orthopedic surgeon ordered x-rays and an MRI. Pretty normal stuff. One Saturday right before Thanksgiving, I had my non-eventful MRI and was proud I didn’t get too claustrophobic, another problem that came with age. I assumed I would get my results in a week and be prescribed steroids, injections, and maybe some physical therapy. The last thought in my mind was a more serious ailment unrelated to my back problems. The following Monday around noon, my orthopedic doctor called and empty of emotion or empathy said, “You have a very large lesion on your Iliac bone which is suspicious for cancer that has metastasized from somewhere.” Such a cold and informal way to be told you now have a terminal illness and the impact of his news caused me to cry out for my wife Donna and wail for a bit (or was it hours?). The doctor then suggested I contact an oncologist immediately to figure out what’s going on. His invoice came a few days later and he was done with me. I haven’t heard from him since. We will talk about bedside manner later.
After crying buckets of tears, getting consoled by my wife Donna, and giving the news to my three daughters, Brittany, Amanda, and Taylor, I immediately began the process of finding the right oncologist. My primary physician recommended someone who I saw the next day, because time was of the essence. I wanted to get the cancer out of my body immediately and be cured. I wanted my old life back. Unfortunately, I wasn’t thrilled with the doctor or the hospital. There was no connection with the person who was going to get me through this. Thankfully Brittany, who is a pediatrician at a very well-respected practice close to where I live, used her connections to get me seen by the head of Oncology at the Chicago NW suburb hospital where she has privileges. I saw him a few days later and he ordered several
CT and MRI scans, blood tests and a bone biopsy to ascertain the origin of this cancer. In 2007, I battled prostate cancer successfully and was cured, but for some reason I assumed this cancer was spreading from the long-gone prostate. A few days later, I got all the tests done and my new best friend, my oncologist, informed me that I had clear cell Renal Cell Carcinoma (RCC) that had metastasized to my bone in several places on my spine from head to lower back. On my right kidney, I had a small 4 cm tumor that was the culprit. It is ironic that I have absolutely no pain or discomfort with this cancerous kidney. All kidney functions and blood tests are normal. He also told me in a calming way that there was no cure for what I had, and the course of action was “palliative.” I had always thought of that word as the equivalent of hospice—in other words, what I heard was I was dying and only had months, weeks, days to live. Now let’s be clear, he never said this, but it’s what my mind processed regardless of what he said. I’m certain I’m not the only one that felt that way when given the news that they have STAGE IV Cancer.
The next week or so was a complete blur to me but once the tests were completed, my oncologist suggested immunotherapy. I’d never heard of immunotherapy, but came to understand that, unlike chemotherapy, which kills both cancer cells and normal cells, immunotherapy enhances your existing immune system to attack cancer cells and help locate the cancer cells so they can be killed. It’s a relatively new treatment and an even newer treatment for Renal Cell Carcinoma. Opdivo/Yervoy was the recommended immunotherapy treatment. I had never heard of these two drugs, but I now see them both splashed on television ads and on the first few pages of People magazine every week. The treatment was systemic—i.e., treating all the cancer in my body versus surgery to the kidney and elsewhere. The immunotherapy was given intravenously every month where I spend a half day at the hospital’s “Cancer Center.” (They have got to find a better name. What about “The Get-Well Center.”) One of the hardest things for me to deal with was understanding that, unlike my prostate, which I’d gotten out of my body in record time, the cancerous kidney wasn’t being immediately removed. I would have to learn to live with the cancer in my body, and with every pain in my back that felt like the cancer calling out, “I’m going to get you.” The best medical advice today was that, because the cancer had spread and was now Stage IV, the ideal treatment was to treat the entire cancer. The goal of immunotherapy is to either have the cancer go away, get smaller, or become stable. Chemotherapy for kidney cancer has never proven to be very successful in terms of longevity, while Immunotherapy was showing signs of better results. With chemotherapy, the survival rate for my type of cancer is less than 20 percent after five years, while immunotherapy is showing better results—even though the treatment is so new for kidney cancer and long-term studies haven’t been done. 15 years ago, the survival rate for my cancer was one year, so progress has been made with treatments. Immunotherapy can also cause side effects including severe fatigue, colitis, pneumonia, and hypothyroidism. In rare circumstances, it can cause death. (For your reading pleasure of these side effects, just go to the Opdivo/Yervoy websites.) I also had to deal with my severe back pain from the Iliac lesion. To alleviate the pain, I had 15 straight days of radiation to shrink the cancer. The radiation is painless, but I became very nauseous after a few days. Never fear, a Zofran pill each day made that go away. However, the radiation did cause me even greater fatigue; between that and the immunotherapy, I was confined to the couch like a corpse. I spent most of the day engrossed in self-pity, my anxiety and pain at an all-time high. I have always told my children that anxiety is worse than reality, but I wasn’t listening to my own advice. My hip pain didn’t go away during the radiation, but amazingly, in the weeks after the radiation finished, my pain diminished from a 9 to a 7, then to a 5, and now a 3. Radiation did the trick on my hip bone
It’s now September 2021, and I am tolerating the treatments very well, and my last two three-month scans have shown stability with no growth—which suggests the current treatment is succeeding. My thyroid stopped working (but some studies suggest this indicates the treatments are effective and is a good sign), I developed severe fatigue from both the immunotherapy and the radiation, as well as a rash that caused temporary itching, which drove my wife crazy. I have nowhere near the stamina I had before—exercise is draining, naps are the norm. And while I now can play tennis again without too much pain, my game isn’t the same due to not having the stamina I used to have. Nevertheless, my tennis partners put up with me, provided I continue to display my self-deprecating on-court tennis humor. I no longer play three times a week. Instead, I try to play a few hours a month and need to take several breaks due to the stamina issues. I’m also jogging (or is it fast walking?) two to three miles on my treadmill every other day.
While I’d love to lose the 15 pounds, I gained throughout the COVID pandemic, my medical team is thrilled that I haven’t—losing weight is typically not a good sign for people with cancer. I’m angry at the pants that are too small for me, and my two pack abs are now 1.5 pack. What I do know from my research is that this cancer can learn how to combat the treatments and there is often spread, but my doctor has reiterated that there are always alternative options and new ones are being approved every few months. While I hoped the cancer would go away, it’s better than what could have and can still happen.
My next set of scans is in November, which will be my one year “cancerversary.” Assuming they are stable, I’m going to celebrate with my family. Even if the results are not what we hope, I’ll still find some reason to be with my family. They have been my rock from day one, and we will find any reason to celebrate. I feel very fortunate to have the right doctors and am at the right hospital taking advantage of everything they have to offer me.
Writing is cathartic to me and hopefully not too boring for you. I love to journal what I am feeling and how the lessons I learn can be helpful to others. The rest of this diatribe is focused on the lessons learned from my journey. I know most of this is not rocket science, but I hope cancer warriors and their loved ones can learn from my experience in battling this disease. I am so lucky to be surrounded by a great family and support system and to be financially secure enough to afford the treatments that work best for me. Cancer treatment is extremely expensive, and it’s a huge problem that so many people who are in a less privileged position than me must experience the financial toxicity of cancer treatment without adequate resources. My heart goes out to them, and I will share ideas and resources for them later in this article.
I hope to add on to this article in the years ahead (note the optimism) as I learn more about how to best deal with this disease and more about myself.
I have learned more about myself in the past ten months than I learned in my first sixty-one 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 this disease the past ten months. I share in the hopes that you will learn from me and then share with others with your own thoughts and suggestions.
Trust Me – The Stages of Dealing with Cancer Are Real
I had always heard about the stages of dealing of cancer and found that they are indeed true as I went through them one by one. When I received the first phone call from the orthopedic surgeon giving me the dire news, I was in complete shock and denial (stage 1). I refused to believe he was referring to me when he said, “consult with an oncologist ASAP.” That shock quickly turned to anger (stage 2). I’m happy I never asked, “why me?” because I could have just as easily asked “why not me?” But I was so angry that this was happening to me just as I’m about to retire and enjoy my next forty years of life. Yes, you heard it correctly—I always asked my financial advisor to plan out until I was 100 years old, confident that I would easily surpass that, especially since I had beaten cancer once before. I then seamlessly moved into the Bargaining stage (stage 3). “God – give me twenty more years and I’ll be a better person,” I softly said at least 50 times a day. “At least give me ten more years.” “How about at least five?” I then went into the worst stage of cancer, sadness, and depression (stage 4). I was certain I wasn’t going to see my grandson Aidan Joel turn four. I thought I’d never take another vacation again. I would never see my beloved Cleveland Browns compete for an NFL Championship, my appetite would disappear, and my last piece of Lou Malnatis deep dish pizza was days away… the list goes on. While I have always suffered from mild anxiety issues, they never required treatment, and I always thought I had it under control. Not with this news. I was sad, depressed, didn’t want to do anything, sought pity, and was not a very fun person to be around. I thank my entire family for putting up with my pity party stage. Sometime in March, I woke up one day and transitioned into the acceptance stage (stage 5). I accepted the challenge to be a Warrior and fight this disease and started getting optimistic that I had some good moments left in me. While I continue to be in the “let’s beat the shit out of this cancer” stage, I would be lying if I didn’t tell you that I still have anxiety, sadness, and moments of loneliness… but they don’t rule me now and for that I am thankful.
I am on an amazing private Facebook group for Stage IV RCC Warriors, and I often read about their angst with people hearing they have Stage IV and looking at them like they are going to die very soon. At least with respect to me, I can’t blame people for feeling that way because that was the aura I gave off. I assumed I was going to die in a short time, so others thought the same way and treated me accordingly. Once I began to understand that stage IV cancer just means the cancer has spread, and that stage IV isn’t necessarily a death sentence, people stopped treating me like I was a goner. I believe it is the patient who drives how people perceive them, and that once we get to the acceptance stage, others look at us the same way. We do have a lot of control over how people look at us and that is the first lesson I share with you. If you think you are going to die, people will act as if you are going to die. If you are ready to accept the disease and fight like hell, people won’t be planning their last visits to see you, and you’ll find that you probably have several good moments ahead of you.
Surprise, My Fear of Death Phobia Is Gone
From a very early age, I have had a phobia with death. When I was ten, I kept saying I wouldn’t worry about death until I was forty. When I turned forty, I said I wouldn’t worry about death until I was fifty. It didn’t help much, but it bought me relief from my death anxiety by helping me to stop focusing on it. I often had trouble sleeping because I kept thinking about no longer living. I’m certain my mother’s cancer and early death increased my anxiety, but I can’t blame this on her. I just love life so much and don’t want it to end. I’m happy vacationing, playing tennis, watching football, reading a book, or having a nice meal. I find enjoyment in almost everything I do. Every time I got on a plane (three million plus miles), I was so certain I was going to die that I had my own ritual—I would say hello to the cockpit crew, count to three hundred (slowly) once the plane took off knowing the first three minutes of flight were the most dangerous, be nice to everyone on the plane, and thank all the crew upon departure. I’ve done this on every flight I’ve ever taken. I have lost countless hours of life thinking about death. My kids were teenagers before Donna pushed me to get my will, trust, and living will completed.
You would think once I got this diagnosis, my fear of death would increase materially, that I would be consumed by it. And this is indeed what happened… at first. But once I got to the acceptance stage, my fear of death surprisingly decreased. I no longer lose sleep over my fear of death. I can talk and write about my death, which I was never able to do before. I have some strange and unexplained peace of mind when it comes to death. I can focus on the present, on not wasting any time. I now spend my time planning what I’m going to do for fun. More than ever before, I appreciate that the minute you are born, the process of dying begins, and the only difference between me and the healthy guy next door is that I have some obstacles to get over more than he does. I can’t control my death, but I can control what I do with my life. That is my focus, and it feels quite cathartic. It was an epiphany for me. I hope this continues and I also hope I can find someone to convince me that once I die, I’ll be with all my loved ones in an even better place than exists today. Who knows?
Understand That Statistics Are Just Numbers
The first task most cancer survivors and loved ones do once they get the bad news is internet searches on life expectancy with the form of cancer they have. Our medical teams tell us not to do it—and for good reason, as it’s hard to sift through the search results and know what’s reliable and valid—but we can’t help ourselves. I know I looked at all the numbers and my family did as well. We didn’t talk a lot about it because it’s scary, but we all were aware. My research indicated that there was a twenty percent five-year survival rate for people with my type of cancer. On the one hand, that sucks. On the other hand, maybe I can be that two out of ten. Well, it still sucks. But, when you do further research, you realize that these numbers reflect earlier treatments and not some of the newer combinations of treatment, including immunotherapy, that exist. Also, the numbers do not look at the individual and their current health, will to live, support network, etc. At least in my unscientific opinion, these are all important to look at in determining prognosis.
In 1965, my mother was diagnosed with breast cancer that had, unfortunately, spread. Many years later, I reviewed her medical file and noted that the doctors gave her six months to live. I was seven years old at the time of her diagnosis. She lived until 1980. I’m glad she didn’t review that file. I’m certain it was based on statistics. I am blessed I was 21 when she died and had so many great experiences with her during that time. The point is that stats are just numbers and numbers do not necessarily tell the complete story. They can’t measure so many factors that are at play with this disease and even if my chances of living five years are statistically twenty percent, I remain optimistic that I have a good chance to live more than five years. I will not allow numbers to dictate my life. This is a lesson I implore all of you listen to. (More about my mother later.)
Selecting the Right Medical Team Is Critical
One of the most important decisions people with cancer face is finding the right medical team to lead them through either cure (for many cancers) or durable remission. Durable remission is an interesting word and one I had trouble dealing with when I first heard it. It’s something short of cure but better than, “Death is knocking at the door and won’t stop knocking.” Does “durable” mean six months or twenty years? Like most things in life, the answer is it could be one or the other. There is no cure for my cancer, but I could have no evidence of disease “NED”—another term I learned (great but small percentage), decrease in tumors/lesions (good), stability (okay), or growth and additional tumors/lesions (not good). And, when you get your scans every three months, the results can and do change and you are always dealing with another term I learned to understand: scanxiety! It’s real and can have a huge impact on your mental health. Around a week before each scan, I get anxious and then the day of the scan that anxiety increases. The most agonizing part is waiting for the results. This is what I refer to as “peak scanxiety.” It is hard to concentrate on anything other than waiting for your cell phone to ring from your doctor or checking MyChart every three minutes to see if the results are in. The best advice I can give you is to keep busy, pray (if that’s what you do), and try to have fun. It’s not easy in any event.
Back to the medical team. If you have Stage IV cancer, find specialists who have expertise with your specific cancer. Go outside of the city where you live if they don’t have the right experts. Look at hospitals like Mayo Clinic, Cleveland Clinic, MD Anderson, Northwestern, and others that have all the latest tools and research. Hospitals that do clinical trials are a plus. Personally, I like teaching hospitals since they seem to have the most up-to-date research and I like doctors (even if they are residents) on the floor all day and night. I was fortunate that Dr. Brittany Stern (feel that pride emitted) had connections that led
me to the head of oncology at the hospital where she worked, and I immediately felt great about my decision. My oncologist is smart, calm, empathetic, honest, disarming, transparent, and reassuring. He is optimistic but not unrealistic. He stressed that there were several options to consider. He was from the burbs of Chicago close to where I lived but had access to all the doctors in his affiliated network, including downtown Chicago. I see him every couple of months and see his assistants in the months in between. He truly is the captain of my ship. I tell anyone who has a complex illness where there will be differences of opinion on treatment, that it’s important to make certain one doctor (of your choice) is the captain of the ship and serves to reconcile different opinions. I have found it extremely helpful to have that person understand her role so she can help me if one specialty says one thing, and another says something else—which is common with challenging diseases. What I really like about my doctor is I would never want to play poker with him. I can’t read him because he never gets too high or too low. He is always calm and doesn’t get euphoric when I get good news and doesn’t act as if the sky is falling when the news isn’t so great. For me, this is perfect. Thank you, Dr. T.
When a doctor says “it’s your decision” after explaining the options, ask them what they would do if it was their child or spouse. They can’t not answer, and I have found it a great way to get doctors to tell me what they would do if they were in my position when they originally didn’t want to tell me what to do. It is my decision, yes, but I want the doctor to tell me what she would do.
Bedside manner is also critical. I don’t want one of the best if he is an asshole. I want a highly trained specialist who is also a nice person, who takes the time to treat me as a patient and not another receivable. There are so many great doctors out there. If you live in a more rural area where cancer specialists are rare, do research to find hospitals and doctors who have the expertise you need. If finances are an issue, there are organizations that help, including the hospitals. Don’t give up on getting the care you deserve. It will be rare where you must live with a jerk because he is the only person who can handle your issue. Physicians should take note: Studies have shown that doctors who have good bedside manner get sued less than doctors who have terrible bedside manner. When a doctor doesn’t act like a god, patients don’t expect them to be gods. Medicine and science are not necessarily do x then y and then z. Your medical team, working with you, must figure out what is best for you and there is often “trial and error” involved in this. They are human and will make mistakes. We patients understand and accept imperfection from our doctors provided they are honest and empathetic. Simple as that.
You also must be a self-advocate. Ask questions, challenge your doctor, seek second opinions 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 have someone in your family or group of select friends to be an advocate for you as well, in cases where you are not up to it.
Dealing with Insurance Companies
My father gave me lots of great advice, none better than telling me to never skimp on insurance—especially health insurance. I am thankful I have always had very good medical insurance that has not only handled my illnesses, but my wife’s ruptured brain aneurysm in 2007. He didn’t tell me, however, that there will be times in your life when the insurance companies act as barriers to getting the treatment for reasons that I (and I’m sure others) don’t understand. I have always wondered how a health insurer can practice medicine without a medical degree—if my doctor orders a test or a treatment, I don’t want my insurance company refusing to approve. That irks me more than anything. And, with cancer care, the treatments are often very expensive. Obviously, this is a complex problem for which I have no simple answers, but here is some basic guidance: First, when seeking insurance approval, use a two-pronged approach. Have your medical team seek approval while you make calls as well. Second, if they refuse, ask your medical team to appeal, and you should do the same. If all else fails, many of the pharma companies providing the very expensive treatments will provide medicines for free or greatly discounted rates if need is shown. Don’t let the insurance companies dictate the medical treatment you should have.
Dealing With Side Effects
There are so many potential side effects associated with my immunotherapy. Some can cause death (rare), some can create significant issues (colitis, pneumonia, organ failures), and some are a pain to deal with, but ultimately manageable. During both my immunotherapy treatments and radiation I experienced extreme fatigue (which I continue to have), my thyroid stopped functioning, and I developed a rash that wouldn’t go away. For the fatigue, I rest when needed, but I also push myself to do the things I enjoyed doing before treatment because I don’t want to sit in bed all day. I’ll be taking Synthroid for my thyroid for the rest of my life. For my rash—well, I itch a lot!!! Also, every med that does one good thing to your body can adversely impact other things. I was given a nonsteroidal anti-inflammatory to help with my pain, but it caused high blood pressure. They took me off the anti-inflammatory and my blood pressure is now under control, but I have more pain. The key is to inform your medical team whenever something changes in your body. They need to be informed and help keep all the meds working in concert.
Palliative Care is Not Hospice
I still shutter every time I think about the first time I saw the phrase “palliative care” in my file. I thought it was the equivalent of hospice, which I knew wasn’t something I wanted to see in my chart. I wish someone had explained to me exactly what palliative care is—and what it isn’t—before I saw it in my file.
Palliative care is focused on providing relief from the symptoms and stress of the illness. The goal is to improve quality of life for both the patient and their family. Palliative care is provided by a specially trained team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide an extra layer of support. Palliative care is based on the needs of the patient, not on the patient’s prognosis. It is appropriate at any age and at any stage in a serious illness, and it can be provided along with curative treatment. Palliative care focuses on quality of life and is broader than the treatment your doctor recommends.
My strong recommendation for anyone dealing with a Stage IV cancer is to make certain you take advantage of your palliative care team. I have received so many benefits from the social workers, nurses, and physician’s assistants who address issues beyond treatment of the disease.
The lesson learned is that palliative care does not mean you are on death’s door. It is not the same as hospice or “end of life” care. What I have come to understand through palliative care is that, while there is no cure for people like me who have Stage IV RCC, there are opportunities to live a quality life for months if not years.
Learn to Live in the Moment and Be Mindful
I am a Type A person on steroids. My mother used to say I should have been a poster child for Ritalin. I was never diagnosed with ADHD, but I’m certain I have it. My mind is always running 100 miles per hour, and I work best when I am multi-tasking several different challenges. I am a solution finder who is only satisfied when I get to an answer that works. This has always worked for me, but I’m certain it irritates my family, my work teams, and some of my friends. I am also a visionary (forest versus tree thinker), always looking into the future and figuring out how to get where I want to get to. Getting this diagnosis is challenging for people like me because we spend inordinate amounts of time looking into the future and thinking about getting sicker, being bedridden and dying. We can’t find a solution to our terminal illness, and that is bothersome. I knew I couldn’t get into the acceptance stage of my disease until I figured out how to chill out a bit, to become less strategic and more day to day.
My palliative care team helped me focus on living in the moment. What am I going to do today versus where will I be two years from now? They also helped me with being more mindful, which is the basic human 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 finding beauty and enjoyment in it. Blue skies, deer in the front yard, deep dish pizza with friends, watching football, playing tennis, and spending time with my family are all examples of things I have always enjoyed, but I enjoy it differently today than I did before. I have a much greater appreciation for the little things that I may have overlooked in the past and am so very mindful of never taking any positive thing for granted. It has helped me so much in coping with this disease. I also dream but try not to focus on where I will be in two years. I’m looking at tactical happiness (short term) versus strategic happiness (longer term).
I’ll give an example of how I’m trying to emphasize tactical happiness. I lease cars. I get bored of cars after a few years and enjoy getting one every three to four years. My car lease expired a few months ago. Before appreciating mindfulness, all I could think about was why I should lease a car for three years when I won’t be around? Shouldn’t I just get a junker so it’s not a financial burden on my wife? Maybe we could settle on one car versus two. I later seriously contemplated finding a leased car my sons-in-law would like so they’d take it when I die. Living in the present helped me appreciate that I should get the leased car today that I want and can afford and enjoy it today and not worry about tomorrow. No one knows what the future holds. Now, my wife may not be happy that we have my new leased car that she won’t drive, but I am! (By the way, she was the one who told me to get the car I now drive.)
Develop a Marathon Versus Sprint Attitude
To best deal with this disease, you must learn patience and develop a marathon-versus-sprint perspective. Those who know me know that patience is not exactly a virtue I possess. But one of the first pieces of advice my oncologist gave was to remember that dealing with cancer is a marathon, not a sprint. Now, I am very much a “sprint” type of guy—I want everything handled quickly and efficiently. I measure in terms of “closure” and then move on to the next task. I am that way at work, home, or play. I don’t do anything slowly. I didn’t want to take my doctor’s advice seriously— “It’s a marathon, not a sprint” might work for others, but not for me. Or so I thought. I realized over time that I had to adjust my thinking in dealing with this disease. There was no 100-yard sprint to the finish line, no closure like I had had with my prostate cancer. This is a war, and the goal is to win several battles and keep the war going for years. Like any marathon, there would be ups and downs and moments when you want to give up. But, like the best marathon runners, I would need to fight hard to get past the parts of the race where I just wanted to quit, I’d have to find the strength to move to the next mile. I have had my share of ups and downs and am certain they will continue, but 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 on Facebook Where You Can Learn from, Comfort, and Share with Each Other
I was a very late joiner to Facebook. The first time I got on Facebook was in early 2020. I was hesitant to join Facebook because I was fearful I would get addicted to it and spend all day and night reading posts and looking for old friends. Prior to my diagnosis, I got a lot of joy reconnecting with high school friends and former peers at my earlier jobs and seeing my former employees on a more personal side. But I was not glued to my computer every minute of every day. That changed once I got my diagnosis and, for me, the addiction is a good one. To this day, I haven’t announced my illness on my general page. I may sometime but not now. However, I found the most incredible Facebook private group: Stage IV Renal Cell Carcinoma, a group where everyone either has my disease or is a loved one of someone who does. To say it has been a tremendous experience would be an understatement. I am addicted to it. It is a place to share, to learn from and comfort each other. It’s a place where we can safely ask questions of others and get their perspective. It’s a place where we can vent, complain, and bitch and people don’t judge. I also have found that it is cathartic for me to write on this Facebook group and share my stories and perspectives. While folks in the group thank me, it is I who should thank them since sharing gives me strength and makes me feel good. I have so many Stage IV RCC friends in the group who I will probably never meet offline, but they are so important to me, and I consider them part of my extended family. Every positive scan result, blood test, NED report, and other good news is something we all savor and
hope it comes our way. Every piece of bad news, including someone getting their Angel Wings, gives us moment to pause, feel sad, and then thank God we are alive and fighting. While this Facebook group is the one most pertinent to me, there are so many other online support groups for cancer, and I urge those of you who have the disease to find a resource that’s as beneficial to you as my Facebook group is to me.
Dealing With the Financial Toxicity of Cancer
I am privileged to be in a financial situation that isn’t adversely affected by the cancer I have. I have great health insurance (thanks Dad) that covers the great majority of my costs even though the immunotherapy expenses are astronomically high. I recently retired and have a nest egg that allows my wife and I to live comfortably. We are fortunate. However, there are so many people who are not only dealing with cancer, but the costs of dealing with cancer. For so many people, financial toxicity is real—there are those who aren’t insured, who are underinsured, or who simply can’t afford the many expenses that arise from cancer even with good health insurance. Often, their entire lives are turned upside down and they are not positioned to handle it. 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 a life with dignity and hope.
New Day Foundation (foundationforfamilies.org) is an incredible non-profit based in Michigan. They help families address the financial issues of handling cancer. This includes both the costs of health care but also the other costs of dealing with cancer—food, housing, work, financial assistance. I know there are many great organizations in the United States that are dedicated to this mission, and we need to better educate families what they are and what they do.
Focus On Experiences Versus Material Objects
For most of my life, I enjoyed material things. I love watches (I have a great Movado collection), cars, cufflinks, wallets, pens… the list goes on. However, even before cancer, the “wow” factor of having new objects soon fades away. With cancer, this is even more true. I now value experiences so much more than material objects. One week after my diagnosis, I planned a trip with my entire family to Marco Island, Florida, nine months in the future. At the time, I assumed I’d be too frail to go or enjoy or even worse, dead (I was in the anger stage at that time). But it’s nine months later, we just returned from that trip, and I’m happy to say it was one of our best trips ever. We had so much fun on the beach, walking, playing in the water, going to restaurants, laughing, and just enjoying the experience. What I love about planning trips is the anticipation before the trip, the trip itself, and the memories you have after the trip. I know my family treasures these memories as much as I do. As I fight this disease, I have asked my family to forget the material things on my birthday and holidays and focus more on experiences. Donna is taking me to Vegas for my birthday, I’m going golfing and deep-sea fishing with friends in Naples, and we are planning other trips. Those who know me know I am no fisherman but being on the water with friends and some beers seems like something I should be doing. Donna laughs at the idea of me with a fishing rod in my hand asking someone to touch the live bait. Dreaming about vacations gives me hope and hope gives me the desire to fight this disease. And, we have now started making Shutterfly books of every trip we take.
I have also started the process of creating the “bucket list.” I don’t know how much time I have but I am certain I want to enjoy every minute of it. I am a sports fanatic and have been to NBA Finals games, NHL Stanley Cup Finals, MLB World Series, NFL playoff games, several US Open Tennis matches, and the Ryder Cup. One event I have never experienced is the Super Bowl. With my wife’s consent (thanks Donna), I found a friend (David) who is as crazy as me who wants to see a Super Bowl game and we have purchased an inclusive package to go to the 2022 Super Bowl in Los Angeles. If there is a year when my Browns could be in the mix, it’s this year, so with a lot of luck, I may be seeing the Browns play. In any event, I can’t wait to go and hope I’m healthy in February to make the trip. My bucket list also includes seeing more grandchildren and watching them grow, being a better person than I was yesterday, and getting this article published somewhere. Not the most exciting list but it does serve the purpose.
Having a Strong Support Network Is Critical
I don’t know where I’d be without having the incredible support network that I have. First, my wife Donna has been amazing. I am indebted to her forever. She has put up with my moods, catered to my needs (especially when not feeling well), and is always optimistic without being a Pollyanna regarding my prognosis. She pushes me when I need to be pushed and caters to me when I need to rest. I can’t thank her enough for being there for me 24/7. Donna had her own crises to deal with in 2007 when she had a ruptured brain aneurysm on Christmas Eve and spent several weeks in the intensive care and almost died. Thankfully, she pulled through. I raise this because I have had the misfortune of being both the caregiver (for Donna) and now the sick one. I can tell you first-hand that while it’s no walk in the park being the patient, being the caregiver for someone you love is equally if not more difficult. The caregiver must deal with all of this, but with little control over the outcome. They often feel powerless, and we don’t take enough time to acknowledge their role and how difficult it is. I encourage everyone in the caregiver role to focus on yourself and make certain you take the time to enjoy things that recharge you. We patients understand and want you best positioned to help us. Thank you, Donna, for everything. As I tell you privately, and now publicly, our marriage is stronger than it has ever been, and I love you dearly.
Next up are my three daughters, who I adore: Brittany, Amanda, and Taylor. We have always had a rather insular nuclear family, enjoying spending time with family above and beyond anyone else and during this time, they have been such a joy and help to me. They have always been here for me, and I am so lucky to have them all live close by. They also don’t let me get away with my self-deprecating cancer jokes and self-pity. I love them so much and I am so satisfied that they have grown up into wonderful people. Brittany’s husband Ben and Amanda’s husband Jason are also an incredible part of Team Stern. It’s nice to have some testosterone in my family and these guys are great. They love sports, put up with our quirky family, and are such decent people. And what can I say about my grandson Aidan Joel Moy? He’s now three-and-a-half and he is precious. I love every minute I get to spend with him. Being a grandparent to Aidan is one of the primary reasons I’m going to fight. I want to see him grown, and I want to see my
future grandchildren grow and become part of our family. Next month, Amanda and Jason are having a second boy, Oliver. I can’t wait. My dad and his wife, Nora, have also been there for me along with my brother Eric and his family. My cousins have been comforting to me and supported my family. To me, family is everything and they have never let me down. Thank you all!
In addition to family, my support network includes friends from all walks of my life including my high school friends in Cleveland, work friends, and neighborhood friends. I should also include my tennis friends as well. I can’t thank everyone enough for being there for me during good and bad times. A few weeks after my diagnosis, my very good friend Sarah (whose wedding I officiated a few years ago) and Brittany put together a video from friends and celebrities’ that makes me cry and laugh every time I see it. I can’t believe I have Penn & Teller, Jon Lovitz, several Bears and Browns players, stars from The Sopranos and others part of this video montage. And these friends keep on giving. They email me, text me, call me but never suffocate me. They understand when I don’t want to talk but are there when I need to. And, while I have always been great friends with my best buddy, Jim, our relationship has really become a lot stronger lately and for that I am thankful. He has been an outstanding friend and I’m so glad we are closer now than we have been in many years. I would be remiss not to mention David, who is going to the Super Bowl with me in February 2022. The guy is English and prefers soccer, but he is going with me because of our friendship and his understanding that this is on my bucket list. I also have so many work friends who have been so giving to me. Thank you to all of you. You know who you are. Finally, the Facebook site I referred to earlier are my virtual friends who share a common Stage IV RCC bond. They are truly Warriors.
It’s not quantity of friends and family. Quality of your support network is of paramount importance. Having a few people who have your back is critical in battling this disease. If you don’t have that network, get it. It is a material factor in helping us live longer and better… this is true for healthy people as well.
It’s also important to give back. I love mentoring others who are going through this disease or helping advocates understand how critical their role is. I am an Imerman Angel where I help people who are diagnosed with a similar disease in a mentor role. See: https://imermanangels.org/. I give of myself on the Stage IV RCC Facebook group daily. Now, it’s not completely altruistic on my part because it gives my life meaning and makes me feel good about myself. It’s the proverbial win-win.
The Right Attitude is Critical in Fighting this Disease
Having the right attitude is critical to successfully fighting this disease or any other disease. Optimism, sense of humor (even a warped one like mine) and positive outlook are all important along with the medical treatments provided. Be a warrior and don’t give up hope. People with positive attitudes are more likely to have a longer and more quality life than those who can’t see the blue sky when’s its right in front of their eyes. This has been proven for decades. Now, don’t get me wrong—there are times when I am still scared to death and pessimistic about my future, but those times are drowned out by my overall healthy and positive attitude. If you can’t get there once you go through the stages of dealing with this
disease, please get help from your family and friend or your medical team, including the use of social workers and psychologists. It’s one of the best pieces of advice I can give you. It’s never too late to find the courage to be optimistic and have hope.
For those who have a certain faith that gives you strength, tap into it and never give up on that faith. Throughout my journey, many people have sent me prayers and told me to have faith in God. On occasion, they reference the Bible and/or Jesus in their thoughts. I have a very strong belief in God, but I haven’t found religion to be helpful to me. However, I will take prayers from Jews, Christians, Muslims, Hindus, and others who want me to be strong. Don’t ever be offended when someone offers you a particular prayer citing a religion you don’t adhere to. It’s the gesture that counts, so just say “thank you!” Sometimes, I am very jealous of people who believe there is a better place after our time on Earth and their religion is their rock. I hope they are right, but I just haven’t tapped into one religion. I am more fact-based than I’d like to be. My view is my God knows good from bad people and based on that, I hope and pray I’m in a decent position for ending up upstairs rather than downstairs, assuming both exist. I try to live by the “Platinum Rule” rather than the “Golden Rule.” The difference between the two is worth noting. The Golden Rule says you should treat people as you want them to treat you. Sounds good at first, but it makes a fallacious assumption, because not all people want to be treated like you do. The Platinum Rule suggests we take the time to treat people like they want to be treated, not how we want to be treated. That’s trickier and suggests we make an investment with the people we care about to see what makes them tick. I aspire to follow the Platinum Rule and figure that’s my best path forward assuming there is life after death.
Teach Your Children Well: The Lessons My Mother Taught Me
Thanks, Mom, for all the lessons you taught me that I didn’t appreciate until years after your death. In 1965, when I was 7 years old, my mother was diagnosed with breast cancer. It had already spread to several places and in her medical notes at the time, the doctors gave her no more than six months. At the time, the combination of surgery, radiation, and chemotherapy was very new, and my mom was one of the first in Cleveland to have this combination to treat her cancer. Six months passed and over the next 15 years, her cancer spread to so many places I couldn’t name them all, but she kept fighting and showing a level of courage that can’t be overstated. She had surgeries almost every other year and was under various forms of treatment, including chemo, throughout her life. Her arms were always black and blue from the repeated needles, she had a wig, and lost lots of weight, but she was still my mom. I never heard her say “why me?” I never remember her not having the time to take us to school and extracurricular activities, I never remember her not celebrating the holidays and birthdays. She always made dinner for us and had a smile on her face, but also a level of determination to live and see her three boys grow up to become young men. There was no other alternative for her. She was going to see her boys grow up and become young men. Mom finally succumbed to cancer on May 25, 1980, after her Warrior-like battle. Except for the last few months of her life, she had a will to live and a passion for life. I am truly blessed that I was 21 instead of 7 and had all those years of memories that continue to shine a huge light on her. She was truly amazing and while biased, others in the family, friends and the medical team all said the very same thing about my mother. There is no one in my lifetime that constantly showed the courage and determination to live a quality and fulfilling life, under extremely challenging circumstances, then my mother. She found joy, happiness, and love every day. She spent the entire time battling cancer prioritizing her children over her disease. She never complained or sought sympathy. She was one tough person with a spirit second to none. I didn’t appreciate this to the extent I do now because I didn’t have to. I just took it for granted. But now that I am facing this battle, all the memories of her are coming back and her incredible legacy lives inside of me and creates a fire in my belly. I want to instill that same courage and love of life to my children, grandchildren, and friends. I hope that a little piece of me remains in their lives way after I’m not around, just like my mother left her legacy on me and so many others. I don’t believe I would be this way but for my mother and for that, I am thankful. When people ask me to name a hero, my mother always comes first. She was truly a one of a kind.
On the 10th anniversary of my mother’s death, my second child, Amanda, was born. So, every May 25th there is both some sadness and joy in my heart. And then Amanda married Jason, who was born on June 6, my mother’s birthday. That’s a good day as well.
Addressing Your Legacy
Legacy has always been important to me. It’s a foundation for everything I do. For years, I have held the position that I want people to be better for meeting me than they were before we met. That goes for my friends, fellow workers, and family. There is nothing more important to me than having my children learn from what I do well and what I could have done better. And Donna and I are so proud of all three daughters and our two sons-in-law. We did our job. Our daughters are all doing great. They have good values, integrity, respect, and empathy. They work hard at work and at home. They are smart, all have terrific jobs, and make us proud every day. It’s also a thrill when people who used to work with me quote some of the teachings I taught them thirty years before. That’s legacy as well.
With this diagnosis, legacy becomes even more important to me. I want people to have wonderful memories of me and be better because of it. I want them to do something in their lives that is directly or indirectly attributable to something I did or said. I want people to see that I am dealing with this cancer in a mature, pragmatic way and enjoyed many days, months, and maybe years with stage IV cancer. If I don’t last that long, I want them to know I left this place with dignity and courage. I know not everyone feels this way but it’s the way I feel. When my brother Mitchell died in 2001 of a brain aneurysm, I was one of several that spoke at his memorial. I don’t have the notes from that eulogy, but I do remember the gist of it. “Take something from my brother that touched you and make it part of your life. It could have been his smile, his unique humor, his warm personality—it can be anything. 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. If that happens, when my life ends, I continue to make a positive impact on the lives of others.
Life is Precious and Way Too Short
At Accenture, where I spent 15 years managing a large legal group in the Americas, I was honored to be asked to teach leadership to high-trajectory future Accenture global leaders. Part of this was developing a “Teachable Point of View” where you could teach leaders about something you were adept at. I did my TPOV on managing employees. The last slide of the presentation was titled, “Life is Very Precious and Way Too Short.” The message was to enjoy every minute of your life. I have been saying that for more than 25 years, and in a strange way it seems fortuitous that those words take on the importance they do post cancer diagnosis. It’s the message I would implore all of you, both heathy and not, to live and breathe. We don’t control how long we will live, but we do control what we are going to do with our lives. No one can wrest that control away from me and I plan on using that control to live my life the way I am doing.
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 I am confronted with now. 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.” That one quote, from a young man with a terminal illness, was an epiphany for me and I think about it daily.
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. I will be a better person and more accepting of others. I will seek the good in people rather than looking for warts. I will share my message of optimism with whomever will listen. I will be thankful every day for the enjoyment I have in life. I will make memories that will be my legacy. I will dream and aspire to make my dreams come true. I am more content with myself than I have ever been. That is my silver lining with this horrible disease. While it may seem to be an oxymoron, I HAVE STAGE IV RENAL CELL CARCINOMA BUT I AM HAPPY AND CONTENT WITH MY LIFE.