Hope and Fear

This is a guest post by Joel Stern, member of the KCA’s Board of Directors, author of “My Journey With Stage IV Renal Cell Carcinoma”, and serves as a peer mentor with KCA partner Imerman Angels. Stern was diagnosed with kidney cancer in 2020.

HOPE

“Don’t lose hope. When the sun goes down, the stars come out” – Not Me

“Run when you can. Walk if you have to. Crawl if you must. But never give up.” – Dean Karnazes

As my wife Donna and I finish up buying Christmas presents for the family (mostly the grandkids, Aidan, Ollie, and Lucas), I am constantly reminded of the best gift of all – HOPE. While I have received amazing medical care and have Team Stern behind me, I don’t know if I’d be alive without the gift of hope. That gift was not in my line of sight when first diagnosed and for the first few months of this disease; but it has never left me since that time. There is no better ally in fighting this disease than hope.

The Oxford Dictionary defines hope as “to entertain expectations of something desired.” Hope embodies an emotional component beyond expectation that is an important part of human experience and a critical element in fighting stage IV RCC. Hope is the belief that a positive outcome lies ahead. This belief can be difficult to hold onto in the face of fighting our disease. Knowing how to create a sense of hope in your life can help you face stage IV RCC with strength, courage, purposefulness and confidence. While having stage IV RCC is a reminder of how precious life is, it is also a reminder that we have to have hope in order to enjoy the precious life we have left whether weeks, months, or years. Sorry – make that “years” dammit!

I appreciate that with this disease, the future is more tenuous than for healthy people, but it is hope that keeps us alive. It is hope that allows us to be pin cushions for our medical team. It is hope that keeps us going from treatment A to treatment B to treatment C. It is hope that has us fighting to hit that proverbial gopher back into the ground in the whack-a-mole game. It is hope that keeps us fighting when we get bad news. It is hope that helps us get up from the floor when we are knocked down. It is hope that allows us to run, walk and crawl. It is hope that can turn our depression and anxiety into anticipation and joy. Hope truly is critical not only for us but for our caregivers. They need to have hope as well and together, that hope is powerful.

There have been several studies that have studied hope and patients with cancer. In one study of 33 patients undergoing cancer treatment, it was found there are positive associations between hope and quality of life, social support, and spiritual and existential well-being. More importantly, the study showed negative associations between hope and symptom burden, psychological distress, and depression. Did anyone say: “HOPE IS CRITICAL!”

A positive attitude is an imperative in keeping hope. And while there are many minefields in front of us including future surgeries, scans, bloodwork, side effects, and possibly progression, keeping that positive attitude is critical. And, as I said before, doctors believe that a positive attitude is correlative to better outcomes. The best way I maintain a positive attitude is by setting reasonable and achievable goals. I call this my “bucket list” and I revise it often. While I have not achieved some of these items due to this disease, it is incredible how many I have achieved and I have a ton more in the future including: skydiving, car racing, more trips with the family, going to the NCAA basketball finals, and most importantly watching the grandkids grow older and older. If you are a patient who has not set goals or you are the caregiver of a patient who has not set goals, this is a problem but a problem with a solution. Make it a priority no matter where you are with this disease to create that bucket list.

As you goal set, understand that the goals can be big or small, expensive or no cost. They just need to be achievable with a bit of luck and perseverance. The process of setting goals is just the first part. Once you set those goals, appreciate there are obstacles you may have to overcome and there may be failures (trust me, I have had my share of failures). But, as you achieve these goals, celebrate in the grandest way possible including sharing with this Community. Hope also changes over time. If our condition changes one way or another, our definition of hope can also change (i.e., walk to run to crawl and then back to run), but we must define it and live by it.

FEAR

“You can be a victim of cancer, or a survivor of cancer. It’s a mindset.” – Dave Pelzer

“It’s about focusing on the fight and not the fright.” – Robin Roberts

Are any of you afraid in dealing with our disease either as a patient or caregiver? Does anyone have panic attacks or moments of severe anxiety? How are you with waiting for scan results or bloodwork? Get nervous when something in your body isn’t right even though it’s probably not related to cancer? Do you sometimes fear treatment side effects more than the cancer? If you answer yes to any or all of the above, you are perfectly NORMAL unfortunately. Most if not all of us face these fears more often than not.

What exactly is Fear? Great question. Fear is the negative emotion and anticipation we experience in the face of danger and threats. And let’s be honest here, what is more dangerous and threatening than our battle with stage IV RCC.

“Hope,” is the opposite of “fear” or at least a severe headwind into having hope as we deal with our disease. When we are afraid, our view of hope changes, at least temporarily. Fear can overtake all rational feelings and lead to anxiety, sadness, and depression or worse. Fear can stop us from trying new treatments even though the treatments may work and the side effects may be manageable. Fear can take us down a rabbit hole that stops us from having hope. Fear can paralyze us. As a result, fear is something we have to deal with if we want to stay hopeful.

How we individually deal with fear is very personal but I thought I’d share some thoughts on how to manage your fears.

1. Make certain you have the best medical team taking care of you and/or your Warrior. If not, find someone else. If you don’t have an RCC expert, consider finding one or at least ensuring your oncologist is consulting with an RCC expert. Oncology, like surgery, is a specialty. RCC expertise is a sub-specialty. Nothing more precious than your life. Get someone with deep expertise in your medical issues.

2. Get a second and/or third opinion to help you when there are decisions to be made with multiple options. If your primary oncologist has issues with that, your radar should be going up. Do not feel intimidated to get a second opinion no matter how much you love and respect your oncologist. Can you all say: “It’s my life!”

3. Use the Internet wisely. We all know that what is on the Internet is often wrong, old, or misleading and reading the Internet to figure out your health compounds fear rather than minimizing fear unless you are astute in ascertaining what are independent scientific studies versus opinion or biased reporting. Check the dates and authors of anything you do see on the Internet. Reading something from the National Institutes of Health on RCC in 2023 is very different from reading something from Rick Simpson on miracle cancer cures.

4. Be proactive in your medical care. Be your best advocate. Do not acquiesce to the doctors without asking, probing, challenging and asking again. Never feel intimidated to ask questions and get answers. Knowledge is power and the more you know about your health, the more in control you will be and the less fear you will have.

5. Practice the 30-minute a day rule. Acknowledge that you justifiably have fears but wait until a set 30-minute period each day and then wallow in self-pity. After the 30-minute period expires, if the fear comes up, focus yourself on waiting until the next day to wallow again. Try it…. It works!

6. Focus on the inspiring stories versus the stories where our Warriors have succumbed to this disease. Appreciate that when you are in a community solely made up of stage IV Warriors, you will see pain, suffering and death. Focus on all those who are living great lives every day. That number is much more than the “other” number.

7. Appreciate that fear is an emotion that serves no purpose except to ruin the day. Anxiety is the fuel that feeds fear. Extinguish it! Anxiety for tomorrow just ruins today. If you have scans or tests in two weeks, force yourself to not worry about it until a few days before. Positive thinking can win out if you try.

8. Get closer to positive people and move away from negative people in your life. Life is too short to deal with negative people.

9. If you have faith, focus on that faith. If you don’t, become more spiritual in any way that works. Try meditation or other practices that serve to relax you and give you a sense of calm.

10. Make the most of available services especially Palliative Care including mental health services. Remember, getting help with the mental side is a badge of strength not weakness. And, the more you think you don’t need help with the mental side, the more you probably need it. No matter how strong we think we are, we are fragile.

11. Recognize the triggers of fear and take steps to avoid them. If a trigger occurs, take deep breaths, meditate, or focus on something positive. When I have a trigger, I focus on my grandchildren and that always works.

12. Focus on what you control and not what you have no control over. You can’t control whether your cancer returns or you get bad results, but you can focus on things that make you feel good. For me, it’s being active in the kidney cancer community which includes hosting the monthly patient forums, advocating for more money for kidney cancer research, being on the board of both the KCA and the Judy Nicholson Kidney Cancer Foundation and being very active in this Community. Pick your passion and do it.

13. Do one thing a day that’s just for you. Be selfish and enjoy. Could be going to Starbucks for a cup of your favorite coffee, watching Real Housewives of (Name your city), or reading a great book.

14. Take advantage of resources that are available to you, including those from the Kidney Cancer Association, like the peer mentoring program or the Patient Navigator Program for one-on-one support. There are many and your hospital can help you find some as well.

15. Create the Bucket List that I implore all of you to create not because you are dying but because you are alive. We have an advantage over the healthy. We appreciate every day and don’t take life for granted. Document the things you want to do and start doing them. JUST DO IT!

16. Live in the moment – if you feel well now, block out everything else. No one knows what the future portends. Focus on today and enjoy the heck out of it.

17. Stay busy. One of the best ways to beat down fear is to take your mind off of it. Whether that’s going out, watching grandkids, binge watching your favorite tv show, or reading a great novel, stay busy. The hardest times for me especially when dealing with a new growth or waiting for scans is having “idle hands.” Pushing myself to do something is the best remedy.

18. Focus on the Fight and not the Fright!

Having recently celebrated my third year “cancerversary” with stage IV RCC, I appreciate how critical hope is in combating fear and helping me have the right attitude to fight this disease. I am a survivor of cancer fighting the good fight and plan to for many more years.