Written December 19, 2018
Dear Family & Friends,
In March of 2015, I was diagnosed with cancer in the digestive system. My initial doctors at Northwestern Hospital felt it was stage IV which has a 5 year 12% survival rate for my type of cancer. I was eventually treated at Mayo Clinic. While my Mayo Clinic doctors felt putting numbers on “stages” was unproductive, my CEA counts were 87 when I first arrived in Rochester (for those of you familiar with the cancer dialect, that is a scary high CEA count). After all of the initial tests, the surgeon at Northwestern told me if I didn’t go forward with some very serious surgeries immediately, I had about six months. It was a bizarre moment in my life.
Last week, my doctors at Mayo Clinic said those four beautiful words for the 4th checkup in a row: NO SIGNS OF CANCER. To date, I have avoided all surgery (which even Mayo Clinic thought was unlikely). The Mayo Clinic doctors won’t use the term cancer-free until after five years, but they are very optimistic based on my test results. As you might imagine, I am extremely grateful to the wonderful staff at Mayo Clinic.
On this journey, I’ve learned valuable lessons that might be useful for anyone with a new cancer diagnosis. The below thoughts were also edited by friends and family who went through their own battles; some of them now cancer-free…some of them no longer here. Feel free to share with a family member or friend if it would help. However, realize everyone is different and we all fight cancer in our own way. Take the below with a grain of salt and find your own lessons:
1. Acceptance is Critical: I went through weeks of denial hoping the doctors were mistaken even after two opinions. This was not a healthy coping strategy. At some point, I learned to accept the new reality. While I will not allow cancer to define who I am, it is now a part of my life. Accepting that there are certain things you can’t control brings a sense of peace. Realize all you can do is fight to the best of your ability and put one foot in front of the other and let what happens…happen. The main problem with denial is that the clock is ticking and you need to move as quickly as possible to increase your survival odds.
2. Try to Become Your Own Medical Advocate: My wife Kathryn and my extended family have been amazing in helping me in the darkest hours, you need help especially at the beginning. You may be overwhelmed with depression, stress, and work issues (I certainly was in the early stages). However, realize as you check out of some of your daily life routines in your battle to stay alive, it will put more pressure on your spouse to maintain his/her career or your children that will be struggling with the new reality. Try to get over the initial stress and depression to become your own advocate, but don’t be afraid to ask for help. The insurance and medical decisions that you need to make come very quickly. They require educated decisions on treatment risk/benefits and costs. Also, make sure you have a backup advocate in case a new treatment knocks you down.
3. Find a good hospital….fast: I actually wish I would have started this hospital research process before I was sick. I would strongly recommend finding a hospital that you would feel confident using for treatment and use this hospital for the basic tests and checkups (mammograms, colonoscopy, etc). Hopefully, you will always get good news from these tests, but if not, you will be in the system at a hospital that can provide treatment. If you have already received a cancer diagnosis and want state of the art treatment or a second opinion, I highly recommend Mayo Clinic. I have also heard amazing things about MD Anderson in Houston, TX. Both of these institutions are very involved in clinical trials and stay up to date with the latest technology and cancer-fighting strategies. However, you need to move quickly in this search as good doctors are in high demand and it is difficult to get on their calendars. The clock is ticking.
4. Keep doing the research….the good hospitals are learning every day: Develop a circle of friends and advisors that have battled cancer or have a scientific background to help in your research. You should also look into admissions into one of the myriads of clinical trials that are ongoing all over the country. There are breakthroughs coming in cancer treatments from technology to new procedures; the research is very exciting. Discuss options with your insurance company and target the very best institutions where these trials are being conducted. Research the objectives of the trial and study up on any experimental results that have been published about that particular treatment. Get as much help as possible in the research area because again, you need to move quickly.
5. Listen to Your Doctors: If you don’t have doctors you trust….find different doctors. If you don’t have doctors that will take the time to explain your treatment plans and options….find different doctors. If you don’t have doctors that will listen to your questions and take what you are telling them seriously about your body to determine the treatment plans and options….find different doctors. If you don’t currently have good doctors ask friends and family for recommendations and continue your research. Also, don’t be afraid of a second or even third opinion. I personally believe a second opinion should be from doctors independent from your current doctor versus referral to a buddy at a different institution (if your doctor does not want you to get a second opinion….find a different doctor asap). Even if you are not 100% comfortable with your current hospital/doctor get the tests done as fast as humanly and administratively possible (MRI, CT Scan, PET Scans, Biopsies…whatever is recommended). You can always switch hospitals after your second opinion and the new hospital will use these test results without wasting valuable time.
6. Be a good patient: Whining and self-pity won’t help you. After you have made the caregiver decision keep paying attention and asking questions…but do what they tell you to do and move forward. Try to stay positive and pleasant with the staff even if you feel like you are being tortured. There is stress everywhere in a hospital and the negative patients sometimes receive a negative response which I believe hurts their survival rates. Smile and do your best to stay positive. Always remember they are there to help you (even when the treatment side effects occasionally make you feel otherwise).
7. Fear is the Mind Killer, drive it away: I’m not one of those people who thinks fear is all bad. Fear occasionally stops us from making stupid decisions (think tight rope walking between skyscrapers or quitting a good job in anger without a backup). Fear is part of the evolutionary process and is what made me get a third opinion at Mayo Clinic (which had a positive outcome). However, once you have made the hospital decision and the path is set, Fear is the Mind Killer. You have to drive it out of your mind. I repeated the below litany multiple times during my radiation and chemo treatments; it helped to drive away the fear. Use prayers from your church or your own mantra to keep going forward….but fear during the fight will not help you beat cancer. You must drive it out of your mind once your path is set:
o “I must not fear. Fear is the MIND KILLER. Fear is the LITTLE DEATHthat brings total obliteration. I will face my fear. I will PERMIT IT to pass over me and through me. And when it has gone, I will turn the inner eye to see its path. Where fear has gone there will be NOTHING. Only I will remain.” Frank Herbert, “Dune”
8. Exercise and Diet even when you feel miserable: I’m not qualified to give medical advice. However, one thing that has been very strange to me in this whole experience is that the main lifestyle questions you will get asked by the Western medical community after a cancer diagnosis is “How much do you drink or smoke”. I don’t smoke and I’m a moderate drinker. Considering my form of cancer is in my digestive track it would be a logical assumption that my diet would be very important. The problem is that diet and lifestyle are extremely complex to study in a scientific way with so many variables (unlike smoking and alcohol which is directly linked to multiple types of cancer deaths). They simply don’t have the case studies to support recommendations based on different body types, lifestyles…etc. With that said, every doctor/nurse I’ve ever spoken with feel diet and exercise are critical in preventing and fighting cancer. One thing to realize is that cancer is a disease of the immune system that has failed to detect the presence of cancerous tumors (because of some very clever cloaking mechanisms adopted by cancerous tissue). Anything that causes your tissues to swell, such as allergens from foods or external agents, is not helping. In addition to your traditional treatment, consider finding a specialist who is willing to do an assessment of your body’s tolerance to different foods and develop a diet that is free of these types of allergens. Over time you will find that the allergens causing problems will change. In addition, exercise (especially during and after chemotherapy) is critical in rebuilding your body’s strength and endurance for the long road ahead. I’m not suggesting you run a marathon, even household chores get the heart pumping.
9. Incorporate Eastern approach within the Western medical approach: Mayo Clinic (other hospitals are doing more of this as well) is attempting to take a holistic approach in the fight against cancer. They even offer acupuncture and meditation on-site as part of the treatment. My wife has believed in Eastern alternatives for a long time and I am now on the bandwagon. I go regularly to a massage therapist who works with many cancer patients; with essential oils and light massage she was able to show me how to drain the swelling in my lymph nodes while helping me control pain and inflammation simply by modifying my diet (see above). While my main medical advice is to do whatever your doctors tell you to do, I personally have no doubt that you will benefit from a healthy diet, exercise, and Eastern approach to protecting your body. In your journey, you will find many cancer survivors who swear by acupuncture, massage therapy, and meditation.
10. Let your friends, family, and people you work with know: I’m normally a private person and I got very angry when a family member posted a “get well” with cancer details on Facebook. I wasn’t ready. But fighting cancer mentally and physically is not easy and you will be overwhelmed by how many people care about you and want to help….but you have to let them know. I used an email update; others like applications like CaringBridge. You should not feel guilty if you don’t have the energy to communicate extensively or just need a break from talking about cancer and decide to check out for a while. I personally told friends and family that I would update them regularly but asked that they talk about anything other than cancer when we connected. A good friend of mine who fought cancer told me early “listen to your doctors and don’t talk or think about cancer on non-medical time…your job is to do what your doctors tell you…not to educate everyone around you about your cancer…think about anything other than cancer and try to laugh often.” I loved that advice. When I’m enjoying our garden and not thinking about cancer (which is difficult to do during treatment periods) I don’t want friends and neighbors bringing up the C-word. You may be different and want people around supporting you with advice. There is not a right and wrong approach so try to find the right balance for you. Once you have found that balance (which may change in the various stages of the fight with cancer), let your friends and family know your wishes on the communication topic; 99% of the time they will respect your wishes.
11. Remember to feel Gratitude and Joy: After you get over the self-pity stage (it is hard not to feel sorry for yourself though self-pity will NOT help you beat cancer) try to feel gratitude. Feel gratitude for the fact that you are still alive no matter the pain or the side effects resulting from the medical attempt to save your life (be thankful that you actually have doctors trying to extend your life). Opening your soul to gratitude will help bring joy into the darkroom….be happy for the little things such as a smiling nurse, a doctor’s joke or the fact that your appointment started on time. Perhaps remind yourself occasionally that every day people die suddenly in wars, heart attacks, car accidents, etc….and those people never get to say goodbye to the people they love. Since you are reading these random thoughts you are not dead! Some of the cool and unique cancer patients I met at Mayo Clinic used a saying that “any day above ground is a good day”. Trust me, these were people in a lot of pain while facing a difficult battle ahead. No matter what the pain or prognosis, you have another day of life. Another day to enjoy a garden, sunshine, a sporting event, or your family. Another day to maybe correct some of the past wrongs. Another day to do whatever you set your mind to do today. Enjoy it. When you are diagnosed with cancer you understand the fragility of life more than most….that is a gift. Carpe Diem.
Final Thoughts: Fighting cancer is very draining on your available energy, but don’t forget about those you love. With teenagers at home, at the beginning of the chaos, I lost track of how difficult this was for them (especially in my initial self-pity phase). In some ways I think my cancer battle will make my children stronger in the end, but I could have done a better job at the beginning. Always remember what is really important in your life. Cancer is just an illness that you will hopefully beat and be stronger for the fight….don’t let it damage anything other than your health. Staying positive and enjoying life today will help you become cancer-free (your doctors will agree with this statement as there is growing evidence showing a measurable correlation between stress and cancer). Cancer may actually help you learn to “don’t sweat the small stuff” and bring more positive energy into your life in the long run. I know that sounds weird to read when they are pumping you full of chemicals….but 3 years from now you will understand.
I love this Mike Tyson quote “Everyone has a plan until they get punched in the face”. I would modify and add that being told you have cancer is like being hit with a baseball bat in the face. But after you get over the shock and stagger to your feet, realize you were not in the World Trade Towers on 9/11 or in that nasty car crash you drove past last month. You are still here. Prioritize your fight with cancer and don’t give up. Make a new plan and keep moving forward.
One foot in front of the other.
Love
Cris
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