Reasonable Expectations
I am often asked if I have anxiety about results of scans, tests, and reoccurrence. Of course there are questions and concerns, but I can say with all sincerity, I am fairly calm and don’t dwell on this. I never play the “what if” game. I believe this is a result of the healthy denial I have often referred to. It is an astonishing mix of fragility and ferocity. I have the capability to eliminate this from my mind or at the very least, move it to the back burner. It is not front and center and causing heightened emotions. I coach patients on ways to overcome this fear and anxiety. Below are a few thoughts and strategies, most of which can be applied to any situation and not necessarily just to health scenarios.
A few tips after Pancreatic cancer diagnosis...
Make a decision about your medical team quickly and have a plan. Not knowing anything about the disease or having experienced anything like this, I had no expectations and protected myself by not reading the grim statistics on the Internet. You obviously want to be informed, but asking loved ones to help with research can add an important protective layer.
Take baby steps. Time is of essence in most cases, but remember, you can’t do it all at once.
Family and friends will have many suggestions and offer resources. Manage this carefully and know this will take time.
Believe in yourself with the immediate decisions you make and understand this situation will be fluid. You can make changes – nothing is set in stone.
Today, I write this blog disavowing my confidence and usual thoughts that "everything is fine." This is my typical answer when asked, “How are you?” “I am fine.” However, I am not fine right now. Recently, there are too many calls informing me of losses or hospice for these dear souls. My heart swells with mixed emotions. This seems to be such a constant; the grief I feel seems to be escaping from my pores. Many of you can appreciate learning of a loss as a result of cancer; it becomes very personal even if you do not have any association with the individual.
Learning about losses – however it happens – reading online or in the newspaper, shared from a friend or on the news, a personal connection is not required to momentarily have that gasp, feeling of sadness and despair, and reflect on that person’s life. Thoughts go to the journey they experienced, the legacy they left behind, how the family is coping and above all, why? I have been blessed to have met and known amazing pancreatic cancer survivors, mostly through the Pancreatic Cancer Action Network. Some were 12-15 year survivors, which is extraordinary and so fabulous. Then I learn the terrible news they lost the battle. And so quickly, suddenly, after so many strong, meaningful years, gone...why? It is then I feel vulnerable, angry and fragile. None of us know when our time will come, but I suppose it is reasonable to feel vulnerable and fragile when you have been subjected to a death sentence.
I just learned about a memorial service in honor a very lovely woman who fought a strong, brave pancreatic cancer battle with grace, beauty and dignity. I knew her as an acquaintance and so enjoyed our brief times together. A few months ago she came up to me at the nail salon and was so happy to reconnect. We chatted for a while and she suggested lunch in the near future. We emailed briefly; summer was quickly approaching. She looked frail but I had no idea how close she was to the end. I did not take it personally that my emails were not answered.
This patient’s doctor said her husband was a saint in the way he cared for her, “The best I have ever seen.” I asked what that meant as he has, unfortunately, seen so many of these situations. He said her husband had “reasonable expectations” and the way he loved her “was the best I have ever seen.” He was not crazy in saying or thinking why can’t she live another 6 months or 2 years? He let her make the decisions, agreed and supported them. He was always looking over her shoulder, offering support in the most loving way. He wanted to do the right things and did them in the most loving kind of way.
How lucky to have experienced this kind of love, trust, and support. Characterize people by their actions and you will never be fooled by their words. How often do expectations set us up for disappointment? How do we avoid this? I believe the answer is to manage your expectations. Let every situation be what it is, instead of what you think it should be. Let’s accept instead of expect. I love how the doctor beautifully and compassionately described the husband who had “reasonable expectations.”
I remember a bike ride of 60 miles up the Independence Pass in Aspen. Starting at 8,000 feet elevation riding up to 12,000 feet, I did not dare look at the route ahead or to the top, which is the Continental Divide in the Sawatch Range. To have this intimidating picture in my mind was unimaginable; the vision of what I knew would be dramatically hard, grueling and challenging (it was all of this and more!). This image would only add to the anxiety, I did not want to know what was in store for me. I had the same mindset prior to any surgery or procedure related to my pancreatic cancer diagnosis. I did not want to see any of the instruments, machines, details of the room or anything that might take my imagination to another level unnecessarily.
When I was given that unequivocal and chilling diagnosis of 3-6 moths to live, it was if I was outside my body and this was happening to someone else. Of course, I wanted to survive but honestly I did not have expectations of what this would look like or how I might succeed. This lack of expectation did not derail me. I practiced “reasonable expectations.” I was proactive, determined to fight as hard as possible and honestly believed this was not going to get the best of me. This mindset stayed with me as I continued in a treatment that might save my life. Throughout years of treatments, I did not ask, what are my chances of survival, how long will I be on this drug, what should I expect with...? I wanted to be informed but just to a point; I did not want to be disappointed by my expectations. I allowed my positive thinking to take over and honestly believe that is one of the reasons I am here today. I continue to enlist this practice with the challenges I face in my life today.
This week we learned about the tragic loss of the incredibly talented Queen of Soul, Aretha Franklin. A few years ago I met her briefly at a reception at The White House before the Kennedy Center Honors. For a year I was in contact with her manager after learning she “might” have a pancreatic cancer diagnosis. She was intensely private, proper and ceremonial. Her manager said he still referred to her as Ms. Franklin after 40 years of working with her. It was not confirmed but my conversations with him indeed corroborated this terrible diagnosis. Of course she had access to the very best, but I also knew, as a member of this club, that the best also came from the Pancreatic Cancer Action Network and I so wanted her to consider some of the valuable resources that she might not have had. The cutting edge of science, trials, medical institutions, diet and nutrition and so much more from a source that lives and breathes this important information 24/7. No one would have known of her outreach. There might have been one stone unturned that could have made a difference. I regret that she was not able to share some of her diagnosis with the public, how this might have had a positive impact on research, funding, and saving lives. I believe if Steve Jobs, as a major public figure and role model, would have said anything about the importance of funding medical research, as in his case pancreatic cancer, this could have changed the landscape for all cancers.
There is a difference between pain and suffering. Studies show that the feeling you can go no further is just that, a feeling. Changing how you think can change how you feel. South African author and fitness researcher Tim Noakes advanced the view that our brains are wired for self-preservation. In a WSJ article by Alex Hutchinson he talks about how if you change your perception of a task’s difficulty you can change your actual results. “Perhaps the most powerful and widely applicable technique for changing how your brain interacts with incoming signals is to train yourself with motivational self-talk. Whether you’re conscious of it or not, you have an internal monologue running through your head during difficult tasks, and it has a measurable impact on how effortful you perceive those tasks to be. It is possible to channel that monologue in productive ways.“ I have often talked about the positive effects of writing in a gratitude journal, expressing affirmations to yourself out loud first thing in the morning or any kind of journaling. Thoughts become things, choose the good ones!
One of my many gratitude journals
Life is fueled by purpose, motivated by a ticking clock with so much to learn, discover, love and experience. Let us never forget there is extraordinary in the ordinary with magic in every breath, if we can only see it for what it is. Set reasonable expectations – embrace the here and now and celebrate the present!