By: TrevorBayliss, MD

In the previous blog, Heroic Deeds, I talked about transitioning from a diagnosis to a “hero’s mindset.” But before moving forward let’s take a step back. As we do, please remember that my story and experience as an oncologist have revealed some common patterns, but one thing I have learned is that there are infinite paths to maneuver through a cancer journey. I don’t think I will ever stop learning from watching my patients courageously face their illness.

MOM’S COUCH

I was 19 years old sitting on my mother’s couch watching TV in 1995 when she answered a phone call and disappeared into her bathroom to talk. It was an odd place for her to take a call and she was in there way too long. I’m not sure if she was talking to the doctor that whole time or trying to collect herself before telling her son he had a rare leukemia. I do know that her life changed in that moment and perhaps she wanted to give me just a few moments before delivering the news that would forever change mine. I knew before she emerged with tears in her eyes that it was bad – the battery of tests, the weeks of waiting, and finally a diagnosis, LGL T-cell Leukemia.

RELIEF?? WAVES ON AN INCOMING TIDE

I remember being surprised by my initial reaction, almost a sense of relief to be given an explanation for the severe fatigue, the protruding abdomen (enlarged spleen). Then my new reality began to settle in like progressive waves on an incoming tide. I was an athlete. Was that identity stripped forever? I was in college, but the thought of focusing on school work seemed impossible, even trivial. Would I finish college? Would I get married? Have children? These things had seemed inevitable only a few months ago and now I was staring down a road vanishing into a dense fog.

GUILT, DENIAL, AND OTHER REACTIONS

Depending on the diagnosis, the stage, the type of treatment required, and many other variables there is a terrifying period of wondering if this is going to be just a bump in the road or forever alter the course of your life. For most the mind needs to mourn the losses. There can be powerful feelings of guilt. Did I contribute to this? Why did I ignore the symptoms for so long? My own experience with denial of symptoms was powerful. I had progressive, abnormal fatigue. My athletic performances were suffering. I had an abnormally protruding abdomen, noticeable to my coaches and peers. But I found every possible reason to write these off as fatigue from studying, burnout from sports, and even a late growth spurt (in the wrong direction!).

ANCHORING IN THE PRESENT

Other emotions emerged in the weeks and months after my diagnosis, sadness, fear, anger. When I think about it now they were all tied to my attachment to the past and/or my anxiety about the future. I began to recognize that my moments of feeling strength, courage, even happiness were slowly becoming more frequent and longer lived, and they were tied directly to feeling fully anchored in the present. What they were surprisingly not tied to was the actual course of my illness. One of the most peaceful moments I have ever experienced came on the night I was told I had weeks to months to live. In that moment, which came almost 2 years after my diagnosis, I didn’t give up, far from it, but I completely let go of any expectation for the future and I was done mourning what I had lost. The following are some ideas, from my own experience and from observing countless patients face their diagnosis, on how to cultivate being present in the moment after a cancer diagnosis.

CULTIVATE BEING PRESENT

• Solidify your confidence in your diagnosis, stage, and treatment plan.

Any doubts lingering in your mind on these important factors will continue to nag, distract, and pull you off course. So clarify it with your oncology provider. For some, reading up on their diagnosis from reputable sources can help to get a better grasp on it. Seek a second opinion if you need that reinforced level of confidence. I always encourage and help facilitate a second opinion to any patient that asks because I know that if nothing else they will return more confident and in a better place to support their healing without looking back.

 

• When emotions surface sit with them, process them.

Find someone you can talk to, maybe a loved one, maybe a friend, or maybe a therapist who can guide you along. I had a terrific therapist during this time. I went back in time with him and dug through my parent’s divorce discovering ways my energy was blocked that I never realized. This initially seemed unrelated to my illness, but I discovered it was required for me to move forward with all of my healing power present. I became a more open person. Don’t be surprised when old emotions you thought had been successfully processed resurface later in your journey. An example I experienced came 12 years after my diagnosis. I was doing great, taking my weekly medication, living well with my chronic illness, and then I had a son. It was a wonderful, life changing event, but suddenly old fears with a new face began creeping back in and needed to be processed in a new way.

 

• Find a technique to help quiet your mind.

For me this was meditation, initially a basic breathing meditation and then incorporating visual imagery. At its most basic meditation is a practice of recognizing a thought and then letting it go. The mind is like a muscle and a daily practice can allow greater ability to recognize a distressing thought in the flow of everyday life and let it pass. For some, sitting still is tough. Similar benefits can come from other meditative practices such as tai chi, qigong, yoga.

 

• Find ways to be an active participant in your healing.

This is an expansion of the bullet above. Find evidence-based complementary modalities to incorporate into your care. Always check with your oncology providers to be sure there are no contraindications, but a mind body practice, appropriate physical activity, nutritional interventions, acupuncture, massage, maybe some vitamin and/or herbal therapies approved by your providers. I dove into all of these categories as I battled my leukemia. I’m not sure how much they contributed directly to my recovery, but I know without a doubt they gave me a sense of control, confidence, and helped me feel present and active in my healing journey.

 

• The healing power of laughter.

It seems to me that it is impossible to not be present in the moment when truly belly laughing. Rent you favorite comedies, joke with family and friends. If you reach a place where you can do it, inject humor into your diagnosis and treatment. I have seen patients remarkably disarm the hold that the diagnosis seems to have on them and remind everyone on the room that their spirit is unfazed.

 

THE FOG WILL LIFT

Receiving a cancer diagnosis is a life altering experience. No two people will experience it the same because of how different the diseases are and how different human beings are. What I do know is it will claw at your identity, your sense of self. It will try to pull you into negative emotions about the past and keep you ruminating in fears and anxieties about the future. Your task is to move with these and through these, to find a way to be present in your journey. If you take on this challenge the fog will lift, you will emerge with greater resilience, more openness, a greater ability to be in the moment. You might even discover a truer version of yourself.