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Don’t look up, look forward

Regarding the Journey

There’s an ancient moral parable about a tyrannical Roman king named Dionysius, his court flatterer, Damocles, and a sword. The king lived in luxury, yet in constant fear of retaliation, assassination. Damocles would incessantly comment on how wonderful it must be to be king, without a worry in the world. One day Dionysius showed Damocles what being king felt like. He seated Damocles at a lush banquet full of glorious foods, gifts, and servants to meet his every need. Damocles was reveling in the lap of luxury until he noticed the sword suspended above his head by a single horsehair. In that instant, Damocles could no longer enjoy the feast before him for fear of impending death. He asked to be excused and no longer wished to be so fortunate. Today, Damocles’ Syndrome is recognized in medical publications and lived out by many cancer survivors.

To every single survivor out there — way to go! You did it! You fought and survived! You are here another day to love and be loved. To feel the sun on your face. To hear laughter. To smell fresh baked bread. Give yourself a hug and rejoice.

Survivorship begins at diagnosis. What only survivors know, is that nipping at the heels of survivorship is insecurity. Because we are now acutely aware of how close death might be. Like Dionysius’ sword, cancer feels always looming. Mortality is something we have had to consider. It is no longer abstract. Yet, if we allow life’s joys to be measured against our fear of death, we will lose the peace available to us each day.

The focus from diagnosis forward is on getting better, kicking cancer to the curb. There is no time to think past the next treatments. It can all happen so fast. During active cancer treatment, patients have access to an entire support team. From their doctors and health care staff to the individuals that step up to cheer them on during treatment, appointment after appointment, someone is nearby ready to lend support.

For many, the day they all have been fighting for emerges, they are released from treatment! The cancer is undetectable. It is a momentous time. Euphoria, cake and streamers, a deserved party atmosphere celebrating a hard-won battle. Out the door into the big wide world they go, floating on the high of the emotions. Time to get back to life as it was. Pick up where we left off. No more endless medical appointments. That first night is the best sleep they’ve had in a long time.

Then morning comes and reality sets in. No one is looking after them anymore and the anxiety and worry can become constant companions. Survivors can be unprepared for what comes next — a screeching halt to what was a whirlwind of activity, albeit often body-crushing. Throughout treatment patients know where they stand. From tumor markers to scans, they could rationalize why they felt like they did. If they got down, someone was there to prop them up. But now they are ‘back to normal’ and feeling lost and confused. They live with the fear of recurrence, nagging and persistent side effects that interrupt daily life, and a body, mind, and bank account that are much different than when they started. Life is fragile.

By 2030 it has been estimated there will be over 22 million cancer survivors. And if we look at survivorship in the broader sense of the human experience, that number pales in comparison to the number of survivors of all disorders and diseases. Survivorship programs are important for those moving forward from their illness.

Cancer is insidious. But you are resilient. During the journey, we are laser-focused on getting rid of our disease. When faced with life and death decisions, we pick life. Treatment, while incredibly tailored to specific needs, can feel like a wrecking ball swinging through the body. Remember, your body brought you through to the other side and no battle is fought without some scarring. It’s new shape and abilities are to be honored. It took time to rid you of disease. Grant yourself time to build back up. And as you continue to heal from treatment, love yourself enough to accept and even embrace the beautiful, new you.

Lesslee Dort is a board-certified patient advocate who firmly believes knowledge is power when it comes to being in control of one’s health. She spends her days helping others navigate their health care and her free time exploring. Reach Lesslee via email at lesslee@friendstogethermi.org. Read her here the third Thursday of each month.

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