Palliative Care Doctor: Palliative care, in medicine, is the specialty of caring for patients who have chronic illnesses such as cancer; the goal is to help patients achieve a good quality of life by controlling symptoms and stress and providing emotional and spiritual support to patients and families. Palliative care can be provided along with curative (life-prolonging) treatment.
Palliative care is different from hospice care, which is used to provide comfort to patients whose illness is terminal (i.e., they are likely to die soon). When a patient receives hospice care, they stop receiving curative treatments, and their focus shifts entirely to symptom relief and making them comfortable as they prepare for death.
We were discussing my palliative care plan. My doctor had opened my chart, and we were going through every treatment I had received over the past six years, including chemo, a stem cell transplant, CAR-T therapy, multiple surgeries, multiple rounds of radiation, and now, a daily pill to control my bone marrow cancer. Also, radiation for my surprise prostate cancer diagnosis.
She had reviewed all of this information and was familiar with my treatment plan and current status. But then she asked me a question that no one had asked me before.
“Was all of this worth it?”
I have been asked many questions over the last six years. Some of these questions included:
* What is your level of pain?
* Are you experiencing any side effects?
* Have you signed an advance directive?
* Do you want to discuss your quality of life?
* How are you coping?
* Do you need any support?
* Do you understand the prognosis?
* etc.
However, no one had ever asked me if all the treatment I had undergone was worth it. This may seem surprising. However, when you are in the midst of a serious health crisis, you can’t reflect on the larger picture. You go to each treatment, you deal with the side effects, you celebrate each small victory, you survive each major setback, and you continue to move forward because stopping would mean considering an option that you are not yet prepared to accept.
But sitting in her office, that question hung in the air. Is it worth it?
I thought about the six months after I underwent the stem cell transplant. During that period of time, I began to feel hopeful that perhaps I had finally turned the corner and things were starting to improve. I made plans that went beyond my medical appointments. I even allowed myself to begin feeling hopeful about the future again. However, I knew that the cancer would eventually come back, and it did.
I thought about the twenty months after I underwent CAR-T therapy. Those twenty months were longer than the six months after the stem cell transplant. They were long enough that I occasionally forgot that I was living on borrowed time. They were long enough that I began to think in terms of seasons again rather than in terms of scan cycles. They were long enough that I remembered what it felt like to simply be alive and not constantly measure that life against the potential end.
I thought about all the hard parts – there were so many hard parts. There were the days when I was unable to get out of bed. The nights when pain prevented me from sleeping. The moments when I looked into the mirror and did not recognize the person looking back at me. The times I looked at my wife Joyce’s face and saw the toll that this was taking on her as well. The surgeries. The waiting rooms. The test results that changed everything, again and again.
My answer came quickly.
“Yes, it was and is worth it.”
What I have learned in the six years I have lived with cancer is that life is a precious gift that is bestowed upon us without any expectation of repayment. That type of gift cannot be discarded simply because the path is hard, long, and unknown.
I did not say that the journey has been beautiful. I did not say that I am thankful for cancer — I am not. I did not say that this has all been part of a grander plan that will become apparent if you view it in the correct light. I am not using platitudes.
I am sharing the truth. The truth is that life, messy, painful, and unpredictable life, is still worth showing up for. Even if showing up requires another treatment session. Even if the remission clock starts over again. Even if you are diagnosed with a second cancer, in addition to the first one. Even if you are managing the ongoing maintenance of the targeted medication that is currently controlling your bone marrow cancer, but is not a cure.
I have lived six years that I might not have otherwise lived. Six years of sunrises, of conversations, of ordinary moments that are only ordinary until you consider the alternative. Six years of being Joyce’s husband. Six years of watching my sons grow and develop. Six years of writing, of connecting, of attempting to find significance in the meaninglessness of it all.
The doctor nodded. She did not attempt to add or subtract anything from my response. She simply let it stand.
Since that day, I have reflected on that question many times. Is it worth it? Is it worth it today? Is it worth it tomorrow, when the side effects feel overwhelming? Is it worth it next month, when the scan may reveal something new?
Perhaps the answer is always yes. Not because I am braver than others, or because I am fighting harder than anyone else. Not because I possess some special insight or unwavering faith. Simply because life, in all of its complexity and difficulty, is a gift that I am unwilling to relinquish.
Even when the road ahead is difficult. Even when the road ahead is long. Even when the road ahead is unknown.
Especially then.
