By Heidi Klessig, MD
Originally published on Physicians For Compassionate Care Education Foundation “Stories” page. Republished here with permission.
On the morning of our son’s sixth birthday, my husband woke up feeling dizzy. Very dizzy. So dizzy that he vomited every time he tried to sit up. At the emergency room, his symptoms didn’t improve so he underwent a CT scan. I could tell by the doctor’s expression when he came to give us the report that it wasn’t good news. Darrel had an enormous tumor in his brain stem. When I saw the scan for myself, my first thought was “That’s the widow-maker right there.” My husband said later he was praying, “Lord, please don’t let me die on my son’s birthday.”
Darrel was transferred emergently to Mayo Clinic in Rochester, Minnesota. My thoughts were swirling as I called my mother to come and care for our two small children and cancelled my clinic schedule so I could follow him there. It felt like a bomb had exploded in the middle of our lives.
When I arrived at the hospital, Darrel was undergoing further evaluation and testing. Because of his tumor, he received a large dose of steroids which improved his nausea significantly. The on-call resident seemed puzzled by this sudden lack of symptoms, saying he had just admitted another patient with a much smaller tumor whose symptoms were much worse. The next morning, they held Darrel’s breakfast in case of possible surgery while he saw many specialists. The senior neurologist who saw him actually stamped her foot because he had a normal neurological exam, “You give me nothing!” The neurosurgeon was grave: if he tried to biopsy or remove Darrel’s tumor, there would be risks of death, loss of awareness, paralysis, and ventilator dependency. Because of these risks and because Darrel was feeling so much better, he decided to wait before proceeding. Every morning for three days Darrel’s breakfast was held for possible surgery, and every day surgery was cancelled because he still felt fine.
Ultimately, the doctors decided that this tumor must be benign, and that it had probably been growing slowly over many years. They told us to go home and spend time together, with their prognosis being that Darrel’s condition would gradually worsen into greater and greater disability, and ultimately death. This pronouncement was echoed by my husband’s internist when Darrel showed up at his office the next week for a follow up appointment. The doctor walked in, looked at him, and said, “What are you doing here? Go home,” and walked out.
So, we took the doctors’ advice and focused on preparing for what future we might have together. We sold the big doctor house and moved to a smaller place in the country. I quit my practice and we used my buy-out to purchase some rental property for income. We hugged our children tight and made the most of every moment.
And…that was nearly twenty years ago! Darrel has remained neurologically intact and his tumor remains asymptomatic. He uses a walker to get around because he has a higher risk of complications with elective knee replacement surgery. But otherwise, he still enjoys the ups and downs of life just like anyone else.
When we learned about Darrel’s brain tumor, euthanasia and physician-assisted suicide were not being pushed on patients in the same way that they are today. When doctors give a prediction of a slow slide into progressive disability and dependency, it is understandable that patients might see “medical aid in dying” as a way out. But our experience proves that these predictions don’t always come true. We have enjoyed nearly two decades of birthdays, anniversaries, holidays, and family vacations together. We have learned to value our relationships and not take them for granted. And I joke that Darrel’s tumor has been great for our marriage because I no longer sweat the small stuff!
In our American culture, many view autonomy and self-determination as fundamental rights, and advocate for physician-assisted death as a means to those rights. But no one is truly autonomous: did any of us ask to be born at this time in history, to our particular set of parents, or with our own ethnic heritage? Bioethicist Daniel Callahan refutes the idea that self-determination is our paramount virtue this way: “To accept that comes close to declaiming that life can have meaning only if marked by self-determination, a strange notion indeed, flying directly in the face of human experience. That experience shows that a noble and heroic life can be achieved by those who have little or no control over the external conditions of their lives, but have the wisdom and dignity necessary to fashion a meaningful life without it.”
Callahan goes on to say that because we are social creatures, we influence those around us by the way we handle suffering. “We all suffer at one point or other, and we all need the witness of each other that we can get through it.” For example, during our time of crisis I can remember sitting with my children on either side and watching a group of men laying hands on my husband and praying for him. Darrel said he could feel their tears falling on him as they asked the Lord to bless him. While Darrel was still in the hospital, these men cut our grass and cared for our garden, and others like them continue to help him do things like cutting down dead trees and making firewood. Darrel’s diagnosis brought out the best in these men, characteristics we might otherwise never have known about. And watching Darrel refuse knee surgery so as to give himself better odds of being there for his family has encouraged many others as they face their own struggles.
Looking back, our time of suffering redirected our focus, making our lives deeper, more reflective, and more meaningful. Truly, I wouldn’t change our situation even if I could. That’s why I call it the best brain tumor ever!