Lucy Kalanithi is a physician and a widow. Her husband, Paul, died of lung cancer. He was diagnosed as he was completing his neurosurgery residency. They had a plan before cancer. She was already working as an internist and when Paul would finish his residency they would have the time and finances to start their family. If you’ve heard Lucy speak you’ve heard this story. They knew he was terminal and discussed the possibilities of going ahead and having a family. Lucy asked Paul “Don’t you think saying goodbye to your child will make your death more painful?” and Paul replied, “Wouldn’t it be great if it did?”.
Nothing has ever made more sense to me. Nothing. I can’t explain why. There is knowledge and there is knowing. Knowledge is explainable it lends itself to language and description. Knowing has no language, because the soul is without speech. “Wouldn’t it be great if it did?” is something I am deeply knowing.
Early in his diagnosis my husband said “This would be so much easier if I didn’t have you and our son”. I was not offended. Easier rarely means better. Having us to worry about, to care for, to fear leaving was not easy, but it was better. It was so much better, and infinitely more difficult.
My dad died of melanoma in 2011. He was diagnosed nine years prior. It was discovered in a small black spot behind his right ear. Our family physician removed the spot and sent it for biopsy. Skin cancer was not new to my family lineage, but melanoma was. We were of Scandinavian descent and prone to highly treatable skin cancers. Both of my paternal grandparents had had multiple excisions on their faces and ears, with no additional treatments needed. The cancers were cut out and by nature of their removal cured. Melanoma is a different beast entirely.
Cancer in its simplest form is unmitigated growth. Cancer is not simple, but that is my simplest explanation. There are countless variations and complexities that exist under the formidable umbrella of cancer. Melanoma is one of the uglier ones. Melanoma cells grow quickly and worse still spread to other parts of the body. We call the spread metastasis. When my dad was diagnosed from an initial small biopsy of his skin. We went to Uchealth Anschutz Pavilion to see Dr Renee Gonzales. He was the regional melanoma expert at the regional teaching and research hospital. We were lucky to be living within 70 miles of his expertise. They removed a larger section of skin and a local lymph node. The pathology report came back clean. They had removed all the cancer. The treatment plan was to have annual checks for the next five years to make sure it didn’t come back. We left rejoicing in our good fortune. But secretly I heard the echoes of a nursing professor whispering in the back of my mind, “I hate melanoma. It’s like breast cancer. You think it’s gone but then five years later it shows up in their liver, lungs or brain.”
I interviewed for my first hospice job on April 20, 1999 in Denver, Colorado. I sat in reception waiting for my interview. The receptionist was busy on the phone because nurses in Littleton were finding it hard to get to their patients as there was a large police presence and road closures around the high school. As I interviewed for the job that would become my passion, children and a teacher were being massacred at their high school a few miles away and because of that I have never forgotten the date. They hired me, and those initial patients of mine have not been forgotten any more than I can forget the events of the day.
One of my first hospice patients was a consummate lady and a consummate Texan. She sat comfortably in the sunny living room of her daughters house. Her family had moved her from Texas to Colorado, as she was widowed and her cancer had advanced. She was dying and needed to be with family for care and comfort. She was impeccably dressed and very at ease. In her slow soft drawl she explained what was already clear in her demeanor, she was not afraid to die but did wish to be more comfortable. Transversely her daughter stood the whole time, ringing her hands and anxiously awaiting an opportunity to get something or do something that might ease her mother. We signed paperwork. I ordered medication and medical equipment. I instructed them on how to give the medications and why. I suggested dietary changes and positioning that might aid swallowing. Finally, I asked if they needed anything else or had any other questions. Her daughter with face tight and desperate eyes asked “have you ever known anyone with cancer before. I mean, not a patient. Have you ever loved anyone with cancer before?”. My answer was “no”. I was twenty five years old and looked eighteen. I understood why she was asking. I knew my answer was disappointing. I didn’t know what she was going through. I didn’t. How could I?
Five years after Columbine and two months before my wedding day my dad developed a weird cough and upper respiratory discomfort. I talked him into getting a chest xray to humor me. They found a spot. It was completely unrelated to the cough, but I had a gut feeling…. They removed the tumor in his lung, but two days before my wedding they found a spot in the liver. They gave my dad three months to live. My mom picked up her phone to call me, and my dad took it away. He forbid anyone telling me until I returned from my honeymoon. It was a huge sacrifice on his part and the best wedding present we would receive. My aunts all cried during the father daughter dance. I found it extremely uncharacteristic. My dad, who never sang, tried to sing the song to me. It was Butterfly Kisses, and his voice kept breaking. I should have known, but I didn’t. I was in love, and in my mind all was well with the world.
He didn’t die in three months. He lived until the day after our fourth anniversary, and passed away peacefully in my parents home. In those last months we spoke about dying. I remember asking “what is the hardest part? Are you afraid of dying?”. He said, “No, I’m not afraid of dying. I’m afraid of the goodbyes”.
My husband would develop melanoma within five years time. Only his diagnosis of mucosal melanoma was much worse than my dads cutaneous melanoma. It’s incredibly rare, highly aggressive and has a poorer prognosis. My husband, like my father choose clinical trials over the normal standard of care, and has been incredibly, miraculously successful. Although he carries a sort of survivors guilt that he is living and thriving when my dad died. He feels guilty that I am living through this disease again, and although its brutal and cruel and I often think God must be drunk. Isn’t it great that it hurts? Because it can only hurt when you have loved deeply and are loved deeply. I wouldn’t have it any other way. Isn’t it great that it does?