Riding the Mesothelioma Roller Coaster

• Joseph Belluck
• Caregiver Stories

My family and I have been riding the so-called “mesothelioma roller-coaster” for over six years now. The ups and downs of this disease are never-ending and, even though my father has since passed away, they continue.

When my Dad was diagnosed, it was instant confusion followed by anger mixed with sadness, anxiety, and grief.  Upon completion of surgery and chemotherapy, it was relief and happiness.  I remember telling my husband after Dad got a report from the doctor that there was no evidence of disease, that I had thought that I would never be able to truly smile again. During the clinical trial, the good reports kept coming, and we shared so many happy memories in that time that I will always treasure.

When the news came that some mesothelioma had returned, it was back to square one, but in a different way this time. Now, we were educated, and it seemed like the sense of shock of what we were dealing with was muffled a bit. We knew what mesothelioma was this time, the prognosis, the implications of treatment, and so did our close friends and family members. After the radiation that followed, Dad was once again showing no evidence of disease. We thought that once he recovered from the effects of the treatment, he would be back to his old self again, just like before.

That was until the morning that he passed away. Less than an hour before he was gone, I spoke to my father who told me that he was feeling better and better. He told a friend he thought that he was turning a corner toward complete recovery. Ultimately, this was not to be. I don’t need to document the gamut of emotions that I felt that day, but I think it is important to realize that my emotions are still all over the place. The roller coaster ride continues.

Every day, I feel sadness and grief at the loss of the man who shaped me, but gratitude for his presence in my life. I feel joy and warmth thinking back on the memories we made while, at the same time, mourning those we didn’t get a chance to create. I laugh remembering his smile and sense of humor, while shedding tears in knowing that I don’t get to hear it anymore. The aftermath of mesothelioma is something that I will carry with me forever, but I will always keep on loving my father and remembering his beautiful life.