I come from a family of physicians and healthcare professionals which has turned out to be one of the biggest blessings in my life. My mother was a nurse, and both my father and grandfather were surgeons in practice together. Several of my siblings and daughter are in the healthcare field, including a sister who is an APRN in Cutaneous Oncology at Dana-Farber Cancer Institute, another who is a Nurse Anesthetist, a brother-in-law who is an Oncology Surgeon, and my daughter who is a Critical Care Pharmacist. My mother and father taught my siblings and I to value education and hard work, and these values guided all of us in our careers and family life. These values have helped me through my career, family life, and now as I undergo cancer treatment.
I had been experiencing symptoms for about a year that went untreated and undiagnosed. All of my siblings encouraged me to see an ENT, who did a biopsy. I then had an endoscopy done in Boston, and the oncologist explained that I had stage 4 laryngeal cancer. This diagnosis hit me hard.
The oncologists at Dana-Farber said they would only release me to one place in Connecticut and that was Smilow Cancer Hospital. Soon after, my wife and I met with
Aarti Bhatia, MD, MPH, Assistant Professor of Medicine (Medical Oncology), who came up with the same diagnosis and the same recommendations for care. The cancer was so extensive that surgery was not recommended, but there was a Phase I trial open at Smilow that was only available in five other locations in the world. I believe I was meant to be at Smilow. I underwent radiation treatment in conjunction with the Phase I trial. As soon as I started the Phase I trial, I started having a reaction to the drug. The infusion nurses and Dr. Bhatia were right there with me. She asked me, "Do you want to keep going?” I did not want to continue, but somehow I said, "yes.” I wanted to give this trial all that I had and more.
During these treatments, the team found that I have another cancer called Waldenstrom Syndrome, a blood disease that causes neuropathy, as does the chemotherapy that I am on. With all that I’ve gone through, the neuropathy is the most difficult part to manage. I am so thankful for the Palliative Care team at Smilow for helping me to manage this pain. They took the extra time to educate me, answer my questions, and help me manage my pain with pain medication and dosing that I was comfortable taking. Now my pain is very well managed and I feel like I have gotten so much of my life back.
When I finished school and prior to pursuing my engineering career, I was an aviator in the Coast Guard for a stint. I loved that time. I got to travel the world and met so many friends along the way. But now I see how it relates to cancer as well. Whenever I get on a plane, I glance at the closed cockpit door. I would rather be sitting in the cockpit myself, but I put my trust in the pilot. I have to trust that the pilot knows what to do. Like most of us, I would prefer to be in control of my life and my health too, but after my diagnosis, I have realized that I need to let go and trust always in God and the doctors who are making the decisions for me and really trust in all those who care about me and for me.
Cancer has actually brought out good characteristics in my life and magnified them. When I was first diagnosed, I didn’t have a big white light spiritual experience; it was gradual. I grew up Catholic. I already had a good foundation to build upon. I attended mass regularly. I had a belief that there are good things to come, but I got caught up in life like so many of us do. I didn’t always slow down and pay attention to the really important things in life. I chased after a career and money and the best material things that you can buy in life, but I took for granted the things that are free and right in front of you.
But with multiple diagnoses, a trial drug, side effects, and a very poor prognosis, I thirsted for more spiritual knowledge. I had moments when I was full of fear, but then I decided to lean into my faith. I started going to daily mass. I started attending the Palliative Care Catholic prayer group. I started reading books about my faith and positive psychology. I started praying and meditating more throughout my day. Every morning I pray for knowledge of God’s will for me and the power to carry it out. I have also started walking as I pray, and I now walk up to 8 miles a day. Each day when I first start my walk, the neuropathic pain is severe, but as I walk and pray, the pain begins to subside.
As this disease has humbled me and as my faith and spirituality have deepened, I have gained a new perspective. I now know that time is very precious. You cannot manufacture time. So as one of my cancer friends always taught me, it is not merely important to do the next right thing, we must do the next loving right thing. Now I let people know how I really feel about them honestly.
My life would not be complete without my wife and children. My wife and children are magnanimous. They are each good souls and the love I have for them is unconditional. My wife is a strong, caring, selfless, faithful person. I could not imagine going through this without her. My daughter is focused and determined and my son is an intellectual sponge. I am so proud of both of them.
My family is such a gift. My father, mother, and grandparents were huge inspirations to my entire family and we have tried to follow in their footsteps and honor their memories. My father and grandfather regularly performed free surgeries for people who could not pay, and when my grandfather died, there was a line of people three city blocks long for his wake because of the man he was and the people he served. My siblings always tell me that our dad would be proud of me now. We all revered my father and it is a great honor that they say that. I love and cherish each and every one of my siblings. They each played a different role, and they each had something unique to offer. My life would also not be complete with my siblings.
At one point during treatment, whenever I swallowed, it felt like I was swallowing glass, and I could not eat. I would not wish this treatment on anyone, but I had people around me who kept encouraging me and telling me that I could make it. I did make it through the treatment, and the treatment did what it was supposed to do. The tumors shrunk and after the pain of the treatment went away, it allowed me to live, and live well. For anyone going through a very harsh treatment, you can make it through, and it is worth it. There are people at the hospital, online, or among your friends and family who can cheer you on. I always try to remember the quote from Friedrich Neitzsche, "He who has a Why to live can bear with almost any How.”
Prayer and faith did not make things easier in my life, but they made things possible. My faith made it possible for me finally to let go and trust my team to do the work. I face future treatments, but I know the outcome is in God’s hands.
My advice is to get engaged with life, take time for reflection, learn to enjoy whatever you can, and try to make a contribution. Remember that family is gift. Time is a gift. Faith is a gift. All is well in the end. If all is not well, it’s not the end.
