My Story

"One day, the mountain that is in front of you will be so far behind you, it will barely be visible in the distance. But the person you become in learning to get over it? That will stay with you forever. And that is the point of the mountain."

— Brianna Weist

When I read my abdomen scan on the evening of Friday, January 29th I was scared. Most of it was highly medical but the terms “likely highly metastatic” and “20+ tumors across the liver” were pretty clear to me. On Saturday, January 30 at about 6pm the radiologist called to review my scans. She confirmed my fears and told me that they needed more tests and facts, and that a process would start Monday morning. It did. That Monday morning, at 8 am, a Liver biopsy, ultrasound and chest scans were ordered. It took until February 8th before we had a complete diagnosis of Diffuse Large B Cell Non Hodgkin’s Lymphoma Stage IV (it’s a mouthful).

After two months of not feeling well I first went to the doctor on January 6, then the gastroenterologist for blood work on January 21. I wish I would have gone earlier. Please listen to your body.

In the days following my first blood test I have been scared. Scared for my wife Amy and scared for my daughter Rachel. I also am uncomfortable with asking for help and I knew I needed it, and my family needed it, immediately.

The toughest call I ever had to make was a FaceTime with Rachel. I was vulnerable and afraid and I knew she could see that I was at a loss for how to comfort her. We didn’t have most of the facts yet and it was almost immediately that we shared the news with Rachel. She felt very far away, wanted to come home, but was surrounded by a great group of friends at college. She was now vulnerable and afraid. Like always Amy was trying to keep it all together. But, she was scared too.

In the hours and days that have passed I’ve spent a lot of time thinking about my fears (physically, emotionally, my family, insurance, my finances, all of it).

When I’m in a less emotional place I see that I’m not the first person, nor will I be the last, who experiences Cancer. In fact it’s touched all of us in some way.

There is a brother and sisterhood of people who have experienced cancer, and their love and candor has been incredibly helpful to me over these past months. Our family and friends have been beyond incredible by surrounding us with love. Every call, text, note, card, photo, and email. The beautiful flowers, music playlists, gifts and every gesture of compassion are so incredibly appreciated and lift our spirits every day. Mostly, what I feel is their love and them standing with me.

I am receiving incredible care and so thankful for my team at the Levine Cancer Institute. The nurses are my heroes. How they go from patient to patient and very tough situations one after another, every minute of every day and stay compassionate and so good at what they do is just incredible. I am grateful beyond words for my Levine team.

I've been told that my cancer is highly active and aggressive. I've also been told that it responds well to equally aggressive treatment and so on February 15, 2021, I began this part of my journey with a procedure and two treatments... 1) the surgical implanting of a Chemo port in my chest; 2) a 9.5 hour regimen of chemo called RCHOP, and 3) a lumbar puncture that removes spinal fluid and inserts chemo. Fast forward to June 3, 2021 (although there was nothing fast about it), I completed my 6th and final round of RCHOP chemotherapy. My journey continues though as I rest and wait for further tests and results of treatment.

So much goes through your mind at a time like this though. What I did know is that I would find real purpose in this chapter of my life. There is only so much Netflix one can watch:) Cooking shows and the Discovery Channel have been good respites. And, mostly music gives me strength.

Music has always been an incredible part of my life and during the last several months, I have never relied on music more. As friends made me playlists and sent music videos and individual songs to lift my spirits, I realized that what they were giving me was the gift of music. These gifts gave me enormous peace and joy during the roughest days of my life. So, in the midst of going through my cancer journey, my goal has become to help others who are on their cancer journey by bringing some peace and happiness into their worlds.

Thanks for reading about my journey. I’m now excited to learn about yours and the music that inspires you.

TPWK,

Kenny