Stories of Hope

Jan, Non-Hodgkin Lymphoma Survivor

Jan, Non-Hodgkin Lymphoma Survivor

We had been living the American dream. I married my college sweetheart, Michael. We have an awesome son, Ethan. Mike and I have run a successful small business for more than 25 years, producing business meetings and special events.

I love being active and studied martial arts, and in April 2015, I  was accorded the honor of achieving a 3rd degree black belt in kenpo karate. But the following February, I started experiencing pain in my left shoulder blade, and as the months went on, that pain grew increasingly worse. Eventually the pain went across my back, up my head, down my arm, down my back and across my chest. I went back to the doctor multiple times. At first, I was told I had cracked ribs.  Next, I was told my shoulder was injured. Then I was told I should consult a rheumatologist, for who I couldn’t get an appointment for months.

It wasn’t until more than two months later, after I coughed and experienced what felt like lightning bolts down my legs, that suddenly my legs weren’t working right. That got everyone moving. Multiple scans, tests, and doctor appointments quickly ensued.  We were stunned when I was diagnosed with aggressive stage IV non-Hodgkin lymphoma that had invaded my neck, chest, armpit, and spinal column. I went from running the business with Mike and studying for my 4th degree black belt to needing a walker.

We did 5 and a half months of intense chemotherapy and by intense, I mean every three weeks I did 96 continuous hours of chemo, as well as multiple injections to my Ommaya reservoir, a permanent port implanted in my head, to get the chemo to my spine. When that was done I did a round of high dose, high risk chemo, a four hour infusion, which required me to be hospitalized for five days. When that was done, we did almost a month of proton radiation.

I was pronounced in remission. I AM HERE.

It wasn’t until about a year after finishing treatment, when I complained about what I felt to be my lack of speed of recovery to my oncologist Dr. Shah, that I was told just how close we had come to losing it all.

I was told that when I was first diagnosed, my file got dropped on his desk at 8:30, by 8:45 the partners had met about me, by 9:00 they were on the phone, to me, with the words: “Be in this office in one hour. Pack a bag, you are not going home. You are being admitted to the hospital directly from the office. We have to begin chemo today. We have to try and save your spinal cord and your life.”

Hearing those words, there was no time for fear or dread or panic.  There was only time for Mike and I to hold each other for a few moments, throw random clothes in a bag, and leave. By 10:00 AM, I was in Dr. Shah’s office; having never heard of him before. By noon, I was in the hospital. I was cycled through heart study, lung study, blood work, a PICC line shoved in my arm and by late afternoon, I was on chemo.

Our heads were spinning. But the speed was crucial because the consensus was that I was 7-10 days from being completely paralyzed and three weeks from dying. Of Dr. Shah’s entire career, I was his full blown emergency. But I AM HERE.

Just a year later, on our thirtieth wedding anniversary, I was here to play with Michael in Disneyworld like two little kids, just like we did on our honeymoon. In May 2022, I was here to dance, truly dance, with our son at his wedding as he married his beautiful bride, Marissa.

Coming out of treatment, I knew I wanted to do something to give what we now call “the Adventure” purpose, but I had no idea what to do. This was during the same time period when the United States House of Representatives was debating repealing the Affordable Care Act (ACA).  Then, I heard a radio interview with a congressman.  In the interview, he essentially said, “Why should good people have to pay for those with pre-existing conditions?”

That got my attention. 

That was the day I decided to become an advocate.  As an advocate, I meet with state and federal lawmakers on legislation that impacts cancer patients and their families. I raise my voice to make a difference.

The first time I felt empowered over this beast called cancer, was the first time I walked up the steps of Capitol Hill as an advocate.  

During the worst moments of what we now call “the Adventure”, the mantra was Onward!  It is still Onward!

Thank you and Onward!