Inspirational Stories

It was December 2006. I was 28 years old, and I discovered some purple bruises on my leg. I had never seen anything like these on my body before, so I went to my primary care physician. He took some bloodwork, then called me to say I needed to go to the hospital at once. My parents’ friend drove me and my parents to the hospital, and I ended up staying at the hospital for four days.

It was discovered I had 400,000 white blood cells in my body; the normal white blood cell count in a person is between 5,000 and 10,000, so this was way off the charts. While I was in the hospital, I was diagnosed with chronic myeloid leukemia (CML). Every human has 46 chromosomes, and each chromosome has a number. When you have CML, chromosomes #9 and #22 fuse, and they create a new chromosome that’s called the Philadelphia chromosome. That’s what causes the white blood cells to increase.

While I was in the hospital, they did leukapheresis on me. This is a process where they use a machine to filter out extra white blood cells from my body. They had to do this several times to remove hundreds of thousands of white blood cells from my body to get the count down to a normal level. My oncologist, who I still have to this day, prescribed me Gleevec®, an oral chemotherapy medication that would cost thousands of dollars if I didn’t have insurance coverage. I had no side effects thankfully. 

After a number of years, I had to switch medications because the percentage of leukemia cells in my body was going up. Next, I tried another oral chemo medication called Bosulif which made me vomit excessively. Luckily, there are several options available for oral chemo medication for CML that have been developed over the years since I was diagnosed. Now, I take Sprycel® which works great for me. I have no side effects for which I’m extremely grateful.  

When I was diagnosed, I really didn’t change how I lived or viewed my life; this came later in 2021 when I found out that I was cancer-free. I think the reason is that I was blessed to not feel sick while I was in my cancer treatment, even when I was in the hospital, except maybe feeling a bit tired. I know many people do feel sick from chemotherapy, radiation, etc., but that wasn’t my experience in my journey, in my story.

When I found out I was diagnosed, I was surprised. Maybe I shouldn’t have been because there’s so much cancer in my extended family. All my grandparents have passed from cancer, and other relatives have passed as well, but there are survivors too. When I was diagnosed with cancer, the only thing that I knew specifically about leukemia was that a child who was in my elementary school had died of it. That’s all. So, it was scary. My initial reaction to being diagnosed with cancer was shock, and then, “What do we do now?”

I am blessed to have an extremely supportive family; my mom, my dad, and my sister Eileen were all at the hospital with me. I remember feeling extremely overwhelmed just by the idea of what cancer might mean and not knowing the answers right away. My mom had worked at the hospital where I was diagnosed, Westchester Medical Center in Valhalla, New York, and was a public health nurse her entire career, so that was extremely helpful. My dad, too, was so supportive (and he has almost always over the years met me at my oncologist for appointments; we joke about him bringing tuna fish sandwiches because he used to always bring them, and I got tired of them after a while, ha, ha). Eileen was great about asking a lot of questions when I was in the hospital.

When I was diagnosed, we were trying to decide on a treatment plan. I remember they wanted to put me on a clinical trial that had not been tried on anybody else before; we didn’t end up going that route. 

There are hard decisions that come up when you're diagnosed with cancer. 

When I was diagnosed, it was only a few months before I started dating my now-wife Joy. Joy found out I had cancer by seeing an appointment slip for my oncologist on the refrigerator (whoops!) I remember she asked me about it at 1:00 a.m. on a phone call. When we started dating, she worked during the day as a teacher, and I worked the night shift at a newspaper in New Jersey. So, I ended up telling her I had cancer on the phone in the early morning hours. Not exactly how I pictured telling her I had cancer. We got married in 2010, and we ended up having two girls. But first, we asked the oncologist if having children was even possible with me having leukemia. He had told us that if you’re a woman, you should not try to get pregnant while being on oral chemotherapy medication at the time, but he had not seen any scientific studies about men. He had only heard of successful anecdotal studies to go off of. Now, Megan and Katelyn are both healthy, growing girls.

Another hard decision that came for me with cancer was deciding when to tell our children that I have (or had) cancer. I was never sick in my cancer journey, so it was never obvious to Megan and Katelyn. As their dad, my initial reaction was to protect them and not tell them I had cancer unless I absolutely needed to, and Joy agreed.

Fast forward to 2021, in June I shared my cancer story for the first time, and in December, I surprisingly found out that I'm cancer-free. There’s a genetic test that the oncologist does every so often to check how many leukemia cells are in the body, and I found out from my oncologist that the previous four tests showed that my levels were all going up (I didn’t realize that), so the next time I went, I was really freaking out in my mind. There are other chemotherapy pills that I can switch to in case the numbers go up, but I was worried anyway. The day after I got home from the oncologist, he left me a voicemail saying I had no more leukemia cells. I was in shock. It took me quite some time for it all to sink in, weeks at least.

My kids now know that I’ve had cancer. My perspective changed when I had a pre-interview with one of our guests on Showing Up: Perspectives on Cancer. Our guest said, “Tim, you’re a cancer warrior, and your kids need to know that.” That night, I told our children that I had cancer. Megan, our now-11-year-old, just looked at me with curiosity. Katelyn, who’s now eight, just carried on being her silly self, not realizing what I was really talking about.

I’ve struggled over time with what to “label” myself or if that really matters ― cancer survivor, cancer warrior, cancer fighter, etc.  I use the word cancer warrior because my guest used that word in the context of our conversation.

Each of us has our own stories and our own reasons. One month before I found out I was cancer-free, I co-created a show called Showing Up: Perspectives on Cancer, a safe space where cancer survivors and cancer supporters come together to share their stories and connect, as well as find resources that provide healing, hope, and resilience. When I found out I was cancer-free, it made me want to make even more impact in the cancer community. In February 2022, I came up with an idea for a day-long, in-person event related to Showing Up: Perspectives on Cancer (the event that was held in Pennsylvania was successful and brought people together from around the U.S. and even Canada to share their cancer stories, feel inspired, be supported, and have fun too). On that day, we also live-streamed the first-anniversary episode of the show with a live audience.

In 2023, I am founding a Showing Up 501c3 nonprofit organization to continue to encourage cancer patients, survivors, and supporters to show up, share their cancer stories, help heal themselves, inspire others, and show up in other ways as well. None of this would be happening, though, if I didn’t show up and share my story.

I had been wanting to give back to The Leukemia & Lymphoma Society (LLS) for several years. I had been in conversation with them about becoming a candidate for their Man & Woman of the Year (now called Visionaries of the Year) 10-week philanthropic competition, but I had been having some non-cancer health issues that prevented me from doing it for several years, and then 2022 rolled around, and I expressed interest again. This time was different. Because of the pandemic, I had built relationships with live streamers from around the world. This time the campaign actually happened. I said yes, and I had an amazing volunteer team. We decided the main way we were going to raise funds was through livestream fundraising which is something I love to help my clients with as well. So, we held two livestream fundraising events called Open Your Hearts & Wallets, a 24-hour one and a 12-hour one. We ended up raising $8,000 between the two fundraisers and 36 hours of cancer awareness. We had cancer patients, survivors, and supporters share their stories during all of those hours in conversation with our livestream hosts who were everywhere from Alaska to Canada to the United Kingdom. I also won the Mission Award from LLS for the 24-Hour Open Your Hearts & Wallets event. This award would not have been possible without my volunteer team and livestreaming team. Shout out to all of them! Over the 10 weeks of the campaign, including the two livestream fundraisers, we raised $15,000 for LLS in total.

By sharing my own cancer story, it has connected me with other cancer patients, survivors, and supporters. It has inspired others to share their stories. It feels therapeutic for me in a way. It provides a sense of healing. Other cancer patients have told me that my story has given them hope. So, I encourage you to share your cancer story too. You don’t have to share it all at once. Share the parts that you are ready to share when you are ready. Heck, I didn’t share my cancer story until almost 15 years after I was diagnosed. By sharing your story, you are giving others who are going through similar situations hope, that others in the cancer community will be able to relate to you, will connect with you, and you will inspire other cancer patients, survivors, and supporters to share their journeys too.