My 2022 Thoughts on Bladder Cancer Awareness Month

This year is my 5th Bladder Cancer Awareness Month. In August, I will be 6 years from my diagnosis. At this time of year, I go through a lot of thoughts.

I still experience some anger that it took me two years to get my diagnosis. Had that diagnosis come any later, I would probably not be alive now as I was so close to being diagnosed at stage IV and receiving a terminal diagnosis. I still experience anger that I am five years from active treatment. Yet, I am still dealing with ongoing side effects from the treatments - including but not limited to neuropathy and fatigue.

However, I am not a person that easily holds a grudge.

I redirect my energy

Instead of holding onto that anger and internalizing it, becoming enraged and bitter at everything in my life, I redirect that energy. I turn that energy into advocacy and education.

I redirect that energy into my career - which has changed courses after being influenced by my bladder cancer experience. I redirect that energy into helping new and old friends connect to various resources within the young adult cancer, bladder cancer, and ostomy communities. Assisting others to connect to the right resources helps me heal and helps them get the support they need.

Remembering Curtis

When Bladder Cancer Awareness Month rolls around, I also get a little sad.

It reminds me of my friend and former BladderCancer.net advocate, Curtis. This month reminds me that he is not here to celebrate life or educate and advocate for bladder cancer and men's health issues. He was a kind human who loved life, people, and animals to the fullest.

Curtis was so passionate that he started a non-profit organization to raise awareness and educate people about bladder cancer. Unfortunately, since his death, it has gone inactive.

I hope that one day, his family will pick up his passion for making a difference for those with this disease so that they will either get things going again or pass the baton on to his survivor friends. Thinking about how the organization he put his heart and soul into folded so quickly after he passed also makes me sad.

However, despite any negative or down emotions, I feel in May since my diagnosis in 2016, I still feel many positive emotions as well.

Opportunities to share and educate

I get excited because Bladder Cancer Awareness Month typically gives me more opportunities to share my story and educate people about bladder cancer. I get to write about and talk about bladder cancer in different ways and get the information in front of audiences that don't typically see my bladder cancer writing.

I get excited because I get to have deep, authentic, enlightening conversations with friends and family by opening up my life to their questions about what life is like to be a young adult bladder cancer survivor and what survivorship is like post-bladder cancer with a urostomy.

Getting them on the same page with my experiences really helps them to be more understanding when I need to cancel things due to pain or fatigue and enables my support circle to be there for me when I need them most, in the ways I need them to be there for me.

Don my favorite awareness month gear

I find joy in being able to pick out new bladder cancer gear to don as I make my social media posts or participate in virtual awareness walks. As someone who has transitioned into working from home full-time and permanently, I have the freedom to dress comfortably and wear my awareness shirts daily.

They get a lot of love, and my oncologists always get a kick out of seeing what I'm wearing when I have my appointments.

I am hopeful about the future when I acquire a proclamation or have an opportunity to share my story with my government representatives. Doing these small things can often lead to more significant, systemic changes like expanding coverage for cancer screenings and urinary (or fecal) diversion supplies.

Celebrate life

I take the brilliant opportunity to celebrate life. In 2018, a little more than a year after I finished treatment, I celebrated life by attending my first post-treatment concert and seeing Arrested Development live at a small venue in the city where I live.

I had a great evening and supported one of the group members who has become a friend. I even attended the event solo and ran into a friend while there. Even if I don't do something huge or with a large group, I still celebrate.

Celebrating health and healing

I am grateful that I still have my life and that my quality of life has improved since I've healed from bladder cancer. Yes, I still have challenges to face that are cancer-related, but without life, I would not have anything to feel at all.

I am also grateful to have supportive communities of people in my life that understand and encourage me to do what I'm passionate about while helping people get through the experiences they are working through.

Bladder Cancer Awareness Month isn't just about me. It isn't just about those who are no longer with us. It is about humanity and letting people know the symptoms and the risks so maybe, just maybe, one day, far off in the future - other people won't have to experience bladder cancer.