I had a goal to be in better shape and good health for my 50th birthday and was feeling very good about myself after receiving positive feedback from my annual physical. Unfortunately, this feeling didn’t last very long.
Within the next month after my birthday, I had fallen a couple of times from blacking out after standing up too quickly. One morning I found myself not physically able to stand up from my work chair. After grudgingly agreeing with my wife and allowing her to call an ambulance, I found myself in the hospital with a hemoglobin under 7.
Turns out, I had a tumor in my duodenum that was causing internal bleeding. No big deal I thought, let’s fix it and move on and get out of the hospital as soon as possible. After numerous tests, blood infusions and dozens of shots, we really didn’t have an answer for what was wrong. At this point, cancer was not even a consideration in my mind.
That changed when a doctor came into my room and asked me and my wife to follow her to a private room. I have had these kinds of invitations before and whispered to my wife that something is not good.
When we got into the room – the doctor just blurted out that I have cancer. I felt all the wind being knocked out of me. Such a quick and simple statement, but it meant so much – a death sentence I thought. I couldn’t believe it.
I immediately felt regret and started to apologize to my wife for not being a better husband, father, not doing more with my life etc. Understanding what I was going to be putting my wife, family and friends through was the worst feeling in the world. How would I be able to tell me kids?
The next morning, all I wanted to do was get out of the hospital so that I could celebrate Christmas. As I sat in the room (I refused to wear to hospital gown so I could be ready to leave at a moment’s notice), the doctor came in again as I was alone, oh by the way, in addition to the kidney cancer, it’s likely metastasized into your pancreas.
Eventually I was released, which was a mistake since we had to call another ambulance to take me back to the hospital on Christmas Eve when I couldn’t stand or walk because the bleeding hadn’t stopped, and my hemoglobin was around 4. Not the best memory that I created for my kids.
It was sometime around then that I read a report that stated I had stage 4 cancer – I couldn’t read another report after that one. I really did not need to see the stage with its very negative stigma and perception, or to know how I was being classified or what the outcome might be based on statistics. For the most part, I didn’t tell anyone about the stage 4 classification, I didn’t want to make anyone feel worse than they were probably already feeling for me. This information was probably something my wife had to deal with alone since I didn’t want to talk about it, which was very unfair to her.
After the initial diagnosis, obviously I knew I had cancer but deciding how to fight it wasn’t as clear. In my mind, I didn’t care what we did, I just wanted to do something, anything to fix this.
The first doctor wanted to schedule a Whipple procedure as soon as possible. Even though removing a few organs would be an immediate change in my life – I was all in favor for it because I wanted to do something to fight. I felt doing anything was better than waiting and doing nothing. Thankfully, my wonderful wife and caregiver Anne, intervened.
By connecting with others through kidney cancer communities, Anne encountered KCCure and Dena Battle. She will not like to hear this, but Dena truly changed the direction of my life. She gave my wife, and therefore me, the strength to tell a Doctor no. She educated and encouraged us and helped us to get second and third and fourth opinions. Dena gave us hope and really changed my belief that this was a death sentence.
We ended up visiting MD Anderson and Karmanos, talked to Johns Hopkins, before deciding on the University of Michigan Cancer Center.
There were multiple treatment options for us to consider. But making the choice was easier this time because KCCure helped us to become empowered and educated. The combination of Yervoy and Opdivo wasn’t approved at the time. With guidance from KCCure, we reached out directly to the manufacturer, Bristol Myers Squibb. Through their foundation, we were able to get access to the treatment.
Nearly 3 months after my diagnosis, we finally started treatment. I couldn’t have been happier to finally be able to do something and fight back. I am very grateful for my wife and our team that we slowed down and took the time to explore the available options.
Fast-forward 2 years, 29 infusions, some radiation and hundreds of shots later; I am blessed to say that I have no sign of active disease. We have stopped treatments and are currently on a plan to perform CT Scans every 4 months and see what we see. If something is there, we will respond accordingly, if we see nothing then I can continue to move forward free of treatment. I relish this moment of complete remission!
This has not been an easy journey, I lost a few friends, struggled to continue working, still get frustrated with side effects and I don’t want to give the impression that it has been easy. A couple of things that have had the most impact – first and foremost my wife and caregiver Anne, I don’t know where I would be without her. My kids who never treated me differently. To KCCure and our amazing medical team, thank you for helping us to find the right treatment path. And of course, to my family and friends who have supported us and prayed for us. Once I really believed that the eventual outcome was in God’s hands and all I could do was control what I could control and be as positive as possible, it did get easier. Faith guided us through each and every day.
I recently started to question “why me” only after I received the no sign of active disease diagnosis from my oncologist, a little guilt, I guess. I now realize this is part of the plan and that this experience has changed the direction of my life for the better! I can say that I am very blessed and never take a day for granted! Blessings of peace and good health to all!
