Where I've Been. Where I Am. Where I'm Going.

 

Where I’ve Been.

Where I am.

Where I am going.

This year, on Memorial Day Weekend, Covid finally caught me.

Comparatively speaking, I would consider it a relatively mild case. It affected me almost entirely in the head and I had few respiratory symptoms. In a week it was over, or so I thought. I began to experience a bunch of post Covid symptoms, like headaches, fatigue and even double vision, all of which put my week of Covid to shame. I did, however, rise to the occasion for my daughter's Samantha’s wedding in July, a perfect example of the power of joy and happiness. 

However, shortly thereafter I was once again pretty miserable on a daily basis. I tried to muddle through best I could, but it got pretty exhausting.

Eventually, after some trial and error, I got some prescription prism glasses to combat the double vision and generally started feeling better. I thought I had cleared the fence. However, some lingering headaches, which had also gotten better, brought me back to my doctor about a month short of my annual who thought it best I see a neurologist. I went to a neurologist who made a diagnosis that a nerve issue in my right eye was causing the double vision and headaches. Like the ophthalmologist he felt that a couple of months of wearing the prism glasses would likely rectify the double vision. As a precaution he sent me for a Brain MRI.

Now as my more humorous friends would note, the expectation would be that they find "nothing" up there, and I expected the same. So, imagine my surprise when the results revealed two brain lesions. Obviously, I was alarmed, but there were indications that Covid trauma could have caused the lesions. This would be consistent with the fact that I had taken the brunt of the sickness in the head and sinus area. Still, I agreed to a CAT SCAN referral, which I optimistically scheduled on my birthday, since I was feeling almost back to myself at that time. In fact, with the help of a physical therapist and time, I was no longer experiencing headaches, the eyeglasses had resolved the double vision, and fatigue had left the equation with time.

So, I spent an hour of my birthday getting a CAT SCAN the recipient of numerous birthday greetings through the technician’s microphone. Just about an hour after the exam I received a notification on my MyChart app that the test results were in. So, the first birthday present I opened this year... were my test results, which shocking revealed an apparent kidney cancer diagnosis. There was some indication that it had had also spread to some lung nodules as well as the brain. Happy Birthday!

Obviously, I was shocked and pretty overwhelmed. I found myself in semi-social media seclusion so I could get myself together and rally my troops. Debbie, the girls and my boys were my salvation during this time and kept me focused and determined to deal with this path I was about to take head on.

Cutting to the chase and sparing you the dozen or so doctor visits including a biopsy, over the next 6 weeks here is where I am at.

I have kidney cancer which they plan on treating with immunotherapy and targeted therapy over the next 2 years. After pursuing a couple of medical opinions, I decided to seek my treatment at Sloan Kettering.

This has obviously changed my perspective on everything. First and foremost, how family is everything, as it literally breaks my heart to have to put my family and my girls and my boys through this. Next, it reaffirms the importance of what we do as volunteers and supporters of the American Cancer Society and the difference we make and continue to make in the fight against cancer. The treatments that will show me the way did not exist when I first started fundraising 12 years ago. WE DO MAKE A DIFFERENCE. Finally, this has also given me new perspective on the patient experience. I have been blessed with the perspective, the support and the means to navigate this journey. Far too many have not.

I am not a particularly private guy but held back this info from everyone, including most of my extended family until I had some real answers. This is my way of starting to trickle out my experience to so many who matter to me and to the countless supporters who joined me the last 12 years in fighting cancer.

To my dear friends from the American Cancer Society. I turned to you immediately after receiving my gut punch. You helped me find calm in the storm and provided the guidance that I needed to weather its’ onset. From information regarding treatment, advice regarding finding the right doctors for me, to the calming assurances and friendly voices that made those first nights manageable. My 12 years as a volunteer was paid back that first afternoon when my world got turned upside down and I had friends and voices from the organization that I could reach out to for guidance. What has followed by way of an outpouring from all levels of the organization has left me in its’ debt for all times.

I am continuing to work on projects close to my heart, like my Relay Calendar, my TWA event, King of the Wing and First Lap. Sounds like a full plate for someone who is cutting back, but it is really just more evidence of how awesome I am.

I remain positive, determined and yes, a little scared. However, as you can imagine, I am ready to rumble.

Joe