I never thought I would be sharing the story of my metastatic RCC diagnosis. I am a quiet guy regarding personal stuff. My wife has always been the social media junky who shares the family’s triumphs, community festivities, and the kids activities with others ~ even strangers in on-line cancer communities LOL. But here I go.
Here is how my RCC journey began.
My name is Steve Block. I am 50 years old from Central Illinois. Prior to my cancer diagnosis I was a fairly healthy guy who worked a full time job in the insurance industry and umpired Baseball from ages 9-10 yr olds up to college teams. My wife is a school social worker.
Our kids are 21 and 24 and we were just starting to adjust to life as empty nesters. We were looking forward to retiring in the next ten years or so. But all that changed on May 20th, 2020.
That afternoon I began having extremely painful and bloody urination. Finally that evening I looked at my wife and said “I think we better go to the ER”. She was concerned, however, I think we both thought “yikes, this could be a dandy of a UTI or a kidney stone.” We had no idea the shock we had in store.
In the early hours of May 21st, 2020 – my wife stood next to me as I was told something that she now says are the words that you can never unhear: “You have CANCER.”
Since my wife knew many of the nurses on call that night she says that she could see the pain in their eyes as they looked into our room. They knew I was hurting, and we both were scared, and feeling alone.
Since COVID 19 was now impacting our world the next words out of the doctor’s mouth were, “We are going to have to transport him to another hospital by ambulance. And your wife isn’t going to be able to go”
How are people told this horrible news and then left alone to deal with the aftermath of such devastating news?
I spent the next day and half in the hospital having tests run, talking to doctors with masks, while trying to have my wife and children listen in on facetime. We tried to ask questions that we didn’t know to ask. We cried and called any friend we knew in the medical field to ask for advice and/or suggestions on where to go, who to see, and how to plan. We got good advice, bad advice, and all kinds of “I wish I knew what to tell you’s”.
We were finally given the name of an oncologist by our PCP. He was kind and seemed like he had a plan so off we went with our hopes and dreams placed in his hands. After countless tests, a biopsy, scans…. And yes then contracting COVID-19…We started treatment with Keytruda/Inyta (targeted therapy combined with immunotherapy).
The first round showed some shrinkage, however, during the 2nd round significant side effects lead to severe adrenal insufficiency and diverticulitis. Our second set of scans after this round showed some growth. I had such severe fatigue I slept most of the day and could barely move around the house. I lost a lot of weight and at the time I was feeling pretty bad. Although this doctor did a good job and did help us, we felt it was time to look into an RCC specialist.
We are now seeing an RCC specialist, Dr. James Hsieh, at Barnes Jewish Hospital/ Washington Univ. in St. Louis. We are very pleased so far. We have just started Cabo/Opdivo combo and side effects have been minimal. I am on a steroid for life now due to the adrenal insufficiency but it has helped give me some stamina and I am not as tired. As of now I still have my kidney. The goal will be that in 4 months if we continue to see more shrinkage the kidney will come out.
Throughout this all, I can’t say I haven’t asked the doctors “How much time do I have?” They usually respond with “We just can’t answer that. Without treatment probably not long. With treatment you may have many years.”