I found out I had stage 4 renal cell carcinoma (RCC) days after my husband died of esophageal cancer. I never felt so alone in my life.
I read the results of a chest x-ray that I had gotten on my six month check-up. Neoplastic abnormalities, including changes associated with metastatic disease. The silence made it hard to breathe. I buried my husband and went the next day for a CT.
I didn’t turn the lights off for days. I was afraid to close my eyes. I didn’t care if I lived or died. I just needed to live long enough to see my mom through her journey with uterine cancer.
I agreed to participate in an RCC clinical trial two weeks after my nephrectomy. I didn’t even know what the trial was accomplishing. I didn’t know about the medicines or anything. It was too strong and I ended up in the hospital four times. Luckily for me I was dropped from the trial. I tried to find information on the internet. It was very confusing. I didn’t have much time with mom’s treatments and mine.
Then one day, I stumbled on a support group and it changed my life. I posted something and someone responded back…. YOU ARE NOT ALONE. That statement from a total stranger jarred me back to reality. I started searching for answers. I actually had hope.
I tell everyone now that it doesn’t matter what you say to someone – just say something to acknowledge them. The words are immaterial. You never know what a person is going through. Be kind. It literally saved my life. I know people don’t know what to say. So I tell them ‘Hi’ is a good start. Join a group. Go out and breathe in some fresh air. I wanted to live.
Now comes the hard part. I have tried four RCC treatments so far and none have been successful. I thought the first one would kill me and I didn’t care. The second was a little easier on me, but still sent me to the hospital a few times. My third treatment was Opdivo. I just knew in my heart that it would be the one.
I started it and I felt great. I was doing things I hadn’t done in years. I went on vacation. I put on a few pounds. My hair grew back. I had lost about half of it with my clinical trial. Life was good. I was sleeping good. I had a setback when mom died. But I tried to not let my mental state affect my physical self. I never understood how connected the two are.
I went for my scans at four months after being on treatment and some tumors had really had a lot of shrinkage. Unfortunately a lot had significantly grown and I had new ones.
I was devastated. My mind took me to some dark places again. I felt so alone again. My mind was making my body hurt. I was in pain. But this time instead of going deeper into that darkness I reached out to others. I volunteered to stay two hours after my treatment and help with patients. I get them drinks snacks and heated blankets. I talk with them. Or I just sit with them and let them cry.
I realized that I may not have family in my life but I found I can make a new one with my RCC family and hopefully I will never feel alone again.
