Robin Martinez is the coordinator of communities at SmartPatients.com and has been counseling kidney cancer patients for over twenty years. Prior to launching SmartPatients, she was co-listowner for the Kidney-One mailing list.
When our son was five we decided to keep him out of kindergarten for a year. Good thing, because it turned out to be a busy year.
Literally at the last minute I decided to run for the Colorado House just because our party didn’t have a candidate. Of course my husband Luch (Lusindo) was my biggest supporter. One day after a couple of hours of stapling campaign signs to telephone poles, he picked us up and quietly told me he had urinated blood. Obviously that wasn’t good, but we had no idea how bad it was. His physical a few months before hadn’t shown any problem. He felt a little run down.
By the time he was hospitalized for thorough testing, I was very glad to have lost the election. All my time was now spoken for. But I wasn’t there when Luch learned it was inoperable kidney cancer. The urologist cried telling him he wouldn’t see more than a couple months of 1989.
Luch said he wouldn’t even have told us if it hadn’t been for his older son Ed. Sitting at the dinner table with his family, Ed had suddenly felt the need to leave and go to the hospital to see his father. As a result, he was there for the urologist’s pronouncement. When Roberto and I arrived a few minutes later, Ed took me aside to give me the news.
When Roberto rejoined me in the hallway he very seriously asked, “Is Dad going to die?”
Inside me I heard, “It’s very important how you answer this.” After a breath I said, “The doctor says daddy will die if God doesn’t give us a miracle.” We weren’t a very religious family, but Roberto dropped to his knees right there in the hallway and prayed out loud for a miracle. He rose fully confident God had granted it.
There’s much more, but let’s cut to the ending: We got our miracle. Instead of dying within a few months, Luch lived just short of 10 years. His tumor was operable after all. The whole hospital called him the miracle man, and our kind urologist was beaming.
When the cancer came back in less than three years, we had many further medical adventures. An internet friend guided me to the Kidney-Onc mailing list in 1997 when we needed more help. Within a few months I was volunteering as co-listowner there, working with the remarkable Steve Dunn. I stayed with it after Luch died. Hundreds of patients and caregivers added to our knowledge and experience. In 2018, I am still passing along what we learned. I tell people the experience is too expensive to waste.
The venue has changed to Smartpatients.com where I am privileged to work with thousands of patients and family members. Renal cell carcinoma has gone from one FDA-approved drug to 11, and from only a handful of clinical trials to over 100 at a time. The needs remain the same, as do the caring and cooperation. Fortunately, the hope is growing.
I hope you’ll come to Smartpatients.com if you find yourself in a similar situation. Our family didn’t get all the time we wanted together, but we did get enough time. I wish the same or better for all of you.
–Robin Martinez, still going strong
