Holly and Joe share a story that is familiar to many of us who have experienced a kidney cancer diagnosis. Delays due to the wrong tests, referrals for complications. But also what it means to patients when doctors communicate effectively and when nurses go above and beyond to save Christmas. Holly and Joe – we are all here cheering you on!
Our story began in December, when my husband Joe called me up to the bedroom to say that he had blood in his urine. I immediately thought we should go to the ER thinking he had kidney stones. Needless to say, that’s what I was hoping for, because it never occurred to me that he had cancer. At 2:00 am after four hours in the emergency room, the doctor came back to let us know that there was a “lesion” on my husband’s right kidney. Not knowing what he meant, I asked him if he thought it was cancer and he said that it very likely was.
The ER doctor admitted my husband to the hospital and he was given a number of scans and tests. One question we kept asking was, why did he feel so out of breath? The doctor in charge told us that it would resolve once he had his kidney removed. However, the nephrologist on the team was urging that they do another scan – one that used contrast, but the other doctor said it wasn’t necessary. Even though my husband could barely walk and was constantly out of breath, he was discharged and we were told to come back a week later to meet with the surgeon.
The following week, we went back to finally get a contrast scan and meet with our surgeon. At this point, my husband was so out of breath that I had to use a wheelchair to get him to the appointment. We were ready for the surgery and to move on with our lives. But, when we walked into the doctor’s office, he looked at us and told us that he couldn’t do the surgery.
I was so shocked, I just started to shake uncontrollably. The surgeon explained that the tumor was much larger and that it was invading the vena cava – a very dangerous situation. He told us that there were only a handful of surgeons who had the experience to tackle such a tough surgery – but that one of them was located nearby. My heart just sank into my stomach…..I did not know what to think except for…..”This is it.” I thought my husband’s life was over…..my heart was broken. I did not hear anything else the surgeon was saying. The drive home was dead silent as I was driving and we were holding hands. I apologized to Joe, telling him I just did not know what to say and began to cry.
When we got home, we told the kids what was going on and we all cried. Then we got a call from our new surgeon, Dr. Simon Kim. He explained to us that he wanted my husband admitted the following day and that he had seen his scans. He told us if Joe had any chest pains, we should go to the ER immediately. As my husband sat down, he started to get nervous, which of course made his chest hurt. We called Dr. Kim and he admitted my husband that evening. The following morning we met Dr. Kim. He explained the situation to us, even drawing a picture to show us what he was talking about. Dr. Kim did such a good job communicating to us and that really helped give us a lot more confidence before going into surgery.
Because of the timing of the surgery, Joe had to stay in the hospital for Christmas. The night before the surgery, the nurses on my husband’s floor brought in food so that we could celebrate our own Christmas together. I’m still so grateful to the nurses at Seidman’s hospital.
On December 22, 2016, my husband went into surgery. Although it took much longer than they expected, Dr. Kim was able to remove the entire tumor, including the “thrombus” that was extending into the vena cava. It was the best Christmas present I’ve ever gotten- even though Joe does have a 43 cm scar!
Joe has some nodules in his lungs and we’re going to start high dose IL-2 on April 10th. I’m so grateful to Dr. Kim and all of the team that have treated my husband. I’m also grateful to the friends I’ve met on-line through Cancer Connect and the Kidney Cancer Facebook page. They’ve shared information and given me the support I need. We are staying positive and hoping for a happy ending!