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Patient Stories

Voice of Kidney Cancer – John’s Story

Kathy Sweeney Cunnius shares her husband John’s story.

My name is Kathy Sweeney Cunnius and I have been married for 23 years to my husband and my best friend. John never had an ailment during our entire marriage.  If he got a cold, that was a lot.  He did get shingles a few years back, and I said that’s shingles and he said no its not and waited a week to go to the doctor and guess what, it was shingles. I am the one with all the ailments.  I have CLL, Chronic Lymphocytic Leukemia, with some autoimmune disorders to go with it.  I always felt blessed that if I had to get cancer, I have one that can be managed.

Fast forward to the end of April 2018.  He started saying his hip hurt and he was limping.  At night he iced it and I even made some potions to put on it, because he went to the doctor and had x-ray and they said it was just arthritis.  Two weeks went by and the pain was bad, and he could hardly walk.  Our family doctor advised he go to the orthopedic doctor.  On the weekend of May 1st we were supposed to go to Annapolis to see his friend, as I said before John like to do everything and never cancels.  He called me at work that Friday and said, that we could not go to Annapolis because he could not walk. He also told work he could not come in the next week because he could not walk.

May 10th was the orthopedic appointment.  John was in so much pain and could not walk.  I had to work.  Around 11 a.m. I get the call.  He said, “You’re never going to believe this, my hip is broken, and I have to go to ER right now”.  I stood up in shock, turned my computer off and said, Johns hip is broken, I must go.

I arrive at the ER, and he is screaming in pain, it was awful.  To make a long story short, he laid in the hospital for 2 days before they could do the partial hip replacement.  He was in too much pain to get the MRI.  They tried twice without anesthesia and he could not lay there, so they finally put him under and did it.  He had his hip replacement on Saturday May 12, 2018.  The Dr was very apprehensive about the fact his hip broke with no trauma.  He said the bones looked fine during surgery. Then the day came that we were going back to the Orthopedic doctor to get the results of the bones.  It was the 3rd week in May.  We were nervous. And in came the doctor and I could tell something was wrong.

That is the day this Journey started.  He told us there were Renal cells in his bones.  I remember walking out of his office shocked and so numb I could not believe this was happening to my healthy Hubby.  I immediately started calling doctors, it’s a long story, but my local doctor got us appointments with the two best doctors in renal cancer at Sloan NYC, Dr Paul Russo, a surgeon, and Dr Robert Motzer a very well-known oncologist whose specialty is RCC.  When Dr. Russo met my husband, he was very apprehensive about doing the surgery.  His tumor was 6 cm and grew into the wall of his back.  Also, John was skinny and weak from the hip surgery. They told us to come back in two weeks to hear our options, but surgery might be out because John was too weak to have it.

Two weeks later we went back to the city to see both doctors again.  Dr. Russo came in and was amazed with how good John looked from two weeks ago. He said, Ok, my team and I came up with two options for you.  Either surgery or start treatment to shrink and then have surgery.  With no thought at all, we both said surgery.  Suddenly, Dr Russo opened up his laptop to the calendar and he said, I knew that would be your choice and there was John’s name on August 1st.  We walked out of there happy, feeling hope but very scared.

Surgery went well. John was a trooper, Dr. Russo said, he had to remove a lot of muscle from his back because the tumor grew into the back muscle.  John recovered very well.  In September we went back for the cat scan results he had gotten that month.  They told us he had some spots, very small, so they were going to start Opdivo/Yervoy.  And also the Xgeva drip for the bones.  Well it was disaster.  Johns creatinine started rising. Three days after treatment he could not walk, he was running a fever.  We ended up in ER.  The doctor stopped the treatment and put him on steroids.  He has been on steroids and they stopped the shot also and changed him to Zometa for the bones.

So, to end this long story, in November we went back and Dr Motzer said, enjoy the holidays, you’re on surveillance, the one treatment shrunk the mets in half.  See you in February. February came, and we went back February 5th, and one of the lung mets was gone and the others stayed the same from November. We are thrilled, and we are praying every day that John can live his life, and enjoy it. We are focused on going on vacation, trying to get back to a normal life which honestly with this disease we must live in 3-month increments. On May 25th, we take a well-deserved vacation.

God is good, keep on Keepin on!!!!  I know its going to be a fight but we are ready!!!!

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