“I realize that there is no avoiding death from this disease, so I plan for its eventuality but I refuse to stop living. Cancer does not define me.” James is a stage 4 kidney cancer survivor and this is his story.
I was a healthy and active 64-year-old preparing to retire. I was slightly overweight but working to lose it when I developed pain that I thought was sciatica. The pain became debilitating to the point where I had to borrow crutches to walk, before they finally scheduled an MRI and found cancer. I was diagnosed with stage 4 RCC with a 3.5cm mass on my kidney, a 10x8cm tumor on my Iliac bone and a 6mm tumor on my scapula.
I blame the doctors that missed this cancer when it was screaming at them “I am here,” with pain, rigors, and hospitalization for incarcerated hernias and cellulitis. I went to my PCP, a physical therapist, a chiropractor and an orthopedist who all missed this. I no longer have malice but I don’t forget their mistakes either. I trusted them.
I was diagnosed in October of 2016 and had my partial nephrectomy in December of that same year. In January of 2017 I had a failed resection to remove the Iliac bone in its entirety. I was told that removing the tumor was the only way to cure this disease. When that surgery failed and I was told that radiation would not work on this type of cancer, I was devastated. I was not however defeated. I did my own research and read about new types of radiation that did work on RCC and I found three places that would do the procedure.
This has led to a new understanding of the medical field where I am my own advocate. I read scan reports and trend blood work so I can look for anomalies myself. If I see something that I do not understand or looks wrong I ask questions until I’m satisfied with the answers. If a doctor says it can’t be done, I look elsewhere and I have always found exceptional doctors who say it can.
I thank the surgeons I have met along the way for removing the tumor on my kidney and believing in my fortitude enough to radiate and place the screws in my iliac tumor. This has kept my bones from coming apart and kept me out of a wheelchair. I also thank the naturalists, nutritionists, lymphedemist, palliative care physicians and finally the oncologists who have managed my disease and its numerous side effects.
I now live an almost normal life, restricted only by my own actions as I cannot seem to understand that I am limited. This drives my wife crazy. She has had to pick up a lot of the things I used to do while she nurtures me and pretends that she isn’t scared. She is truly amazing in her ability to keep moving forward, even while managing her own anxieties, and this motivates me to do more.
None of my long-term plans have changed but they do now include twelve-week scans, visits to New York City to see my doctors, visits to the hospital for infusions and pills, lots of pills.
I read SmartPatients stories every day and I realize that there is no avoiding death from this disease, so I plan for its eventuality but I refuse to stop living. I will ride motorcycles & fast cars. I will boat and jet ski. I will travel, laugh, love and cry. I will help others where I can. Lastly and most importantly, I will love my family and the friends that have stood by me through this emotionally draining ordeal. When this disease does make me stop, so be it.
But until then I will live.