If Fox can tell a story, so can I...
My story begins in 2003. My father was diagnosed with bi-lateral kidney cancer. Since my grandfather had died of kidney cancer, my father (who is a physician) suggested that I get screened. I mentioned it to my Doctor, but he told me kidney cancer is an environmental disease, and thought it was not nessisary. This repeased two or three times.
Fast forward to 2012...I was 48...I started to get night sweats and losing weight...lost 35 lbs without trying. In April, my doctor told me not to worry, I will be healthier for the weight loss. Then, on April 30th, in the evening, I had nothing to do. My baseball team (the Nationals) were off, coming back from a road trip where they called up a new rookie (Bryce Harper). With nothing to do, I did something stupid, and I ate poorly. At about 12:03 AM on May 1, I had severe abominal pain....I went to the bathroom, and every went fuzzy...
I woke up on the bathroom floor in a pool of blood and a lot of pain...and I was blocking the door with my body. I was taken to the hospital, where they decided I fainted, but why was unknown. They were most interested in the abdominal pain, so they did an abdominal CT scan. They could not find the source of the pain, but they did find a 6 cm mass on the upper pole of the right kidney.
I saw my doctor, then the urologist. Surgery was in six weeks. Hand assisted laproscopic radical nephrectomy. Before the surgery, they did a chest xray and some other tests; no mets...Surgery was hard...really hard. I developed an infection, and was in the hospital for 5 days. Surgery was on a Tues...I remember nothing from Wed...little from Thurs. Fri I started to feel human, and Sat my fever was down. Sunday home. Pathology report was good: stage 1, clean margins...I was told not to worry about the sacomatoid differentiation. I was told I was cured. I needed followup in six months. (WRONG!)
Healing from surgery went smoothly for the first three weeks. I was getting more energy each day...only problem was the wond was bleading a little. Then at about 4 weeks, when I had planned to go to work for about 1 hour, I had dressed, and I noticed blood at the incision...so no work for me. Then next day, the pain level got much worse, and I started a feaver...101, then 102. Surgeon examined me, and said he did not see a problem, I probably had an independent virus. Two days later, the 5"wound opened and was clearly inffected. I went to the ER. They were not concerned, but did a culture, and put me on antibiotics.
This problem resulted in another 5 weeks off work....I had to go to wound care specialists, and learned how to handle to would: something called inside out packing. It healed. But, the pain remains today, 2 1/2 years post surgery. And this had nothing to do with cancer...just surgery.
Fast foward...I was curious about genetics and kidney cancer...and reached out to an expert at the National Institutes for Health. They brought my fahter and I in for an evaluation. They did a series of tests, blood work, and genetic testing. The scans showed a clean abdomen, but a "neoplasm" in my lung. In all probability it was a met. NIH said they would treat me; they did more scans: PET & brain MRI. PET showed the mass was metabolically active; MRI showed I had a brain. Boipsy showed it was cancer, but it was not clear if it was RCC or a primary lung -- if it was RCC, then it is stage 4. The Dr also wanted me to have a nuclear stress test before the surgery..That showed heart issues, but I could wait to after surgery.
Feb 5, 2013, the mass is removed. NIH is an amazing facility. Truly a crown jewel in the Government. I was really impressed by the care there. The mass was a met of the RCC. So, I now had advanced kidney cancer, inspite of the initial path report for the primary tumor. I was told that the prognosis was not good, but at the moment there was no known active cancer. At three months and six months, nothing. The latter surprised me, as I had not been feeing well, with crushing chest pain. I went to my primary care physician (for the last time); he decided it was GERD. Two days later, we found out it was heart disease. Cardiologist put a stent in, and am good. But I fired the primary care doctor.
NIH is a federally funded facility. There budget was hit by sequestration and by the government shut down. In Jan 2014, they cut me out of the study I was in -- budget because of sequestations, and they wanted to use there resources for the sicker people -- I was NED. I found my new oncologist, Dr. Han Hammers at Hopkins. He has done nothing yet. I am approaching two years of NED. He tells me that is a big deal: with a sarcomitoid tumor, if it has not come back in two years, it probably will not come back; but they will continue to scan.
Emotionally, my makeup has changed. I used to be worried about everything. When I was told I had stage 4 cancer, I came to realize that my time on this planet is limited. I should enjoy today, and accept tomorrow. I am actually much happier with this new-found attitude. I think theropy would have been better than cancer, but...
I am working full time, enjoying my work. I am in constant moderate pain. I can live like this.
Now, other lession is: question your Doctors. Sarcomitoid is not fine. I probably was not Stage 1, but since they had only done a chest x-ray, they had not seen the met.
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