Feb 22, 2015 Latest post:
Dec 16, 2018
Hello friends, and welcome to my site. First and foremost, thank you for taking the time to visit and for all your prayers and well wishes leading up to the creation of this site. Marsha and I have been humbled by the outpouring of support and encouragement and want you to know how much it means to us.
I’ve certainly visited these type sites before as I’m sure many of you have, but I never thought I would be creating my own, but here we are! I suppose things change when you learn you have stage 4 kidney cancer. I often get this question, so for those not aware, stage 4 simply means that the kidney cancer I originally had back in 2012 that was contained to the kidney has now spread to other locations, or metastasized.
I was initially pretty reluctant to create this site, but decided it was the thing to do for several reasons. Such as, sharing the same information with everyone at once, answering many of the frequently asked questions, doing my part to be an advocate for kidney cancer by sharing the information I've learned in case it might help someone else down the road, and just the overall benefit for our family to be connected to a “community.” Publically posting information about myself is not something I am used to doing…..heck, I really don't even do Facebook, although I do have an account with less than 10 friends. No offense to those of you who have friended me over the years and I have never replied! :-) But dealing with cancer is different. I don’t underestimate the positive energy that sharing or journaling my story may have on me and my family, not to mention the power of community, and most importantly, the power of prayer that comes from it. With that being said, we humbly thank for your continued prayers as there is no doubt that they have already had an impact on decisions made and the sense of peace to deal with all this.
As those of you that know me well can testify, I’m a research nut when it comes to most things. I will often wear a subject out with facts, data, stats,pros, cons, etc. Sometimes this is a good tendency to have, and sometimes maybe not so much. I personally think it’s a good thing to do when you are faced with fighting for your life. There are some schools of thought that say don’t get too into the weeds because quite frankly, once you have cancer that has spread, the facts and data are not too positive. But I believe it’s important to know what you are battling and dealing with as it helps in the discussion with doctors, helps to know how to listen to your body, and how to make informed decisions. As you will see in my journey thus far, the doctors give you treatment choices and you have to make your own informed decision on which to take. My first bout with cancer was so sudden and shocking, and came and went so fast,there was little time to think or research anything. In that situation, it was a black and white treatment plan to remove the kidney. This second go-around, I have had more time to learn additional information about my situation and how to go about defeating it, which has proven to be valuable along the decision making road.
As I already referenced, I first was diagnosed with kidney cancer back in June 2012 when lightning struck out of the clear blue sky. My health was great, never had any issues for 47 years, but I woke up early one morning to get to work and although I will spare you the details, I was severely urinating blood. Granted I was shell shocked and a bit nervous when it happened, but I was also stubborn and went on to the office to prepare for a client meeting later that day. I chalked it up and thought maybe I was dehydrated, so I started drinking a lot of water.When the blood did not stop, I knew something bad was going on and went to see the urologist around 3:30 that afternoon. At my age, they thought it was likely kidney stones, but I had the sense it was more than that. By about 4:45, I was getting a CT scan with the results expected the next day, Friday. I got home about 5:45 and by 6:00, my urologist, who is also a friend from church, showed up at our house. After sending the kids upstairs, he informed Marsha and me that the CT scan revealed I had an 11cm (bit larger than softball) renal cell carcinoma (kidney cancer) that had engulfed my kidney! Talk about a senses shocking numbing “kaboom.” My mind immediately went to my dad, whom had recently passed away from lung cancer that had spread to his liver with th elargest tumor being 7cm. I was shell shocked and numb to say the least when I heard mine was 11cm and knew then it had been inside of me for years, which the doc validated since kidney cancer is a fairly slow grower. He immediately ordered CT scans the next morning since there was a high likelihood it had already spread, but thank God it had not. So a few days later on July 3rd, I had surgery to remove the kidney. Thank God he gave us two kidneys as we only really need one! The surgery went great and the recovery was pretty easy. After the surgery, standard follow-ups for kidney cancer included getting CT scans of the lungs and lower abdomen every 6 months because kidney cancer often travels to the lungs if it is going to spread, so those days always came with much anticipation. Statistically speaking with my condition, there was about a 75% chance the cancer would not come back, so we all thought this bump in the road of life was past us now.
Kidney cancer occurs in about 60,000 people a year, men more than women, and represents about 3% of all cancers. The average age to diagnose someone with kidney cancer is 64, so having it in your 40s is pretty rare according to my docs in OKC and at MD Anderson. Kidney cancer can often be a slow grower, so although there’s no way to know for sure, they anticipate that the 11cm tumor had likely originated in me some 5+ years earlier. Kidney cancer often travels through your blood, so it can spread to just about anywhere on your body. Typically it spreads to the lungs, liver, brain, bones, etc, but can pop up anywhere your blood goes. Once it spreads outside the kidney cavity to other organs and locations, your chances at long time survival are significantly reduced statistically speaking. I won’t get into all the precise stats as they are not very encouraging, but there are plenty of exceptions to those stats and I aim to be one of them. Throughout some of my research and from having connected with others with kidney cancer, when the initial tumor is as large as mine was, most others in the same situation had discovered their cancer had spread to multiple locations as I initially feared. So given the time mine had been flying under the radar raging war inside of me, I felt pretty fortunate it appeared to not have spread outside the kidney cavity.
But spread it did……..late summer 2014, I developed a small knot on my scalp about the size of a pea or small marble. I thought it might be acne or something, so I let it go for a while. With no signs of going away, I went to a family doc who thought it was an ingrown hair. After poking it with a needle, he quickly discovered that was not the case, so on to the dermatologist. She thought it was a common angioma, no big deal, it could easily removed and was cut off a few days later. A week or so afterwards when driving back to the office from lunch, I got the call from the dermatologist that told me to come to their office ASAP. I already knew what that meant, the knot on my head had biopsied as renal cell carcinoma kidney cancer. Although somewhat shell shocked again, I had a hunch this calls was coming. I instantly knew that if it had spread from the kidney to the scalp, of all places, this was not good. In the days to come, I had a CT scan that revealed a small suspicious mass located on the inner right lung. Soon following, I was getting a PET scan, bone scan, and MRI of the brain in the weeks from mid November leading up to Christmas. Although we were pretty sure the mass in the lung was cancer, I had a surgery a week before Christmas to biopsy and confirm it was renal cell, which it was. It was then also determined that since the scalp tumor had been misdiagnosed, there could still be cancer remaining on my head, so I had surgery in early January to remove more of the skin and tissue from my scalp and sure enough there was still come cancer there that was all removed the second time around.
Since all the additional above mentioned scans appear to be visibly clear of more cancer, the diagnosis as of early February is the one tumor in my right lung. I emphasize visibly clear because the CTs and PET scans only pick up tumors about 1/2cm and larger. Therefore, although there's no human way to know for sure, it is highly likely that I have additional tumors possibly located in other areas that can’t been seen. There was much discussion, several meetings with docs and surgeons, and prayer regarding the course of action for the lung mass. The initial 2 treatment options were to take a targeted kidney cancer drug that may shrink the tumor or keep it stable for an undefined period oftime, and the other option was surgery to remove the tumor. Kidney cancer i sits own unique disease; therefore chemotherapy and radiation are not standard forms of treatment and are rarely an option. My decision was to be aggressive and have surgery to remove the tumor, but given its difficult location, that would have likely required losing 2 of the 3 lobes in my right lung and then hope the cancer did not come back in the remaining lung. I wanted the tumor out and got mentally prepared and was at peace to go forward, so we scheduled the surgery for January 20th.
But about 2 weeks before the surgery, I felt compelled to know more information, so I subsequently dug much deeper into kidney cancer research in general. I read all I could find over several days, joined the Kidney Cancer Association (KCA) and exchanged emails with other patients, researched clinical trials and watched online videos from a couple of kidney cancer symposiums from a couple of the major cancer centers in the US. One of the guys I met via the KCA had his lung removed and 3 months later the cancer returned in is remaining lung. After a week or so of research, I felt the tug to seek the opinion of MD Anderson where they see about 700 kidney cancer patients a year. At the time, I was also aware of a couple of other positive stories about MD. Therefore, I opted to postpone the surgery and set the ball in motion to go MD Anderson.
I will end the “Jeff’s Story” part there and will begin posting journal updates from my first visit to MD and forward.