Saturday, February 28, 2009

Has America lost her way?

George Washington said that "America, under an efficient government, will be the most favorable country of any in the world for persons of industry and frugality". I sit here watching news shows talk of ever increasing government and taxes...change no one should believe in! Character is a combination of qualities or features that distinguishes a person but we have been told to look at someones style, the way they walk or talk. This past year, more value has been placed in how a person speaks that what he says . Words matter, character matters....Did those who voted for "change" really vote for more of their labor to be taxed? For government to grow and our freedoms to shrink? Our great nation was founded on Christian principles, this cannot be argued with, but when we are losing sight of that.
James Garfield said "Now more than ever the people are responsible for the character of their Congress. If that body be ignorant, reckless, and corrupt, it is because the people tolerate ignorance, recklessness, and corruption. If it be intelligent, brave, and pure, it is because the people demand these high qualities to represent them in the national legislature. . . . [I]f the next centennial does not find us a great nation . . . it will be because those who represent the enterprise, the culture, and the morality of the nation do not aid in controlling the political forces. AMEN

Curves ahead

In the particular trial that I am in, you get randomized to either the surgery or chemo (best alternative care). They do this literally like a flip of the computerized coin to ensure that the data is not taited in bringing an experimental drug or procedure before the FDA for approval. My trial is an experimental surgery, more on that later. I wanted the surgery, I thought, but i had just had 2 surgeries to remove my right eye and residual tumors 3 weeks earlier and was already tired of the experience. My coin flip gave me chemo treatments to start, Temodar, 5 days of pills. I went through 2 cycles and that was enough! Sick to my stomach all day, but no hair loss. I went back to NIH/NCI for my 30 day tests in December, 7 days removed from chemo and 4 days before a Christmas skiing trip scheduled 5 months before. It was also the first trip that I went without Terri, we had decided that she would stay home with the kids and get us ready for our skiing trip, it is usually a 3 day round trip to NIH. I had expected to get the test/scan results from Dr. Hughes as before, "liver is getting a little worse, so let's get this surgery scheduled" kind of thing. When she walked in the exam room with the other interns I knew something was up.....drum roll.....cancer has spread to my brain, the cerebellum to be exact, that part of the brain that controls motor skills and balance, kinda of important! I was numb and alone, or was I? I immediately called Terri to break the news. It is what it is, I have begun to say. The discovery caused pause for the liver surgery, as the brain became the priority. The plan was to explore surgery options but wait another 30 days to get a another set of test/scans done so as to chart this tumors growth. Colorado would be coming just in time! Christmas was indeed special this year. In January, I returned with Terri, for the monthly tests/scans with great anticipation. The tumor was again confirmed but had grown, that brought in the radiation oncology folks headed by Dr. Kevin Camphausen. The plans was for us to return in 3 days and have Stereotatic Radiation brain surgery. This is where the screw the halo to my skull ( I posted a pic on facebook) and yes it hurt, after they attached the halo they bolt the halo with me attached to the table for a scan then have a physicist program the computers for the procedure, about a 6 hour ordeal. That was just done on February 2, I still have indentions! I am leaving for NIH/NCI the first week of March looking for the tests to confirm a surgery success.

Friday, February 27, 2009

Wounded but Alive

Blind in my right eye since radiation surgery in 2000, life forced adjustments. Gone was softball and my love-basketball; those sports call for depth perception and a one eyed man struggles with that. But Golf is God's gift to us! But everything took getting used to: driving, walking in a crowd, literally things you think are no brainers became Oh Crap! But the years came and went to September of 2008. Again having headaches and pressure in that right eye and again a good friend, Dr. Shachar Tauber, another tops in his field doc, did the exam that showed something growing, but not BEHIND the eyeball. Confirmation came from Dr. Augsburger, cancer had returned and was growing..the plan became get the eye out and all attached to it before it could spread. The plan with cancer is always to run tests-CT scans, MRI's, PET scans, and blood work to make sure the cancer has not metastisized (spread) to other areas. The next week became a mental battle for sure...Why me AGAIN? Could it be more that just the eye? Surgery was scheduled with another friend (Favor of God) Dr. Matthew Kienstra to remove the eye. Literally 2 days before scheduled surgery the tests all came back: the cancer had in fact spread- to the liver. One of just a few incurable locations in the body! Suddenly the eye was not an issue. Leaving Shach's office that Friday was just crazy, Terri and I had been living in the "we've been wounded but we have survived and are alive" mindset, but now is was fight for your life. It was an incredibly long weekend, I literally searched for everything I could find about liver cancer, sobering for sure. With the help of great doctors, who are also friends, we decided that standard cancer treatment was not going to do anything (for liver cancer) meaningful, so an alternative was needed. Dr. Tauber called in the favors and it was determined that NIH/NCI, The National Institutes of Health/ National Cancer Institute in Bethesda, MD had the greatest chance of medical hope. At NIH, they do literally hundreds of clinical trials on cancers. Getting in is no easy task for sure, your disease has to match exactly what the are looking for in the specific trials, you literally make application with 3 doctors referals! After more tests and weeks of waiting word came that I was "invited" to come to NIH and be examined to see if I would be accepted into the particular phase 3 trial we identified. I believe in the Favor of God, I know he showed me favor in getting accepted at NIH, but you only get accepted if it is a bad deal. I started treatment at NIH in November of 2008. The regiment consists of CT scans, MRI's, bloodwork and exams, literally spending 10-12 hours in the hospital. That is done every 30 days with bloodwork done everyweek. I should mention my doctor at NIH/NCI is Dr. Mary Beth Hughes, she is good. Our ways are not His ways, and our thoughts are not His thoughts!

It all started...

Cancer first affected my life in high school when my friend, Andy, was diagnosed with the disease and later died from the treatment. Being young and even ignorant of the disease it was somewhat dismissed as a freak thing but very real in life -death issues. But when my grandfather, Jack, was diagnosed with cancer 1998/1999 that hit a lot closer to home,being older helped. He was a smoker, so lung cancer was no stretch at all to grasp, it was painful to watch and the search for treatment and the lack of understanding that we really have about cancer was eye opening. Thankfully we had moved back to Cincinnati in 1997, so spending those last years was truly priceless. I remember the day like it was yesterday- a snowy Saturday in January 2000. I had been having blurred vision in my right eye and headaches, but hadn't told anyone. My friend, Ron Warnick, came into the dealership and immediately noticed a problem with that right eye. Ron is Dr. Warnick, one of the top neurosurgeons in the country. He did a quick exam, called a eye doctor friend and off we went to his office. Upon further evaluation, it was determined that I had a tumor IN my eye, between the eye wall and retina. It was a long weekend and that Monday Dr. Warnick got me into see another friend of his, Dr. James Augsburger, another tops in his field Dr. His specialty was eye cancer and he was also in Cincinnati! Favor of God for sure! His exam confirmed the tumor and the large size, a plan was set: Radiation Plaque surgery. They literally sewed radioactive gold plated "seeds" onto my eyeball and placed me in a special lead lined room for 5 days, from where I watched the Superbowl. The procedure was to kill the tumor and it would shrink to an insignificant size and die. The surgery was fairly successful, the tumor did shrink, but I lost complete vision in my right eye. Follow-up exams for the next 2 years showed shrinkage, the greatest fear is that the cancer returns in the first year. So I was out of the clear, right?

The Journey...

Life is a journey. Along the journey we encounter a wide range of emotions, mountains and valleys, victories and temporary defeats. I started this blog to update those of you interested in my journey. It will be updated with my latest health news, my latest politcal ramblings, and notes about the journey. Remember, sometimes we are headed to a certain place and along the way detours and destractions will slow us down or even delay us, but it is in those times that we learn who we are!