November part 2

I just had my PET scan done. What a position in life when the good news is that the bad news is not any worse. Results show that I do not have any tumors that were not already known about. So I am counting blessings....Now I will enjoy Thanksgiving with family and see what game plan Docs can come up with to beat the odds. Faith, pray and encouragement from friends continue to help with the pain and frustration.
Let this Thanksgiving be the one where you truly realize what matters in life and give thanks.

November update

I just returned from NIH/NCI at the end of October. I went through the usual battery of tests and scans. This was to be the trip that the test would show if the brain tumor inflammation was going down enough to return to the PHP surgery regiment. After 2 days of tests/scans, I sat with Dr. Hughes to go over the results.
My brain tumor inflammation is in fact going down and the numerous tumors in the liver are holding, which is to say they are not growing or shrinking in a measurable way. Both items to be looked at in a positive light. But of course as has been the case with this disease, another tumor has been identified outside of the liver in the lymph node system in the area of the small intestine, stomach, pancreas, and liver. Once identified, they go back and re-evaluate the previous scans to see if it was there or is new. It did in fact show up on the previous scans. It has not yet penetrated any of those organs but it is growing at about 1.5 cm every 6 weeks and will need to be removed. I am waiting to undergo a PET scan so that it can thoroughly determine if I have any other tumors outside the liver. Intense abdominal pain as the tumor is pushing on the stomach, small intense, and liver. Constant high temperature and cold sweats and just a part of it all.
I hope that this difficult and uncertain time would encourage those who read to know Jesus & to cherish and value those people and relationships in your life because all the other stuff is just crap.

Oct/Nov Update

I am leaving this week for NIH/NCI for an additional battery of tests. These will determine the next course of action. Not been feeling good, with intense abdominal pain and fatigue kreeping back into my daily routine.....

October Update

The Latest....Since last round of testing the results show that my liver tumors (large & numerous) are about the same. This is mixed as PHP surgery has slowed their rate of growth but not their size or number. It is the brain tumor that is really not helping. The radiation seems to have just ticked it off, it has not reduced in size but has not grown either. The radiation surgery left inflammation that is prone to bleed out during the PHP surgery so it has left me with time, something not really known for with liver cancer! I am on hold with NIH/NCI while the brain tumor is monitored for a reduction in inflammation, once that occurs, it will allow me to have PHP surgery #2. The success of the clinical trial has been that you receive the PHP surgery every 6 weeks, I have seen a slight improvement in my fatigue and pain but brain tumor is preventing a second PHP at this time. Frustrating for sure...Thank you all for your prayers, this is a battle just can't afford to lose. So how was your day? Count those blessings people!

The 1 year mark...

August Update

August has been a pretty good month. Less fatigue and limited bed sweats, I regained some appetite and energy. The PHP surgery has seemed to work in the since that the liver tumors don't seem to be acting out as much. I am scheduled to return to NIH the first week of September, so we will get a good look at measured progress. It is definitely the mental aspect of cancer that is the biggest burden, and that continues to be a daily battle....fighting though is the only course of action. Thank you all for your prayers

June / July Update

Since the last post I hit that 10-14 day critical time head on. I did in fact have an immune system crash, white blood cell counts fell very low (prevents you from fighting infection) and platelet counts crashed (blood can't clot). So I had to avoid crowds, small children (not my own), and could not use sharp objects, because I might cut myself and bleed to death! I got weaker and weaker and then I had to start giving myself 2 shots a day of neupogen. The lowest point was having to go to St. John's emergency to receive a platelet transfusion. My platelet count fell so low that my Docs became concerned of a bleed out at the brain tumor location that had received the radiation. That was about a 5 day process. I began to feel better and got energy back so no more shots! I have felt pretty decent the last 2 weeks, best in a long time.
That brings us to July-I am currently at NIH/NCI and leaving for home in the morning. I arrived here on Tuesday to do testing and prepare for the PHP surgery #2 on Thursday. Tests revealed that the procedure appears to be working and is causing the tumors to loose some of their structure. This is good news. The reason for not having the second PHP is that stinkin brain tumor...MRI reveal swelling and inflammation, causing Docs concern about a bleed out during surgery due to receiving blood thinners during the procedure. So home I go encouraged about the liver, concerned about the brain, and waiting another 5 weeks for action...

May Update #2

It's Monday and today is release day from NIH/NCI, I have been here since last Wednesday. I underwent the "PHP" surgery on Thursday morning, then spent roughly 28 hours in ICU before being moved back to a regular room. The PHP surgery is for the phase 3 trial. An experimental chemo drug is put right to the organ. As you can imagine the phase 1 and 2 trials were lots of trial and error to see if the drug worked. The unique thing about this trial is the delivery system for the chemo. It is called the Delcath system. I had 2 catheters placed in my groin and 1 catheter on each side of my neck. Specialized Radiologists map the blood veins going to and from the liver, the insert platinum coils in the ones not needed. The catheters are in place to deliver the drug directly to the liver and then be brought back out of the body and the blood is filtered then placed back through the neck catheter, the blood is filtered for 5-10 minutes depending on clotting ability. As most know chemo drugs destroy cells, both good and bad, so this system has shown promise because it is only going to the diseased area. Always a chance some can get out into the blood stream.
As for my recovery, I have done pretty good. I was pretty drugged up and never have liked weaning off of anesthesia. The scariest moment might have been in ICU, they remove both catheters from the groin and one from the neck and apply pressure for 15 minutes to get blood to clot, ii was doing fine then about 30 minutes later my groin started shooting blood out. A moment of concern for sure but pressure applied again and it held. The next 10-14 days are the most critical as the platelet counts in all previous trial patients have fallen drastically, we will be watching this. I come back in 5 weeks to see if this treatment has done anything good. All the nurses and Doctors at NIH/NCI are great, as have been my docs at St. John's. other than that it is 1 day at a time. Thank you all for your prayers and support. Life is a journey, it is what you do along the way the matters!

May Health Update

As of this update I am at NIH/NCI in Bethesda, MD for the second time in 4 days, literally flying home to repack, do some chores and hang with the kids. My regular scheduled visit for testing has taken place. The liver cancer tumors are still advancing. The tumor in my brain has not advanced and the signs of hemorrhage have stopped to a point doctors feel good about. I am back for the second time to receive the PHP surgery as part of the phase 3 clinical trial I am in. So I have to have all the tests again and then right into surgery (4-6 hour ordeal) then recovery. This surgery is actually the only treatment showing progress for metastasized liver cancer, so I am hopeful given this disease has such a poor life expectancy.

April Health Update

Just returned from NIH/NCI (National Institutes of Health/National Cancer Institute) in Bethesda, MD (Metro D.C). I was there for 3 days of tests, scans, and exams. The cancer in my liver is still growing, in fact has grown 20% since my last visit! So that puts me in the column of needing to have the PHP liver surgery, which is the surgery for the phase 3 trial I am in. But, as all news on this blog seems to be lately, the tumor in my brain has not shrunk. The spot on my hip does not look to have changed. At this point, the SRS radiation surgery seems to have prevented it from growing anymore than last month, but the size is still the same and looks to have a hemorrhage area around the tumor. The PHP liver surgery is a major surgery and involves receiving Heparin, a blood thinner. With my brain tumor having signs of hemorrhage, this prevents me from getting the surgery because the blood thinners could cause a bleed out in the brain and I may suffer a stroke, not good. So looking for something positive, my brain tumor did not grow the last 30 days! So We will wait another 30 days to see if the brain tumor gets any better and have the liver surgery if it does and if it doesn't be faced with some more hard choices. As for daily activity, I still have all the fatigue, which for an active person like me sucks, 'cause I've got energy for about all of 4 hours of the day. I constantly run a high temp/low fever and seem to be getting more frustrated and the situation, but life isn't fair just full.
I appreciate all of you that read this blog for updates and especially your prayers! Life is not very fun right now, but I so enjoy my wife and kids. I deal with plenty of discouragement, questions, and doubt.....but The Lord is still in control.

March Health Update

I returned from NIH/NCI a few days ago. After undergoing the testing schedule and meeting with Docs, this is the latest.....My brain tumor has not grown, this is good news as it had been growing at a good pace the previous 2 months. My liver is stable, which in "cancer medical" terms means that the tumors are growing but at a slow pace. I still have the same symptoms/issues going on: fatigue and abdomin pain. If you know anyone who is fighting cancer, let me help you help them, this is a huge mental battle on top of the physical mess, specially if the cancer is terminal. You fight, cause that gives you time. The Lord does heal, and even if HE doesn't choose to heal me HE is still God! I will return to NIH/NCI in April for another round of tests.

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.

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!