I began logging this info on Friday, February 09, 2007

The What The Hell Is Next Award

I would love to hear other people’s stories or if you prefer applications for this award. The first seven paragraphs are background, the real action started in 2006. The things that happened were one right after another, no rest in between.

This is not about tragedy. Tragedy would be me having a son who I have not seen in thirty eight years. Tragedy would be me losing just about every kid that I grew up with in Vietnam. Tragedy would be me flying from the other side of the world and getting home ten minutes after my dad died, you never forget that you didn’t get a chance to say goodbye or I love you one last time. Tragedy would be me losing my mother and all three of my brothers in the span of three years. No this is about the humor that you have to see in the things that happen to you. Anyone who cannot laugh at themselves and what is happening to them is destined for a life of pain. I refuse to live such a life.

In 1948 and 1950 I was diagnosed as having Rheumatic Fever, that meant two years of bed rest. (Keep this in mind because it comes into play later). If you would like to try a test, tell your eight year old that he or she has to stay in bed for a year or two, no playing outside or anything like that. Then you and your spouse both go to work to pay all those doctor bills. Let me know how that works out for ya!

When I was thirteen, the doctor and my parents laid it all out for me.They had a list of things that I would never be able to do. If I did not abide by those rules I most likely would not live to see my thirty fifth Birthday. It took me almost twenty two years to do all the things on that list.
At thirty five I was ready to roll over and float to the top of the tank except for a couple of things, I was married to Linda and we had a great daughter and trying for another.

Back in 1999 and 2000 I survived Lymphoma. I did not go into remission; we killed the Bastard and kicked it out of my body.

Move ahead to 2003. I noticed that I had a polyp growing in my nose. No big deal, went to the doctor. The Head and Neck Surgeon gave me some spray to keep it under control and told me that if I ever wanted to get rid it, no problem.

Jump ahead three years to 2006. The spray wasn’t working so well now. Went back to the doctor, he says “No big deal, since we are going to rip it out, we might as well do a Roto Rooter job on the old sinuses.”

The sinus job would require me being put under for about 12 minutes, no problem, WRONG! Being put under requires an EKG which is reviewed by the Anesthesiologist. Something caught his eye. The next step was to see a Cardiologist. Many tests later, the nose job was put on hold until the go ahead from the Cardiologist. A couple of weeks later I come home from work with a bit of an upset stomach, most likely from the chili I had for dinner. This triggered me going into Atrial Fibrillation, a condition I have had for about 20 years or so. Most doctors and I related this to the heart murmur caused by the Rheumatic Fever (see I told you it would come into play). At about two AM I woke my wife up and we headed for the ER as I was having a bit of discomfort. This was old hat for me, a couple hours in the ER on oxygen and a saline IV and I would return to normal rhythm and go home. NOT THIS TIME BUCKO! For the first time I used the term pain, not a bad word unless you use it in the ER while they are checking out your heart. Just a clue, you don’t get to go home!

The Cardiologist comes in for a visit and lets me know that they had decided to keep me until they “Fixed” me. More tests, invading every orifice of my body, including some I didn’t even know I had. By this time my file was inches thick with hundreds of photos with all the circles and arrows. The image collection was equal to a 300 page Power Point Presentation that someone would send you at work just to piss you off. A week later they popped me into an ambulance, for the 40 mile ride to another hospital. The next morning I found myself in the presence of a guy they called “Razor Robert” who proceeded to shave most of my body. I was then hustled off to the Operating Room. It seems that my aortic valve and the trunk of my aorta had been severely damaged by the Rheumatic Fever and needed to be replaced or repaired right now!
This was still no big deal, four or five days in the hospital and then home for light exercise a bunch of naps and watching TV. (Perhaps on Krypton but not here). Several hours later, or perhaps the next day, (I wasn’t keeping track) I was awake and some dude was in my face telling me to cough so they could remove the throat tube. You guessed it, both lungs collapsed like somebody sucked the air out of a plastic bag. Trust me this is not something you want to be awake for. Something like having a catheter removed and then put right back in, that is another one I don’t recommend.

The next time I woke up, I had tubes running out of both sides of my chest under the arms and the center of my solar plexus. each was attached to a big filter, for the next week or so I had to drag those things with me when I went for my walks.

My lungs behaved themselves and they decided to take the tubes out. My right lung said “OK fine” the left one said “I don’t think so” and started to collapse. back in goes the tube. Oh Yeah, this is another one you don’t want to be awake for, trust me.

I think it was sometime around this time that I found out the full details of the surgery Linda clued me in. It seems that I am one of the lucky one percent of the population that had a two flapper aortic valve as opposed to a three flapper. This genetic defect causes the trunk of the aorta to bubble out. So short version, I had a ticking time bomb in my chest.
They replaced the valve with a clicking Saint Jude valve, repaired the bubble, plus repaired the Mitral valve and for good measure performed what is called a mini maze. The mini maze is a slice and dice thingy that helps with the A-Fib.

After another week or ten days my left lung decided to get with the program and the last of the tubes came out of my chest. Now the process of converting me to a blood thinner that I could take in a pill form, Oh yeah, I have to be on one form or another of rat poison for the rest of my life because of the artificial valve. After four weeks in the hospital, forty some miles from home, they were preparing me to go home.
During this time some side issues had been going on. First, Linda was exhausted from the drive seven days a week to sit with me and bring me real food and help me bathe. I don’t know what I would have done without her. Other things were going on, she woke up one morning and found the bathroom full of flying termites. So we will have to have the house tented.

One other thing that had been happening was that because of me being off of the steroids, my right eye had been slowly swelling. Within about a week my eye had swelled out and to the side, to the point that it was out passed the side of my head. I had also lost all vision in it. I kept it covered because I looked like that “Hey You Guys” cave kid from the movie Goonies.

The plan was for them to discharge me from this hospital and I would go see my Head and Neck surgeon to schedule the sinus surgery. One doctor did not like what he saw and gained access to my previous head scan and ordered another one.

The next day I found myself in another ambulance on my way back to San Jose and the first hospital. Suddenly my “Elective sinus surgery” had become priority A. The next week was filled with scans and tests.
The cardiologist had to sign off on it, more tests. At long last we were ready to go. They put me under and the surgeon removed the polyp, (Remember the polyp? That is the little somebitch that started all this.), he next opened up my sinuses, upper and lower. He saw something he did not like, (I get really tired of hearing that.), he took samples and backed out without touching anything.
By this time I had been in the hospital almost six weeks. The other
thing that bugged me was that now I could look out the seventh floor window and see the left rear fender and the back bumper of my Durango in my driveway, seven blocks away. That really hurt, being that close and not being able to go home.We now had to wait for the samples to be processed. The surgeon put me on three very strong anti-biotics. They told us that there was three possibilities going on in my head. A fungal infection was possible, they don’t respond well to any drug. The next possible choice was a very resistant viral infection. Last but not least was my old buddy the Big C. To me it almost sounded like the cancer would be the easiest to deal with.

The days went by and at long last after seven or eight days the word came in that it was cancer. We found out that news almost at the same time that our first Grandson was born. Talk about highs and lows. We were crying for two different things at the same time for different reasons, joy and anger, on one hand mother and baby are fine, on the other hand, how could cancer have the balls to invade my body again. I had
kicked it’s ass out of my body once.

The head and neck surgeon left the hospital room and the Oncologist came in. She laid out a somewhat confusing program that I would be going through, they were still trying to figure out what to do to me.
This happened on Friday. Saturday, Linda drove the hundred and fifty miles to get a look and hold our new grandson. She took pictures for me.

I used the weekend to put the California boy in the sandbox to play for awhile and bring forth the Texas boy that lives deep inside me. In other words I had to get into fight mode once again. This cancer had absolutely NO right to invade my body. For two days, I spoke to no one but the nurses and Doctors. By Monday there was only one thing on my mind, once again, Kill this bastard and get it out of my body.

The next week I had my first infusion session, it consisted of four days of Chemo and then a week off. The plan was six sessions of the RICE program spread over twelve weeks. After that would be several days of radiation treatment which turned into five weeks followed by three weeks of spinal chemo injections. This last one is a piece of work, it involves drilling a hole in the top of my skull and inserting tubes into my brain. I will update on this one.

Once the first session of chemo was finished I began my push to go home. None of the doctors seemed to be in any hurry to send me home. Since I was being subjected to some new weird-assed test almost every day, it was convenient for them to have me right upstairs. They had no clue how stir crazy I was getting.

After eight weeks of being in the hospital I was finally allowed to go home. I don’t think I have ever been more glad to be somewhere. To say hello to the cats and the neighbors, to be able to actually take a shower, to go to the bathroom without dragging some rolling pole with an IV attached. It has been a long time since I have been that happy.

A word about my two month stays in two different hospitals. During that time I met a lot of people, with the exception of two, they were the best. The nurses, food service, house keeping, and transportation. They are wonderful, dedicated people. Any of them who happen to read this will know who they are and how much I admire them.

That said, by the end of the sixth week I was telling Linda that if ANYTHING else happened, I was not going to mention it to anyone. I told her that if one of my toes fell off, “just bring me the super glue, we will
deal with it later”. I wanted to go home so bad. Not to mention that Linda had been doing twelve hour, seven day a week days since the fifteenth of August.

The week after I got home was my first outpatient infusion of chemo. Four very long days and then a week off. During that week off I became very weak. I could barely manage to walk. That meant another blood test, followed by two sets of transfusions. After about a quart of blood I felt much stronger.

Now I have had sessions three and four. Two more of these and on to the Radiation, I wonder if my pee will glow in the dark.

Tuesday January 30, 2007:

They stopped the Chemo after four sessions. The last PET Scan showed no active cells in my sinuses.

I am now in my fourth week of radiation, with one more week to go. My head feels like I left it in the microwave a little too long.
In about three weeks they will drill my head and start that phase of the treatment. I’m not real keen on this part, I have a lot of stuff stored up there and don’t want just anybody pokin” around in my brain.

Thursday February 08, 2007:

I have two more radiation treatments to go, Thursday and Friday. My right eye is just about swollen shut. My eye, nose and the right side of my face hurt very much. I learned yesterday that the effects of the zappings will peak two weeks after the last treatment. I think the next couple of weeks are going to be pretty rough. I will have to take it one day at a time.

Friday February 09, 2007:

Today is my last radiation treatment. My right eye is swollen shut and my nose, mouth and eye hurt like hell. I can’t wait until tomorrow.
Stay tuned, shortly after March 19 they will do the head drilling thing. They say it is a simple procedure, it scares the hell out of me. Scary but necessary.

Wednesday, February 14, 2007:

I’m finished with the Radiation. I feel like crap, I can barely see out of just one eye. My nose hurts like the devil and my mouth hurts, I am pretty much on a liquid diet. This afternoon my Oncologist will let me know when they will drill my skull for the next phase of Chemo.
The party just keeps rolling along. The last PET scan they did was a full body scan. I got a phone call from a Gastro what the hell doctor, (A butt doctor), something showed up in my colon and now I’m going to be in the hospital for a couple of weeks in April for a colonoscopy. I guess this chain of events is just going to keep on keepin” on.

Friday, February 16, 2007:

On Wednesday my Oncology Dr. decided to let me have a month to recover from the radiation before drilling my skull for the Chemo to my CNS. I am glad for that as I am not very comfortable right now. Today my eyes are a little better, thanks to some ointment from my ophthalmologist. My mouth is better because of a soothing mouthwash from my oncologist. My nose still feels like a hive of bees is living there. Things will get better.

I saw the Ophthalmologist Thursday. After a complete examination, he is confident that lens replacement will greatly improve the vision in my right eye. The minor little cataract that I have had for years, that wasn’t big enough to warrant surgery, went mega because of the radiation.

The possible long term effects still include optic nerve damage that may show up about a year after the radiation. We will deal with that if or when it happens.\n\this Sunday brings The Daytona 500, my left eye will be tired by Sunday night. I missed most of the 2006 season because of being in the hospital. Tivo and Linda did their best but Tivo will only hold so many five hour recordings. The way I look at it, if I had been home to watch the races, I would most likely be dead now.

Thursday, March 01, 2007:

I am in limbo right now. Just waiting for the next phase of chemo to start. That will happen sometime after the nineteenth of March. I am hoping to return to work sometime in June. There is a lot to squeeze in between now and then, head drilling, three weeks of chemo, head patch job, enter hospital, switch blood thinners, colonoscopy, switch blood thinners (It takes about two weeks to switch back and forth.), eye surgery, six week recovery. A lot to squeeze in but I keep my hopes up.

Friday, April 27, 2007:

After a month in the hospital, I am home again. I now have a plastic covered hole in my head with two tubes inserted into the center of my brain. It is a little bit like one of those bubble pumps on the side of a lawn mower engine, only harder. They will inject the chemo right into the thing and my central nervous system will pick it up and move it where it needs to go. They also did the colonoscopy while I was in there. That saved me from the danger of having to go off of the blood thinners an extra time. There was and is a downside to this part of the adventure. When they restarted me on the blood thinners, I bled into my brain along with a sizable blood lose into my colon. There are a couple of days that I have no or very little memory. Linda says that I pretty much layed on the bed for two days without opening my eyes. I have had some blood transfusions and therapy to get my legs and arms to gain some strength and control. At least I am home and can now walk with the use of a walker and Linda holding my arm. I am fighting like hell to reverse this downward spiral

I’ve been sucked into. I still have to have the chemo injections and eye surgery. The prospect of me getting enough of myself back and returning to work seems to be fading for me. Growing chile peppers and roses can be very rewarding. Plus I’m a Grampa now, I have some little ones to spoil. But I am still hoping to return to work.

Friday, May 25, 2007:

Yesterday I had the first Chemo injection into my brain, five more to go over the next three weeks. I have to admit that I was scared to death. The releases you have to sign, the potential side effects are all very scary. So far the only side effect I am having is a headache.

I have received many comments and E-mails wishing me well and letting me know that they are praying for me. I thank all who have wished me well and the prayers are very welcome.\n\I began posting this series in the hopes that if someone happens by here who is in a battle with heart disease and or cancer it might get the message out that you can never give up. You can’t stop fighting, never ever. You have to keep the humor in your life. If anyone gets any help or humor from this I am happy.

I still have a ways to go, at least one more session under the knife. I am going to keep on keepin” on.

Thursday, June 07, 2007:

Well I have had four of the six injections of chemo into my brain. The last one is next Tuesday, they are kickin” my butt. The next day I have my first appointment with Ophthalmology they will be measuring my eye for the fit of the new lens. I hope the kick ass headaches I am getting now don’t become the monkey wrench in the works. The eye surgery is scheduled for July ninth. Wish me luck.

Friday, June 15, 2007:

The chemo injections are finished. The very nasty headaches and the weakness is hanging on but will get better. On Wednesday the ophthalmologist measured my eye for the new lens. The surgery will be on the ninth of July. This means that with the six week recovery period, the last chapter of this mess will be almost exactly one year after this whole thing started. The final one will be much easier to write because I will be able to see the computer screen again. I can’t even begin to tell you how much I am looking forward to that day. I thought combat was tough, you
only have to keep people and things you can see from killing you. This was the longest year of my life.

Tuesday, July 17, 2007:

I am going to have to find something else to write
about. This will probably be the last chapter of this one. I had the eye surgery last Monday. All went well and my vision is much, much better, but there was some damage to the optic nerve from the cancer, swelling and or radiation treatments. Visualize Pacman on the left part of your eye facing right, that is what I see when my other eye is closed. When both eyes are open I don’t even notice it. When I turn my eye slightly to the left and looking through Pacman’s mouth it checks out at slightly less than 20/30. I can live with this, I am lucky to have an eye at all. I am not going to say this has been fun, because it has not been fun. Without all the prayers and messages of support and my wife Linda, I would not have made it through this last year.

August, 19, 2008

Well I was wrong last July, it was not the last chapter. In Sept. 2007 they did another PET scan and found another cancer in my neck. Their solution was another program of chemo. Six days in the hospital for 24 hour a day infusion and two weeks and two days at home and then do it all over again. I went through that cycle six times. The first five times I was able to recover pretty well all things considered. The last cycle hit me very hard. I now have almost no feeling in my hands. When picking some object up, I have to be looking at it to be sure I have a grip on it. It is almost impossible for me to button a shirt or zip up my own pants. What sucks the most is they hurt all the time. I still don’t have much strength or stability in my legs. One or both of my legs will give out with out warning. I have taken one nose dive so far, which injured my back and my ankle. I hope this is actually the last chapter for real this time, but knowing how persistent the Bastard Cancer can be, who knows.

Wish me luck.

Wednesday, Jan. 14, 2009

An update. The spine doctor has put me on a medication to ease the pain in my back. One of the side effects is it helps with the lack of feeling in my hands. With the help of a Physical Therapist my brain is being re-trained to deal with and get around the neuropothy.