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New update 9/18/09 on the Tumor #3, the lung page, a comparison of the 5/14/09 X ray and today's 9/18/09 X ray. You can see the difference in the size of the tumor during the last 4 months.
New updates (current) on my progress are now on Living after chemo page, the blood tests page is usually updated on Tuesday evenings. Surgery and Gamma Knife are over except for checkups, and I'm off the chemo but now need to try to recover from the chemo, which is going well.
But here's the story from near the beginning.
At the beginning of 2009, I just did not feel "right". Nothing major at first, but a lower energy level. Over the next 5 months I continued to work but I was not the same. My usual friendliness and support gradually withered away, almost without my noticing because it happened over months. I tried to exercise more, walking up to two miles a day when I could, that was not easy anymore but the new stumbling did show me that something else was wrong. I was confused and became a grumpy old man who was not really happy.
Symptoms
General tiredness became more and more common. Things I would normally do for hours became shorter until I would work for only several minutes and stop to rest, until the rest period became a full day. It didn't make sense, I was not "sick", but I was never well either.
On a trip to the bank, going through the door I hit the frame, which I never did before. I signed a check and happened to look at my name, there were two letters missing! I'd not seen that before either.
On the long walks it became impossible to walk a straight line, I would keep veering to one side, in my case usually to the right. When a car came I would walk off the road and stop to be safe.
Headaches appeared, and I spent more and more time in bed holding my head, using hydrocodone to ease the pain. Soon my neck muscles would cramp painfully with the headaches. Day by day the headaches became more frequent, but would go away.
I fell down, luckily on the bed, but it was very odd. I did not pass out, and I was never "dizzy" in my head and never lost consciousness at all. It was more that my body would not work properly.
On May 9/10 I had a normal two day class to teach a pair how to sail. I did not "feel" like doing it, I was getting worse, but I decided to do it with help from pain killers and starting going to a chiropractor a week before the class. The class was "ok", but I could tell I was well below my usual self. I always had good balance and "sea legs" but that was gone. I could not longer stand up on the boat without holding on to something. I looked forward to the end on Sunday. I let one student who was doing well dock the boat while I stood on the bow with the bow rope, holding on, and stepped on the dock. He did it perfectly, at the dock he meant to go to, but because of the wind it was the wrong dock. We needed the boat on the other side of the boat ramp, tied to the other dock. To move the boat I stepped onto the ramp in shallow water, I did not slip, but for some reason leaned toward deeper water. I moved my foot to catch myself, but it didn't move far enough and I continued to lean. I move the foot again, and again leaned. My cell phone got close to the water and I tried harder, only to lean again and the cell phone went under water. Almost up to my neck I was able to stop, and carefully walked back up the ramp and moved the boat. I never did this before, I knew something was wrong. We tied the boat, and I was concerned about de-rigging and taking down the mast, so I took more time and let the students do it. Normally I take down the mast by myself, always have, but this time I made the right decision, rigged extra precautions and let the two students take the mast down together. I finally knew I needed help, there was no doubt, but why?
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I fell into bed again that evening, my third fall. On Monday, we went back to the chiropractor, who did no good this time. Now Alison was doing all the driving. On Tuesday, we went to another chiropractor, Shawn Scott of Kingsland, who gave me a short series of tests, looked me in the eye and said, "You need an MRI of your head". I asked, "Can't you manipulate my spine?" and he looked me in the eye again and said, "You need an MRI of your head". Well, to have a chiropractor say this, twice, THAT had an effect on me, Shawn was the first man to save my life. We found out later that when we left he turned to his assistant and said, "He has a tumor in his head." Genius.
The first man to save my life, and without the first there are none.
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Dr. Shawn Ray Scott of Kingsland, Texas
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On leaving, I called John E. Carter in San Antonio, a former sailing student and friend who just happens to be the best neuro ophthamologist I know, and told him what had happened. When I told him what the chiropractor had said, he froze for a second and said, "Be in my office at 8:30 AM tomorrow." I could tell he was giving me no choice, and I agreed. Jack is a very very busy man, this was unheard of, I thought. (I've always called him Jack, like he does).
Jack crews for me in races now and then, one of my favorite crew, and sometimes I crew for him.
The second man to save my life, he acted fast.
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David, Jack, Devon and Dusty. 1st place 2008 Bridge Too Far race.
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On Wednesday, we went to see Jack. He came out himself and took me to his office and said, "Sit there". I laid down on the couch instead, but he came back very soon. He gave me a few tests of co-ordination, picked up a sheet of paper that happened to be on his desk, wrote on it and made a phone call, scheduled an immediate MRI of my head. This was happening so fast, it began to sink in that this could be serious, so I made no argument. He handed me the paper, which had a map to MRI Central on the back, only a couple blocks away. He made the appointment, told me to get the MRI, wait for the CD of the pictures and immediately bring them back to him. Yes, sir, Jack. From the tone of his voice, I somehow knew not to argue and followed instructions. We returned with the disk, he put it in his computer and said, "Damn, they didn't send all the pictures." This was the only time in my life I have heard Jack say Damn. He did have enough pictures to identify a massive tumor, gave me a prescription for a powerful steroid to reduce inflammation and sent me to the nearest pharmacy for a first dose of the maximum dose of the right steroid, and instructions to take the dose ASAP.
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We left to get the medicine, wondering, and began to drive home. Jack said he would get the rest of the MRI pictures.
It wasn't long after that, my cell phone rang, it was Jack, he had the rest of the MRI pictures and he did not mince any words. "Where are you? Turn around. Go to the Methodist Surgical Hospital and check in, your doctor's name is Bogaev, I will call them. Do not stop." I've never ever heard Jack like this, so I did not argue. Jack was the 2nd man to save my life.
I found that neurologists normally look at the head scans from the bottom, you can see the tumor on the left, but that is the right side of my skull.
Click here to see more MRI scans
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On arriving at admissions, they somehow knew who I was, and rushed me to a room, attached an IV, and gave me another dose of steroids, another maximum dose, in the IV. The steroids were to reduce the inflammation and reduce the pressure in my skull, which I didn't realize, but I followed instructions and began feeling better. The nurses watched me carefully for a while, then told me Dr. Bogaev was operating but would be there as soon as he could.
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I was hungry, and we had asked for food, but it was after dinner so they brought what they could. I couldn't eat what they had available, but they tried. I got to work, excellent wireless internet by the way. Not sleepy, wide awake, and feeling a bit better, they had given me some time to live.
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Dr. Bogaev arrived after surgery and examining the MRI, ordered continued maximum dosage of the steroids every 6 hours, and told me to get a full torso cat scan at 12:15 AM, they would take me there and they did. The big bottle they gave me to drink was not very tasty, but I didn't throw up. It didn't help my hunger. I had the cat scan, and was wheeled back to the room. It was happening so fast, and I was full of steroids to keep me alive. Time to wait, as there were other people in worse shape than me! Dr. Bogaev is a very busy man, the best neuro surgeon there is, and later I found he often works long hours, so long I could not believe it. I was bumped up the list as much as they could, but I would have to wait until Friday. Thursday passed as my brothers and friends arrived, what is going on?
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Help Alison with David's medical bills
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Next page continues through operation, with videos of the gurney ride to the operating room and right after arrival in ICU
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