More recovery, and a Mistake

Purpose: My purpose in making these pages is to help people. My hope is that seeing how brain surgery can go in the year 2009 will ease minds and give some hope and comfort.

This is the personal experience of David Luckenbach, diagnosed with brain and lung cancer in May 2009. A sailing instructor who smoked and drank, and almost died, saved by friends and angels and given another chance. Odd fellow I am, always ready to help other people, and neglected myself.

Forrest and Alison spent a lot of time with me in ICU. They would go to the food court and bring me food; that Philly Cheese steak was the best I've ever had. The staff returned me to my room in the neuro ward just in time for supper! Still constant hunger and no more sleep. I drank immense amounts of water. Forrest had to go home that evening, and Alison went across the street to the motel for some sleep, she needed it badly. Of course, I was awake, still. The doctors wisely kept me on the steroids to control the swelling caused by the operation, and I was monitored all night and day by the nurses. I can't work on the computer all the time, so I did get a little bored. I noticed a problem with the IV so I fixed it, and started thinking what else could I do to help these wonderful people. At times I ran out of things to do, so I would unplug the IV machine and slowly walk around the hallway carefully, stopping and lying down in bed if I even thought I was going to get tired. I walked 1/2 mile that night, broken into pieces, and even slept for 2 hours or so, the milk helped. We ran out of whole milk on the 9th floor that night, which did help me sleep until we ran out. I noticed the floor had 12" tiles, so I counted them to figure the distance around the hallway. It was almost 1/10 mile going all the way around, I did one round at a time that night. No time to overdo it I thought.

Sunday

I examined the menu again, and called nutrition to get more real food for breakfast. By this time I really wanted to get well, so I avoided anything with preservatives, etc. Nutrition sent up a banana and orange and 100% orange juice with breakfast, and the eggs and sausage was very good. They had many options available if I wanted anything different from the normal menu, all I had to do was call nutrition on the phone the hospital provided and they delivered pretty good meals.

Now I hope you know I have a few more tumors, and anything can happen. This first one was urgent and very large so I got in quickly, while I recover from the surgery the doctors will is determine the best treatment for the others. Dr. Kingman checked me again Sunday morning, after my first 1/5 mile walk. He decided to disconnect the IV because I was drinking plenty of water, and then gave me permission to go OUTSIDE with Alison! He thinks I will be dismissed tomorrow, on Monday. With the IV disconnected, Alison and I went down to the food court so I could eat breakfast again. After lunch and a short break, we went out again for another Philly Cheese steak. The Sunday supper was very good, roast beef with potatoes and carrots. Alison had bought some whole wheat bread and real butter and cheese on Friday so my hunger began to ebb. Well, people who know me will say I am a bit odd, but I don't usually eat like this at all. I know my fast progress was due to all the prayers sent my way, and it is changing my life. I forgot to ask how long before I can go sailing, so I'll ask Dr. Bogaev tomorrow. Taking my time, I walked two miles on Sunday, it was easier since I didn't take the IV machine with me, but I did several walks with long breaks.

11PM Wow, yall have done more than I could have hoped. I went from the depths of despair on Thursday to having great joy and a new meaning to life in 3 days. I can't keep up with the emails, but I'm trying. Your prayers are more powerful than I ever imagined. I don't know everything, but my world is changing for the better, and fast, so fast. I have so much to do, but I have to sleep some too, lol. I feel better every day, thank you all. I'm about a day behind on the emails and it's growing. Again I slept a couple hours.

Monday

A good day, again I had breakfast twice, and lunch twice. Today we took our whole wheat bread down to the food court with us, and they made both Forrest and me Philly Cheese steaks on our bread. Forrest came back to drive us home, but we had to wait for Dr. Bogaev to release me, and he was in surgery, and running late. I didn't mind, I knew he had patients he had to help, so no complaint from me. I walked another two miles, had a nice shower and shave, got dressed and we gathered up our belongings and computers and got ready to go. After dark Dr. Bogaev walked in, smiling, what a man, and released me. I can't drive for two weeks, can't sail for 6 weeks, and have some weight restrictions. Forrest drove us home, about 90 miles, and I went to bed. I was on my last maximum dose of the steroids, so I still got little sleep and was up early.

The third man who saved me, Dr. Bogaev

A few of my family who helped, and Dr. Bogaev

Tuesday

I woke about 4AM, so I went for a walk, and about 6:30 Paul's garage door opened and we had a chat, and I met a new neighbor on the way back. I saw a nutria and a rabbit. Alison and I went to town and got the prescription filled for the tapering off dose of the steroids and I began to cut the dose as ordered. We went out to eat at Tamale King. Dyson was at the next table so he joined us, that was a nice surprise, I hadn't seen him in a long time. Great spinach quesadillas. He has a set of sailboat racing buoys to sell, so I thought about which club could use them. After checking the mailbox and buying groceries, back to the house to tackle those emails. I was going to catch up! That night I slept even better, 5 or 6 hours.

Wednesday

I made progress this day, and got a lot done. Looked like I'd get caught up soon. I'd asked people to slow down on the boat ads, and got to bed soon after midnight.

Thursday

I overdid it, stupid me. I worked all day and well into the night, even after I was tired. I should have stopped BEFORE I got tired. I went to bed, but woke up soon feeling not well, and the ringing in the ears had returned. I woke Alison, and we called the hospital to inform them. They asked a lot of questions, and connected me to Vincent, who had been one of my nurses. Great man, he asked me again to make sure I was ok, and told me what to do if it got any worse. I'm not sure, but I think he's also an angel. I rested and drank water, and worried, and promised myself to be smarter. I felt better by morning and went back to bed.

Friday

Time to cut the steroid dose in half again, I'm starting the last three days. I'm really looking forward to getting off the steroids. Alison had found the side effects of this one online, and I've had every one on the list. This drug has a long list of side effects, some very bad ones. I've never had steroids before and hope I never need them again. This one helped save my life, but I would never take them without a doctor's orders. I had a nap on Friday and finally felt ok again, and a little wiser. Joel and Ann came over and we had a nice visit on the porch, and I went to bed earlier.

I was allowed to wash my head, and found they had glued my hair out of the way. It had dried, and was good glue. Alison cut most of it off, but it would have been easier to shave my head first. First time I've been stapled in my life, Alison counted 33 staples. Op on Friday, home on Monday, this last picture Johnny took on our back porch with his I-phone one week after surgery. I can have the staples removed in one more week, and I can drive then, but it's pretty nice to have a driver and watch the scenery!

Saturday

Felt better yet, but I'm taking it easy. We went to town, Alison driving of course, I went for a walk while she had a haircut, we bought more food and went home. Benny and Roy came by and mowed the yard and we had another nice visit and talk. I think I'll go to bed early tonight too. I'm all caught up on the website, and tomorrow we're having a funeral postponement party! And NO, I'm not going to drink any alcohol. Eight days after surgery, I feel good, I'm happy all the time, and friendly again. Little things don't bother me any more, I don't mind some noise. Doesn't seem like anything bothers me any more like it has this year. I'm back. It is a wonderful world, full of miracles.

Sunday May 24th. The day I've been looking forward to, my last day of steroids. If all I knew was the side effects of this steroid, they would never enter my body. But, like all clouds, there is a silver lining, and the steroids saved my life by reducing the pressure in my skull until surgery. It appears there is some good in everything, and if we have our eyes and hearts open we can find it. This afternoon we had family and friends over for a small Funeral Postponement Party. Had about 30 people over, I grilled and ate venison sausage all afternoon. I've been wanting to do that for years, dreams do come true. Cooked a lot of sausage, and everyone brought whatever else they wanted, so Alison didn't have to fix a meal or drinks or anything, great way to have a party. Holli has been out of state for years and she came, and Diana my former sister in law too. I took my last tapering off dose of the steroid, I've been looking forward to that a lot, I'll be off them tomorrow, Memorial Day. So I thought, I was wrong again!

Memorial Day, 2009
Today was more eventful than I thought it would be. I had looked forward to not taking any pills again ever since I started the steroids. I do use medicine occasionally, but normally I take no pills. Today started as usual, but as the day went on Alison started noticing strange changes in my behavior. I was jumpy and irritable. It became harder and harder for me to control myself, and I didn't notice the difference in myself until mid afternoon when my ears started ringing again. I began to speed up. I talked faster, I had a temper which is very odd for me! I noticed an vast increase in speed and power, this was scary. My speech sped up, doubling if I wasn't careful. Alison helped me notice, and with effort I could somewhat control myself, breathe slower and talk slower, move slower, but I had to make a conscious effort. Very odd.
Back home I did some work, and noticed I was typing twice as fast. I felt like my nerve impulses were twice as fast in everything, to adjust I had to try to go half as fast as normal, just to slow down near normal. Glad I did this before I broke something. We checked my pulse and that was opposite, much slower than normal. This went on until evening, which is now, and after a large supper I do feel a little slower. Whole milk and food helped again, but I still feel hyper and fast. I was going to add some pictures of the party, but I think I'll shower and go to bed, and try to relax and sleep. Apparantly, just stopping the steroids has a large effect, perhaps this is why the Dr's insisted I taper off on their schedule, which I luckily did. If I had stopped steroids suddenly, I don't know what would have happened, and I don't want to try it. In this case, "Follow Dr's orders" appears to be very important.

Friday, May 29
Finally I get my staples out! San Antonio again, I drove so we made better time. On the way I gave Lloyd Lindsey a call, he is in New Braunfels for physical therapy to recover from his brain surgery on May 22. He was upbeat and trying to learn to walk again. A very good sailor, he has a dream of a new Flying Scot. Prayers for Lloyd are welcome.

I met Dr. Bogaev's nurse Margaret, nice lady. She did some tests again to make sure my muscles were all moving where I told them to, said I'm fine, and took out the staples. I asked her to tell me when she took one out, and she showed me her hand that already had 4 or 5 in it. I never felt those at all, but there were a few later that I did feel. Felt like someone was pulling on a hair a bit. So much better than having stitches removed! I decided I like staples much better. I also learned they were titanium, I asked if they recycle them, but no. Can't do that with patient staples I guess.

If you've ever wondered about using staples instead of stitches, here's a video of Margaret taking mine out.

Tomorrow we go to San Antonio for my first visit with the oncologist, to start deciding what treatment is next. I'm following Dr's orders, for sure, which turned out rather bad, but was very educational.

July 2
Went for my 6 week checkup with Dr. Bogaev. I showed him the June 11 MRI scan made for the Gamma Knife, and the place where he removed the tumor looked good. He's taking over for Dr. Hernandez on watching the small tumor too. I'll see him again on July 23 after my July 15 follow up MRI.

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Next page, choosing the GammaKnife and other treatment

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