Well, it's been a while since I blogged anything here, and it's probably time for an update! After the last surgery, I healed up pretty good, but was still on the painkillers for a long time. Finally went cold turkey off them, and started feeling better about six weeks later. That's a tough one, they don't tell you how addictive Oxycontin is...
Lee Anne and I went to Maui for our anniversary, where she spent most of the time fighting the nasty virus as I drove her around the Island in our rented convertible. She mostly sat there saying "oooh" and "aaah" as we enjoyed the beauty of Maui. I fought the virus, but after the redeye return flight, I was sick as I have ever been. Four weeks of being bedridden with this strain was just about all I could take. Finally, about a week ago, I turned a corner and am doing much better.
Feels like I am catching up on 9 months of missed work, but I'm making progress. I spent yesterday teaching paragliding at the hill in Santa Barbara again, and the weekend before had two TrikeBuggy students that did excellent out at El Mirage Dry Lake. Worked on some new designs of the Transformer and spent a lot of time doing the books. Feels good to be back doing what I love again.
Monday, April 27, 2009
Friday, December 26, 2008
My Last Surgery
On Tuesday, Dec 23rd, I checked in to the Cottage Hospital at 5 am for the final phase of my treatment of tonsil cancer - a Modified Neck Dissection Surgery to remove the lymph glands on the right side of my neck. This is done to remove any chance of a microscopic bit of the cancer making its way to somewhere else in my body.
I would have normally done this about 7 or 8 weeks after my last radiation treatment, but my blood levels were so low that we had to wait until they returned to better levels before we could schedule the surgery.
So they made a neat cut from the bottom of my ear all the way to my adam's apple with two tubes to drain the fluids below that. A really impressive scar with the metal staples holding it together, kind of like Frankenstein!
About three weeks ago, my throat finally sealed up and I was able to eat much better, so I had my PEG (stomach) tube pulled. The tube had caused quite a bit of granulation of the skin around the opening, and it was causing me a lot of pain. When Dr Aguirre took it out, he also looked at the villi in my small intestine, and said that it was looking like it was improving. It took me a few days to recover from the anesthesia, and by the weekend, I was feeling pretty close to 100% again!
So what do we do? Throw me back into the hospital for a nice little surgery! I am not sure I have ever experienced more pain than when I was waking up from this one, it was really bad, and I was just screaming! Three days later, I am still here in the hospital hoping to be released today or tomorrow, as I am feeling much better. We still have not pulled the drainage tubes out, and I'm not looking to that!
I am, however, looking forward to returning home and starting the new year out with a clean slate with nothing more (medically) to do. Watch out, I'm on my way back!!!
I would have normally done this about 7 or 8 weeks after my last radiation treatment, but my blood levels were so low that we had to wait until they returned to better levels before we could schedule the surgery.
So they made a neat cut from the bottom of my ear all the way to my adam's apple with two tubes to drain the fluids below that. A really impressive scar with the metal staples holding it together, kind of like Frankenstein!About three weeks ago, my throat finally sealed up and I was able to eat much better, so I had my PEG (stomach) tube pulled. The tube had caused quite a bit of granulation of the skin around the opening, and it was causing me a lot of pain. When Dr Aguirre took it out, he also looked at the villi in my small intestine, and said that it was looking like it was improving. It took me a few days to recover from the anesthesia, and by the weekend, I was feeling pretty close to 100% again!
So what do we do? Throw me back into the hospital for a nice little surgery! I am not sure I have ever experienced more pain than when I was waking up from this one, it was really bad, and I was just screaming! Three days later, I am still here in the hospital hoping to be released today or tomorrow, as I am feeling much better. We still have not pulled the drainage tubes out, and I'm not looking to that!
I am, however, looking forward to returning home and starting the new year out with a clean slate with nothing more (medically) to do. Watch out, I'm on my way back!!!
Monday, November 24, 2008
A Very Hard Week!
This week has been one of the toughest weeks since I finished my treatment. I'm not exactly sure what is going on, but I have lots of pain in three places - my PEG tube in my stomach, my tonsil in my throat and my teeth, of all things!
It turns out that my stomach tube was not infected, but there is now a granuloma that has formed next to the tube. This is basically scar tissue that forms when there is irritation, it heals, then becomes irritated again, etc. The stomach acid that is a normal part of having a PEG tube continues to irritate the skin around the opening, and this is rather painful.
The tonsil is still healing, much slower than I thought it would, but then again, I really did not know how long it would take to return to normal in the first place. My teeth are hyper-sensitive to heat and cold, to sugar, which I have effectively stopped eating, and to intense flavors such as toothpastes, sugarless gums, etc.
These things have been somewhat painful for the last few weeks, but this week, they became even more unbearable for some reason, so off to the doctor we went. After a blood test, he found that all my counts were low - red blood cells, white blood cells and platelets, too. Not low enough for a transfusion, but low enough for concern, so even more blood tests and a CAT san were ordered to look deeper.
The good news is that there is nothing wrong with my stomach tube, as was suspected. In fact, they really couldn't find anything except the low blood counts to be concerned over. Next thing to look at was bone marrow, and today, I had my backside drilled for a core sample. Even with the shot of novacaine, the last thing he does is pull the sample out, and that's a big ouch! I hope I don't have to do many of those.
Today's blood test showed a dramatic increase in platelet count, almost double what it was last week! That's really good news, so we're keeping our fingers crossed for the results of today's marrow test, due Wednesday.
I guess I just have to be prepared for a bit of up and down during this recovery process. I am so ready to be back to health. Makes me realize just how much I took for granted for so long. Be thankful for every breath you take!
It turns out that my stomach tube was not infected, but there is now a granuloma that has formed next to the tube. This is basically scar tissue that forms when there is irritation, it heals, then becomes irritated again, etc. The stomach acid that is a normal part of having a PEG tube continues to irritate the skin around the opening, and this is rather painful.
The tonsil is still healing, much slower than I thought it would, but then again, I really did not know how long it would take to return to normal in the first place. My teeth are hyper-sensitive to heat and cold, to sugar, which I have effectively stopped eating, and to intense flavors such as toothpastes, sugarless gums, etc.
These things have been somewhat painful for the last few weeks, but this week, they became even more unbearable for some reason, so off to the doctor we went. After a blood test, he found that all my counts were low - red blood cells, white blood cells and platelets, too. Not low enough for a transfusion, but low enough for concern, so even more blood tests and a CAT san were ordered to look deeper.
The good news is that there is nothing wrong with my stomach tube, as was suspected. In fact, they really couldn't find anything except the low blood counts to be concerned over. Next thing to look at was bone marrow, and today, I had my backside drilled for a core sample. Even with the shot of novacaine, the last thing he does is pull the sample out, and that's a big ouch! I hope I don't have to do many of those.
Today's blood test showed a dramatic increase in platelet count, almost double what it was last week! That's really good news, so we're keeping our fingers crossed for the results of today's marrow test, due Wednesday.
I guess I just have to be prepared for a bit of up and down during this recovery process. I am so ready to be back to health. Makes me realize just how much I took for granted for so long. Be thankful for every breath you take!
Monday, November 17, 2008
Monday, November 17th Update
I was hoping to be all healed up by now, eating regular food, PEG tube all gone and healed, feeling strong and able to do all the things I do with the energy I'm used to doing them with.
The truth is that this is going to take a lot longer than I thought.
My tonsil is still raw and extremely painful, an open sore that is still sloughing off, nearly two months after the last radiation treatment. Any kind of citrus, tomato, salt, hot sauce (OUCH!), hot, cold or grainy food simply is much too painful to eat.
I still have almost no saliva, and within about a minute without a dash of water or tea, my entire mouth and tongue simply dry up. I know it's kind of hard to imagine, but when it happens, it is extremely uncomfortable and even painful. Chewing sugarless gum helps, but this presents another weird side effect.
I stopped sugar foods some time ago, due to the extremely sensitive nature of my teeth, but even sugarless gum is giving me trouble! I don't understand it, but it makes my teeth hurt just like sugar does. The only way I can chew even sugarless gum is with a healthy dose of Ibuprofen ahead of time!
My PEG tube that I still use for feeding more than half of my daily intake is becoming infected. I keep it very clean, but the slight leakage keeps introducing small amounts of stomach acid to the raw skin, making healing almost impossible. The result is another site where pain is almost constantly present.
SO, now I have more pain than I did when I was just finished with my treatment! Perhaps it is just the natural progression of this particular treatment process, I don't know. I have heard it said that 'it is always darkest, just before the dawn' and maybe this best describes what's happening.
All I know is that I will be glad when it is all over, and I can function normally and pain free! My energy level is better, but still only about 75 to 80% of normal. I am looking forward to being back to 100% again sometime soon.
The truth is that this is going to take a lot longer than I thought.
My tonsil is still raw and extremely painful, an open sore that is still sloughing off, nearly two months after the last radiation treatment. Any kind of citrus, tomato, salt, hot sauce (OUCH!), hot, cold or grainy food simply is much too painful to eat.
I still have almost no saliva, and within about a minute without a dash of water or tea, my entire mouth and tongue simply dry up. I know it's kind of hard to imagine, but when it happens, it is extremely uncomfortable and even painful. Chewing sugarless gum helps, but this presents another weird side effect.
I stopped sugar foods some time ago, due to the extremely sensitive nature of my teeth, but even sugarless gum is giving me trouble! I don't understand it, but it makes my teeth hurt just like sugar does. The only way I can chew even sugarless gum is with a healthy dose of Ibuprofen ahead of time!
My PEG tube that I still use for feeding more than half of my daily intake is becoming infected. I keep it very clean, but the slight leakage keeps introducing small amounts of stomach acid to the raw skin, making healing almost impossible. The result is another site where pain is almost constantly present.
SO, now I have more pain than I did when I was just finished with my treatment! Perhaps it is just the natural progression of this particular treatment process, I don't know. I have heard it said that 'it is always darkest, just before the dawn' and maybe this best describes what's happening.
All I know is that I will be glad when it is all over, and I can function normally and pain free! My energy level is better, but still only about 75 to 80% of normal. I am looking forward to being back to 100% again sometime soon.
Saturday, October 18, 2008
Big Improvements!
Saturday evening, and I am amazed at the progress and changes I've been through this week.
On Monday, I stopped taking my painkillers, as I found that my pain (much dimished, now) was the same whether I took the drugs or not. I can really feel that I have been gaining strength and endurance during the day since I have not been taking the medications. I am so glad to be off of these strong meds, and I feel sharper and much more alert.
Mostly just worked around the house during the week, catching up on some things that just needed doing.
On thursday, Bruce and I met a the beach and went for a powered paragliding flight up the coast at sunset. Bruce foot launched and I flew the Bullet Trike. With Bruce's help, we were easily able to carry the trike down the short rocky steps to the beach, making it possible flor me to fly comfortably. Afterwards, we basked in the enjoyment that comes when you have such a nice flight with a friend.
On friday, I asked Bob Peloquin if he wanted to go to the Santa Ynez airport to fly, since I knew he had just finished his new "fire engine" TrikeBuggy, a beautiful polished Stainless Steel version that he designed some new parts for. It uses the heavy Hirth 313 motor, so I knew the beach would be difficult, so off we went for another magical evening flight in the Santa Ynez Valley. I took a bunch of pictures of Bob flying, and I will post a link to them as soon as I put them up.
Today I went to the training hill and flew with the students as the wind increased during the morning. By noon, the day was warming up with the west wind increasing, and the lift started kicking in. As it was a bit sporty for the students, we had them practice kiting in the higher wind back far enough they would not be plucked off the hill into the turbulent conditions. This was my chance to go get some airtime! Gleny and I got some great thermals and climbed well above the top many times. I even got to soar in Tammy's Falcon 170 Hang Glider, as her student deemed the conditions a little above her level. What a great day at the hill!
After coming home and a short nap, Lee Anne and I went into Ojai to "Ojai Day" - a celebration in the center of town featuring food, crafts, jewelry, live performances, and much more. It was a party in the streets of Ojai! The food smelled so good to me, but I knew that I needed to wait and eat smart back at home later. My throat is still sensitive to many foods, and I am reluctant to find out the hard way!
I feel like I am really turning the corner and coming down the home stretch. With this kind of progress, watch out - I'll be back at full speed soon! It feels so good to join the LIVING again!
Also, I appreciate any and all who have sent their comments. I know I have not been able to respond to each and every one, but I still appreciate the thoughts and well-wishes you have sent. THANK YOU!!
On Monday, I stopped taking my painkillers, as I found that my pain (much dimished, now) was the same whether I took the drugs or not. I can really feel that I have been gaining strength and endurance during the day since I have not been taking the medications. I am so glad to be off of these strong meds, and I feel sharper and much more alert.
Mostly just worked around the house during the week, catching up on some things that just needed doing.
On thursday, Bruce and I met a the beach and went for a powered paragliding flight up the coast at sunset. Bruce foot launched and I flew the Bullet Trike. With Bruce's help, we were easily able to carry the trike down the short rocky steps to the beach, making it possible flor me to fly comfortably. Afterwards, we basked in the enjoyment that comes when you have such a nice flight with a friend.
On friday, I asked Bob Peloquin if he wanted to go to the Santa Ynez airport to fly, since I knew he had just finished his new "fire engine" TrikeBuggy, a beautiful polished Stainless Steel version that he designed some new parts for. It uses the heavy Hirth 313 motor, so I knew the beach would be difficult, so off we went for another magical evening flight in the Santa Ynez Valley. I took a bunch of pictures of Bob flying, and I will post a link to them as soon as I put them up.
Today I went to the training hill and flew with the students as the wind increased during the morning. By noon, the day was warming up with the west wind increasing, and the lift started kicking in. As it was a bit sporty for the students, we had them practice kiting in the higher wind back far enough they would not be plucked off the hill into the turbulent conditions. This was my chance to go get some airtime! Gleny and I got some great thermals and climbed well above the top many times. I even got to soar in Tammy's Falcon 170 Hang Glider, as her student deemed the conditions a little above her level. What a great day at the hill!
After coming home and a short nap, Lee Anne and I went into Ojai to "Ojai Day" - a celebration in the center of town featuring food, crafts, jewelry, live performances, and much more. It was a party in the streets of Ojai! The food smelled so good to me, but I knew that I needed to wait and eat smart back at home later. My throat is still sensitive to many foods, and I am reluctant to find out the hard way!
I feel like I am really turning the corner and coming down the home stretch. With this kind of progress, watch out - I'll be back at full speed soon! It feels so good to join the LIVING again!
Also, I appreciate any and all who have sent their comments. I know I have not been able to respond to each and every one, but I still appreciate the thoughts and well-wishes you have sent. THANK YOU!!
Monday, October 13, 2008
Monday, October 13th
Another week of recovery, and all I can say is wow, does this go slow! I had no idea that I had not written since Oct 4th, so here is another update.
Almost a month after the end of my radiation, I am still very affected by the treatment. My throat feels like it is on fire, still very sore and difficult to eat with. I am so glad I have the PEG tube for feeding, I don't think I would have been able to get enough nutrition any other way. We stopped for some Tom Kha Khai (coconut chicken soup) at a local Thai restaurant, but after a spoonful I realized that the spice was going to be WAY too much for me. For the next 10 minutes or so, I was in much pain and discomfort as the effect of the spices got to me. I guess it will be awhile before I'll be eating Thai!
I got to go to the Training Hill yesterday for some kiting and socializing with the pilots, it was really great to get back out and see people. Lots of pilots were getting up in the mountains, and it was fun to see them getting some! I can hardly wait to join in again.
I have been a real hermit during this recovery, but even after yesterday, I have to be careful to not overdo it. Today, I'm paying the price of my activities yesterday. I am so used to being able to just go DO things, and I have to be patient with the process, as I can see it still going to take awhile. It surprises me now to realize how brutal this treatment really was on me, but I am glad I am making progress, even if very slow. Patience...
Almost a month after the end of my radiation, I am still very affected by the treatment. My throat feels like it is on fire, still very sore and difficult to eat with. I am so glad I have the PEG tube for feeding, I don't think I would have been able to get enough nutrition any other way. We stopped for some Tom Kha Khai (coconut chicken soup) at a local Thai restaurant, but after a spoonful I realized that the spice was going to be WAY too much for me. For the next 10 minutes or so, I was in much pain and discomfort as the effect of the spices got to me. I guess it will be awhile before I'll be eating Thai!
I got to go to the Training Hill yesterday for some kiting and socializing with the pilots, it was really great to get back out and see people. Lots of pilots were getting up in the mountains, and it was fun to see them getting some! I can hardly wait to join in again.
I have been a real hermit during this recovery, but even after yesterday, I have to be careful to not overdo it. Today, I'm paying the price of my activities yesterday. I am so used to being able to just go DO things, and I have to be patient with the process, as I can see it still going to take awhile. It surprises me now to realize how brutal this treatment really was on me, but I am glad I am making progress, even if very slow. Patience...
Saturday, October 4, 2008
Saturday Update
Improvement seems to come so slow, and slow it is. Today, I had oatmeal, soup and a 7-Up, in addition to the liquid nutrition I have become so used to. It feels good to eat some textured, regular food, and I think I will try to do as much as that as I can. It hurts my mouth and throat a lot, so I can only take so much, but I think that every bite I take helps me improve.
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