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!!!

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!

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.

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!!

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...

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.

Coming Back

The treatments are behind me, but it took me many weeks to get here, and it will likely take weeks to return to complete health. I am still feeling pretty sick and have a lot of pain - maybe more than while I was being treated! It seems like I will simply get worse before I get better! I don't really understand it, but this is how it feels.

I was hoping that I would have a speedy recovery, and that once the treatments were finished, I would recover quickly. After all, I'm a pretty healthy guy overall.

I finished the Chemo treatments almost 2 1/2 weeks ago, and Thursday was my last Radiation Zap. The last two weeks of my radiation were double, that is, I got treated twice daily. My bet is, that this double-time regimen would be unbearable for more than a short period, and is why I am paying such a high price after the fact.

I'd like to be able to report better things to everyone here, but for now, this is what is happening, unsweetened, in my world. I'll hope to bring better news soon! The good news is that I have plenty of time to catch up on my emails, shipping of TrikeBuggies and just overall relaxing with Lee Anne and the Wheaters (Whippet Heaters)!

Thanks for all the encouragement and positive thoughts, I really appreciate it!!

Last Day!

This is it! I have finally made it to the last day of my treatment for cancer - squamous cell carcinoma of the tonsil, spread to the nearby lymph gland in my throat. While the lymph gland disappeared rather quickly, the tonsil was a bit harder to know what was happening back there except that it was getting more and more SORE every day.

Well, today is no exception - MORE SORE than ever! I can only hope that after the last zap comes to a stop against my skin that I can truly begin to see what healing looks like!

I can count the treatments remaining on one hand!

After my radiation session this morning, we drove by the training hill. The wind looked pretty good, a little east but likely swinging around to a perfect direction within the hour. After careful consideration, though, I decided to wait to fly. My pain has increased every week, and the meds they give me are getting pretty powerful now. I felt like I could probably be OK, since I know the hill so well, and I'm not falling asleep or anything.

Still, if I had any kind of issue where I had to be "sharp" and on top of it, like I do when I am working lift, using wind and thermals to climb above the top of the hill, and I was not in full control or possession of my faculties, I would not be able to forgive myself if there was any kind of mishap. So I decided to forgo getting a wing and flying, even though I really wanted to go.

This was made doubly hard when, as we were leaving, Glenny came driving his little Para-Jeep around the landing field, wondering where we were going "just as it was getting good???" We talked for awhile, and he understood the reason and agreed, since he just recently finished some challenges of his own. I'm so close to the end, and I'm not going to muck it up now!

From a Friend...

Jim Smith wrote something that kinda hit me just now - "I'm sure over the years while flying you've bumped wingtips with a few angels, I'm sure they're looking out for you now." -Thanks Jim!!!

And so I enter the LAST FOUR DAYS of my treatment today - YAHOO! While my throat pain is at an all time high, I can see the light at the end on the tunnel, so my encouragement, enthusiasm and excitement is also high. Both weekend days, I kept at least six cans of food supplements down, perhaps more (sometimes I forget to make entries when I do it so much!). I feel strong, and when my pain is managed, even good! Thank goodness for good drugs! Sometimes I oversleep, and wake up in dangerous territory (9 or 10), but I get the stuff going right away, and soon I have relief.

I can't wait to eat again! I had some egg drop soup last night, some rice and broccoli. Not much, but I could vaguely taste it, and that was a real treat!

Maybe I'll go to the training hill today later for a short lift for my spirit!

Thank You. Gracias. Merci Beaucoup. Mahalo. Arigato. M Goi.

I just want to thank every person that has sent, thought, given pause, reflected, wished well, sent a prayer, meditated, invoked a spirit, etc. Our heartfelt thanks and sincere appreciation go out to you. It is all of you that keep me going each and every day. Keep it up! It has not gone unnoticed!!!

THANK YOU!

Home Again!

Yes, I am back at my father's house by the beach. I must admit, it's really relaxing to hear the lulling and soft crashing of water on rocks, even when you're as cold BRrrrrrRR as I am! So, I'll just wear more clothes! Not too big of a deal. Plus, three whippets and two humans ought to keep me warm enough, but they're a different kind of warm. More wiggly, more flying, more wonderful, EXCEPT when you're trying to go to sleep! They're my Wheaters (my whippet heaters)!

Appetizing Cuisine!

This has been a rough week as far as eating goes, some days I just don't get enough - in so many ways. Below is my compiled list of the food I've eaten since the beginning of September. Remember, all I am eating is Osmolite 1.2 Cal by Ross Nutrition (pictured), Juven, water and my meds - most of which are for dealing with the nausea!

9/9: 6 cans
9/8: 1.5 cans
9/7: 3.5 cans
9/6: 2 cans
9/5: 5 cans
9/4: 1/2 can!
9/3: 1 can
9/2: 2.5 cans
9/1: 3 cans

As you can see, today was, by FAR, one of my best days in regards to caloric intake in the last week. I'm hoping we can skip the Chemo this week, since this is what I think gets me in trouble the most.

The radiation is double-time now, twice a day until we finish, with a shorter, more concentrated and focused treatment. Since I have been rubbing fresh Aloe Vera on my neck, the skin there has nearly completely healed!

I can't believe this, the skin on my throat doesn't hurt at all, and this was like a bad sunburn with scabs, oozing and incredible discomfort. Today I started to eat it for my throat, but my nutritionist pointed out that this is not good now, with the low level infection and all, I could end up with something bad. So Lee Anne got some Aloe Vera Juice that is OK to take, and I think I am already seeing a difference, but it's really too early to tell.

Infection Lands Cancer Survivor in Hospital

Yes, that's right, I'm back in a Room With A View again, likely due to some kind of infection - we'll find out today after some test results return. Last night, I remarked that I was feeling feverish while hanging out with the family in SB. Lee Anne's eyes lit up and she went looking for a thermometer.

I told my Dad and Chris that the night before, I was so chilled that I had about 10 minutes of uncontrolled shaking. I was working on the computer at home with Kent Dyer, my friend from Colorado and did not realize that I had gotten so cold. By the time I noticed it, I was really cold, and the feeling I felt then was feverish also. He said that he had never seen anyone shake so hard! I do not have much body fat content, so when I get cold, I really feel it!


So Lee Anne comes back with this antique thermometer from the medicine cabinet. We stick it under my tongue, and three minutes later she exclaimed "One Hundred and Three!!" I said that it felt like less than the night before, when I was shaking so much, and that I had not died as a result. That didn't go over so well, so she decided to call Dr. Rosenblum. After hearing the description of the thermometer we were using, they decided that a quick trip to the Rite Aid would be time well spent.

A half hour later, the new thermometer (ear sensor type) revealed a temperature of 102.6, so we're off packing for a stay at the 'spittle. Funny thing is, once they take my temperature here at Cottage, it's only 101 degrees! Still, if there's a low-grade infection, it will be good to catch it early. Not much sleep here, with all the pokes and prods of blood tests and all.

Keeping Track of Pain, Food & Medication

Last Weekend, Daniel Barcay came to Ojai to visit, and left me with a wonderful tool (from Google where he works) that I can use to monitor pain, medication, food, water and other odd notes I might add.

I have been writing in a small notebook, and that works OK, but with Google Docs, I can update it easily from my iPhone and it automatically timestamps the entry with the date and time. I simply check some boxes of frequently used amounts of my drugs, liquid nutrition, water and Juven, 'Targeted Nutritional Therapy that helps build and maintain lean body mass'.

I like it because now I can now make it available to all my different doctors to access it to help maximize my understanding and implementation of the medications, It can get pretty confusing!

VIEW THE SPREADSHEET HERE

Remember, the latest entries are at the bottom of this spreadsheet. At right is the Form I use to add details to the sheet (you can click on it to enlarge it). I like being able to change it anytime I need to. I can think of a couple of other uses for this application, too...

September 3rd

Quite a week, in my little world! I moved to my dads house for the week so we don't have to make the drive to SB for treatment. I got a new drug, but really just a timed release version of the strong stuff in a much higher dose, spread out over twelve hours. Even this new one can be supplemented to increase effectiveness.

The Oxycontin is already MUCH better, and for the first time since my treatment began, I spent a few hours yesterday at the number 1 (on a scale from 1-10)!! It was fantastic! Lee Anne and I walked on the beach with Kess and Thunder, then spent some lazy time with Chris and my dad at their Sea Ledge Lane Beach Cottage.

Now I feel like I'm on vacation! Sleeping in a big, fluffy bed being lulled to sleep by the sound of the ocean.....mmmm.....watching old classic surf movies like 5 Summer Stories, Endless Summer and Laird Hamilton's Crazy Train. Step into Liquid is tonight's feature film, and I must say, there's no place like home!! (wrong movie, but it fits).

I found real relief for the skin on my neck - true Aloe Vera, with the plant's skin removed, rubbed directly onto the effected area. I have effectively removed this pain from my list since discovering this. Or maybe it's just because my throat has become so excruciatingly painful if I don't keep on top of my meds that It dwarfs the slight discomfort my neck skin has.

I feel bad for not writing more sometimes, but just getting through my days is challenging enough without trying to give everyone all the sordid little details and the blow-by-blow account of my treatment. I am just SO GLAD that we are getting so close to the end of this!! After today, there's only 11 more days of radiation treatment and two more Cysplatin injections!! The end is in sight.

Another bit of good news is that I am holding my weight pretty well. Often, I can only get three or four cans of my Isosource in, due to increased pain, which sets off the nausea. I am supposed to get 6-8 cans every day, but there is no way I can take more than 1/2 can at a time or I lose it. Still, I am taking in as much as I can, and what I have been doing seems to keep me in a holding pattern. Many patients lose 20-30 lbs. and so far, I've only lost about 4-5 lbs!

Back for More!

Another injection of Cysplatin, another week of radiation, another week of declining well being. Seems so strange to be doing this! Focus on the prize.

The last week has been relatively uneventful. I have more pain in my throat and the skin on my neck is really sore and irritated. Both of these converged on me and made me realize that I just have to make sure to take pain medication regularly or I am really in trouble.

Between pain meds, anti-nausea pills, laxative tablets, a variety of salves, ointments and oils, I feel like a walking drug store! Managing when to take each of these, when to eat and drink and when I'll be driving (makes me ill), is pretty important, or as I found out a few times - disastrous. I think I am finally getting a handle on it, after much trial and error.

Yesterday, I took a couple of flights at the training hill, but felt quite worn out afterwards. It was nice to get some activity in, but more and more, I have to be careful to not overdo it.

On Saturday, Doug, Irene and Jim ran a very successful clinic devoted to Soaring the Training Hill. For a long time, I have enjoyed the wonderful magic of finding rising air at the Hill, using it to ascend high above on many days. As Doug put it, this is perhaps our best soaring site in Santa Barbara during the summer months. I was not feeling good enough to attend, but I heard that it went really well, with just about everyone climbing up in thermals and many of them landing back on top for their very first time! Congratulations to all for such a great day!

Kestrel has been my 'nurse' for the last few weeks. She seems to sense that something is not right, and she positions herself on the pillows right next to me, giving me lots of gentle kisses and licks and looking at me with those big Chelsea eyes! She keeps me company for hours on end, now if I could just train her to refill my water bottle...

Actually, the real hero through all of this is Lee Anne. She is the best! Her care and attention makes this treatment so much more bearable. It can't be easy, watching me every day become more effected by the radiation and chemo treatments, like a slow, steady decline into more pain, nausea and overall discomfort. I wish I could just say "ENOUGH" and end this, but we have to stick it out and finish the project. The end gets closer every day, but it still seems like a long way off.

I really miss food! Even here in Dr Rosenblum's office, there's a beautiful watercolor of a white peach - the whole fruit hanging from a sprig with a few leaves, some of the flowers and a view of the fruit cut in half with the seed nestled in the luscious flesh. I would give anything to be able to taste a white peach right now! Or anything, for that matter! I never realized how many ads there were on TV until now - everything looks so tasty! Soon, I keep telling myself, I will be able to taste again. Well, maybe not so soon...

Sometimes I want to say something like 'don't take anything for granted' or 'be sure to make every day count' but I think that most of you understand how I feel. Often it takes something like this to wake you up, shake you around a little and make you realize what a miracle our lives are. Once I'm finished and healed, I'm going to take my brother, Barkley's advice and become UNSTOPPABLE!!!! My sister, Jamie and Jeff have a daughter and son - Anna and John, that are both celebrating their birthdays today! John turned 18 and Anna turns 21 - Both big birthday milestones in their lives. Jamie will turn 50 on September 1st, another biggie! My whole family has been providing terrific support through this, and I still feel the undying love and inspiration of my mother, Mitzi. There isn't a day that goes by that I can't feel her presence. She was really something.

Papa and Chris will be seeing a lot more of me after next week, as Lee Anne and I will be staying with them here in Santa Barbara during my "double dose" week, where I'll be getting radiation twice a day for the remainder of my treatment. I won't feel much like driving during that time, and they have graciously offered to let us stay with them at their wonderful beach house. I love the lullaby sound of the ocean as it soothes my senses while I fall asleep at night.

Another Dose of Chemo

Wednesday again, and i am hunt & pecking with my left hand as the Cysplatin drips into my right arm. This has been quite a week, and while i hesitate to write about it, i think that doing so may help someone else avoid my potentially disastrous mistake.

On Friday, i went out to El Mirage to camp in my T@B trailer for the weekend, with a little flying in the morning and some landsailing in the afternoon, plus lots of rest and relaxation in between. Jerry and his son, Brandon and Dennis Hurdle joined me for some fun in the sun.

On Saturday afternoon, i was experiencing a good amount of pain in my throat from the radiation, and i had just been given some oxycodone, a new stronger pain medicine. Prior to this, i had been taking loritab in a dose of 15 mL (about a tablespoonful). Looking at the new drug, i saw the recommended dose of 5 - 10 m.

So i took my dose of what i thought was 5 m, the smaller amount the first time around along with my meal of Isosource. They warned me that i should not drive or operate machinery, since it would make me somewhat drowsy, like a couple of beers. After about 20 minutes, i was feeling pretty loopy, dozing off and on, but feeling like maybe something was wrong. I decided to check the prescription to see if i was missing something.

Sure enough, i saw on the bottle now the print where it says 20 mg per mL and realized that i had taken 100 mg - about 20 times the amount i had intended to! I was used to taking the loritab liquid in the mL format that i completely missed that this was different. I called Lee Anne immediately and asked her to call Cottage Hospital to see if i was in trouble.

As soon as i got off the phone, i walked over to the nearest bush, and without any provocation, proceeded to empty my stomach contents. When that was done, i drank a good amount of water and did it again. i repeated this again three more times before i finally settled down.

About the only good thing i experienced during all of this little mishap was there was absolutely NO PAIN! I was feeling great, despite the seriousness of my situation.

It was a good thing that i intuitively threw up the drug, especially within a half hour of taking it. Dr. Blount said that if i had fallen asleep, there was the possibility that i could have stopped breathing! I'm glad this wasn't my last weekend...

Dr. Blount also decided to make an immediate policy change to have the nurses CLEARLY educate all patients on the difference of mg and mL, and how to make sure to get the proper dose. He was pretty concerned also about the fact that Lee Anne never got a call back from the on-call doctor when she inquired about the overdose. Usually, the team at the Cancer Center of Santa Barbara is really super, but this was a bit of a shocker. It was the weekend, however, and it's sometimes difficult to get stuff done then.

So, a pretty eventful weekend for me! Other than that and the pain in my throat, my energy levels are good, and we had a fantastic weekend of flying and sailing at the dry lake. Yesterday, after my treatment, i went over to Elings Park to do some free flight paragliding. I took a bunch of short flights, looking for lift, then I got almost an hour on a single flight after finding a nice thermal and climbing up to over a thousand feet over the top of the hill! It really feels good to be able to engage in and enjoy the things i love to do most.

Last night, i joined Berndt, Lee Anne and her parents at the dinner table for food! This week, i met with a speech therapist, and she told me how important it is to continue to eat - chewing and swallowing are really critical to keep the muscles functioning and the . Even as little as i can taste, it is important to try to keep as much of it as i can.

My throat is getting extremely sore now, and i hope you will forgive me if i don't always answer my phone. Pain medicine - good. Pain medicine used correctly - BETTER!

Made me cry...

I have had some time to watch a few videos online, and I came across this little gem from Norah Jones. It's a version of 'Somewhere Over The Rainbow' with 'It's A Wonderful World' woven in. Watch it HERE.

I have stopped eating food, now. It's too bitter and painful, so my little tummy tube is giving me all the nutrition I need. I've even gained weight! It seems I had an allergy to wheat gluten, and I've been away from it now for over two weeks. I don't know how long it takes for those little hairs in my small intestine to stand back up and get healthy again, but this may have something to do with it. Wheat never gave me any signs of trouble, but I was diagnosed with Coeliac disease as a result of the biopsy that my gastro doc did while he was installing my tube. No more wheat, barley or rye for me. At least my favorite grain, millet is still on my good list along with oats!

Sitting here getting my third Cysplatin injection, i have time to reflect and write.

Some new developments include an itchy rash around the base of my neck, likely due to the radiation treatments. Cortizone ointment stops the burning itch, and soothes the skin. Plus, some of my whiskers are beginning to fall out, also from the radiation. I haven't shaved for about two weeks because they don't want any cuts in my skin. Apparently, most of my beard will be falling out anyways. They say I'll keep my mustache!

It seems that I am what they call a "rapid responder" because already, my lymph and tonsil have shown remarkable, not just good, improvement by reduction in size (this is what the doctor said!). This is very good news! While it will not shorten my treatment, it is terrific progress along my path.

Last week, my family was together in Santa Barbara for Krista's wedding (my stepsister). While they were here, Johnny and Anna got a chance to get out to the training hill for a paragliding lesson. These two are natural athletes, and had no trouble getting airborne in the aircraft I find so fascinating. Callie, an old friend of the family, was on hand with her camera, and she has posted some great pictures of the day HERE.

Anna had to catch a fight (at the airport!) before she got to fly from the top of the hill, but a big thermal picked her up high on one of her flights, and she was pretty stoked! Johnny got a flight from the top before the wind kicked in and got too strong. He was all smiles! It was good to spend the day with the family again. Somehow, little things seem to mean more now.

So far, the treatment has not slowed me down too much, and last weekend, Lee Anne, the whippets and I spent the night in the Tabby trailer out at El Mirage Dry Lake, teaching TrikeBuggy, flying them and testing the new TrikeBuggy Landsailer. I got the chance to fly the smallest wing I have ever attached to the TrikeBuggy, an Ozone Viper that is only 15 square meters! This wing was specially made for me, and it was FAST FAST FAST!!! I did not have my GPS to get an actual speed, but I will be doing that soon. See a short video of the flights HERE. I was also testing the new version of my TrikeBuggy Bullet, and both Lee Anne and I flew it and agreed that it works great!

Eating

Today marks the end of the second week of treatment, and I have lost the sense of taste of virtually every food I eat. My throat is extremely sore and getting worse. Everything that I love to eat just tastes bitter and awful! More and more, I am relying on my stomach tube to deliver Isosource, my total nutrition liquid diet food. At least it also contains Benefiber, a fiber supplement, or I'd be a constipated marblemaker!

Here's something you can do for me - the next time you eat, take a bite for me and chew it slowly and taste the flavors completely. Give yourself a moment to simply enjoy the miracle of your ability to chew, taste, swallow and appreciate food. I miss it dearly already. Sometimes you forget how important even the most fundamental things can be until a challenge comes along to make you appreciate it.

It sure seems strange to be doing something daily that slowly deteriorates my physical body to the point where I will need heavy painkillers and sedatives just to make it bearable. I just have to remember the goal and probable outcome - to save my life!!

August 11th Update

The two days after my release from the hospital stay were pretty tough. I couldn't keep anything down, and ended up losing 5 lbs by the beginning of the next week. The weekend got better, as I learned that I could tolerate smaller amounts of food at a time better.

I also think the feeding tube installation was quite a bit of stress, too. Like someone shot me in the stomach! Now that the tube has healed, I have a lot less pain, and that is much less upsetting for my tummy. By Tuesday, my weight actually increased a couple of pounds!

Wednesday was another dose of Cysplatin, my chemotherapy cocktail administered by Dr Rosenblum at his office. I was really afraid that I would be sick again like the previous week, but I had no problem this time. It seems he adds something to the mix that, as he put it, gives you enough energy to go home and clean out a closet! I was up just about all night, somehow energized and feeling great - quite a change from the previous week (also why I now believe the tube had more to do with my illness than the chemo).

This morning (monday), my throat is starting to get quite sore, and I anticipate that I will not be able to talk or swallow soon, so this blog will likely be the only way check on my progress. I really appreciate the calls, but soon I will not be able to answer...

Short History

In early May, I noticed that the lymph gland on the right side of my throat was swollen. I went for a physical, and was referred to an ENT that suggested we biopsy or remove the lymph gland. I opted to wait and see if this was somehow related to a dental implant I was having done, as lymphs are usually indicative of some other problem.

Upon seeing another ENT that really looked around my ear, nose and throat (imagine that!), a velvety surface was discovered on the tissue of my tonsil. After a biopsy, it was determined to be squamous cell carcinoma, the second most common form of skin cancer.

So, I will be the undergoing treatment of cancer for the second time in my life. The first was a testicular cancer, resulting from an undescended testicle when I was very young. Not too uncommon, and entirely treatable. Only issue was that they found a spot in my left lung on the CAT scan. I opted to wait a month to monitor it's growth while I moved from Maui back to Santa Barbara to do the treatment for the testicular cancer.

When I returned and got another scan, they said that it had grown and needed to be removed. So we removed both my left testicle ad my left lung (not at the same time!). Testicle removal was minor, but the lung was a different story! When I heard the the spot in my lung was nothing more than scar tissue, likely from an infection I had when I was a kid, I was both upset and relieved. Upset that I really did not need to have most of my lung removed (scar tissue does NOT grow), but relieved to know that the cancer had not spread to my lungs.I decided to focus on the positive so I healed up and finished my radiation treatment. Considered 100% cured!

So back to my current situation, I will be undergoing both radiation and chemotherapy treatment for the cancer, which is in both my tonsil and lymph gland (no other spots showed up anywhere!). X-Rays, CAT scans and PET scans show that it is isolated, and the prognosis is good if I follow the recommended treatment.

Radiation to the throat is not an easy thing, in the old days, they just gave the whole area a dose, effecting everything including salivary glands, etc. Now they are much more precise and "aim" the radiation exactly where it is needed. I'll lose my lymph node along with the tonsil, but there should hopefully be some salivary glands still working on the other side of my mouth.

I had to get all my dental work completely up to date, so after four visits to the regular dentist and another couple for the dental implant, I won't need anything done there for awhile. Apparently, the mouth is slow to heal after radiation.

Next is the stomach tube, needed so I won't lose any weight during the treatment. Radiation to the throat starts out easy enough, but soon becomes increasingly difficult to swallow, and not eating is not an option for me! If I were to lose weight during the treatment, they may have to stop the process - not good!

So yesterday morning, I checked into Cottage Hospital and got my tube installed, along with my first radiation treatment and chemotherapy treatment. WHEW! The stomach tube is real sore, and the morphine they gave me made me pretty ill, so I opted for demerol with tylenol. Much beter!

I fell asleep during the radiation treatment, so no problem there, and the chemotherapy was proceeded with anti-nausea drugs, and I felt nothing. This morning, I will get my radiation treatment, then go home to be with the whippets and Lee Anne - Yippee!

I am starting this blog so I'll be able to keep everyone updated, especially towards the end of the treatment, where it will become exceedingly difficult to swallow or speak. My treatment will go until mid-september, once a day radiation on weekdays and once a week chemo.