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.
Wednesday, August 27, 2008
Wednesday, August 20, 2008
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!
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!
Thursday, August 14, 2008
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!
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!
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!
Tuesday, August 12, 2008
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!!
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!!
Monday, August 11, 2008
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...
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...
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