Three chemo and 9 radiation treatments down. I’m starting to feel the effects. My mouth and throat are getting dryer by the day and I’ve increased the amount of water I’m taking in and the number of times I gargle with Chaposol. I woke up Saturday morning with a very dry mouth and some of the dry spots are a bit sensitive. Also, my baby butt soft smooth skin on my face and neck has turned Gobie desert dry and I’ve started breaking out in acne. Nothing too serious yet, but I don’t remember by skin being this bad as a teenager. However, that was 40 years ago and I’ve probably put those divine memories in the bit bucket. I’ve also started to feel a bit nauseated early in the morning. A bit like a hangover; low grade headache, a bit dizzy and a little nauseated, not serious enough to toss my cookies, just a bit off. So far a Tylenal and something to eat and the feeling goes away fairly soon. Not so much today, the feeling has hung on through most of the day. Oh yea, and my sense of taste is getting a bit off as well. Things don’t taste bad, they just don’t taste right. I asked Terry if she wanted to go out for dinner tonight, it may be the last time in a while that I can enjoy a meal out.
Tuesday was a very busy day. I had my radiation and chemo treatments that day and I also met with a nutritionist and my radiation doctor. I arranged an early radiation treatment so I could have time to get blood drawn prior to the chemo treatment. Little did I know, they were going to run a set of x-rays to ensure proper aiming. Evidently, they are going to do that every Tuesday prior to the usual daily treatment. That added about ½ hour to the time I spent on the table. (with that damn tongue depressor thingy) Then it was off to get blood drawn and start my chemo. Luckily they don’t worry too much about schedules once you’re in the chair. I ended up waiting 2 hours for the lab results to come back before they started the chemo.
While I waited the nutritionist came by and we went over my diet and she recommended a few changes, mainly to double my calorie intake. So, essentially I can eat anything I want in as much quantity as I want and no one is going to complain. She said that sounds good now, but in a week or so it’s all going to change and my appetite is going to go south and my mouth and throat are going to be sore so I won’t want to eat. Then the challenge begins on how to get enough calories in me to sustain my weight and nutrition. I mentioned that Guinness was once thought to be very medicinal and that I had a feeding tube installed. She recommended some of the liquid meal replacement products instead. I don’t think we were on the same wave length.
I went back to work for a few hours, but the Benadryl was kicking my butt. When I got home a bit after 4 o’clock, I laid down on the couch and 2 hours later Terry woke me up. I’m thinking maybe I’ll just head home after chemo treatments from now on.
All of this doesn’t bode well for the coming weeks.
On the positive side I went to the gym twice this week. My port and PEG sights have healed well and I managed a light workout and some aerobics time. I felt re-invigorated and refreshed after the workouts. I’ll up the number of workouts next week if I can.
Sunday, February 28, 2010
Sunday, February 21, 2010
First Week of Radiation Treatments in the Books
Well the first week of radiotherapy went without incident and I am feeling little effects. I’m starting to get a little bit of dry mouth, so I’ve increased my water intake and the number of times I gargle with Caphasol. The Caphasol is supposed to reduce the affects of the radiation on my salivary glands. I also sat down with one of the radiation therapy nurses and she ran me through a check-list of things I need to be doing and not doing. We also went over the radiation effects. She gave me a tube of super moisturizer for my face and neck. I’m supposed to slather up a couple of times a day to keep my skin baby butt soft. They say I’m going to end up with what amounts to a serious sun burn on my neck and cheeks. The Erbitux has already resulted in a light skin rash on my forehead and across the bridge of my nose. It kind of feels like the 3rd day of a sunburn, a little bit itchy and it feels like it wants to peel, but it doesn’t.
I met with the doctors that put in my PEG and port on Wednesday morning and they took out a couple of stitches. We compared notes on just what a little pressure and a slight sting means. To them it doesn’t mean much, but they understand that patients have a little different understanding. I told them the joke about the guy that goes to the dentist for a toothache and when the dentist was numbing the patient up he told him he shouldn’t feel any pain. The patient grabbed the dentist by the balls and said, “you’ll feel what I feel.doc.” I told them we should apply the same principle when they take out my stitches. The doctor was very gentle. We also discussed my flushing of my feeding tube (PEG) and that I should be doing it daily. So now I have quite the ritual I go through every morning prior to going to work. Shower, change dressing, flush PEG, brush teeth, floss, gargle with caphasol, shave with my new electric razor, slather up with moisturizer and finally get dressed.
The electric razor was the radiation doctor/nurse’s idea. They don’t want me shaving with a regular razor because it results in tiny nicks that will have a hard time healing. Ok, I understand that. So I go to the store to buy an electric razor and do you know how much they want for electric razors? Holly molly, you can pay $250 bucks for the darn things. They’ve got options like automatic lather dispensers, and ones you can use in the shower. I have enough problems washing my back; I don’t need to add shaving in the shower. My luck I’d drop the darn thing on my foot, start hopping around, slip and bust my head open. I opted for a $50 version. I used an electric several years ago and was never much impressed so I went back to the regular old razors. I didn’t use a $250 one then either, maybe that was the problem.
I hope next week goes as well.
I met with the doctors that put in my PEG and port on Wednesday morning and they took out a couple of stitches. We compared notes on just what a little pressure and a slight sting means. To them it doesn’t mean much, but they understand that patients have a little different understanding. I told them the joke about the guy that goes to the dentist for a toothache and when the dentist was numbing the patient up he told him he shouldn’t feel any pain. The patient grabbed the dentist by the balls and said, “you’ll feel what I feel.doc.” I told them we should apply the same principle when they take out my stitches. The doctor was very gentle. We also discussed my flushing of my feeding tube (PEG) and that I should be doing it daily. So now I have quite the ritual I go through every morning prior to going to work. Shower, change dressing, flush PEG, brush teeth, floss, gargle with caphasol, shave with my new electric razor, slather up with moisturizer and finally get dressed.
The electric razor was the radiation doctor/nurse’s idea. They don’t want me shaving with a regular razor because it results in tiny nicks that will have a hard time healing. Ok, I understand that. So I go to the store to buy an electric razor and do you know how much they want for electric razors? Holly molly, you can pay $250 bucks for the darn things. They’ve got options like automatic lather dispensers, and ones you can use in the shower. I have enough problems washing my back; I don’t need to add shaving in the shower. My luck I’d drop the darn thing on my foot, start hopping around, slip and bust my head open. I opted for a $50 version. I used an electric several years ago and was never much impressed so I went back to the regular old razors. I didn’t use a $250 one then either, maybe that was the problem.
I hope next week goes as well.
Tuesday, February 16, 2010
First Radiation Treatment
Busy day today. I went into the office at 6:30am (may usual time) checked email and caught up with the rest of the crew. I coordinate with some NATO folks in Europe so early morning is the best time for us to communicate. It’s early for me, but it’s afternoon for them. I got to the hospital at 10:00am to have my blood drawn for lab work. I waited around as long as I could (10:40am) then had to go down to the radiation department in the hospital basement. I met with Dr. Atkins and we went over the treatment schedule and the radiation plan. He told me what was going to be radiated and how much. Then we went over the short and long term side effects. I think I’ve pretty well covered that in previous blogs, so I won’t go into it again.
Then it was down to the treatment room. It’s pretty dimly lit and they have a mural on the ceiling. When you’re lying on the table looking up, it’s like laying on a forest floor looking up into the trees. I guess that’s supposed to be relaxing. They showed me where to put my things, laid out my mouth guards and told me where to get my tongue depressor thingy. They told me they will first be taking some x-rays for measurement purposes and would follow that with the actual treatment. So, in went the tongue depressor thingy, on went the mask and the process began. It took about 15 minutes for the x-rays. They then came in and drew things on pieces of tape attached to the mask. They also drew a mark on the center of my chest (bulls eye if you will).
All this time I have to deal with the tongue depressor thingy. It makes your saliva run and it’s a bit hard to swallow while lying down strapped to the x-ray table. They also want you to be as still as possible. I have to essentially suck air through my mouth to draw the saliva to the back of my throat to try and swallow it. It’s not an easy task and as hard as I may try to relax my jaws are clamping down trying to hold the thingy in one place. That gets old pretty quick.
We started the radiation treatment, it took about 15 minutes. It’s like getting an x-ray but it stays on a lot longer. I couldn’t feel a thing. I just laid there watching the machine work its way around my upper body, stopping at designated spots and then a short zap, then on to the next position. I tried to stay as still as possible and do the swallowing thing in between zaps. They finally came in took off the mask and told me I was done. They instructed me to put my mouth guards away, put my shirt on and join them out in the office and they left. They don’t spend much time in the treatment area. We worked out a schedule, it’ll pretty much be at 9:30 each day except Tuesdays when I get my chemo treatments. They will be flexible as to my radiation treatment times on the days I get chemo. Then I was off to my chemo treatment.
Back on the 6th floor as I approached the reception desk in the chemo clinic my nurse saw me and told me to go to her treatment room (room C). She set up to draw blood out of my port (lots of syringes, gauze, vials and stuff). She numbed the area a little and then flushed the port leaving in a connection for the IV bags. She hooked me up to a regular drip and we waited for my chemo to arrive. The port is very convenient, there’s no pain and I don’t have to put up with some tech sticking one arm then the other, then on to a hand, back to an arm, digging around with the needle to find a good vein. (port – good, tech with needle – bad) I had arrived a bit early for my appointment so the drugs weren’t there yet. I was set up in a nice recliner with a pillow, a warm blanket and a TV was showing the Olympic Games. Two other people were already there getting their treatments. After a half hour or so my drugs came and she hooked me up, first a dose of Benadryl, then the super juice. This treatment was to take about an hour. I started watching TV and the Benadryl kicked in and off to la la land I went. I woke up with the over powering urge to pee. I had about 10 minutes of chemo left in the bag, but my bladder wasn’t having any of it and insisted that it be emptied. Off I trundled with my rack of drugs to the restroom. It was finally over; Nurse Pace flushed my port and sent me on my way with a nice hug.
I then went to the waiting area for my next appointment with Dr. Richard (the chemo Dr.). He wanted to know how I was feeling and if I was experiencing any side effects. It was a pretty fast meeting; he was about a half hour behind schedule. He set me up with another appointment in 4 weeks.
I guess this was a pretty boring update, but that’s going to be my life for the next 6 weeks. I’ll try and keep the boring stuff to a minimum, but I’m hoping not to have to report much on side effects. Cross your fingers.
Tomorrow, I meet with the doctors that installed my port and PEG. That should be interesting.
Then it was down to the treatment room. It’s pretty dimly lit and they have a mural on the ceiling. When you’re lying on the table looking up, it’s like laying on a forest floor looking up into the trees. I guess that’s supposed to be relaxing. They showed me where to put my things, laid out my mouth guards and told me where to get my tongue depressor thingy. They told me they will first be taking some x-rays for measurement purposes and would follow that with the actual treatment. So, in went the tongue depressor thingy, on went the mask and the process began. It took about 15 minutes for the x-rays. They then came in and drew things on pieces of tape attached to the mask. They also drew a mark on the center of my chest (bulls eye if you will).
All this time I have to deal with the tongue depressor thingy. It makes your saliva run and it’s a bit hard to swallow while lying down strapped to the x-ray table. They also want you to be as still as possible. I have to essentially suck air through my mouth to draw the saliva to the back of my throat to try and swallow it. It’s not an easy task and as hard as I may try to relax my jaws are clamping down trying to hold the thingy in one place. That gets old pretty quick.
We started the radiation treatment, it took about 15 minutes. It’s like getting an x-ray but it stays on a lot longer. I couldn’t feel a thing. I just laid there watching the machine work its way around my upper body, stopping at designated spots and then a short zap, then on to the next position. I tried to stay as still as possible and do the swallowing thing in between zaps. They finally came in took off the mask and told me I was done. They instructed me to put my mouth guards away, put my shirt on and join them out in the office and they left. They don’t spend much time in the treatment area. We worked out a schedule, it’ll pretty much be at 9:30 each day except Tuesdays when I get my chemo treatments. They will be flexible as to my radiation treatment times on the days I get chemo. Then I was off to my chemo treatment.
Back on the 6th floor as I approached the reception desk in the chemo clinic my nurse saw me and told me to go to her treatment room (room C). She set up to draw blood out of my port (lots of syringes, gauze, vials and stuff). She numbed the area a little and then flushed the port leaving in a connection for the IV bags. She hooked me up to a regular drip and we waited for my chemo to arrive. The port is very convenient, there’s no pain and I don’t have to put up with some tech sticking one arm then the other, then on to a hand, back to an arm, digging around with the needle to find a good vein. (port – good, tech with needle – bad) I had arrived a bit early for my appointment so the drugs weren’t there yet. I was set up in a nice recliner with a pillow, a warm blanket and a TV was showing the Olympic Games. Two other people were already there getting their treatments. After a half hour or so my drugs came and she hooked me up, first a dose of Benadryl, then the super juice. This treatment was to take about an hour. I started watching TV and the Benadryl kicked in and off to la la land I went. I woke up with the over powering urge to pee. I had about 10 minutes of chemo left in the bag, but my bladder wasn’t having any of it and insisted that it be emptied. Off I trundled with my rack of drugs to the restroom. It was finally over; Nurse Pace flushed my port and sent me on my way with a nice hug.
I then went to the waiting area for my next appointment with Dr. Richard (the chemo Dr.). He wanted to know how I was feeling and if I was experiencing any side effects. It was a pretty fast meeting; he was about a half hour behind schedule. He set me up with another appointment in 4 weeks.
I guess this was a pretty boring update, but that’s going to be my life for the next 6 weeks. I’ll try and keep the boring stuff to a minimum, but I’m hoping not to have to report much on side effects. Cross your fingers.
Tomorrow, I meet with the doctors that installed my port and PEG. That should be interesting.
Wednesday, February 10, 2010
The Adventure Begins
On Monday, 8 Feb, I went to Interventional Radiology to have my Port-A-Catheter and PEG installed. These procedures were to be given under conscious sedation, which means I’m awake, but so drugged out of it I shouldn’t remember a thing. They lied. I remember it all. I didn’t feel much, but I remember it all. The operating room was ice cold, they gave me the usual open backed gown and let me keep my socks on (like that was going to keep me warm. They did put a blanket over me while they prepped me for the procedure and we waited for the doctors. They shaved my upper right chest and shoulder, and then washed it off with ice cold alcohol. Then they opened up what seemed to be a large paper sheet with plastic adhesive sections. They tore off a section of the paper revealing a clear section probably 12 inches by 12 inches and pressed that on my chest, neck and shoulder. They started the happy juice and a few minutes later told me I was going to feel a slight prick on my lower neck just at my clavicle. Prick my ass! evidently the happy juice hadn’t quite taken affect yet. They fiddled around that area for a while and then started 4 or 5 inches below that on my chest. They made an incision there which I didn’t really feel and they inserted the port and snaked the tube to my vein. They checked it all out and sewed me up. Then they started on the PEG. Same procedure, shaved the left side of my belly about 6 inches above my belly button and about 3 inches to the left. Again with the ice cold alcohol and the plastic piece. Then they told me they were going to insert a tube in my nose down my throat and into my stomach. I told them I’d had the camera done the same way to find the tumor on my tongue and they said the tube was smaller, so it shouldn’t bother me too much. Right ! They sprayed some stuff down my throat that was supposed to numb it so I didn’t feel the tube, it worked to some extent. I could feel it at the back of my nasal passage and right where my throat and esophagus meet up. It wasn’t terribly uncomfortable, it just felt like something was caught in my throat and I needed to swallow a lot. Then started the poking and probing into my stomach. I won’t go into the gory details, but there was a lot of “you’re going to feel some pressure now,” statements. This all took about 2 hours and left me with a tender sore shoulder and a very tender stomach with a 8 inch tube hanging out of it.
They brought me up to one of the ward and gave me a nice room to myself with a view. A nurse and a tech came in and introduced themselves, took my vital signs and hooked me up to an IV bag. Then I was told I couldn’t eat or drink anything for 24 hours. This was around 3:00pm. I hadn’t eaten anything since 7:00pm the day before and hadn’t had anything to drink since mid-night. Terry hung around until about 6:00pm they headed home to feed the dogs. Around 7:00pm I got a room mate, an Air Force basic trainee in for a hernia operation. He was a bit groggy and went through the nurse, tech introduction drill like I did a few hours earlier.
Every 3 hours someone came by and checked our vitals and asked what our pain level was on a scale of 1 to 10. I was somewhat uncomfortable, but declined any pain medication. I guess the pain medication hadn’t worn off from the procedures earlier in the day. About 10:00pm they came by with my cholesterol medication, so I told them I’d take some pain medication then so I could fall asleep.
About that time my room mate got lonely and decided to strike up a conversation. He was an Airman about 19 – 20 years old and had just graduated from basic training. He is waiting to be shipped off to his technical school in Monterey, California. It was a little interesting the 25 year, retired Chief Master Sergeant and the newbie Airman swapping stories. He’s a good kid and will probably go far, if he stays in. I let him use my cell phone to call his parents and let them know he was doing well.
I did sleep, but only in 3 hour stints. I’m not used to sleeping on my back and after so many hours of lying on my back it was getting a little uncomfortable. Oh yeah, at 10:00pm they also decided to strap some leggings around my calves to prevent blood clots. These things were hooked up to an air pump that inflated the leggings every 40 seconds or so. They held the air for just a few seconds then deflated. I still managed to get some sleep.
Around 7:30am they brought my room mate his breakfast, I got a mouth full of water and a pill. We were both scheduled to be discharged sometime during the morning. We all knew that I had a 2:00pm appointment for my first chemo therapy. I was discharged at 1:50pm and high tailed it down one floor to the Oncology clinic.
I checked in and took a seat in the waiting room, I had a splitting headache, I think due to lack of coffee. My plan was to be discharged and go down and get some coffee. That obviously did not happen. One of the nurses came and got me, put me in a very comfortable recliner and went over the procedure. First I was to receive a dose of Benadryl and a dose of Nexium, these were to fight off some of the side effects of the Erbitux. They hooked me up, offered me a Girl Scout cookie, which I turned down, but sheepishly asked if they had any coffee. The nurse said she didn’t think so, but she’d check. Ten minutes later she came back with a large steaming cup of coffee. She went and made a pot just for me. I think I’m going to like these folks. Once the Benadryl and nexium were administered they hooked up the bag of Erbitux. Being as it was my first session, I got a double dose and it was going to take 2 hours to administer. I was told to let them know if I was feeling any side effects immediately. Once the coffee cooled enough to drink I downed about ¾ of the cup, that eased my headache to a manageable level. The Benadryl kicked in and made me drowsy and I drifted off for about an hour and a half. About that time Terry showed up to collect me, I was the last one left in the therapy room, and then they told me I needed to be watched for another hour. They brought me to another location on the floor, set-up in another recliner and we waited an hour. No side effects, they let me go home. I’d been in the hospital 33 hours.
We went home, had some dinner, watched a little TV, I took a Percocet and slept through the night.
At 4:30am the alarm went off and Terry got up to get ready for work. I gingerly got out of bed, went into the kitchen to make Terry her lunch and decided my stomach hurt just enough where I wouldn’t go into work. I finished making her lunch, popped a Percocet and went back to bed.
So, I’m officially in therapy. Next Tuesday I start radiation . . . the adventure continues.
They brought me up to one of the ward and gave me a nice room to myself with a view. A nurse and a tech came in and introduced themselves, took my vital signs and hooked me up to an IV bag. Then I was told I couldn’t eat or drink anything for 24 hours. This was around 3:00pm. I hadn’t eaten anything since 7:00pm the day before and hadn’t had anything to drink since mid-night. Terry hung around until about 6:00pm they headed home to feed the dogs. Around 7:00pm I got a room mate, an Air Force basic trainee in for a hernia operation. He was a bit groggy and went through the nurse, tech introduction drill like I did a few hours earlier.
Every 3 hours someone came by and checked our vitals and asked what our pain level was on a scale of 1 to 10. I was somewhat uncomfortable, but declined any pain medication. I guess the pain medication hadn’t worn off from the procedures earlier in the day. About 10:00pm they came by with my cholesterol medication, so I told them I’d take some pain medication then so I could fall asleep.
About that time my room mate got lonely and decided to strike up a conversation. He was an Airman about 19 – 20 years old and had just graduated from basic training. He is waiting to be shipped off to his technical school in Monterey, California. It was a little interesting the 25 year, retired Chief Master Sergeant and the newbie Airman swapping stories. He’s a good kid and will probably go far, if he stays in. I let him use my cell phone to call his parents and let them know he was doing well.
I did sleep, but only in 3 hour stints. I’m not used to sleeping on my back and after so many hours of lying on my back it was getting a little uncomfortable. Oh yeah, at 10:00pm they also decided to strap some leggings around my calves to prevent blood clots. These things were hooked up to an air pump that inflated the leggings every 40 seconds or so. They held the air for just a few seconds then deflated. I still managed to get some sleep.
Around 7:30am they brought my room mate his breakfast, I got a mouth full of water and a pill. We were both scheduled to be discharged sometime during the morning. We all knew that I had a 2:00pm appointment for my first chemo therapy. I was discharged at 1:50pm and high tailed it down one floor to the Oncology clinic.
I checked in and took a seat in the waiting room, I had a splitting headache, I think due to lack of coffee. My plan was to be discharged and go down and get some coffee. That obviously did not happen. One of the nurses came and got me, put me in a very comfortable recliner and went over the procedure. First I was to receive a dose of Benadryl and a dose of Nexium, these were to fight off some of the side effects of the Erbitux. They hooked me up, offered me a Girl Scout cookie, which I turned down, but sheepishly asked if they had any coffee. The nurse said she didn’t think so, but she’d check. Ten minutes later she came back with a large steaming cup of coffee. She went and made a pot just for me. I think I’m going to like these folks. Once the Benadryl and nexium were administered they hooked up the bag of Erbitux. Being as it was my first session, I got a double dose and it was going to take 2 hours to administer. I was told to let them know if I was feeling any side effects immediately. Once the coffee cooled enough to drink I downed about ¾ of the cup, that eased my headache to a manageable level. The Benadryl kicked in and made me drowsy and I drifted off for about an hour and a half. About that time Terry showed up to collect me, I was the last one left in the therapy room, and then they told me I needed to be watched for another hour. They brought me to another location on the floor, set-up in another recliner and we waited an hour. No side effects, they let me go home. I’d been in the hospital 33 hours.
We went home, had some dinner, watched a little TV, I took a Percocet and slept through the night.
At 4:30am the alarm went off and Terry got up to get ready for work. I gingerly got out of bed, went into the kitchen to make Terry her lunch and decided my stomach hurt just enough where I wouldn’t go into work. I finished making her lunch, popped a Percocet and went back to bed.
So, I’m officially in therapy. Next Tuesday I start radiation . . . the adventure continues.
Saturday, February 6, 2010
What a week !
On Thursday, 4 Feb, I went for my mask fitting and radiation simulation. I’m writing the President and letting him know I’ve found a new enhanced interrogation technique that makes water boarding obsolete. If we want answers to any questions just send the guilty party down to the radiation office in the basement of Wilford Hall Medical Center and have them fitted with a radiation therapy mask, after 20 minutes they’ll be singing like birds.
They lay you down on the treatment table, have you put in your teeth radiation scatter guards and then have you bite down on something that looks like a mini-fudgecycle that’s made out of Styrofoam. This of course gets the drool machine going. All this time they’ve been warming up a sheet of plastic mesh to make it soft and pliable. As you’re laying on the table with your mouth guards in, sucking on the styrofoam tongue depressor they drop this hot mesh over your head and upper chest and ratchet it down. Kind of like those vacuum toys we had as kids, heat up a small sheet of plastic, place it over a mold then turn on the vacuum and wha-la you have a perfect impression of my head. This thing takes about 15 minutes to cool and become rock hard. Its purpose is to lock your head and upper torso into the same position every time you come in for a treatment. I’m not claustrophobic so that didn’t bother me all that much, what did get my attention was the fact that I was laying on my back with this huyanker in my mouth, drooling and having a very hard time swallowing. (hence the letter to the President) Early on in the radiation treatment this won’t be too bad, but once my throat starts giving me problems I can see where I’m going to be one uncomfortable hombre. Later on that same day we did a CT scan to set-up the radiation treatment aiming points. They used the lock-down mask and the tongue depressor thingy again. I’m beginning to think that maybe surgery wasn’t such a bad option.
I also went and got pre-admitted for my procedures on Monday the 8th. That’s when they will be putting in the PEG and CVC. I’ve got to stay over night in the hospital so they can monitor the PEG, they don’t want my stomach contents leaking out into my abdominal cavity. They tell me that’s a bad thing. So it’ll be like a big sleep-over, movies, pop corn and maybe a pillow fight with some retired Korean War Ace with a colostomy bag.
Friday I went in and saw Ms Phyllis at speech pathology and she gave me a bunch of exercises for my tongue and throat. We were like a couple of kids sitting across a table from each other sticking our tongues out at each other and making silly noises to stretch my vocal cords. I make light of all this, but I know it’s all good therapy to keep my throat in shape and ensure my ability to continue to swallow.
I also met with Nurse Sandra; she went over my chemo therapy and all of the side effects of Erbitux, nutrition, the PEG and CVC, the importance of staying healthy and what to do if I get a fever or start feeling real bad. She seems very concerned and caring. She must have one hell of a positive attitude to continue working in a chemotherapy clinic. I’ve been looking around and there are a lot of seriously sick people around there. Some newbie is going to see me in 4 – 5 weeks and think the same thing.
So, it’s been an interesting week. So far I’ve been keeping a positive attitude and have been able to make what I think are the right decisions for my treatment. My wife, Terry has been a good sounding board and has provided the needed course corrections when I’m unsure of something. Therapy starts next week with my first treatment of Erbitux and the following week starts my once a day radiation treatments. In the future I may not be as flippant and sarcastic about my daily happenings, but rest assured I’ll make up for it when this is all behind me.
They lay you down on the treatment table, have you put in your teeth radiation scatter guards and then have you bite down on something that looks like a mini-fudgecycle that’s made out of Styrofoam. This of course gets the drool machine going. All this time they’ve been warming up a sheet of plastic mesh to make it soft and pliable. As you’re laying on the table with your mouth guards in, sucking on the styrofoam tongue depressor they drop this hot mesh over your head and upper chest and ratchet it down. Kind of like those vacuum toys we had as kids, heat up a small sheet of plastic, place it over a mold then turn on the vacuum and wha-la you have a perfect impression of my head. This thing takes about 15 minutes to cool and become rock hard. Its purpose is to lock your head and upper torso into the same position every time you come in for a treatment. I’m not claustrophobic so that didn’t bother me all that much, what did get my attention was the fact that I was laying on my back with this huyanker in my mouth, drooling and having a very hard time swallowing. (hence the letter to the President) Early on in the radiation treatment this won’t be too bad, but once my throat starts giving me problems I can see where I’m going to be one uncomfortable hombre. Later on that same day we did a CT scan to set-up the radiation treatment aiming points. They used the lock-down mask and the tongue depressor thingy again. I’m beginning to think that maybe surgery wasn’t such a bad option.
I also went and got pre-admitted for my procedures on Monday the 8th. That’s when they will be putting in the PEG and CVC. I’ve got to stay over night in the hospital so they can monitor the PEG, they don’t want my stomach contents leaking out into my abdominal cavity. They tell me that’s a bad thing. So it’ll be like a big sleep-over, movies, pop corn and maybe a pillow fight with some retired Korean War Ace with a colostomy bag.
Friday I went in and saw Ms Phyllis at speech pathology and she gave me a bunch of exercises for my tongue and throat. We were like a couple of kids sitting across a table from each other sticking our tongues out at each other and making silly noises to stretch my vocal cords. I make light of all this, but I know it’s all good therapy to keep my throat in shape and ensure my ability to continue to swallow.
I also met with Nurse Sandra; she went over my chemo therapy and all of the side effects of Erbitux, nutrition, the PEG and CVC, the importance of staying healthy and what to do if I get a fever or start feeling real bad. She seems very concerned and caring. She must have one hell of a positive attitude to continue working in a chemotherapy clinic. I’ve been looking around and there are a lot of seriously sick people around there. Some newbie is going to see me in 4 – 5 weeks and think the same thing.
So, it’s been an interesting week. So far I’ve been keeping a positive attitude and have been able to make what I think are the right decisions for my treatment. My wife, Terry has been a good sounding board and has provided the needed course corrections when I’m unsure of something. Therapy starts next week with my first treatment of Erbitux and the following week starts my once a day radiation treatments. In the future I may not be as flippant and sarcastic about my daily happenings, but rest assured I’ll make up for it when this is all behind me.
Tuesday, February 2, 2010
Second Opinion Anyone?
First off, I went in and talked to Dr. Richard today. It was pretty much a replay of Friday’s telephone conversation, but he showed me a couple of studies concerning the use of Cisplatin and Erbitux. The weren’t side by side comparisons, but they were enough for us to make an educated decision to go the Erbitux route for treatment along with radiation. We also discussed the installation of the CVC and the PEG again. I agreed to both, figuring it’s easier to get them installed at the beginning rather then wait until my immune system is beat down and have to go into the hospital for same day surgery to get them installed. I may not have to use the PEG for 4 – 5 weeks (or maybe not at all). I figured if anything I could always use it for hydration if swallowing gets to be too much of a pain.
On to the second opinion. I met with Dr. Prestidge at the Texas Cancer Center here in San Antonio. He’s an ex-Air Force radiation-oncologist. We did the mandatory medical history stuff and then on to the review of symptoms and what treatment I’ve received since Nov 09. Then he did a physical exam and stuck his finger down my throat until I gagged. Then we got down to the meat of the reason I was there, to compare notes and pick his brain. Good or bad he confirmed everything the other doctors have been telling me and lowered my anxiety level about thinking the radiation technology they have here at Wilford Hall Medical Center where I am being treated is as good as anywhere else. He also assured me that the other radiation technologies I was asking about were not targeted towards my type of cancer or my stage of cancer. We discussed the chemo therapy options and he agreed that Erbitux was a good choice. He gave me some samples of products he thought I should ask about when I see Dr. Akins again that will address some of the side effects of the radiation treatment and Erbitux. All in all, I felt good about the second opinion and feel good about going ahead with the treatment doctors Akins and Richard are recommending.
More appointments later in the week; mask fitting and simulation run through. I should get an appointment for the same day surgery for installation of the CVC and PEG very soon. They want to give me my first dose of Erbitux on Tuesday next week and they would like the CVC installed by then.
On to the second opinion. I met with Dr. Prestidge at the Texas Cancer Center here in San Antonio. He’s an ex-Air Force radiation-oncologist. We did the mandatory medical history stuff and then on to the review of symptoms and what treatment I’ve received since Nov 09. Then he did a physical exam and stuck his finger down my throat until I gagged. Then we got down to the meat of the reason I was there, to compare notes and pick his brain. Good or bad he confirmed everything the other doctors have been telling me and lowered my anxiety level about thinking the radiation technology they have here at Wilford Hall Medical Center where I am being treated is as good as anywhere else. He also assured me that the other radiation technologies I was asking about were not targeted towards my type of cancer or my stage of cancer. We discussed the chemo therapy options and he agreed that Erbitux was a good choice. He gave me some samples of products he thought I should ask about when I see Dr. Akins again that will address some of the side effects of the radiation treatment and Erbitux. All in all, I felt good about the second opinion and feel good about going ahead with the treatment doctors Akins and Richard are recommending.
More appointments later in the week; mask fitting and simulation run through. I should get an appointment for the same day surgery for installation of the CVC and PEG very soon. They want to give me my first dose of Erbitux on Tuesday next week and they would like the CVC installed by then.
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