Oh readers, I am so sorry that I havent been able to update. I have no strength or energy in me right now to do so. I swear, bu the end of the weekend somethng new will be up. Just been one hell of a week,,
Thanks so much.
Adam
Wednesday, March 7, 2012
Thursday, March 1, 2012
A Day at a Time
A day at a time is really all that I can take right now. It's honestly getting pretty bad. Right now, I am doing good, but last night and this morning were an entirely different story.
Yesterday, during the day, I had my final set of images taken. This was one of those hour long appointments in which I am under the mask and have the mouthpiece in the whole time. The images came back clean, again a good thing. It means that on Tuesday, I begin my last radiation spray schedule. The whole time that I have been in radiation treatment so far, I have been receiving radiation in three places. Once this new schedule kicks in, it will be reduced to two places that I will receive the radiation. This is good that some of the places that have received it will have the chance to start to heal. The places that they will be targeting though, will receive a much more intense amount of radiation, and will probably be much more sore.
What I am hoping is that the radiation backs away from my throat a little bit. It's killing me. They say that it's hard to say if this is going to help my throat or not, but they believe that it it is likely that my throat does feel a little relief. We'll deal with what it makes hurt worse later, I guess.
I met with my nurses, nutritionist and a doctor again yesterday too. They, at the time, said that overall they were impressed with where I was. I'm still eating (though it is much more difficult), and still getting around some. The thing that I think impressed them the most was the condition of my skin. I am showing some redness in the area, but it's really not too bad. The burning, on the outside, is pretty minimal.
Last night though, the pain really started getting bad. It hurts to eat, hurts to drink, to take pills, even to swallow. This is mostly because of the mucus. I tried to take an oxychodone and head to bed early. The problem is that even though they are so small, I couldn't even get that down I was so sore. I had taken the magic mouthwash and lidocane before trying to take the oxy, but it was still too big and rough to swallow. I had to spit it out twice before finally getting it down. I was in bed by 8ish, and pretty out of it. It worked for a while, though I woke at about midnight hurting again. The magic mouthwash took care of it that time on it's own though. I woke up one more time at 4 am, hurting pretty badly. Again, more meds, more sleep.
When I woke up this morning, I was still in pretty bad shape. I got an oxy down, and Beth crushed up my anti nausea, my anti mucus, my steroid, and helped me get them down. Once I got to the doctor, They gave me a liquid oxychodone, which helped SO fast. I was able to tolerate the entire treatment again today with no gagging or anything.
I contemplated putting this in, and this paragraph is a bit graphic, so feel free to skip over it if you get grossed out easily. The thing that is making my mouth the most painful is the mucus. It's so thick. They say that it is what is creating the sores all over my mouth, and that unfortunately, there is just not a lot that they can do with it. They told me about a few natural home remedies that I can try, like Chinese egg drop soup, to take on top of the cough syrup that they gave me that is supposed to help. The other thing they gave me is basically a bunch of sponges on sticks. With these, you get them wet, roll them around in your mouth and pull them back out- it works kind of like spaghetti on a fork when you twirl it. It collects it all and pulls it out. It helps for a bit, but it's pretty temporary.
So for pain now, I am on the liquid oxy, on top of tylenol every 4 hours, and advil every alternating 4 hours (basically every two hours I am taking one of the two). They also have me on the magic mouthwash and the lidocane. I havent done a count again for a few days, but believe that I have made it to 20 or 21 different medications. The next post I do I'll try to get a picture of all of them again.
I am supposed to start getting up at night to stay on top of them instead of just sleeping through the night right now. If I count all of the "doses" that I am taking, I believe it to be a bit over 40 different things a day. It's a bit of a process just keeping up with it.
Alright, well, I think that's the update. They say to expect big nights of ups and downs. I'm glad the count is getting low right now, as it's hard to admit, but I just don't know how much more of this I have in me. I know I can make it through what's left, but if it was anymore than that, it would be a struggle.
Six days left though. Just six.
Yesterday, during the day, I had my final set of images taken. This was one of those hour long appointments in which I am under the mask and have the mouthpiece in the whole time. The images came back clean, again a good thing. It means that on Tuesday, I begin my last radiation spray schedule. The whole time that I have been in radiation treatment so far, I have been receiving radiation in three places. Once this new schedule kicks in, it will be reduced to two places that I will receive the radiation. This is good that some of the places that have received it will have the chance to start to heal. The places that they will be targeting though, will receive a much more intense amount of radiation, and will probably be much more sore.
What I am hoping is that the radiation backs away from my throat a little bit. It's killing me. They say that it's hard to say if this is going to help my throat or not, but they believe that it it is likely that my throat does feel a little relief. We'll deal with what it makes hurt worse later, I guess.
I met with my nurses, nutritionist and a doctor again yesterday too. They, at the time, said that overall they were impressed with where I was. I'm still eating (though it is much more difficult), and still getting around some. The thing that I think impressed them the most was the condition of my skin. I am showing some redness in the area, but it's really not too bad. The burning, on the outside, is pretty minimal.
Last night though, the pain really started getting bad. It hurts to eat, hurts to drink, to take pills, even to swallow. This is mostly because of the mucus. I tried to take an oxychodone and head to bed early. The problem is that even though they are so small, I couldn't even get that down I was so sore. I had taken the magic mouthwash and lidocane before trying to take the oxy, but it was still too big and rough to swallow. I had to spit it out twice before finally getting it down. I was in bed by 8ish, and pretty out of it. It worked for a while, though I woke at about midnight hurting again. The magic mouthwash took care of it that time on it's own though. I woke up one more time at 4 am, hurting pretty badly. Again, more meds, more sleep.
When I woke up this morning, I was still in pretty bad shape. I got an oxy down, and Beth crushed up my anti nausea, my anti mucus, my steroid, and helped me get them down. Once I got to the doctor, They gave me a liquid oxychodone, which helped SO fast. I was able to tolerate the entire treatment again today with no gagging or anything.
I contemplated putting this in, and this paragraph is a bit graphic, so feel free to skip over it if you get grossed out easily. The thing that is making my mouth the most painful is the mucus. It's so thick. They say that it is what is creating the sores all over my mouth, and that unfortunately, there is just not a lot that they can do with it. They told me about a few natural home remedies that I can try, like Chinese egg drop soup, to take on top of the cough syrup that they gave me that is supposed to help. The other thing they gave me is basically a bunch of sponges on sticks. With these, you get them wet, roll them around in your mouth and pull them back out- it works kind of like spaghetti on a fork when you twirl it. It collects it all and pulls it out. It helps for a bit, but it's pretty temporary.
So for pain now, I am on the liquid oxy, on top of tylenol every 4 hours, and advil every alternating 4 hours (basically every two hours I am taking one of the two). They also have me on the magic mouthwash and the lidocane. I havent done a count again for a few days, but believe that I have made it to 20 or 21 different medications. The next post I do I'll try to get a picture of all of them again.
I am supposed to start getting up at night to stay on top of them instead of just sleeping through the night right now. If I count all of the "doses" that I am taking, I believe it to be a bit over 40 different things a day. It's a bit of a process just keeping up with it.
Alright, well, I think that's the update. They say to expect big nights of ups and downs. I'm glad the count is getting low right now, as it's hard to admit, but I just don't know how much more of this I have in me. I know I can make it through what's left, but if it was anymore than that, it would be a struggle.
Six days left though. Just six.
Tuesday, February 28, 2012
HALF WAY THERE!
Today was the half way point! So excited. I honestly don't have a lot to update on- just figured that this milestone deserved it's own post.
Overall, I'm still doing very well. My throat has it's moments of bad pain, but so far everything is tolerable. My energy level comes and goes. It's 7:19 as I write this, and bed is looking like it may come very soon. I think that is the hardest part- the energy level is just none. I always have these grandiose ideas of getting things done, but just never get to them. Oh well, just how it goes I guess.
While I am getting the calories that I need (still can't believe that they say that I need about 3400 calories a day), it is getting more difficult. Anything that is not very soft is harder to swallow. Anything that leaves crumbs in your mouth are horrid, as I produce no saliva to help take care of them. I have multiple sores now on the inside of my mouth, so trying to clean up those crumbs with my tongue just makes it all painful. My best friends lately seem to be macaroni, mashed potatoes, ice cream and yogurt. They say that the sores will not go away until well after this is done, and that more will probably appear- I have something called mucusitus- a heavy mucus that forms in your mouth. That is what is causing the sores. Honestly, it's pretty nasty. Maybe too much detail for some here, but when I spit, it sticks to my tongue or my lips. It's so thick it won't come out.
The magic mouthwash, which I mentioned in an older post, does help to comfort this quite a bit. It seriously is like the consistency of glue it's so thick. I take just a little bit of it, swish it around the best I can, then, depending on if my throat needs it, either spit it out or swallow it. Whatever it touches, basically, it numbs. They say it's a mixture of lidocane, maalox and benadryl. It does the job for a while at least. The problem is that it's so thick, its hard to swallow. And, while my taste is pretty much gone, for some reason, my tongue finds it comical to still be able to taste this and other medicines.
Tomorrow I have my last long appointment they do under the mask. They again have to take a series of images so that they can change the pattern that I am receiving radiation in one more time. They say that I will be under the mask for about an hour, starting at 10- so if you read this before then, send me some good vibes, because with my mouth already feeling so beat up, this is getting tougher. Once those images are done, it's just standard appointments for the rest of the time. On Tuesday of next week, they start the new pattern. They will change from radiating me in three spots (it's always been three spots so far) to just two, but say that those two spots will be pretty intense. They think that if the cancer is still anywhere, that is where it is. I will do that for 5 appointments, then I'm outta there!
Once treatment is done, they tell me that it will still be at least 6 months before I am feeling human again. Things will come back slowly according to them. They say that taste usually returns in 2-6 months afterwords, that heavy fatigue is expected at least six months out, that a return to a normal level of salivation is probably never going to happen, but will get better within a year or two. They also say that I probably won't feel normal again until about a year out- and that normal will be a new version of normal for me (not that I ever met the normal qualifications anyway).
Also once treatment stops, I still have to go in for scans on a regular basis. For the first three years, they say that they want me in every three months. After that, it drops to every six months for two years. After that, its once a year forever. I'll feel good once I hit that once a year point, but am confident that things are already just fine now.
Anyway, 8 more to go! The countdown begins 'till I'm at home, in my bed, with my pets, with my wife, on my beach. I can't wait. Just 8 more.
Overall, I'm still doing very well. My throat has it's moments of bad pain, but so far everything is tolerable. My energy level comes and goes. It's 7:19 as I write this, and bed is looking like it may come very soon. I think that is the hardest part- the energy level is just none. I always have these grandiose ideas of getting things done, but just never get to them. Oh well, just how it goes I guess.
While I am getting the calories that I need (still can't believe that they say that I need about 3400 calories a day), it is getting more difficult. Anything that is not very soft is harder to swallow. Anything that leaves crumbs in your mouth are horrid, as I produce no saliva to help take care of them. I have multiple sores now on the inside of my mouth, so trying to clean up those crumbs with my tongue just makes it all painful. My best friends lately seem to be macaroni, mashed potatoes, ice cream and yogurt. They say that the sores will not go away until well after this is done, and that more will probably appear- I have something called mucusitus- a heavy mucus that forms in your mouth. That is what is causing the sores. Honestly, it's pretty nasty. Maybe too much detail for some here, but when I spit, it sticks to my tongue or my lips. It's so thick it won't come out.
The magic mouthwash, which I mentioned in an older post, does help to comfort this quite a bit. It seriously is like the consistency of glue it's so thick. I take just a little bit of it, swish it around the best I can, then, depending on if my throat needs it, either spit it out or swallow it. Whatever it touches, basically, it numbs. They say it's a mixture of lidocane, maalox and benadryl. It does the job for a while at least. The problem is that it's so thick, its hard to swallow. And, while my taste is pretty much gone, for some reason, my tongue finds it comical to still be able to taste this and other medicines.
Tomorrow I have my last long appointment they do under the mask. They again have to take a series of images so that they can change the pattern that I am receiving radiation in one more time. They say that I will be under the mask for about an hour, starting at 10- so if you read this before then, send me some good vibes, because with my mouth already feeling so beat up, this is getting tougher. Once those images are done, it's just standard appointments for the rest of the time. On Tuesday of next week, they start the new pattern. They will change from radiating me in three spots (it's always been three spots so far) to just two, but say that those two spots will be pretty intense. They think that if the cancer is still anywhere, that is where it is. I will do that for 5 appointments, then I'm outta there!
Once treatment is done, they tell me that it will still be at least 6 months before I am feeling human again. Things will come back slowly according to them. They say that taste usually returns in 2-6 months afterwords, that heavy fatigue is expected at least six months out, that a return to a normal level of salivation is probably never going to happen, but will get better within a year or two. They also say that I probably won't feel normal again until about a year out- and that normal will be a new version of normal for me (not that I ever met the normal qualifications anyway).
Also once treatment stops, I still have to go in for scans on a regular basis. For the first three years, they say that they want me in every three months. After that, it drops to every six months for two years. After that, its once a year forever. I'll feel good once I hit that once a year point, but am confident that things are already just fine now.
Anyway, 8 more to go! The countdown begins 'till I'm at home, in my bed, with my pets, with my wife, on my beach. I can't wait. Just 8 more.
Sunday, February 26, 2012
SINGLE DIGITS!
I think that the best way to get this is to basically make the small steps seem big. I hit single digits left in radiation as of Friday. My next appointment, on Tuesday, brings it to the half way point. After Wednesday, I can say "only one wednesday left"- same with Thursday and Friday. Then, next Tuesday, it turns into "only one weeks worth". Then I start checking those days off- "never again on a Wednesday", etc.
They keep prepping me for pain. I'm sore, but I don't hurt. I will admit, I am a bit afraid of what to come. But at the same time, I'm doing well. I believe that I'm in good shape for where I am in the treatment. I look at other people at the hospital who are in a similar place to me, and know that I am less red than they are, that I am still smiling when I know they are not. I'm holding out hope that the pain won't be too bad, but like I said, boy, are they prepping me. I was told that they are expecting me to likely be needing 3 oxychodone every 4 hours, and that even then, I may be in a 5 out of 10 pain the whole time.
On Friday, the overall appointment went well. I am still gagging occasionally under the mask, and had to have them remove it just prior to radiation as I couldn't stop. It usually just takes a couple more minutes though, and I'm good to go.
I was also placed on two more medications on Friday as well. The total is up to 15. The latest are for thrush and to break up mucus.
I think that the discomfort in my mouth is the hardest. Sorry if I get to graphic for some, but this is what it is. The mucus is so thick when I have it that sometimes it's just hard to swallow it. Other times, really most of the time, my mouth is so dry it hurts. Liquid doesn't help. Originally one of my anti-nausea pills was a dissolve on your tongue pill. The problem is that I would take one, and 10 minutes later, in the middle of my tongue it would sit, maybe just a bit smaller.
This, I know, will get worse before it gets better. But, it will get better. They say that the salivary glands on the right side of my mouth are dead and gone. They won't come back. The glands on the left side of my mouth will eventually produce more saliva, and kind of help bring my mouth back to a normal stage. It just takes time. That is also why I have to do half hour flouride treatments to myself for half hour every night for the rest of my life- it's your saliva that coats and protects your teeth.
I think I mentioned it in my last post, but taste really is pretty much a thing of the past now. There are still just a few things that taste, but most of them taste the same, and taste nothing like what they should. My parents were nice enough to buy cheesecake for me last night- even with berries on it, I could taste nothing. Tonight, we had spaghetti, salad, and bread for dinner. I could taste the salad dressing. Certain things are starting to hurt too. Garlic, for some reason, burns. Hot drinks feel like I am just burning another burn more.
Eating is definitely no longer fun. I was told in the beginning of treatment that I would need to consider it a medicine- that I would have to make myself eat. I getting to that point. With no flavor, most foods just aren't enjoyable. I start to get nauseated if I don't eat though, so I still have good reason to keep myself full.
I don't remember if I mentioned this in my last post, but I have lost three pounds since radiation actually started. I got a text from my aunt teasing me that hey, at least I can lose weight out of the deal! The problem is that if I lose too much, the mask doesn't fit right, and they lose control over where the radiation is hitting. Three pounds is in their safe zone, but keeping my weight consistant during radiation is pretty critical. Losing too much weight brings the possibility of the worst side effects, like parilyzation, up. I will say though, that since the surgery, I have lost 13 pounds. The surgery was on December 9.
At this point, I want to tell everyone I am HONESTLY doing very well. I have days of emotional and physical difficulty, but for the most part I am doing good. I post a lot of the difficult stuff in hopes that someday maybe somebody going through the same thing as me may get some information that they need- to know what to expect.
I know I'm lucky- I have the most amazing support group. Mom, Dad, Beth, Bryan, Ann, Ralph, Seth, Kim, all the friends that have offered to meet me for coffee to keep me company, to my extended families, who call my parents all the time to check in on me, to all the people who read this, who post words of encouragement on facebook, you are making this somehow a positive (in a twisted sort of way) experience for me. Your prayers, thoughts and support help. Tremendously. Lastly, Amy, thank you. I know that this is so hard. Thanks for the late night talks when I need them, for coming up every weekend, for giving me the tough love when I need it, and the comfort when I need that. You are amazing to me. So thank you all. I will post this again- I will probably post it often. Without any of you, I don't think I could do this at all. With all of you, you make it easy.
Nine more treatments.
They keep prepping me for pain. I'm sore, but I don't hurt. I will admit, I am a bit afraid of what to come. But at the same time, I'm doing well. I believe that I'm in good shape for where I am in the treatment. I look at other people at the hospital who are in a similar place to me, and know that I am less red than they are, that I am still smiling when I know they are not. I'm holding out hope that the pain won't be too bad, but like I said, boy, are they prepping me. I was told that they are expecting me to likely be needing 3 oxychodone every 4 hours, and that even then, I may be in a 5 out of 10 pain the whole time.
On Friday, the overall appointment went well. I am still gagging occasionally under the mask, and had to have them remove it just prior to radiation as I couldn't stop. It usually just takes a couple more minutes though, and I'm good to go.
I was also placed on two more medications on Friday as well. The total is up to 15. The latest are for thrush and to break up mucus.
I think that the discomfort in my mouth is the hardest. Sorry if I get to graphic for some, but this is what it is. The mucus is so thick when I have it that sometimes it's just hard to swallow it. Other times, really most of the time, my mouth is so dry it hurts. Liquid doesn't help. Originally one of my anti-nausea pills was a dissolve on your tongue pill. The problem is that I would take one, and 10 minutes later, in the middle of my tongue it would sit, maybe just a bit smaller.
This, I know, will get worse before it gets better. But, it will get better. They say that the salivary glands on the right side of my mouth are dead and gone. They won't come back. The glands on the left side of my mouth will eventually produce more saliva, and kind of help bring my mouth back to a normal stage. It just takes time. That is also why I have to do half hour flouride treatments to myself for half hour every night for the rest of my life- it's your saliva that coats and protects your teeth.
I think I mentioned it in my last post, but taste really is pretty much a thing of the past now. There are still just a few things that taste, but most of them taste the same, and taste nothing like what they should. My parents were nice enough to buy cheesecake for me last night- even with berries on it, I could taste nothing. Tonight, we had spaghetti, salad, and bread for dinner. I could taste the salad dressing. Certain things are starting to hurt too. Garlic, for some reason, burns. Hot drinks feel like I am just burning another burn more.
Eating is definitely no longer fun. I was told in the beginning of treatment that I would need to consider it a medicine- that I would have to make myself eat. I getting to that point. With no flavor, most foods just aren't enjoyable. I start to get nauseated if I don't eat though, so I still have good reason to keep myself full.
I don't remember if I mentioned this in my last post, but I have lost three pounds since radiation actually started. I got a text from my aunt teasing me that hey, at least I can lose weight out of the deal! The problem is that if I lose too much, the mask doesn't fit right, and they lose control over where the radiation is hitting. Three pounds is in their safe zone, but keeping my weight consistant during radiation is pretty critical. Losing too much weight brings the possibility of the worst side effects, like parilyzation, up. I will say though, that since the surgery, I have lost 13 pounds. The surgery was on December 9.
At this point, I want to tell everyone I am HONESTLY doing very well. I have days of emotional and physical difficulty, but for the most part I am doing good. I post a lot of the difficult stuff in hopes that someday maybe somebody going through the same thing as me may get some information that they need- to know what to expect.
I know I'm lucky- I have the most amazing support group. Mom, Dad, Beth, Bryan, Ann, Ralph, Seth, Kim, all the friends that have offered to meet me for coffee to keep me company, to my extended families, who call my parents all the time to check in on me, to all the people who read this, who post words of encouragement on facebook, you are making this somehow a positive (in a twisted sort of way) experience for me. Your prayers, thoughts and support help. Tremendously. Lastly, Amy, thank you. I know that this is so hard. Thanks for the late night talks when I need them, for coming up every weekend, for giving me the tough love when I need it, and the comfort when I need that. You are amazing to me. So thank you all. I will post this again- I will probably post it often. Without any of you, I don't think I could do this at all. With all of you, you make it easy.
Nine more treatments.
Thursday, February 23, 2012
Riding a Roller Coaster
 |
| Not the best photo, I know, but this is my army of medicine, as it stands right now. It contains 2 medicines for digestive issues, a heavy duty painkiller, 3 anti-nausea drugs (one also contains the anti-inflammatory and a steroid), fluoride, a salt/baking soda rinse, a burn lotion, a radiation specific chap stick, the magic mouthwash, and a couple other misc. items. |
If I can really get myself to stand back and look at how all of this plays out, make myself feel separated from what is actually happening to my body, this is really quite an interesting process.
Lately though, it's been a bit harder to get that separation, as things have definitely begun down that bumpy road.
I know it's been a week now since I updated, but that week has been unfortunately pretty rough. Tuesday was pretty standard- my dad drove me to radiation, had a pretty standard appointment, and had a nice evening at home.
Wednesday was a bit rougher of a day- every week or so, they have to do a set of images to determine how to continue with my treatment. While they take these images, I have to be (like with my normal radiation) completely strapped to the table. I think I mentioned this before, but that includes-
-a rubber band around my feet
-a cushion thing under my knees (actually makes it more comfortable, but does immobilize me a bit)
-a strap around my waist connected to the table
- a hand ring that keeps my hands in one place
- shoulder guards that keep my shoulders pushed down, to stretch my neck out and lock my shoulders in place
- the mouthpiece
- the headpiece, which is actually connected to the table to prevent it from moving
Wednesday had me in that for approximately 50 minutes, so not the most comfortable of days. The good to come out of it was that they said that everything looks as it should according to plan and that we can proceed with treatment exactly how they want to. Also, Ann and Ralph (Amy's grandparents) were nice enough to drive me that day (on their anniversary, HAPPY ANNIVERSARY GUYS!), take me to a wonderful lunch, and overall make it the best day that it could have been given the circumstances.
Today started out reasonably well. I was feeling pretty good for most of the morning. My brain, however, has decided that enough is enough in this whole process, and unfortunately, I can't even make it to the hospital without gagging at this point. The mouthpiece has become so uncomfortable that it seems to be having effects on me even while I'm miles away from it.
I met with the doctor after treatment (with the new scans, this was the last treatment with the radiation pattern that I had been receiving. Tomorrow brings a new pattern). They weighed me, and according to their scales, I have already dropped three pounds from this. Unfortunately, in honesty, it really probably is more, as this time I also had a coat on when they weighed me and the pockets contained at least one medicine that starts with each letter of the alphabet, from A-Z. I'm a bit worried that I am dropping too much weight, but am doing everything I can to try to keep up.
During my meet with the Doc, they asked me how the nausea I had been experiencing was doing. I told them that I still have constant issues with it, but that it's settled itself into a nice little routine, and I can at least manage it. They had me rate it, a 4 out of 10, and decided that rating was hardly acceptable. They put me back on the steroid super pill, and gave me a prescription they literally call "magic mouthwash". After meeting with him and waiting for my prescription to be filled, for the first time in a week and a half, I felt truly hungry. After a good lunch, I told my mom (my Thursday driver) that for the first time since this has really started, I actually felt good.
Good things though, just don't seem to last forever. I went back to Beth and Bryan's (Amy's parents) for the night, and was trying to relax. After some time, I began again to gag. And gag. And gag more. Uncontrollably. No reason. I called the on call line yet again (I'm sure they're getting sick of me, but they show no signs of it and are so nice every time.... Hey, I should get my money's worth out of this anyway, right?). They told me "use the magic mouthwash, drink papaya juice, and call it good".
It helped. The gagging stopped. I think it irritated the heck outta my stomach though.
I have one more appointment this week now, tomorrow, then off till Tuesday. Tuesday is also my half way point too, with only 8 treatments left.
I would love to go into more tonight, but just don't have it in me. I promise you loyal readers the harrowing tales of the magic mouthwash versus the maniacal mucus in the next installment. Ta ta for now.
Friday, February 17, 2012
Ugggggghh.
It's been a rough few days. I'm still trying to feel good about everything- to stay upbeat, and I am able to see Amy this weekend, so that is medicine on it's own, but again, it's been a rough couple days.
After my post on Tuesday about receiving radiation, and how painless it was, I started to develop some pain around my right ear and my right temple. It started small, very tolerable. As the day went on, the pain progressively got worse as the evening went on. By the end of the day, It was pretty brutal. We called the doctor on call at the UW cancer center, asking for advice.
At first, the advice was to take a couple of Tylenol, and if the pain got worse, go to the nearest ER room for pain control. I had leftover pills from my initial surgery, so asked if I could either take Vicodin or Oxychodone instead. Long story short, two Oxychodone later, I was eating (which hadn't happened all evening because of pain) and out like a light for the evening.
I was instructed to get into the clinic early the next morning so that they could discuss the issue with me and see if we could take care of the problem.
The next morning, at the appointment, I was told basically that I had a lot of swelling along the right side of the face. The swelling, according to them, was putting pressure on the right side of my face, causing the pain. They told me to, next time, take Tylenol. If that didn't help the pain, take more Oxychodone.
On the way home from that appointment, my ear immediately started hurting. Badly. I took the Tylenol and waited an hour. It made no impact whatsoever. So I took the Oxychodone, had some lunch (thanks, mom!) and took an anti-nausea that they gave me. Unfortunately, the anti-nausea didn't work, and I got sick on the side of the road on the way home. The problem didn't stop there. The nausea got so bad that I wasn't able to eat or drink anything for the rest of the day, minus about two bites of apple sauce, a sip or two of apple juice, and a small sip of ginger ale.
Again, on the phone with the on call doctor. I was instructed to take yet another anti-nausea pill, and if that didn't help enough for me to rest, hed to the closest ER again. Unfortunately that night, I couldn't avoid it. My mom brought me to Tacoma General, where they loaded me up on even more anti-nausea medicine. They got me to the point of being able to drink a can of apple juice, gave me a prescription for another kind of anti-nausea, and sent me home. At about 3am. I was up by about 6:30 this morning to get back to UW for more radiation.
At the UW appointment, they told me that they are sure that the cause of the problem is that while most radiation is very targeted, there is a minor amount of basically "residual spray". That spray, they say, is probably affecting either my temporal lobe, or the lower right side of my brain. As scary as that sounds, apparently it's somewhat common. They gave me a prescription for basically a super-pill that is an anti-inflammatory, anti-nausea, steroid all in one. After taking that, I was able to finally eat a few graham crackers and a cookie and hold it down.
They think that this will get me through the weekend, and hopefully things will be better after that.
The thing that really makes this hard is that according to my nutritionist, I should be consuming around 3,400 calories per day- and even then they are not sure that I will may maintain my current body weight-which is really important that I do.
I'm feeling pretty good now. I ate a full dinner, got some sleep, and am feeling reasonably okay. I've got good drugs to help me out. The best though- Amy's laying here next to me. I'm happy.
After my post on Tuesday about receiving radiation, and how painless it was, I started to develop some pain around my right ear and my right temple. It started small, very tolerable. As the day went on, the pain progressively got worse as the evening went on. By the end of the day, It was pretty brutal. We called the doctor on call at the UW cancer center, asking for advice.
At first, the advice was to take a couple of Tylenol, and if the pain got worse, go to the nearest ER room for pain control. I had leftover pills from my initial surgery, so asked if I could either take Vicodin or Oxychodone instead. Long story short, two Oxychodone later, I was eating (which hadn't happened all evening because of pain) and out like a light for the evening.
I was instructed to get into the clinic early the next morning so that they could discuss the issue with me and see if we could take care of the problem.
The next morning, at the appointment, I was told basically that I had a lot of swelling along the right side of the face. The swelling, according to them, was putting pressure on the right side of my face, causing the pain. They told me to, next time, take Tylenol. If that didn't help the pain, take more Oxychodone.
On the way home from that appointment, my ear immediately started hurting. Badly. I took the Tylenol and waited an hour. It made no impact whatsoever. So I took the Oxychodone, had some lunch (thanks, mom!) and took an anti-nausea that they gave me. Unfortunately, the anti-nausea didn't work, and I got sick on the side of the road on the way home. The problem didn't stop there. The nausea got so bad that I wasn't able to eat or drink anything for the rest of the day, minus about two bites of apple sauce, a sip or two of apple juice, and a small sip of ginger ale.
Again, on the phone with the on call doctor. I was instructed to take yet another anti-nausea pill, and if that didn't help enough for me to rest, hed to the closest ER again. Unfortunately that night, I couldn't avoid it. My mom brought me to Tacoma General, where they loaded me up on even more anti-nausea medicine. They got me to the point of being able to drink a can of apple juice, gave me a prescription for another kind of anti-nausea, and sent me home. At about 3am. I was up by about 6:30 this morning to get back to UW for more radiation.
At the UW appointment, they told me that they are sure that the cause of the problem is that while most radiation is very targeted, there is a minor amount of basically "residual spray". That spray, they say, is probably affecting either my temporal lobe, or the lower right side of my brain. As scary as that sounds, apparently it's somewhat common. They gave me a prescription for basically a super-pill that is an anti-inflammatory, anti-nausea, steroid all in one. After taking that, I was able to finally eat a few graham crackers and a cookie and hold it down.
They think that this will get me through the weekend, and hopefully things will be better after that.
The thing that really makes this hard is that according to my nutritionist, I should be consuming around 3,400 calories per day- and even then they are not sure that I will may maintain my current body weight-which is really important that I do.
I'm feeling pretty good now. I ate a full dinner, got some sleep, and am feeling reasonably okay. I've got good drugs to help me out. The best though- Amy's laying here next to me. I'm happy.
Wednesday, February 15, 2012
Alright, I got my radiation, now where are my superpowers?
And the countdown begins! I had my first radiation appointment today- and have 15 left. When I phrase it that way, at least to me, it just doesn't sound that bad. I'm still feeling very upbeat about everything, and am excited to finally feel like I am making progress in my treatment.
Today was the second day I have been at the hospital this week.
Yesterday consisted of a dental checkup and an all clear to begin treatment, an appointment that consisted of another CAT scan (I believe this is number 5-6 already since the process began), and some remarking of my mask (they mark the mask to line up with laser guides that they use, it makes sure that I am properly aligned with the radiation machine), and a final appointment that consisted of somewhere around 15 x-rays, more remarking of the mask, and finally a tattoo (I'm so totally like a Harley Biker now, with that one spec in the middle of my chest). Amy calls me a giant weenie, but I gotta say that tattoo hurt a lot more than I expected!
The hardest thing about yesterday was how long I had to wear the mask and dental piece for. My standard treatments will only have me in it for about 20 minutes. The first simulation had me in for about 45 minutes. Yesterday I had it in for about an hour and twenty minutes. Straight. No breaks. By the end, I was definitely feeling it.
Yesterday I also began all of the treatments that I am supposed to do to myself as well. I am supposed to stretch my jaw and neck frequently. Apparently one of the side effects if I fail to do this is that I wont be able to open my mouth much anymore unless undergoing another surgery. I also am having to apply gels and lotions to my neck, face and upper chest. They give me something called RadiaGel for now, and will be switching to another product once the pain and burn becomes pronounced. This, theoretically, helps lessen the effects of the burning. The last thing that I have to do is step it up a major amount on my dental work. Some of this is standard, I know, but my dental routine, now and forever, looks like this: Wake up, brush, mouthwash, floss, eat lunch, brush, eat dinner, and before bed do a half hour of floride treatment, brush and bed. I payed attention to how long I spent on my teeth yesterday, and quickly came to the realization that I spent just over an hour caring for them alone. On top of everything else I have to do for just general care of my body during this, no wonder they expect me to be just exhausted by the time I'm finished. Lucky for me, things like the floride treatment can happen while I am doing other things.
The other thing about yesterday that kind of caught me off guard was the lack of modesty that happens in the back end of the cancer ward of a hospital. I felt bad enough, as the mouthpiece that I have to wear makes me belch pretty good. I was embarrassed at first, as with that piece in, there is nothing that I can do to hide it. The doctors, I don't think, even noticed. I figure it must be kind of common. Then, walking into the joint sex locker room and seeing people wandering around nude, I realized that it just becomes a whole different mentality around there. There's nothing to hide, nothing to be embarrassed about- that we are all there for one thing, and that one thing, treatment and healing, becomes the only thing that matters.
Today was my first actual radiation session. I was a little more nervous than I thought I would be, but still not too bad. I decided yesterday not to take the anti-anxiety pills that they gave me to help with this. I'm honestly glad I didn't. There is just no reason for them.
As you can see by the picture, the machine is pretty big. That is the neutron radiation machine. The bed I am on moves, and the floor opens up, so they can actually move the part of the machine apparently 360 degrees to spin around me and give me radiation at the angles that I need it. In my particular case, I think they probably move it only about 160 degrees.
The radiation itself is painless (at least so far). My ears popped a few times- which was the most noticeable effect. Other than that, there were occasional times when I would lay and wonder "do I feel something? No, I'm making that up- wait, there was something... I think..."
Afterwords, I slapped the RadiaGel on myself, and Beth (my mother-in-law) had lunch. As I type this, which is about 2-3 hours after the radiation had ended, I can tell that something on that side of my face isn't quite the same. I can't even say it's bad yet, just different. maybe a bit warmer and something else, I just don't know what to call it. Irritated sounds too harsh, but for lack of a better term, that's what I must call it. It feels about the same as when you where a shirt with a collar that just won't sit right, and your neck keeps rubbing against it.
I'm glad day one is over though. I feel so much more prepared knowing exactly what to expect. I know the worse side effects are coming quickly, but I'm okay with that. At least for now.
Today was the second day I have been at the hospital this week.
Yesterday consisted of a dental checkup and an all clear to begin treatment, an appointment that consisted of another CAT scan (I believe this is number 5-6 already since the process began), and some remarking of my mask (they mark the mask to line up with laser guides that they use, it makes sure that I am properly aligned with the radiation machine), and a final appointment that consisted of somewhere around 15 x-rays, more remarking of the mask, and finally a tattoo (I'm so totally like a Harley Biker now, with that one spec in the middle of my chest). Amy calls me a giant weenie, but I gotta say that tattoo hurt a lot more than I expected!
The hardest thing about yesterday was how long I had to wear the mask and dental piece for. My standard treatments will only have me in it for about 20 minutes. The first simulation had me in for about 45 minutes. Yesterday I had it in for about an hour and twenty minutes. Straight. No breaks. By the end, I was definitely feeling it.
Yesterday I also began all of the treatments that I am supposed to do to myself as well. I am supposed to stretch my jaw and neck frequently. Apparently one of the side effects if I fail to do this is that I wont be able to open my mouth much anymore unless undergoing another surgery. I also am having to apply gels and lotions to my neck, face and upper chest. They give me something called RadiaGel for now, and will be switching to another product once the pain and burn becomes pronounced. This, theoretically, helps lessen the effects of the burning. The last thing that I have to do is step it up a major amount on my dental work. Some of this is standard, I know, but my dental routine, now and forever, looks like this: Wake up, brush, mouthwash, floss, eat lunch, brush, eat dinner, and before bed do a half hour of floride treatment, brush and bed. I payed attention to how long I spent on my teeth yesterday, and quickly came to the realization that I spent just over an hour caring for them alone. On top of everything else I have to do for just general care of my body during this, no wonder they expect me to be just exhausted by the time I'm finished. Lucky for me, things like the floride treatment can happen while I am doing other things.
The other thing about yesterday that kind of caught me off guard was the lack of modesty that happens in the back end of the cancer ward of a hospital. I felt bad enough, as the mouthpiece that I have to wear makes me belch pretty good. I was embarrassed at first, as with that piece in, there is nothing that I can do to hide it. The doctors, I don't think, even noticed. I figure it must be kind of common. Then, walking into the joint sex locker room and seeing people wandering around nude, I realized that it just becomes a whole different mentality around there. There's nothing to hide, nothing to be embarrassed about- that we are all there for one thing, and that one thing, treatment and healing, becomes the only thing that matters.
Today was my first actual radiation session. I was a little more nervous than I thought I would be, but still not too bad. I decided yesterday not to take the anti-anxiety pills that they gave me to help with this. I'm honestly glad I didn't. There is just no reason for them.
As you can see by the picture, the machine is pretty big. That is the neutron radiation machine. The bed I am on moves, and the floor opens up, so they can actually move the part of the machine apparently 360 degrees to spin around me and give me radiation at the angles that I need it. In my particular case, I think they probably move it only about 160 degrees.
The radiation itself is painless (at least so far). My ears popped a few times- which was the most noticeable effect. Other than that, there were occasional times when I would lay and wonder "do I feel something? No, I'm making that up- wait, there was something... I think..."
Afterwords, I slapped the RadiaGel on myself, and Beth (my mother-in-law) had lunch. As I type this, which is about 2-3 hours after the radiation had ended, I can tell that something on that side of my face isn't quite the same. I can't even say it's bad yet, just different. maybe a bit warmer and something else, I just don't know what to call it. Irritated sounds too harsh, but for lack of a better term, that's what I must call it. It feels about the same as when you where a shirt with a collar that just won't sit right, and your neck keeps rubbing against it.
I'm glad day one is over though. I feel so much more prepared knowing exactly what to expect. I know the worse side effects are coming quickly, but I'm okay with that. At least for now.
Saturday, February 4, 2012
Simulation
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| My 2012 Halloween costume. I'll add some flair along the way. |
For those I don't talk to on a super-regular basis, just so you know, I am playing catch up right now with the blog. Hopefully at one point I'll actually be current with this.
The next major step in my journey was my simulation. Besides the dental surgery (which actually happened the day after the simulation), this really was the worst day so far. The only reason the dental surgery was worse is because of the longer lasting effects it had. Heck, the surgery itself wasn't so bad, I was out cold the whole time.
The simulation though, was quite the interesting experience. The whole idea behind the simulation is to give you a ton of information, and run you through a CAT scan machine, get images of the areas they need to radiate, and get you prepped for said radiation.
The information was really quite interesting, but I'll get into that probably with the next blog post. This one, I'll just stick to what the simulation looks like.
So like I mentioned, a big majority of it is in a CAT scan machine. They have you put the stylish hospital gown on, inject you with a nuclear iodine (gives you a really metallic taste in your mouth, makes your whole body weirdly warm and heavy and really makes you feel like you wet yourself), and basically start scanning away.
It was interesting to watch the process though. I wasn't in the most comfortable of positions to be in- your head gets tilted back quite a bit, to really help expose your neck more. Your laying flat though, on the metal exam table, and they have a sheet under you. They would do a scan, come in, and move me according to what their scans showed. Now, it truly felt like they would move me an 8th of an inch to the left, rescan, then move me a 9th of an inch to the right, then a 7th inch to the left after another rescan, and so on. Then, after they were quite satisfied, they start marking spots all over your face with a marker, noting where the lasers are hitting exactly.
Once satisfied, they quickly tell you to close your eyes and take a deep breath. As soon as you do, they stretch a really warm material over your face as fast and as tight as they can. Once it's stretched, they really start pushing into all of the corners, folds, etc, until it is a good mold of your face. Once it's in place, they place cold washcloths on it to cool it down rapidly, making the mask harden. Once hardened, they tell you you can open your eyes, though the mask is so tight that it's nearly impossible to pry them open. They also mark the mask in the same spots that are marked on your skin, as well as marking where your eyes and mouth are. They take the mask off, cut eyes and a mouth hole, and the mask is good to go.
The last thing they did before the last and final set of scans is mark a spot on my chest where I will be getting a radiation tattoo. It's a small spot that will basically look like a freckle, that will help them to ensure that every time I am in radiation, I am in the exact same position as I was during the scan.
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| So this will basically be the exact position that I will be in for half an hour every day for four days a week for approximately 4 weeks. |
Then it was time for the final scan. This was what made the whole experience bad. It was time for the mouthpiece mentioned and with photos in the previous post, to go in. I got that in place, had them put the mask over me, and thought I was ready to go. If only it were that simple. They also clamp the mask to the table, immobilizing my head, they also push your shoulders down, so that your neck is stretched probably further than it really should go, then clamp your shoulders in place. They also stick something under your legs (which actually made it a bit more comfortable) , but it helps keep your legs locked in place as well. If this lasted for only a few minutes, it would have been great. Apparently, though, this was the most important set of scans. about 35-40 minutes after having my tongue suppressed and my mouth stuffed with some plastic piece, my head under a mask and strapped to a table, my shoulders pushed way down and clamped into place and my legs immobilized, I finally got the relief of returning from the 14th century torture device they call a CAT scan machine.
There are still a lot of little details that they are still working out, and I have a few random appointments here and there still, but they now take a while to do the calculations, but until then, I get to get some R&R at our beach house, with my amazing wife. It's some R&R I definitely feel like I've earned.
Wednesday, February 1, 2012
I HATE dental work
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| This is the top of the mouth guard- you can see a larger slit in the front opening of it, near my thumb. This is where my tongue is supposed to be placed during the actual burst of radiation. While the radiation appointments are about half an hour, the radiation burst is only about 15 seconds, which is good, because the longer my tongue is there, the more I start to gag. |
 |
| This is the top of it- kinda gives you an idea of how long it is. It really is a good few inches, and unfortunately, I have it in for about 20-30 minutes (basically the whole time) for my appointments. You really do gag pretty bad on it at first, but with some getting used to, it gets to a point of tolerable. They say by the end of this, this little thing will be like a friend to me. I don't care if it's plastic or not, I think by the end of this, I'll be ready to throw it in the fire. |
After starting appointments a week late because of weather, I finally got into the UW cancer department, and am underway with treatment. It's an amazingly large process, and even just figuring out logistics is a bit of a nightmare.
My first real appointment was Monday and basically included a consultation with the doctor that I will be seeing. He described my treatment options, gave me as much information as he could and sent me on my way. I then had a dental appointment- something that I have been required to do due to the side effects of radiation in the area that I will be treated in.
The concern is that once I start radiation treatment, the bone along my jaw basically dies off. If I have any type of dental issues that would require a tooth extraction, or if the bone gets exposed in any way, I won't heal like I should. The dentists explained to me that just a simple removal of a tooth would include me spending half an hour a day for 50 days in a hyperbarric chamber.
Because of this, I was facing some pretty heavy duty dental work. Not only did they create a dental guard that sits in my mouth for 20-30 minutes every time I receive radiation (it's terrible- 4 to 4.5 inches long, pushes my tongue into an awkward position and really triggers a fantastic gag reflex), they decided they needed to address 8 different dental issues in my mouth, including replacing a few old fillings, putting a couple more in, performing a root canal and removing my last wisdom tooth.
Apparently these decisions did not come lightly- I was told that a team of 8 dentists met for about an hour and a half just discussing what to do with me. I was told that in most people, much of this would never have been any issue, including the wisdom tooth, but with me, well, it was a different story.
At least all of the dental work is done. It honestly is what I was looking forward to the least. I was under general anesthesia for the work, which was fantastic, remember none of it, was given some good painkillers, and even got a strawberry milkshake on the ride home.
Saturday, January 28, 2012
The diagnosis
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| The incision, and drainage tube, 3 or 4 days after the surgery. |
A history- in November of 2011, I noticed a large lump in the back of my throat. The doctors thought it was a peri-tonsular abscess. I was placed on antibiotics for a month before going back into the doctor for having a hard time swallowing. After a cat scan, it was discovered that I had a tumor approximately the size of a tennis ball in the back of my throat. Since then, the world has turned itself upside down, and I've been fighting to get it back right side up.
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