Meerkat
10-24-2005, 03:16 AM
I'm going to try to post something like this once a week. I hope y'all will find it interesting and will contribute in whatever ways you wish to.
It's been a fairly decent week. My orbit tumor seems to continue to be shrinking well and my eyes are actually working together better - I was unable to "fuse" the two for awhile, but now that's much easier. It's only an impression, but I think my eye has started moving back into it's socket. It was (est) 8mm forward of the other and it still seem lower in the socket than I recall (not that I've ever had good symetery due to strabismus).
With respect to the neck/media steinum (sp?) tumor, there is evidence that it's responding too. I've had flutters (feels like burps in my neck) and all of a sudden, I'm breathing through a pipe and not a straw. FEELS GREAT to be able to take a full breath of air with little or no strain. I'm still coughing up gobs of stuff, but the docs suggest that maybe it's my lungs finally being able to bail themselves out after months of constriction! At least the interval, volume and stress (of coughing) are continuing to reduce. I've also not coughed up blook all this week, except for one small spot of old blood today. Nothing compared to the crimson tide (relatively speaking) from before the treatment started.
I'm becoming innured to laying pinned to the table under my mask while a 55-gallon sized linear accellerator head swings about over me, pointing first this way and then that. 3 angles and 2 shots (beams) per angle and then another 3 for the other site. Start to finish, it's about 15 minutes, but it blows 2+ hours every day with transportation and waiting if/when they run behind. Weekly I have blood work to ensure I don't end up with leukemia or something and also they took a diagnostic x-ray of the neck on Friday. Looking forward to seeing what, if any, changes are visible on the weekly "doctor day" when I see the doc. This coming week, I'll also have a CT scan of both areas and that will tell us some more. Hoping for better news than even I've had so far, based on relief of symptoms. Nobody has said a word about future outlook improvemnt and I try not to hope, but things seem a bit brighter.
My eye seems to be holding up. The beam has to come so close to it that I have to look hard right during those treatments to minimize exposure and they are also using a radiation level that is somewhat below the damage threshold (40 "Gray" vs. a danger threshold of 50 "Gray") (NB: A "Gray" is 1/100 of a RAD: a RAD is 100 centigray - you now know what I know.) I'm havnig an opthomalic exam tomorrow to check the eye just in case.
Physiologically, I'm fatigued, but it's not deep yet. They say it will increase over the term of the treatment, so I'm still doing as much as I can as fast as I can to get the place ship-shape for when it's all I can do to get up and down etc. My body knows it's beeing assulted, but there's nothing specific per se. An undercurrent of not quite nausea at times and the odd bit of neuralgia at times, but nothing acute. In any case, the docs have been unstinting in making pain meds available as needed. I have them and don't avoid them when necessary (just call me wusscat when it comes to real pain), but I'm not hiding behind them nor feel and compulsion (addiction) to take them when not needed. (Not talking anything major here really: some codeine for cough suppression and mild pain releif and some vikodin for anything worse - not into the really heavy duty stuff, at least not yet. I have noticed that if I'm in mild discomfort/pain, as I am right now, that, even though it seems like overkill, a vikodin can help and make this feeling not come back for several days, so I'll probably take one tonight.)
The 900# gorilla is still the steroid, but I'm learning to deal with it. As a glucocortizoid (sp?), it plays merry hobb with my diabetes, but increased doses of insulin and making sure I eat are helping a lot in that regard. It still leaves me with altered taste and very dizzy and disoriented at times, but it passes after an hour or two. I think much of my physical feelings stem from it more than from the radiation, but who knows. There are times when I'm sharp as a tack and other times when I'm not sure what a tack is... ;) Overall though, I'm still me, albeit a changing me. One of the big problems with the steroid is that it really messes with sleep. Have to push myself to sleep and even then, 3-5 hours and I'm up again. Did manage 7 hours last night with help from a sleep aid though. Working on it! smile.gif
I'm slowly getting comfortable in my new digs and being able to pick up a few old routines like sharing with you all on the forum are a great comfort. I'm also opening up. Made a couple of new friends here at the boarding house and I'm getting a bit more exercise. The food's not great, but the room is comfortable and the weekly housekeeping service is quite welcome. I have my own bed and other furniture (thanks to the blessed folks of the "Seattle Crew" from the forum who did heroic work to help me move) and it's nice to have that familiarity. As I settle into my new reality, I'm sure things will get even better.
So much more to say, but I'll save it for next week. I love you all and hope you'll keep in contact with me.
Humbly,
Meerkat
It's been a fairly decent week. My orbit tumor seems to continue to be shrinking well and my eyes are actually working together better - I was unable to "fuse" the two for awhile, but now that's much easier. It's only an impression, but I think my eye has started moving back into it's socket. It was (est) 8mm forward of the other and it still seem lower in the socket than I recall (not that I've ever had good symetery due to strabismus).
With respect to the neck/media steinum (sp?) tumor, there is evidence that it's responding too. I've had flutters (feels like burps in my neck) and all of a sudden, I'm breathing through a pipe and not a straw. FEELS GREAT to be able to take a full breath of air with little or no strain. I'm still coughing up gobs of stuff, but the docs suggest that maybe it's my lungs finally being able to bail themselves out after months of constriction! At least the interval, volume and stress (of coughing) are continuing to reduce. I've also not coughed up blook all this week, except for one small spot of old blood today. Nothing compared to the crimson tide (relatively speaking) from before the treatment started.
I'm becoming innured to laying pinned to the table under my mask while a 55-gallon sized linear accellerator head swings about over me, pointing first this way and then that. 3 angles and 2 shots (beams) per angle and then another 3 for the other site. Start to finish, it's about 15 minutes, but it blows 2+ hours every day with transportation and waiting if/when they run behind. Weekly I have blood work to ensure I don't end up with leukemia or something and also they took a diagnostic x-ray of the neck on Friday. Looking forward to seeing what, if any, changes are visible on the weekly "doctor day" when I see the doc. This coming week, I'll also have a CT scan of both areas and that will tell us some more. Hoping for better news than even I've had so far, based on relief of symptoms. Nobody has said a word about future outlook improvemnt and I try not to hope, but things seem a bit brighter.
My eye seems to be holding up. The beam has to come so close to it that I have to look hard right during those treatments to minimize exposure and they are also using a radiation level that is somewhat below the damage threshold (40 "Gray" vs. a danger threshold of 50 "Gray") (NB: A "Gray" is 1/100 of a RAD: a RAD is 100 centigray - you now know what I know.) I'm havnig an opthomalic exam tomorrow to check the eye just in case.
Physiologically, I'm fatigued, but it's not deep yet. They say it will increase over the term of the treatment, so I'm still doing as much as I can as fast as I can to get the place ship-shape for when it's all I can do to get up and down etc. My body knows it's beeing assulted, but there's nothing specific per se. An undercurrent of not quite nausea at times and the odd bit of neuralgia at times, but nothing acute. In any case, the docs have been unstinting in making pain meds available as needed. I have them and don't avoid them when necessary (just call me wusscat when it comes to real pain), but I'm not hiding behind them nor feel and compulsion (addiction) to take them when not needed. (Not talking anything major here really: some codeine for cough suppression and mild pain releif and some vikodin for anything worse - not into the really heavy duty stuff, at least not yet. I have noticed that if I'm in mild discomfort/pain, as I am right now, that, even though it seems like overkill, a vikodin can help and make this feeling not come back for several days, so I'll probably take one tonight.)
The 900# gorilla is still the steroid, but I'm learning to deal with it. As a glucocortizoid (sp?), it plays merry hobb with my diabetes, but increased doses of insulin and making sure I eat are helping a lot in that regard. It still leaves me with altered taste and very dizzy and disoriented at times, but it passes after an hour or two. I think much of my physical feelings stem from it more than from the radiation, but who knows. There are times when I'm sharp as a tack and other times when I'm not sure what a tack is... ;) Overall though, I'm still me, albeit a changing me. One of the big problems with the steroid is that it really messes with sleep. Have to push myself to sleep and even then, 3-5 hours and I'm up again. Did manage 7 hours last night with help from a sleep aid though. Working on it! smile.gif
I'm slowly getting comfortable in my new digs and being able to pick up a few old routines like sharing with you all on the forum are a great comfort. I'm also opening up. Made a couple of new friends here at the boarding house and I'm getting a bit more exercise. The food's not great, but the room is comfortable and the weekly housekeeping service is quite welcome. I have my own bed and other furniture (thanks to the blessed folks of the "Seattle Crew" from the forum who did heroic work to help me move) and it's nice to have that familiarity. As I settle into my new reality, I'm sure things will get even better.
So much more to say, but I'll save it for next week. I love you all and hope you'll keep in contact with me.
Humbly,
Meerkat