I am Linda and I am the only daughter (only child for that matter with no extended family to turn to for support) of my 74 yr. old mom who was just diagnosed with stage 3B non-small cell (squamous) lung cancer (I am not used to the lingo yet) -- it was a bit scary as she didn't know or acknowledge that she was having any symptoms: she was just getting weaker, quit driving, and complained of back pain; she was coughing alot but said it was just sinus stuff -- and she is trained as an RN!; her reasoning skills went really bad on me and I had to call 911 to have her hospitalized over Christmas (she doesn't remember much of it). Anyway, she is now on 5 litres of continuous oxygen and has a collapsed portion of her right lung from the size of a tumour which blocks a major passage to the lower portion of that lung. The oxygen maintains an oxygen saturation of 94-96 at rest. During active therapy her sats go into the mid 80's: we are hopeful that that will change with tumour shrinkage.
I am not sure if she is out of her pneumonia yet (she still gets breathing treatments for that). She's currently out of the hospital and in a skilled nursing facility for observation -- she just started chemo on Monday (taxol). During that session, her lips turned blue and her oxygen sats went into the 60's with a heart rate that ranged from 25-170+ bpm (she did that in the hospital once too and had to be moved to the cardiac floor for a day or so). She is scheduled for six chemo sessions (once per week) and then 6-8 weeks of radiation treatment so far.
Anyway, we have been told nothing yet of what to expect from all of this (not even expected side effects!). Her hospital pulmonologist told me that she probably wouldn't survive chemo/radiation and that she would be lucky to live a month; her chemo and radiation onocologists aren't saying much at all, but seem much more positive than that. In fact, they wonder why she isn't home and that really frightens me for alot of reasons.....mom isn't totally mentally "right", though it isn't all that noticeable to those who don't know her (it's got to be part of the disease process for her, because she was just fine until December -- her bloodwork got all messed up but even with that fixed, she still isn't totally recovered).
I just lost my dad to aggressive brain cancer in Apr 2005. That one was an onset with no warning and was 8 weeks from diagnosis to his passing -- the doctors said the same sort of things at the time: well, 3 hospitalizations during that time....him coming home the first time with a cane and quickly becoming bedridden before my eyes and requiring my 24 hour care and lots of phone calls to unresponsive doctors....nope....not doing that one again! That was so intense for me and if it hadn't been for me, he wouldn't have had the right med combinations or anyone's attention near soon enough -- long story.
Anyway, I had to quit my job and I am now running his estate and a 20 acre farm with 2 sick horses (they also require intensive daily care and they are my mom's passion)...let's just say my plate is so beyond full that I am now on blood pressure medicine due to overwhelming stress load. I am taking a stand and not rushing anything until I know what I am dealing with -- is really important to me that mom get the best care she can. Mom won't advocate for herself, but I hope to know what to do for her before she runs into more troubles with unexpected side effects or complications. I intend to bring her home when I know I have the right resources in place to meet her needs -- we are alone and in the country and have no clue what home care to have available -- I can't sit by her 24/7 with everything that's going on.
This is long, but anyway, I am researching like mad this weekend to find out what questions to ask her chemo onocologist on Monday -- I'd like to know, in addition to the standard questions, what questions everyone wishes they had asked in the beginning that would have helped make their journey easier (if there is such a thing).
Thanks for this site -- I found it via the bulletin boards at the American Cancer Society....someone mentioned it there and, well, here I am! I'll have to learn how to do the profile thing soon too....just give me some time on that: things are rather harrowing for me on a daily basis and it takes me a bit to finish my follow-through on items ('cause there's so many of them for me).
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I am Linda and I am the only daughter (only child for that matter with no extended family to turn to for support) of my 74 yr. old mom who was just diagnosed with stage 3B non-small cell (squamous) lung cancer (I am not used to the lingo yet) -- it was a bit scary as she didn't know or acknowledge that she was having any symptoms: she was just getting weaker, quit driving, and complained of back pain; she was coughing alot but said it was just sinus stuff -- and she is trained as an RN!; her reasoning skills went really bad on me and I had to call 911 to have her hospitalized over Christmas (she doesn't remember much of it). Anyway, she is now on 5 litres of continuous oxygen and has a collapsed portion of her right lung from the size of a tumour which blocks a major passage to the lower portion of that lung. The oxygen maintains an oxygen saturation of 94-96 at rest. During active therapy her sats go into the mid 80's: we are hopeful that that will change with tumour shrinkage.
I am not sure if she is out of her pneumonia yet (she still gets breathing treatments for that). She's currently out of the hospital and in a skilled nursing facility for observation -- she just started chemo on Monday (taxol). During that session, her lips turned blue and her oxygen sats went into the 60's with a heart rate that ranged from 25-170+ bpm (she did that in the hospital once too and had to be moved to the cardiac floor for a day or so). She is scheduled for six chemo sessions (once per week) and then 6-8 weeks of radiation treatment so far.
Anyway, we have been told nothing yet of what to expect from all of this (not even expected side effects!). Her hospital pulmonologist told me that she probably wouldn't survive chemo/radiation and that she would be lucky to live a month; her chemo and radiation onocologists aren't saying much at all, but seem much more positive than that. In fact, they wonder why she isn't home and that really frightens me for alot of reasons.....mom isn't totally mentally "right", though it isn't all that noticeable to those who don't know her (it's got to be part of the disease process for her, because she was just fine until December -- her bloodwork got all messed up but even with that fixed, she still isn't totally recovered).
I just lost my dad to aggressive brain cancer in Apr 2005. That one was an onset with no warning and was 8 weeks from diagnosis to his passing -- the doctors said the same sort of things at the time: well, 3 hospitalizations during that time....him coming home the first time with a cane and quickly becoming bedridden before my eyes and requiring my 24 hour care and lots of phone calls to unresponsive doctors....nope....not doing that one again! That was so intense for me and if it hadn't been for me, he wouldn't have had the right med combinations or anyone's attention near soon enough -- long story.
Anyway, I had to quit my job and I am now running his estate and a 20 acre farm with 2 sick horses (they also require intensive daily care and they are my mom's passion)...let's just say my plate is so beyond full that I am now on blood pressure medicine due to overwhelming stress load. I am taking a stand and not rushing anything until I know what I am dealing with -- is really important to me that mom get the best care she can. Mom won't advocate for herself, but I hope to know what to do for her before she runs into more troubles with unexpected side effects or complications. I intend to bring her home when I know I have the right resources in place to meet her needs -- we are alone and in the country and have no clue what home care to have available -- I can't sit by her 24/7 with everything that's going on.
This is long, but anyway, I am researching like mad this weekend to find out what questions to ask her chemo onocologist on Monday -- I'd like to know, in addition to the standard questions, what questions everyone wishes they had asked in the beginning that would have helped make their journey easier (if there is such a thing).
Thanks for this site -- I found it via the bulletin boards at the American Cancer Society....someone mentioned it there and, well, here I am! I'll have to learn how to do the profile thing soon too....just give me some time on that: things are rather harrowing for me on a daily basis and it takes me a bit to finish my follow-through on items ('cause there's so many of them for me).
Linda