Friday, January 28, 2011
Walk through the Garden of 1000 Buddhas
A question from a friend on Facebook
Hopefully I didn't butcher this question to badly!
Friend's message-
What??? I know this is going to sound stupid... But what exactly does stage 4 mean????? It doesn't sound good. I know I should educate myself on these things. I feel like a dumbass for asking.
Charmine McKinley January 28 at 1:00pm
LOL, don't look it up if you aren't good with that kind of stuff! I finally had to look, but I have enough sense to know that I am probably not the typical statistic. I am way young, and in very good health besides this issue. I don't know if I can explain it any better, without my doc telling me I'm understanding it. This is how I interpret it. There is no St 5 first off. People speak of end stage, and that is still stage 4 anyway you look at it. Stage 4 means a couple of different things, depending on the situation.
1- it means it is big, bad, and far advanced...and it will probably kill you if something else doesn't get you first. Not positive, but I think some cancers are automatically stage 4. There is no cure by this point, and the focus is keeping you alive and comfortable/healthy.
2-Stage 4 in my case means this. I was originally stage 2b-3. This was based on the size of the original tumor, and the fact that 2 of my breast lymph nodes were positive. Not considered far advanced, but it was big and appeared to be fairly aggressive in it's growth. Still standard breast cancer as far as doc could tell, so we did standard treatment. We don't believe that the chemo and radiation got rid of it all. This doesn't appear to be the case of it came back, just never gone. Even though we did surgery, cells can get left behind in the process, hence the chemo and radiation. The cancer has spread outside of my breast and breast lymph nodes. This is what has given mine the stage 4 name. Because it has spread (or metastasized) beyond the original cancer site.
Not sure, but I think the idea is if spread to other type lymph nodes, brain, blood, bone or organs- there is no cure so it gets the automatic stage 4 rating. I am good, because yes it has spread- but not into any of those 3 places. I am participating in a study, so I get all kinds of extra scans to check the cancer status that I would not normally get. So this is a good thing, the closer I am monitored.
Don't feel like a dumbass. I didn't understand any of this a year and a half ago. You would think I would be a bit more knowledgeable, as my stepmom had breast cancer a few years back. Nope, I was oblivious, and wrapped up in my own stuff, that I just didn't catch much at all. This is my hidden blessing, is the eye opening and new understanding that this has given me.
If you look up Stage 4 recurrent breast cancer, it will tell you the survival rate is somewhere between 16% and 20% for 5 years. Doc's best guess a month ago was between 2 and 10. My age seems to be the mystery factor. I think my age attributes to my health, so I should theoretically be able to fight it longer, and a better chance of remission? What I just read on the net kind of leads me to believe that cancer in younger women has the tendency to be more aggressive, so maybe I should be a bit more concerned then maybe I am.
Hope this answers your question, and thanks for another blog posting for my blog! Hope your day is as beautiful as ours is here!
Friend's message-
What??? I know this is going to sound stupid... But what exactly does stage 4 mean????? It doesn't sound good. I know I should educate myself on these things. I feel like a dumbass for asking.
Charmine McKinley January 28 at 1:00pm
LOL, don't look it up if you aren't good with that kind of stuff! I finally had to look, but I have enough sense to know that I am probably not the typical statistic. I am way young, and in very good health besides this issue. I don't know if I can explain it any better, without my doc telling me I'm understanding it. This is how I interpret it. There is no St 5 first off. People speak of end stage, and that is still stage 4 anyway you look at it. Stage 4 means a couple of different things, depending on the situation.
1- it means it is big, bad, and far advanced...and it will probably kill you if something else doesn't get you first. Not positive, but I think some cancers are automatically stage 4. There is no cure by this point, and the focus is keeping you alive and comfortable/healthy.
2-Stage 4 in my case means this. I was originally stage 2b-3. This was based on the size of the original tumor, and the fact that 2 of my breast lymph nodes were positive. Not considered far advanced, but it was big and appeared to be fairly aggressive in it's growth. Still standard breast cancer as far as doc could tell, so we did standard treatment. We don't believe that the chemo and radiation got rid of it all. This doesn't appear to be the case of it came back, just never gone. Even though we did surgery, cells can get left behind in the process, hence the chemo and radiation. The cancer has spread outside of my breast and breast lymph nodes. This is what has given mine the stage 4 name. Because it has spread (or metastasized) beyond the original cancer site.
Not sure, but I think the idea is if spread to other type lymph nodes, brain, blood, bone or organs- there is no cure so it gets the automatic stage 4 rating. I am good, because yes it has spread- but not into any of those 3 places. I am participating in a study, so I get all kinds of extra scans to check the cancer status that I would not normally get. So this is a good thing, the closer I am monitored.
Don't feel like a dumbass. I didn't understand any of this a year and a half ago. You would think I would be a bit more knowledgeable, as my stepmom had breast cancer a few years back. Nope, I was oblivious, and wrapped up in my own stuff, that I just didn't catch much at all. This is my hidden blessing, is the eye opening and new understanding that this has given me.
If you look up Stage 4 recurrent breast cancer, it will tell you the survival rate is somewhere between 16% and 20% for 5 years. Doc's best guess a month ago was between 2 and 10. My age seems to be the mystery factor. I think my age attributes to my health, so I should theoretically be able to fight it longer, and a better chance of remission? What I just read on the net kind of leads me to believe that cancer in younger women has the tendency to be more aggressive, so maybe I should be a bit more concerned then maybe I am.
Hope this answers your question, and thanks for another blog posting for my blog! Hope your day is as beautiful as ours is here!
Feeling full of P&V!
Ok that was yesterday and the day before. I still feel great, just have calmed down a notch is all. Which is good...maybe the roller coaster will mellow out until we start again next week. I remember Mondays on day 8 from my original treatment, I was always full of P&V, as I like to call it. I don't recall if I blogged about my spring ride last April, on one of those Mondays. I can still remember how good me and my ride felt that day!
Yeppers, feeling good! Only still in bed so I can blog without distractions. I rocked yesterday. Pretty sad that I didn't really do that much, but it felt huge to me. Rinsed all the mud off the truck, washed all the inside windows in the truck, out in the shop for a few, out looking at critter stuff in the orchard, worked with Hope in the yard for a few, scrubbed out some sinks and toilets good, made Chicken Parmesan AND visited with friends for a couple hours while cooking. Yikes, that really isn't very much at all for me. Sure seemed like a lot at the time, and I was ready for bed when it was time. If I don't decide to go into Missoula today, I need to get out with Hope some more. Maybe we'll go walk the Buddha garden today, or down to my gf's house. Not terribly far, but enough to feel like Hope and I got some sunshine and exercise.
So I copied Daria, and made myself a spreadsheet to for my side effects. I have put a lot of thought into what Daria said in her blogs. This really is so different feeling then the first time around. Before, we geared every thought to standard bc treatment, and this will get rid of it. Well it didn't, so I guess all thoughts of "standard" treatment go out the window. Yes, I know the routine and the basics of how it works, and what to expect....the basics. This time we don't know how many treatments we will do of the Docetaxol. I would probably have blown off tracking side effects again. Given what Daria wrote in her blog, I'm not so sure that is a good idea. I don't think my oncologist will keep me on Docetaxol as long as Daria's did. The one thing I have learned though, is I don't care how "not new" at this I am now, I still don't know the answers. Every time I guess something and think I have it figured out, doc tells me a different treatment so.....we shall see what really happens! So, since I really don't know how Docetaxol will turn out, maybe I better track it. Especially in case it is longer then I think. I already suspect it will be harder then I think. What Daria wrote about quality of life when doc wanted to lower her dose, made a lot of sense. The spreadsheet will help make those decisions a lot clearer, I'm thinking.
I don't think I really was completely honest about how I felt last week. I think I spent 4 days in bed, Fri. through Monday. Monday was more lazy then feeling bad I think. I didn't feel like I was dying by any means, just not great. Just minor flu like symptoms. More irritating then anything, because it doesn't go away. I have an Oxycodone 5mg script, that was for after surgery for my port. I have discovered that that helps with the flu symptoms. I don't really like that idea, as that is not what they were prescribed for. I don't want to get dependent on pills. Bed is great because it is quiet. I get chills very easily when it is like this. Propped up in bed on a heating pad, with a cup of tea and my medicinal herb is the best place to be. So far I don't ache bad, so I don't need my maryjane for pain. It does help stimulate my appetite, it does help me sleep, but most importantly it helps me relax. It truly takes the edge off the whole situation, and that is what works for me.
I really was surprised that it hit me as hard as it did for the first treatment. I really wasn't expecting to spend 4 days in bed right off the bat. This is the part that is concerning me, really concerning me. I am a little scared that this will be much harder then I am expecting, given the reaction to the first round. My clinical research lady, H. says that Docetaxol is a bit stronger then Taxol. She says they prefer to try Taxol first, as the side effects aren't as harsh. Great, but that's OK...I can do it.
I can do anything I want, just take away the worry please! I am a worry wart anyways. Don't know if I was born that way, or if my life made me that way. All I know is I have been a worrier since very young. I would love to spend the rest of my life not worrying. I know that is a lot to ask for, but I don't think it is too much. I prefer not to use the word deserve, to me that sounds like I am better then someone else. I also don't believe I am ever destined for a "normal" life, but as close as possible would sure be nice! I just want to retain some sense of normalcy, and not feel so frustrated, and to not worry. The only way I know how to do that, is to do it all by myself. That way I don't have to worry about depending on somebody else and getting frustrated because somebody else isn't following through with what I need. Plus, there would be nobody else in my ear telling me all I worry about is myself too! I am not wrong for worrying about myself right now.
OK, I'm feeling a bit of chemo brain. It started popping back up immediately back up immediately this time it would seem. I wanted to blog my day so bad yesterday, so I wouldn't forget. I was just too tired so I refrained from it. Now I'm kicking my butt, because I'm sure I forgot half of what I wanted to write, and rambled on somewhere else. I do have 1 parting thought though. H and doc say side effects are cumulitive, which I do believe. So we had a 3 week break between the pill and the injection start date. I still say I am surprised at how hard this hit me. What does this tell me? This makes me think 2 things. 1- that I am not as healthy as when we first started this in 8/09 with my original diagnosis, so maybe my body is not tolerating my chemo quite as well. 2- is this. I used to do a lot of meth in my 20's. I remember quitting for a couple of years, then starting again. I realised within a couple of months that I needed to stop. It took me years to build up what I call meth ticks. (Weird little habits that one consciously or unconsciously does when on drugs) When I went back to it, all those ticks came right back, like they'd never even been gone. So, I'm wondering if it is possible that side effects can come back that much faster, because your body is already aware of these side effects. Can anybody else out there vouch for this thought?
OK, Happy Friday all! I am off, or I will not get that Vitamin D I need!
Yeppers, feeling good! Only still in bed so I can blog without distractions. I rocked yesterday. Pretty sad that I didn't really do that much, but it felt huge to me. Rinsed all the mud off the truck, washed all the inside windows in the truck, out in the shop for a few, out looking at critter stuff in the orchard, worked with Hope in the yard for a few, scrubbed out some sinks and toilets good, made Chicken Parmesan AND visited with friends for a couple hours while cooking. Yikes, that really isn't very much at all for me. Sure seemed like a lot at the time, and I was ready for bed when it was time. If I don't decide to go into Missoula today, I need to get out with Hope some more. Maybe we'll go walk the Buddha garden today, or down to my gf's house. Not terribly far, but enough to feel like Hope and I got some sunshine and exercise.
So I copied Daria, and made myself a spreadsheet to for my side effects. I have put a lot of thought into what Daria said in her blogs. This really is so different feeling then the first time around. Before, we geared every thought to standard bc treatment, and this will get rid of it. Well it didn't, so I guess all thoughts of "standard" treatment go out the window. Yes, I know the routine and the basics of how it works, and what to expect....the basics. This time we don't know how many treatments we will do of the Docetaxol. I would probably have blown off tracking side effects again. Given what Daria wrote in her blog, I'm not so sure that is a good idea. I don't think my oncologist will keep me on Docetaxol as long as Daria's did. The one thing I have learned though, is I don't care how "not new" at this I am now, I still don't know the answers. Every time I guess something and think I have it figured out, doc tells me a different treatment so.....we shall see what really happens! So, since I really don't know how Docetaxol will turn out, maybe I better track it. Especially in case it is longer then I think. I already suspect it will be harder then I think. What Daria wrote about quality of life when doc wanted to lower her dose, made a lot of sense. The spreadsheet will help make those decisions a lot clearer, I'm thinking.
I don't think I really was completely honest about how I felt last week. I think I spent 4 days in bed, Fri. through Monday. Monday was more lazy then feeling bad I think. I didn't feel like I was dying by any means, just not great. Just minor flu like symptoms. More irritating then anything, because it doesn't go away. I have an Oxycodone 5mg script, that was for after surgery for my port. I have discovered that that helps with the flu symptoms. I don't really like that idea, as that is not what they were prescribed for. I don't want to get dependent on pills. Bed is great because it is quiet. I get chills very easily when it is like this. Propped up in bed on a heating pad, with a cup of tea and my medicinal herb is the best place to be. So far I don't ache bad, so I don't need my maryjane for pain. It does help stimulate my appetite, it does help me sleep, but most importantly it helps me relax. It truly takes the edge off the whole situation, and that is what works for me.
I really was surprised that it hit me as hard as it did for the first treatment. I really wasn't expecting to spend 4 days in bed right off the bat. This is the part that is concerning me, really concerning me. I am a little scared that this will be much harder then I am expecting, given the reaction to the first round. My clinical research lady, H. says that Docetaxol is a bit stronger then Taxol. She says they prefer to try Taxol first, as the side effects aren't as harsh. Great, but that's OK...I can do it.
I can do anything I want, just take away the worry please! I am a worry wart anyways. Don't know if I was born that way, or if my life made me that way. All I know is I have been a worrier since very young. I would love to spend the rest of my life not worrying. I know that is a lot to ask for, but I don't think it is too much. I prefer not to use the word deserve, to me that sounds like I am better then someone else. I also don't believe I am ever destined for a "normal" life, but as close as possible would sure be nice! I just want to retain some sense of normalcy, and not feel so frustrated, and to not worry. The only way I know how to do that, is to do it all by myself. That way I don't have to worry about depending on somebody else and getting frustrated because somebody else isn't following through with what I need. Plus, there would be nobody else in my ear telling me all I worry about is myself too! I am not wrong for worrying about myself right now.
OK, I'm feeling a bit of chemo brain. It started popping back up immediately back up immediately this time it would seem. I wanted to blog my day so bad yesterday, so I wouldn't forget. I was just too tired so I refrained from it. Now I'm kicking my butt, because I'm sure I forgot half of what I wanted to write, and rambled on somewhere else. I do have 1 parting thought though. H and doc say side effects are cumulitive, which I do believe. So we had a 3 week break between the pill and the injection start date. I still say I am surprised at how hard this hit me. What does this tell me? This makes me think 2 things. 1- that I am not as healthy as when we first started this in 8/09 with my original diagnosis, so maybe my body is not tolerating my chemo quite as well. 2- is this. I used to do a lot of meth in my 20's. I remember quitting for a couple of years, then starting again. I realised within a couple of months that I needed to stop. It took me years to build up what I call meth ticks. (Weird little habits that one consciously or unconsciously does when on drugs) When I went back to it, all those ticks came right back, like they'd never even been gone. So, I'm wondering if it is possible that side effects can come back that much faster, because your body is already aware of these side effects. Can anybody else out there vouch for this thought?
OK, Happy Friday all! I am off, or I will not get that Vitamin D I need!
Monday, January 24, 2011
New (old, reworked) detection technology
Hi all! This 20 minute video was great. It explained a lot of questions, and gave hope for future detections in much younger women. Until a cure is found, early detection is our best hope for survival in my opinion. Enjoy!
Monday, January 17, 2011
Sometimes it's just nice to be a vegetable!
Hi folks, here I am...alive and well. I have spent all of Sat and Sun curled up with my pit bull in bed. Mostly out of desire, but now of course I can't tell if my back hurts from chemo, or too much bed. Sometimes bed is just a nice place. I can't see the mound of papers I need to tackle, the floor that needs to be vacuumed or whatever else unfinished project I have lying around. Bed is just really the only place I know to get peace and quiet when it is dreary out. I tried to explain this to hubby, but he just looked at me with his usual look like he thinks I will now spend the rest of my life in bed. Never really dawns on him that dealing with him is part of the lack of peace!
So let's see, side affects? A couple of days of heart burn- Zantac 75 clears that up. Some diarrhea, but not enough to take a pill yet. Feeling a bit tired and just not up to par. My back has been bothering me, but I always have a hard time telling if it is due to the bed, versus chemo. I'm thinking it is a little bit of bed too, as it seems like I could feel the bad curve this morning. Haven't felt puky until the cat just puked up her cat food on the snake's hydrometer! Not nausea, but it doesn't take much for me to get queasy.
So it is now Monday, and I am not in bed. I have a quiet house for the moment. I've walked the dog, and vacuumed. I don't feel too shabby. I'll finish eating this cereal, and get my crud together. Off to Missoula to get more labs drawn. Then again on Wed. and I should be done getting poked for the week. I'm not moving very fast, but I know the longer I wait, the slower I will be moving later!
So let's see, side affects? A couple of days of heart burn- Zantac 75 clears that up. Some diarrhea, but not enough to take a pill yet. Feeling a bit tired and just not up to par. My back has been bothering me, but I always have a hard time telling if it is due to the bed, versus chemo. I'm thinking it is a little bit of bed too, as it seems like I could feel the bad curve this morning. Haven't felt puky until the cat just puked up her cat food on the snake's hydrometer! Not nausea, but it doesn't take much for me to get queasy.
So it is now Monday, and I am not in bed. I have a quiet house for the moment. I've walked the dog, and vacuumed. I don't feel too shabby. I'll finish eating this cereal, and get my crud together. Off to Missoula to get more labs drawn. Then again on Wed. and I should be done getting poked for the week. I'm not moving very fast, but I know the longer I wait, the slower I will be moving later!
Tuesday, January 11, 2011
Last day of freedom for awhile
OK, so here I am attempting to do into a huge pile of social security papers. Not getting very far either. I need to because I am going to feel less and less like it as chemo goes on. Good news is, I am not waiting for the phone to ring anymore. I finally called clinical research lady yesterday, as I had been waiting for a phone call since Friday. She said all tests came back good, so my body qualifies. She said she didn't see anything new that we weren't aware of already, as far as cancer growth. Yay, still no spots in my bone. H said she called they study drug company to find out which arm of the study we got, and they would not tell her. So all will be revealed tomorrow morning. I am OK with this...at least I know I am not waiting for the phone to ring. I am not looking forward to the pump, but of course I hope I get it all. Let's kick this bucker's ass once and for all! I have a highly toxic body, (full of good energy and positive juju)- this is known to exterminate cancer cells!
Team Up Montana 2010, Grizz game
Thank you MB for passing this on! This truly was an honor to participate in the human pink ribbon, and especially to do it next to my Mom! It was a very good day! Enjoy!
Tuesday, January 4, 2011
Port back in
OK, so my port is back in, so I can just get past THAT disappointment now. I went ahead and let my hubby take me in to the appointment. It is so much easier to just let him take care of me. We had a good day yesterday. He just wants me to let him take care of me. I can't tell if it just for temporary, or forever. To me it just sounds like he wants me to let him take care of me, like he feels responsible for me. That's kind, but then where am I left later? He told me he has been writing on the computer, which is good. BUT, it all sounds like all our vicious circle conversations. Everybody he talks to only knows one side, so of course I am wrong. No personal responsibilty of course.
Today I went to sit with him, to tell him I was thinking about throwing in the towel on everything. To stay with him. Of course I still needed to know how I would know that this wouldn't happen again. That let to a broken keyboard. Now I fixed that, so now I need to worry about myself. WTF does that mean? And once again if he can't control his temper, how can I stay. I sure wish the attorney would call back- preferrably when I have no ears!
Today I went to sit with him, to tell him I was thinking about throwing in the towel on everything. To stay with him. Of course I still needed to know how I would know that this wouldn't happen again. That let to a broken keyboard. Now I fixed that, so now I need to worry about myself. WTF does that mean? And once again if he can't control his temper, how can I stay. I sure wish the attorney would call back- preferrably when I have no ears!
Sunday, January 2, 2011
Melting down again!
I just want to scream and freak out, but what good does that do? There has got to be somebody out there that can help me weed through this crap and help make the right decisions. I'm just drained and tapped out. I'm getting scared, not sure of what though...losing my mind? All I know is I am so thankful for my dog right now, because she is probably about the only thing keeping me together right now. I can't just sit and do nothing, and I don't know what else I can do to help myself today. Doing nothing will be the fastest means to the end. I think this may be the closest I have been to a pity party, but I'm really not feeling sorry for myself...just lost and more lost again.
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