I have Bronchitis! how the hell did I get this? that's what the Onc dr asked me yesterday...I told her I got it from her since the only place I go is to her office and home...and home and home and home.. . . .oh yeah, and my UC is back, or should I say didn't really leave and wonder if the antibiotics she put me on is causing a flare up, because some do cause this...inquiring minds want to know...maybe I should say my inquiring bottom would like to know, but hey, (no pun intended)
if I stop coughing and throwing up and wheezing and I can walk up the stairs, and take in a breathe that is a good thing, what's a little more diarrhea?
I'll just pray to the lomitil god and ask for relief....
Yeah lots of fun and stress at my house these days, so that helps matters...Calgon take me away, but not in my bathtub...I need like a really nice one with candles and stuff...yeah, in some other place where I'm not listening to my damn dogs bark, my kid giving me grief, I'm not crying at the drop of the hat because of all of these steroids I'm on....which I can't can't control...
I'm a barrel of laughs too.
I hope I get my family back after all of this.
yesterday was 5....I have 4 more to go
Wednesday, September 30, 2009
Sunday, September 27, 2009
It's Sunday. . .
where did the week go? it's been like a complete blurr......
Hannah's at Cal Cup today, 3 has three games. Sylvia took her to USC Men's Water Polo yesterday, thank you for rescuing her from me...yesterday was HORRIBLE!!!!! and I was Horrible. I HATE STEROIDS
So of all things my UC starts up last night, and I still can't figure out why when I walk up stairs I am completely out of breath. Bizarre. Like I have been working out, but in fact all I've done is walked up the stairs...or now in actuality, avoid walking upstairs until it's time to go to bed.
I'm pathetic.
I've got 5 more weeks of this, it kind of pisses me off when someone says its just five more weeks...yes I know...it's only been like 24 weeks...had a 2 week break....when this is over I have about a 2 week week break then I start 7 weeks of radiation.
If I can loose this 30 lbs of steroids on my face and neck I'll be really happy.
I'm going to the market today, my big outing for the week...just waiting for Eric to get home to take me.
We went to dinner last night, I almost tossed up my entire dinner in the car ride home. I guess we shouldn't go out for a while.....
OK, so boring stuff, that's it for now...trying not to wallow in too much self pity today
Hannah's at Cal Cup today, 3 has three games. Sylvia took her to USC Men's Water Polo yesterday, thank you for rescuing her from me...yesterday was HORRIBLE!!!!! and I was Horrible. I HATE STEROIDS
So of all things my UC starts up last night, and I still can't figure out why when I walk up stairs I am completely out of breath. Bizarre. Like I have been working out, but in fact all I've done is walked up the stairs...or now in actuality, avoid walking upstairs until it's time to go to bed.
I'm pathetic.
I've got 5 more weeks of this, it kind of pisses me off when someone says its just five more weeks...yes I know...it's only been like 24 weeks...had a 2 week break....when this is over I have about a 2 week week break then I start 7 weeks of radiation.
If I can loose this 30 lbs of steroids on my face and neck I'll be really happy.
I'm going to the market today, my big outing for the week...just waiting for Eric to get home to take me.
We went to dinner last night, I almost tossed up my entire dinner in the car ride home. I guess we shouldn't go out for a while.....
OK, so boring stuff, that's it for now...trying not to wallow in too much self pity today
Tuesday, September 22, 2009
Toxic Tuesday....
Well, I asked for Taxol lite today and only received a very strange look from my nurse, and a "nice try".
Mega dose of steroids has me on a string. . .
Yesterday went and saw primary care Dr., had her in tears, I couldn't stop crying she said it's the steroids, actually the 1st thing she said when she saw me was your on prednisone, how much?
yeah...classic big fat round face, bloating..I look like a fat pig. Feel great, look great. Can hardly wait for the week.
I have like one "ok" day a week now, and the constant mood swings makes it even harder. I just screamed at Hannah because she smarted off to me, like she knows I'm on this tight rope but just keeps pushing me, and I honestly can't control this very good.
All of my emotions are on on my sleeve and out of my mouth before anyone even says anything.
This is truly the hardest thing I have ever done, and on Sunday I felt like I was/am just loosing all faith here. I can't stand feeling so sick, sweating, waking up coughing and throwing up, aches and pains and everything else.
My life is on hold and I am moving through some kind of process that is robbing me of all of joy. It better be worth it, because if it comes back I will not do this again.
Mega dose of steroids has me on a string. . .
Yesterday went and saw primary care Dr., had her in tears, I couldn't stop crying she said it's the steroids, actually the 1st thing she said when she saw me was your on prednisone, how much?
yeah...classic big fat round face, bloating..I look like a fat pig. Feel great, look great. Can hardly wait for the week.
I have like one "ok" day a week now, and the constant mood swings makes it even harder. I just screamed at Hannah because she smarted off to me, like she knows I'm on this tight rope but just keeps pushing me, and I honestly can't control this very good.
All of my emotions are on on my sleeve and out of my mouth before anyone even says anything.
This is truly the hardest thing I have ever done, and on Sunday I felt like I was/am just loosing all faith here. I can't stand feeling so sick, sweating, waking up coughing and throwing up, aches and pains and everything else.
My life is on hold and I am moving through some kind of process that is robbing me of all of joy. It better be worth it, because if it comes back I will not do this again.
Saturday, September 19, 2009
Saturday. . . .
it is Saturday right? what a funk I am in. Lets see, Thursday night was a really bad night, and I did not sleep the whole night, I dozed for like 1 1/2 on Friday to find that a friend had made this amazing dinner and left it on our porch. I kid you not, It was amazing because I has no idea what I was going to do about dinner, was exhausted from not sleeping, and well I just couldn't stop crying. What a mess! People have no idea how things like this impact me right now. I am so emotional, over everything.
Today Hannah drug me out, I wanted to go to Barnes and Noble and when I got there, I couldn't even focus on looking at books, so we left, just really out of it still.
What I don't understand is why I am still waking up during the witching hour...sometime between 2-4am coughing and throwing up. Oh yeah and as a cruel joke Eric left the lid down on the toilet, get the picture? fun, not!
I need to clean my house but can't can't get the energy going and need to do some laundry, think I will enlist Hannah..... ugh
Today Hannah drug me out, I wanted to go to Barnes and Noble and when I got there, I couldn't even focus on looking at books, so we left, just really out of it still.
What I don't understand is why I am still waking up during the witching hour...sometime between 2-4am coughing and throwing up. Oh yeah and as a cruel joke Eric left the lid down on the toilet, get the picture? fun, not!
I need to clean my house but can't can't get the energy going and need to do some laundry, think I will enlist Hannah..... ugh
Wednesday, September 16, 2009
Nice. . . .
metal taste to go with my tongue ulceration that won't go away.. . .you know nothing will heal until after chemo! what was I thinking.
Luckily I was snagged some of these q-tip things that help with the pain for a little while...I am coveting them.
I made a huge pot of soup, thought I was going keep falling asleep while I was making it, but I did it and I froze 3 big containers, so now I am set.
I just have to say that my friends have been amazing and they still ask if they can cook, and even drop stuff off, and even though I resist it helps so much. I feel bad because I have been so sick from taxol that I literally can't get off of my butt to cook or stand or even go to the market. I feel like I am a disappointment to my family when I can even cook dinner and I am home all day. So little things like making dinners mean more to us than most even know, and we thank you and love you for helping us during this difficult time. You all have things going on in your lives, yet you take just a little extra time for us and again, it means everything to me!
6 more weeks!
Luckily I was snagged some of these q-tip things that help with the pain for a little while...I am coveting them.
I made a huge pot of soup, thought I was going keep falling asleep while I was making it, but I did it and I froze 3 big containers, so now I am set.
I just have to say that my friends have been amazing and they still ask if they can cook, and even drop stuff off, and even though I resist it helps so much. I feel bad because I have been so sick from taxol that I literally can't get off of my butt to cook or stand or even go to the market. I feel like I am a disappointment to my family when I can even cook dinner and I am home all day. So little things like making dinners mean more to us than most even know, and we thank you and love you for helping us during this difficult time. You all have things going on in your lives, yet you take just a little extra time for us and again, it means everything to me!
6 more weeks!
Monday, September 14, 2009
Sunday, September 13, 2009
I...
can barely handle this.
It takes me until about 11:30 am to start feeling somewhat normal.
Like what is normal anymore?
I can't stop sweating from all of the steroids. And to be completely honest, this is far worse than I expected. I keep waking up sometime around 2 am coughing and trying to throw up at the same time. I thought all of these new tricks were done. Every time something new happens I'm like wow, now what?
7 more weeks of this?
It takes me until about 11:30 am to start feeling somewhat normal.
Like what is normal anymore?
I can't stop sweating from all of the steroids. And to be completely honest, this is far worse than I expected. I keep waking up sometime around 2 am coughing and trying to throw up at the same time. I thought all of these new tricks were done. Every time something new happens I'm like wow, now what?
7 more weeks of this?
Wednesday, September 9, 2009
Biggest disapointment. . . .
I kept thinking about it all night, would it have carrots in it, I bet it's going to be so good...and matzo balls..... I really thought it was coming!
moving on....
I have now been blessed with 40 mg of prednisone, yes...I said 40 mg of prednisone. I expect to be balloon like in about one week, and also not to mention the other fun little item that my gastro ordered for me to today. Luckily the pharmacy didn't have it, but not to worry she said! I will have it for you tomorrow!! OH BOY!!! can hardly wait, and for inquiring minds, just ask what the fun item is, I'll be glad to tell you. It's something you get to have everyday!, that's right, and you do get used to it! that's right too! As a matter of fact, your body just kind of learns to absorb it if you know what I mean?? sound like fun? Well, let me put it to you this way, it's not.
None of this is, it all sucks! but, if it gets my UC and bleeding under control, yes I bleed..scary thought huh? then I will just deal with this too. along with the sweats... 7 more weeks
moving on....
I have now been blessed with 40 mg of prednisone, yes...I said 40 mg of prednisone. I expect to be balloon like in about one week, and also not to mention the other fun little item that my gastro ordered for me to today. Luckily the pharmacy didn't have it, but not to worry she said! I will have it for you tomorrow!! OH BOY!!! can hardly wait, and for inquiring minds, just ask what the fun item is, I'll be glad to tell you. It's something you get to have everyday!, that's right, and you do get used to it! that's right too! As a matter of fact, your body just kind of learns to absorb it if you know what I mean?? sound like fun? Well, let me put it to you this way, it's not.
None of this is, it all sucks! but, if it gets my UC and bleeding under control, yes I bleed..scary thought huh? then I will just deal with this too. along with the sweats... 7 more weeks
Where. . . .
do I even start. . . . .
I guess with yesterday...Ahh yesterday I now call it Toxic Tuesday...because of all of the diarrhea I have been having for the last two weeks we decided to hydrate me after chemo, I think I could have used more than 500cc's because along with the diarrhea I am sweating profusely from all of the steroids. Hey, who wants to be me?
Something funny actually happened while at Chemo, this after I had a melt down in front of the Dr and told her I can't do this any more. Sleep deprivation, and diarrhea will kill be before the cancer does I swear!
My chemo crime partner and I decided we should go downstairs to the pharmacy and get a diet soda, so we grabbed our poles, bags hanging and all of that stuff and proceeded to walk to the door when Lana, our Russin spy nurse said , "where are you going?" we said downstairs, to the pharmacy...next thing, Dr Kaul was at the door, blocking it like we would make a break for it, and she wasn't looking too happy with us, and said you cannot leave the office with Chemo, what were we thinking and to go sit down and behave, she wasn't having any Thelma and Louise escapades in her office...was actually very funny. So, one of her nurses went downstairs and got our sodas for us which was really nice! the laugh did us good.
Back to the serious stuff, I have to put a call in my Gastro because I can't go through another week of this and I am afraid what tomorrow will bring. I am on 20mg of predisone now and will see what that does but I need to talk to him soon. Can hardly wait. If I could just keep this part under control I feel like I could handle not sleeping all of the pain from the taxol, but along with it, this is a long haul...7 more weeks!
I met my Onc Rad dr today. He is nothing short of amazing, spent 2 hours with Eric and I explained everything from the beginning, the very beginning all the way through to where I am now, and to where I am going. What his plan is and how the radiation will work. He will also be radiating the lymph nodes behind the clavicle, as my tumor size was 4.5 cm (like a tennis ball), and he has no way of knowing if anything went there, even though it did go to my lymph nodes under the arm. He explained that there is no way to know if the cancer went into my blood, so that was kind of strange to hear and not comforting but what can I do?
So I have a mammogram set up for Nov., and then will have some kind of mapping thing for radiation, then I go someplace else and they do some other kind of diagnostic think that like slices layer by layer of everything, that goes back to him, and then we start.
Make sense? Uh yeah, sure it does.
I will have 7 weeks of radiation, that will start about 3-4 weeks after chemo, so I can rest and recover from chemo, I will go 5 days a week and it will take about 15 min ea visit.
I will get some kind of cream to use 2x a day and unless I am having a bad reaction to burning 2 x a day should be enough, if not maybe 3 -4 x a day with the cream.
I am like the worlds worst lotion putter on person, so this will really be interesting, I have no choice I just hope it isn't some disgusting thick stinky stuff, or I will really have a problem!
I just kept hearing him say you have one of the most aggressive forms of breast cancer that is out there, and this is is only way we can treat this...he was going through all of these %'s and because of all of these factors I'm like at a 61% that we will get this...or was it 61% that is will not be got??
It can reoccur, and to be honest many of the bloggers I have read on the TNBC site have pretty much all had reoccurance, all be it later...it still came back.
So, tomorrow I will pray for no diarrhea, and I will call my Gastro and hopefully we can just do a phone call and I don't have to go drive down to UCLA.
Fun stuff!
I guess with yesterday...Ahh yesterday I now call it Toxic Tuesday...because of all of the diarrhea I have been having for the last two weeks we decided to hydrate me after chemo, I think I could have used more than 500cc's because along with the diarrhea I am sweating profusely from all of the steroids. Hey, who wants to be me?
Something funny actually happened while at Chemo, this after I had a melt down in front of the Dr and told her I can't do this any more. Sleep deprivation, and diarrhea will kill be before the cancer does I swear!
My chemo crime partner and I decided we should go downstairs to the pharmacy and get a diet soda, so we grabbed our poles, bags hanging and all of that stuff and proceeded to walk to the door when Lana, our Russin spy nurse said , "where are you going?" we said downstairs, to the pharmacy...next thing, Dr Kaul was at the door, blocking it like we would make a break for it, and she wasn't looking too happy with us, and said you cannot leave the office with Chemo, what were we thinking and to go sit down and behave, she wasn't having any Thelma and Louise escapades in her office...was actually very funny. So, one of her nurses went downstairs and got our sodas for us which was really nice! the laugh did us good.
Back to the serious stuff, I have to put a call in my Gastro because I can't go through another week of this and I am afraid what tomorrow will bring. I am on 20mg of predisone now and will see what that does but I need to talk to him soon. Can hardly wait. If I could just keep this part under control I feel like I could handle not sleeping all of the pain from the taxol, but along with it, this is a long haul...7 more weeks!
I met my Onc Rad dr today. He is nothing short of amazing, spent 2 hours with Eric and I explained everything from the beginning, the very beginning all the way through to where I am now, and to where I am going. What his plan is and how the radiation will work. He will also be radiating the lymph nodes behind the clavicle, as my tumor size was 4.5 cm (like a tennis ball), and he has no way of knowing if anything went there, even though it did go to my lymph nodes under the arm. He explained that there is no way to know if the cancer went into my blood, so that was kind of strange to hear and not comforting but what can I do?
So I have a mammogram set up for Nov., and then will have some kind of mapping thing for radiation, then I go someplace else and they do some other kind of diagnostic think that like slices layer by layer of everything, that goes back to him, and then we start.
Make sense? Uh yeah, sure it does.
I will have 7 weeks of radiation, that will start about 3-4 weeks after chemo, so I can rest and recover from chemo, I will go 5 days a week and it will take about 15 min ea visit.
I will get some kind of cream to use 2x a day and unless I am having a bad reaction to burning 2 x a day should be enough, if not maybe 3 -4 x a day with the cream.
I am like the worlds worst lotion putter on person, so this will really be interesting, I have no choice I just hope it isn't some disgusting thick stinky stuff, or I will really have a problem!
I just kept hearing him say you have one of the most aggressive forms of breast cancer that is out there, and this is is only way we can treat this...he was going through all of these %'s and because of all of these factors I'm like at a 61% that we will get this...or was it 61% that is will not be got??
It can reoccur, and to be honest many of the bloggers I have read on the TNBC site have pretty much all had reoccurance, all be it later...it still came back.
So, tomorrow I will pray for no diarrhea, and I will call my Gastro and hopefully we can just do a phone call and I don't have to go drive down to UCLA.
Fun stuff!
Monday, September 7, 2009
Monday???
wow, I haven't been online in days!
ok......and for my new trick.....morning coughing and bloody nose!
still haven't had a solid nights sleep. I don't even remember what it's like to sleep the whole night through. I sleep, wake up, sleep wake up, and I am going to the bathroom all night night long, because I can't stop drinking water because I seem to be dehydrated. I've started this strange bloody nose thing I need to tell Onc. Dr tomorrow. Eric seems to think If I ask her, she will give me a week off of chemo...I don't see her doing it.
I have 8 WEEKS to go here, and I just can't figure out how I am going to get through this.
I feel like I just keep saying the same thing over and over again, but the truth of the matter is I am miserable.
It's funny, not ha ha funny, but when I had the 1st 12 weeks and the A/C I thought I can do this. Dr said Taxol would be easy for me. She flat out lied!
I mean I guess in her position I would have done the same thing, but I can't get off the couch come Thursday, it's Monday afternoon and this is the best I've felt since last Thursday, and honestly I don't feel too spiffy.
Everything I eat or try to eat, tastes horrible or I am pooping it out because of UC, so I can't even get off the toilet. Sound like fun?
ok......and for my new trick.....morning coughing and bloody nose!
still haven't had a solid nights sleep. I don't even remember what it's like to sleep the whole night through. I sleep, wake up, sleep wake up, and I am going to the bathroom all night night long, because I can't stop drinking water because I seem to be dehydrated. I've started this strange bloody nose thing I need to tell Onc. Dr tomorrow. Eric seems to think If I ask her, she will give me a week off of chemo...I don't see her doing it.
I have 8 WEEKS to go here, and I just can't figure out how I am going to get through this.
I feel like I just keep saying the same thing over and over again, but the truth of the matter is I am miserable.
It's funny, not ha ha funny, but when I had the 1st 12 weeks and the A/C I thought I can do this. Dr said Taxol would be easy for me. She flat out lied!
I mean I guess in her position I would have done the same thing, but I can't get off the couch come Thursday, it's Monday afternoon and this is the best I've felt since last Thursday, and honestly I don't feel too spiffy.
Everything I eat or try to eat, tastes horrible or I am pooping it out because of UC, so I can't even get off the toilet. Sound like fun?
Thursday, September 3, 2009
So....
sick today. Freezing this am, then the sweats. Up all night again last night. I can't take this too much longer.
UGH
UGH
Wednesday, September 2, 2009
Toes. . ..
are numb today and so is right hand. This is fun!
Had chemo yesterday and I still can't get this crappy taste out of my mouth.
Sleep update: didn't, ummm yeah and I have a headache today. Feel sorry for me?
On a different note....trying to figure out how the hell we are going to send Hannah back to Bucknell to an open house next month unless the coach brings her back, we can't afford to do this..keeping our fingers crossed, because if she goes back to open house, Eric has to go as well and well that's an expensive trip even flying southwest, but we have to make a decision here like within the week, just don't know how we will pull this off. (she can't make a decision about a school she's seen online)
Campus is amazing, school is amazing..offers everything she is thinking about, housing is on campus for all four years, biggest class is 21:1, common class size is 16:1 can you believe that?
If we can pull this off, get aide and any scholarships/grants would be something for her!
that's 100% on the wow factor..so we will see what will come.
that's it for now
Had chemo yesterday and I still can't get this crappy taste out of my mouth.
Sleep update: didn't, ummm yeah and I have a headache today. Feel sorry for me?
On a different note....trying to figure out how the hell we are going to send Hannah back to Bucknell to an open house next month unless the coach brings her back, we can't afford to do this..keeping our fingers crossed, because if she goes back to open house, Eric has to go as well and well that's an expensive trip even flying southwest, but we have to make a decision here like within the week, just don't know how we will pull this off. (she can't make a decision about a school she's seen online)
Campus is amazing, school is amazing..offers everything she is thinking about, housing is on campus for all four years, biggest class is 21:1, common class size is 16:1 can you believe that?
If we can pull this off, get aide and any scholarships/grants would be something for her!
that's 100% on the wow factor..so we will see what will come.
that's it for now
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