Did you know the maintenance chemo that the doctor had referred to earlier is something new AND it isn't guaranteed to stabilize or decrease the tumors? So when I read my report I thought the tumor had reduced again and she was going to suggest more chemo BUT it didn't reduce significantly enough to warrant that so I opted to NOT do maintenance chemo and just wait and see, since it's a 50/50 chance either way why not pick the way where I DON'T have to get sick every 3 weeks! So that's what I did!!! Yayyyyyy!!!
I really DID jump up and down with happiness today!
At then end of July I'll take a pet scan and see if it's increased or not. She said if it has increased minimally then I can chose to go to maintenance chemo (which I told her was HIGHLY unlikely) or if its increased significantly I can try a 2ND line clinical trial (2ND line trial is doing something that is supposed to decrease the tumors - UM, YEAH I'm for decrease not stable... unless of course I'm stabilizing when I have no cancer cells, I'm cool with that stable)
So the doctors really don't know much. They don't know
1. how I got this
2. how any one gets cancer (yeah, smokers get lung cancer more than non smokers, but of all the people who smoke what percent get lung cancer?... ya know?)
3. how long i have left to live if i do nothing
4. how long i have left to live if i do chemo
5. whether or not chemo will decrease, increase or stabilize my cells
6. all the side effects of chemo (I have black spots on my TONGUE! MY TONGUE, I'm turning into a freakin' CHOW!)
The doctor also told me that surgery and radiation are not an option because I this in my
lymph node (but you can do surgery on lymph nodes)
spots in my right lung(but you can do radiation on those spots)
left lung (but you can do surgery on lungs)
You can do surgery or radiation on any one of these things BUT the recovery time for surgery is 6 weeks (Eek!) and there are also side effects from radiation and to do both those things for all the places would be too hard on my body to warrant not being able to get rid of all of it. ALSO she said if I cut off the lower left lung then I lose capacity in that lung, it's better now when the tumor has room to move around out of the way, if there were less to move around in then I wouldn't be able to breathe any better.
All that was good to know since I was wondering why this wasn't an option. That's logical.
So no chemo for 2 months and I'm going to Live It Up! I am in between lists, I have achieved all that I wanted from my previous list... except Buddha-hood. So I need a new list of things I want to achieve before I die. I sing and dance when I biked around today - why be embarrassed? I want to do stuff I've been scared to do...but I have to think about things that I've been scared to do but wanted to do.
Anyway its uber-hot here but I am going to go biking. Maybe my friends can't go, but I am going to go to as many DC events as possible. I'm going to do the horizontal bop. I'm going to volunteer and try to think of ways I can help more. I'm going to retreat and get a stronger mind (I need to prepare for the next phase of this journey after all). I'm going to do it ALL.
Have suggestions for the list? let me know, it ALL.
So pray that things stay STABLE doing absolutely NO chemo. I will continue acupuncture and read some books about puffler's to see if things I eat can help during this time. I also signed up for a conference for young adults this weekend hopefully they will have some tips.
I feel like I have some theme songs, my mind has turned the lyric for Viva la vida into my anthem.
I used to rule the world
Seas would rise when I gave the word - (I didn't realize it a year ago but that was SO me, I mean I used to rule this freakin' body)
Now in the morning I sleep alone
Sweep the streets I used to own - (that's what it's like to get chemo)
One minute I held the key - (Seriously? Do you see the comparison?)
Next the walls were closed on me - ( :| )
And I discovered that my castles stand
Upon pillars of salt and pillars of sand
(such a perfect anthem)
Tuesday, May 31, 2011
Thursday, May 26, 2011
WE WOOOOOOOOOOONNN!!!!
DODGEBALL CHAMPIOOOOOOOOOON!!!!!!!!!!!!!!!
The playoff tournament was last night. It was intense, I had all this nervous energy as we watched the first teams play. You could feel the intense energy from everyone not just me, this is serious. :)
We played the winner of those first teams and beat them with our new strategy - only pick up balls when you have multiples to throw at the same time. Best out of 9 games wins and the second team we beat soundly and quickly, 5 - 0. Then it was down to us - the black team ( The New Originals) vs. our friends the tie dye team (Peace, Love and Dodgeball).
The first game they won, the second went to us, and it went like that until it was 4 - 4. The 9th game ended with all girls - 3 of our girls (Emily, Kate and Julia) vs 1 of theirs (Erica)... which lasted forever, our girls are good catchers but none of us can throw worth a damn.
Finally Emily threw the ball and Erica caught it... and then DROPPED IT!!!!!!!
So awesome AND it was great because I played well, it's nice to win but it's also nice to win and say that you've contributed to the game. One good guy's throw I caught and then immediately after I snuck up on another guy and tagged him out. :D
It was great, I had dreams of dodgeball last night, first night I could get a good night sleep since I wasn't coughing so much.
The playoff tournament was last night. It was intense, I had all this nervous energy as we watched the first teams play. You could feel the intense energy from everyone not just me, this is serious. :)
We played the winner of those first teams and beat them with our new strategy - only pick up balls when you have multiples to throw at the same time. Best out of 9 games wins and the second team we beat soundly and quickly, 5 - 0. Then it was down to us - the black team ( The New Originals) vs. our friends the tie dye team (Peace, Love and Dodgeball).
The first game they won, the second went to us, and it went like that until it was 4 - 4. The 9th game ended with all girls - 3 of our girls (Emily, Kate and Julia) vs 1 of theirs (Erica)... which lasted forever, our girls are good catchers but none of us can throw worth a damn.
Finally Emily threw the ball and Erica caught it... and then DROPPED IT!!!!!!!
So awesome AND it was great because I played well, it's nice to win but it's also nice to win and say that you've contributed to the game. One good guy's throw I caught and then immediately after I snuck up on another guy and tagged him out. :D
It was great, I had dreams of dodgeball last night, first night I could get a good night sleep since I wasn't coughing so much.
Sunday, May 22, 2011
I don't want to do this anymore
This time around I've been extremely tired, I sleep soundly at night and can still sleep soundly almost all day. It's an effort just to carry a glass. The injection started to make my bones hurt Friday, so now I have the added misery of aches and pains in the small of my back and especially when I walk or sit up. I haven't eaten much and haven't felt nasausea this time but now I'll just randomly throw up. I feel so alone, but I don't want people to come over to help because then I'll have to go down the stairs to open the door and then go back up them - it's too much effort.
I get a pet scan tomorrow. I don't care what it says, no more chemo for me... it's one thing to do this with an end in sight - like oh you'll do this and you'll go into remission or you'll get your life back but that's not the case here.
Last year I went to meditation retreat because I wanted to strengthen my mind, because I thought that there is the power to heal yourself and so much more in your mind. Now I don't know if I believe that, how can I, if I did I'd be on that path instead of this one, right? The truth is, I don't WANT to die, I just want this to end, and it seems the only way that this suffering can end is if I die. I can't think of an alternative... I rarely where my seat belt anymore - I've been in SO many car accidents in my life, SO many
I get a pet scan tomorrow. I don't care what it says, no more chemo for me... it's one thing to do this with an end in sight - like oh you'll do this and you'll go into remission or you'll get your life back but that's not the case here.
Last year I went to meditation retreat because I wanted to strengthen my mind, because I thought that there is the power to heal yourself and so much more in your mind. Now I don't know if I believe that, how can I, if I did I'd be on that path instead of this one, right? The truth is, I don't WANT to die, I just want this to end, and it seems the only way that this suffering can end is if I die. I can't think of an alternative... I rarely where my seat belt anymore - I've been in SO many car accidents in my life, SO many
Thursday, May 19, 2011
Chemo 4 - Day 2 missed dogeball
Note to self.
1.
Do not schedule the exterminator on your chemo day off, just because you're off does not mean you want to get up and walk up and down stairs.
2. Just because someone knocks on the door does not mean you have to go see who it is and answer it
3. Do not schedule a meeting with your lawyer on your chemo day off, just because you're off doesn't mean you need to run errands.
Needless to say, these things wore me out so instead of sleeping all day in preparation for dodgeball - I was seeing to other things - and dodgeball was a double header, I just couldn't do it. Hopefully we won both games.
Water has not tasted nasty though I haven't been drinking because it takes energy to drink but I think I'll meet me minimum requirement before the night is out. Do you know there are only 350 calories in ensure? That rather sucks doesn't it, aren't there more calories in a Snickers bar?
1.
Do not schedule the exterminator on your chemo day off, just because you're off does not mean you want to get up and walk up and down stairs.
2. Just because someone knocks on the door does not mean you have to go see who it is and answer it
3. Do not schedule a meeting with your lawyer on your chemo day off, just because you're off doesn't mean you need to run errands.
Needless to say, these things wore me out so instead of sleeping all day in preparation for dodgeball - I was seeing to other things - and dodgeball was a double header, I just couldn't do it. Hopefully we won both games.
Water has not tasted nasty though I haven't been drinking because it takes energy to drink but I think I'll meet me minimum requirement before the night is out. Do you know there are only 350 calories in ensure? That rather sucks doesn't it, aren't there more calories in a Snickers bar?
Wednesday, May 18, 2011
Chemo 4 - Day 1
Monday night I had dreams of passing out during dodgeball because of chemo and I saw a mouse.(but was able to get him out without killing him! :)) Needless to say I didn't sleep well before getting chemo.
Yesterday I say the nurse practitioner before starting and she explained the size of my tumor and what the report says. The tumor DID decrease by about 40/50% after the first 2 cycles so let's hope for the same these next two.
My white blood cell counts were too low for the type of chemo I was getting but I wasn't at the risk of infection so they gave me chemo anyway and prescribed a shot for me to get the next day to boost my wbc production. Bob administered that today ( he did good, it was just a prick, maybe Bob could have a side job doing that :) ) The side effects of this drug are all the same as the chemo except for bone pain. Let's hope that doesn't happen, the good thing is I'm to sleepy to dream about it.
Today I slept all day, except to go get my shot. I was able to get down my required 1 liter of fluids - which included 2 bottles of water and 2 ensures. Water didn't taste bad like it did the previous times so the first bottle I chugged wanting to get it down just in case that changed.
So I'm still just sleepy, hopefully I can make dodgeball - its a double header and I see my lawyer right before that.
I've also decided to renovate my basement - its something I've wanted to do and it helps me think of planning for life, not for death. But it's at least 4 weeks so 4 weeks of sharing the bathroom with my sister... my bathroom that only has a bathtub. It'll be a challenge but it'll look nice when it's done. My neighbor, William, is an architect and had his own business doing this so he's giving us a discount on the job. Very nice.
Yesterday I say the nurse practitioner before starting and she explained the size of my tumor and what the report says. The tumor DID decrease by about 40/50% after the first 2 cycles so let's hope for the same these next two.
My white blood cell counts were too low for the type of chemo I was getting but I wasn't at the risk of infection so they gave me chemo anyway and prescribed a shot for me to get the next day to boost my wbc production. Bob administered that today ( he did good, it was just a prick, maybe Bob could have a side job doing that :) ) The side effects of this drug are all the same as the chemo except for bone pain. Let's hope that doesn't happen, the good thing is I'm to sleepy to dream about it.
Today I slept all day, except to go get my shot. I was able to get down my required 1 liter of fluids - which included 2 bottles of water and 2 ensures. Water didn't taste bad like it did the previous times so the first bottle I chugged wanting to get it down just in case that changed.
So I'm still just sleepy, hopefully I can make dodgeball - its a double header and I see my lawyer right before that.
I've also decided to renovate my basement - its something I've wanted to do and it helps me think of planning for life, not for death. But it's at least 4 weeks so 4 weeks of sharing the bathroom with my sister... my bathroom that only has a bathtub. It'll be a challenge but it'll look nice when it's done. My neighbor, William, is an architect and had his own business doing this so he's giving us a discount on the job. Very nice.
Monday, May 16, 2011
Normal Days
This weekend was great. Saturday was rainy so I went to visit Wayne and Aletha, who of course cooked for us. Crabs yummmm! Then on Saturday the weather was beautiful so I got to bike, play volleyball, go on a date, do yoga AND join my neighborhood's happy hour. Shwoo, what a wonderful day! The yoga this time (I think I breathed deeper) caused the cough, so that will be the test for tomorrow's round of chemo, if it happens.
I also have to call short term disability, as they have overpaid me! It's very crazy - on one hand I'm a little apprehensive about spending money because the insurance bills or crazy on the other I don't want to take advantage of the system or anyone. The bills are still coming in for things that occurred in February (for the same surgery), I've paid over $1000 with insurance, which is weird to me, because if I'm paying this much what's the point of insurance. Let's just think I've paid into insurance for about 13 years, if I had just saved the money that went to insurance (contributions from my company included) I think I would have collected enough to NOT pay anything thus far. Seems reasonable no? And while I can afford it, I just don't know what they are going to charge me for next, and when they are going to stop charging me for the same treatment. It assists in making things less normal as it's harder to plan. I know, you can't plan for something that doesn't exist, but you know what I mean.
But I decided to make the absolute most of my normal days, and live it up when I'm feeling good. I avoid thinking about chemo as much as possible and anything having to do with this disease, just pretend nothing has changed as much as I can... except that now I'm happier about smaller things.
TMI ALERT!
TMI ALERT!
One thing that is not normal for me but VERY good, is my cycle has now shortened in days (from 7 to 4) and decreased in intensity, now it has BECOME normal, now I have a normal woman's cycle. Which is totally awesome and the ONLY good thing about chemo.
I also have to call short term disability, as they have overpaid me! It's very crazy - on one hand I'm a little apprehensive about spending money because the insurance bills or crazy on the other I don't want to take advantage of the system or anyone. The bills are still coming in for things that occurred in February (for the same surgery), I've paid over $1000 with insurance, which is weird to me, because if I'm paying this much what's the point of insurance. Let's just think I've paid into insurance for about 13 years, if I had just saved the money that went to insurance (contributions from my company included) I think I would have collected enough to NOT pay anything thus far. Seems reasonable no? And while I can afford it, I just don't know what they are going to charge me for next, and when they are going to stop charging me for the same treatment. It assists in making things less normal as it's harder to plan. I know, you can't plan for something that doesn't exist, but you know what I mean.
But I decided to make the absolute most of my normal days, and live it up when I'm feeling good. I avoid thinking about chemo as much as possible and anything having to do with this disease, just pretend nothing has changed as much as I can... except that now I'm happier about smaller things.
TMI ALERT!
TMI ALERT!
One thing that is not normal for me but VERY good, is my cycle has now shortened in days (from 7 to 4) and decreased in intensity, now it has BECOME normal, now I have a normal woman's cycle. Which is totally awesome and the ONLY good thing about chemo.
Sunday, May 8, 2011
Biking, Volleyball and Yoga I can do it all
Today felt like a normal spring day. I played for 40 min, played volleyball for 2 hours, and did yoga for 1 and only about 10 coughs today.
I have to stop pretending that I can predict the future and plan as if I'm going to live a cancer free life. Hell, I had it a year ago and was planning for the future so I gotta remember that, even when I'm sick. So I'm back to adopting a dog, not fostering, planning some trips abroad, I'm still going to do some adventure sports because hell you only live once... and maybe I won't worry so much about trying to help more people, I mean I'll still volunteer but maybe I won't get an epiphany on how to make the most people happy maybe I'll just try to help as much as I can even if it's only a few people.
Today, I was so happy I thanked the Buddhas all day. Oh, and after playing 2 hours of fully ball, on less lung capacity than a healthy person, I STILL passed 3 bikers going up a hill. Oh yeah, rockin'!
I have to stop pretending that I can predict the future and plan as if I'm going to live a cancer free life. Hell, I had it a year ago and was planning for the future so I gotta remember that, even when I'm sick. So I'm back to adopting a dog, not fostering, planning some trips abroad, I'm still going to do some adventure sports because hell you only live once... and maybe I won't worry so much about trying to help more people, I mean I'll still volunteer but maybe I won't get an epiphany on how to make the most people happy maybe I'll just try to help as much as I can even if it's only a few people.
Today, I was so happy I thanked the Buddhas all day. Oh, and after playing 2 hours of fully ball, on less lung capacity than a healthy person, I STILL passed 3 bikers going up a hill. Oh yeah, rockin'!
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