Tuesday, May 31, 2011

No more chemo!!!!!!!!

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)

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.

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

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?

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.

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.

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'!

Saturday, May 7, 2011

Statistics

I spoke to someone today who has the same type of puffler's as I do and it was in Stage 4 and had even moved into her brain and now she is cancer free. She had the genetic mutation so she was able to use Tarceva which apparently has a better rate of return, however they were still giving her 2 years to live. She said you can't listen to statistics, it's about the general population of people and doesn't apply to individuals. I'm in analytics I should recognize this. How would I forecast how something will act in the future? I would take the data set I had from the past and add factors like seasonality that are special to what I THINK my future data set would have and then make an assessment based on that. However I make up a Very small percentage of the data set so much so it's like working without data in order to forecast. So I have to stop thinking I have only 5 years left to live. I have to stop thinking that I'm going to be on maintenance chemo for the rest of my life. My plan is this, I am going to find a surgeon, after these 1 or 3 rounds of chemo to take out as much puffler's as possible. Then I'm going to heal. Once I'm playing sports again, then I may get some "maintenance chemo". I want it out, so it will be out. If you know of a surgeon willing to operate, let me know because that IS going to happen.

You know what's weird? Until 3 months ago I was trying so hard to realize that 'I may die today' as part of my Buddhist mediation and now I have to convince myself that I may NOT, well that I may not die in 5 years that is. The irony.

So I'm back to planning life
- I want to date, I'm not going to worry about telling them or not telling them about puffler's (hell they good die before me in a plane crash...lucky bastards)
- there are still more renovations I want to make on the house, maybe I should begin with that...


----
On another note - pick up dodgeball could be about the most fun you can have on a warm Saturday afternoon. We had a little kid watching us, talking smack! I think he was just excited that grown ups also play like kids. I broke all my nails tuggin' balls away from this dude (this is street dodgeball, the rules sometimes change LOL).


------------
on another other note - I think the next time I have my chemo week I should get people to visit me each day. I hate being around people when I'm sick, but since this isn't a cold, I think it's too easy to wallow and let statistics and negative thoughts in by myself...

Outliers

Friday I spoke with my neighbor Adam who is in public health he was telling me how there was discussion on changing the recommendation that women get a clinical breast exam every year from 40 to 50 because the majority of people who get it are older. This troubles me for obvious reasons because I'm an anomaly, how can I help someone else from getting this? It kills me (Literally hee hee)that if I had just gotten a chest x ray last year this time it is the difference between living a normal life after surgery and dying in 5 years or less. There has got to be a way of preventing other people from going through this. Then from the planetcancer.org site "Each year, nearly 70,000 young adults between the ages of 15 and 39 are diagnosed with cancer. In contrast to those younger and older, survival rates for young adults have not increased since 1975."
So basically I'm a double minority, no one is testing people like me - even the lungcancer.org is only advocating testing for people over 60 who have a history of smoking. So how can we as a society highlight this enough so people can at least decide for themselves what tests to get in order to advocate for their own health?

Thursday, May 5, 2011

I'M BACK!

It's me again! I feel normal, ohhh it feels so good to feel normal. Today I went to help clean up the center and then off to dodgeball, which we won, Undefeated! We went to Tom Tom's after and since this time was so early we actually talked and I got to know more about my team than they throw or catch well. I was talking to Jay, who at the age of 28 going on 29 (which he keeps saying like he's old) has lived the craziest life of a hustler who is just now back on the straight and narrow. Compared to his drama filled life it makes mine seem so uneventful. But I feel better after talking to him or maybe I just feel better because I don't feel queasy.

I was thinking I can negotiate and make choices for my life, maybe instead of not doing maintenance chemo every 3 weeks I'll tell them that I'm only going to do it every 6 weeks. ha, how do you like that doctors I get to tell YOU what to do! ha!

Wednesday, May 4, 2011

can't sleep

so I'm writing. I tried to lull myself to sleep with thoughts and out of crying with promises that this could be my last sleep, but I didn't believe it and cried harder.

5 years. I keep thinking I'll never fall in love, I'll never be in a relationship... career development?pointless. what have I done in the last 5 years? I was 31 I just moved to California. I went hiking a lot. I volunteered at the Animal shelter and helped dogs. I got a job with sfdc. I volunteered with HIV positive women in Tanzania with Cross Cultural Solutions which I had always wanted to volunteer with. I had Highest Yoga Tantra empowerment in Singapore...HYT is a big deal, I guess that was worth living an extra 5 years for... I went on a 10 day silent meditation retreat, I guess that was worth living for too, I'm bad at meditation but that made me better so for my next lifetime I have HYT AND a better meditation practice. I made new friends like Ayori and Sarah who now have met my friends in the east who they may keep in touch with after I'm gone... I don't know that them being able to meet was worth an extra 5 years. I renovated my backyard and turned it into carport which I wanted since I bought the house, though, again *shrug*. I finished Joyful Path in FP class and was able to learn a whole lot from Tessa and the California sangha about Buddhism, Geshe la, being in a sangha and stuff that was worth extra years for sure. I got to take my mom to a Maitreya Empowerment, one of Geshe la's last empowerments in England!
Maitreya Buddha, OK I think I can sleep now good night

Tuesday, May 3, 2011

sadness

Today I went back to work half day and then went to Hopkins for blood work. I felt queasy on and off all day until I finally threw up in the evening, about around the same time I did the last time after chemo.

The coughing is coming back so maybe this means its no longer decreasing. I can't seem to get happy this time around. To be honest I don't know what I'm doing this for, what's 1 more year, 1 more day... and I keep crying, maybe it's because it's chemo week and I feel sick and not myself. I once thought it would be cool to know when you're going to die, well if you had 6 months or a year because then you do all you wanted to do in that 6 months, like in that Queen Latifah movie. Having more than that makes it difficult to live... how can you plan a future when you know Exactly when you're going to go? Maybe if everyone knew it would be easier. Maybe if I were a parent it wouldn't be difficult, I'd want to see my kids get as old as possible or make it to graduation, etc. but I'm not and I'm wondering why I'm holding on to a life that's so obviously over.

I don't think I'm going to do the maintenance chemo, I think I'm going to take some vacations and volunteer as much as possible and go on a meditation retreat for my 6 months. I try to think of something I could do to make a difference, be an advocate for puffler's but you know what? In the end the selfishness of myself and everyone else is the reason I am dying from this disease. Everyone should have full body cat scans every 3-5 years, it should be part of your physical - why don't we do that? Because of money? When I die money won't matter to me. Shouldn't we already have a cure for puffler's or some form of early detection? In the end its the collective selfishness that stifles the cure.

There something to be said about hope and not knowing the future, right now it seems like mine is set... what horrible horrible actions I must have done in this or a previous lives to deserve this. Every TV show, every person I see,I'm jealous of their health. And so many people are wasting their lives, and I was like that just wasting my life being mad at stupid shit, being insecure, being afraid, being sad at stupid shit, now I really have something to be sad about and I look back and think you fool.

Sunday, May 1, 2011

ER

Yesterday I woke up feeling fine. I had two bowls of soup so I could get some liquid and then went to watch my sister play soccer.

All was fine until I started feeling dizzy and tried to walk it off. The next thing I remember my check bone is hurt and I remember hearing a loud sound on the bleechers and my sister asking me if I fell. I remember saying I think so and then I wake up again lying down with strangers around me asking me questions and part of the morning's soup in front of me. After all the questions I just got really really tired

I could hear my sister in the background, sounding scared. Is this my life? This is my life now and I hate it. The EMT suggested we go to the hospital but someone on Jennifer's team suggested that we call the on-call oncologist and ask her. When we got home I did that and that doctor said to go to the ER.

7 hours later I was back home - the doctor said my potassium was low and gave it to me intravenously which may or may not have caused me to really throw up, but definitely caused me to want to go home. So I did after getting a potassium prescription.

How can I make this life better? Right now all I really want is for some freak accident (hey kinda like getting puffler's) to occur and kill me instantly. I would consider selling everything and traveling until I die, except that I get so much joy out of thinking about how my family will spend their money.

At the ER there was a woman who looked about 80 something but turned out to be my mom's age, who had had stab wounds, puffler's in the lung(and still smoked), weed, and HIV and now couldn't eat and drink. Maybe those things happened gradually, because I kept thinking, while listening to the laundry list of ailments every time a new doctor entered, how do you LIVE like that?? Maybe because my fear is pain/suffering and not death, I never really Will understand it. Maybe