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.

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.

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'!

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...


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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).


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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?

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!

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