Saturday, August 20, 2011

Collapsed Lung

Thursday night my mom stayed at my place in order to drive me to the thoracentesis at 10am in Hopkins on Friday. I was totally looking forward to getting drained of any liquid because my breathing has gotten so bad.

My mom is so worried -- so every cough, every groan, every itch she jumps to make sure nothing is wrong or that she can't help... I feel so bad for that. Isn't it MY turn, my parents are the ones that are old shouldn't I be taking care of THEM? At the same time it is too much at times I cough a lot, I'm in pain and groan a lot and sometimes it is so much effort to talk, even just to say "I'm OK". Also I don't really like being touched and if my mom had her way I'd be sleeping on her lap or curled up in bed beside her. :D It's sweet, but too much for me.

A little before midnight on Thursday, while trying to go to sleep, I had a coughing fit and my mom rushed to my room

I'm OK
Are you sure?
Yep just coughing
This one sounds harder, you sure you don't want to go to the ER?

The ER, ug,is Always the LAST place I want to go. 5 minutes later however I coughed into a tissue and noticed that the usually clear mucus was now reddish. Dammit!

So my mom drove me to the ER at Washington Hospital Center which is the closest but maybe not the most effecient ER.

When I checked in and told them why I was there "coughing up blood" the ladies at check in kinda freaked, gave me a mask and slid my ID back to me without touching me. Maybe this isn't the job for them?

While waiting I started the Pathway to the Pure Land powa - maybe this is it, I kept thinking.

When I got to my own room and I told the nurse that I had lung cancer she asked if I smoked (I could hear it in her voice, 'ummm dumb ass'), when I said never she was shocked and asked me [like doctors have been, do they know how you got it??] Dude, I'm not the freakin' doctor YOU tell ME! The nurse also had trouble drawing blood - like CRAZY trouble because she had to stick me twice and the 2nd time she kept moving the needle around digging into me! I have good veins so I don't understand the issue but DAMN my arm is still a little sore from that. This is while the student doctor was talking to me saying I looked like I could run a marathon. If only.
Finally she sent someone else in to collect blood and start an IV.

They ran tests on me - X ray, cat scan, took blood and sometime in the middle of our stay (we were there from midnight to 6 am) they gave me dilaudid (hydromorphone)a pain medication via IV that actually got rid of the pain in 2 minutes! my oxygen levels were also low, at 91, so they gave me oxygen. Without the pain and better able to breathe I fell asleep, real sleep for the first time in weeks. My mom said I only slept for 3 hours and not uninterrupted but on our drive to Hopkins that morning I felt refreshed!

When we did get to Hopkins, I gave the pulmonologist the CD of the CAT scan and they tried to find liquid to drain however they could not find anything to drain, apparently I have a lung collapsed. That sounds bad I told the doctor but he says its not as bad as it sounds.
???

He says it looks like puffler's has moved to my trachea (windpipe) so he wants to schedule a bronchoscopy for Monday to remove any blockage and put a stint there so no more tumors grow there and then also see where the blood was coming from. I also speak to a radiologist on Monday to discuss radiating some of my lung (if, from the bronoscopy, they can see something to radiate).

After the NO thoracentesis my mom and I drove to my uncle's to nap and then back to Hopkins to get my first radiation on my left breast. I also asked for a prescription of hydromorphone which last night had me sleeping like a baby, let's hope it does the same thing tonight.


Meanwhile I am hurt up. Going up the stairs is such an effort that I have to make sure I consolidate bathroom and errand trips together. I need to cook snacks for myself because I'm not eating enough but it takes so much energy to do anything and it seems like walking - any movement- brings me to coughing and feels like my lungs won't be able to take enough breathes.

Yesterday I thought 'Gosh, I am just really dying. fast.' I'm OK with dying because Geshe-la says he'll be there - just like during festivals and he says 'If you cannot do it, don't worry. I'll do it for you'. But it hurts to think that my friends and extended family won't know how much they mean to me. I have a will and am leaving stuff for my immediate family but I have nothing to leave for my friends, I feel bad about that. Cindi said she wanted pictures of us, so I can do that. Yunki is getting my carved wooden Buddha picture but how do you tell everyone you love how important they were to you when you were alive?

Wednesday, August 17, 2011

my feet don't hurt

my legs don't hurt
my toes don't hurt
my nose doesn't hurt
my hand doesn't hurt
me eyes don't hurt
my lips don't hurt
my butt doesn't hurt
my belly button doesn't hurt
my right lung doesn't hurt
my right breast doesn't hurt

Cindi suggested giving love to my other parts during pain. Instead I chose to point out what doesn't hurt but it still worked some yesterday morning while I waited for the oxy to kick in.

Tuesday Cindi and I spoke to the Block Center nutritionist about my blood results and how to raise things that were too low and lower things that were too high by what I ate. I like the Block Center because there is research specifically for cancer behind everything they tell me to eat. So it was a very thorough conversation and was good to have before radiation because now I know to eat miso and green tea before hand and curcurmin to help my skin.

Jennifer M,Pontea, Cindi and I went to see Chicago at Wolf Trap on Tuesday night but since they don't have their lead singer it was like listening to a cover band of Chicago. Jennifer M thought that she was getting us tickets to the musical which was funny. Cindi and I were watching them perform and I started coughing and she turns to me and says "You know, you should really get that checked out" Funny girl.

I got 3 hours sleep Tuesday night, pain or coughing wakes me up.

Wednesday went to the MRI planning session where they make a mask for me for brain radiation. So up until this point I've been pretty much telling people stop smoking because the SYMPTOMS of lung cancer suck. Now I gotta add that getting a freakin mask that is tight against your face and neck when you can barely breathe to begin with, is pretty much up there with the WORST THING EVER. So I have 2 masks of me. I was able to hold my cool while they put on the HOT plastic and slid it around my face and nose and mouth keeping me in a permanent SMILE like the Joker in Batman.

but when it got to taping it down tighter?? Um, I was like I'm starting to freak out guys and then I was like take it off take it off! back to the drawing board. They are DEFINITELY gonna have to give me meds to calm me down when the actual procedure (that last an hour and is in a MRI machine not the CAT scan as it was today) is done.


yesterday's MRI was better however - the technician, Nettie, let's you select a pandora station so you can listen to music while inside. This was the FIRST time I was actually calm inside and thought it was even funny to be hearing LL Cool J's
"I need love" to the background of the buzzing and beeping and clanking of the MRI machine.

i am so pooped! i brought up the laundry and had to rest every 3 stairs to get it up 1 flight of steps. and it seems as if my tumor has moved to a place that covers one of my valves for breathing - last night was very difficult, I had dreams of going to the ER and having them drain me of the excess liquid. Every breathe is so labored.

last night I got about 5 hours so I feel a little better today. I think I convinced myself that someone was coming to help me and give me a thoracentesis and that made me feel better.

Tuesday, August 16, 2011

better

Sunday also was a bad day but yesterday the pain was bearable. I wish I could get my hands around it. Sunday night I thought I slept well and then my mom said "really, you got up at 2:30 am, 3:45, 4, and then 6" or something like that. I guess that's good sleep now? Last night I took 5mg of Oxy at 12:30am which allowed me to sleep until 2:45 but I'm supposed to take it every 4 hours so I tried to sleep through the pain and took another at 4:30. Now its 6:30 and I'm not in unbearable pain but I'm still Up.

I see the acupuncturist this morning and can't wait to have at least 45 min of pain free deep sleep.

Yesterday I went to the doctor to get the staples removed there was still some swelling so she didn't remove them all. Do you know they don't deaden your head or knock you out to take them out? They just get these scissors and cut them out. Yeah it sounds painful, but it wasn't go figure. So the good thing is I got a lot of my questions answered about what's normal after this surgery

1. The base line of my motor function is the first 2 days after. If I had full strength and feeling, which I did, then I won't get worse than that point. What a RELIEF!

2. Pain meds, DO effect my motor functions that have just been operated on so when they become numb and weird when I take Oxy or Hydro that's normal.

3. They did a cat scan and the swelling is decreasing in a normal way so I don't have to worry about regressing

4. I CAN take a bath and go to the spa just protect my head from water (the no bath rule was for spinal surgeries)

5. It takes 6 weeks for the brain to heal 90%, and 2 years to heal the final 10% so the doctors usually give the OK to go back to regular activities after 6 weeks. (dodgeball here I come!)


So I have a hectic schedule of docs this week.
Tues acupuncture and Block Center follow up
Wed brain mri planning meeting - B12 shot for chemo next week
Thurs radiation for breast (yayyy!!) and cranial sacral therapy (I don't know if it'll work but it can't hurt to try)
Fri more radiation for breast!!


Last night Cindi came and we went to Ethiopian, since with the Block Center I CAN eat out just healthier. Then we stopped over to Bob's place. Cindi thought I had been exaggerating about the size of my behind - we had my dad compare them.

hers was bigger.

Bob saw it screamed "Oh MY GOD!"

Yep, people that's what they're saying on the streets these days about my booty - OMG and not because it's large. LOL



Sunday, August 14, 2011

pain

the night started off well. I went to the farewell party of my dodgeball teammate, Mike. Got to catch up with him he's very tall so he saw the staples from surgery. He's going to Ireland to be a sports medicine doctor. I also caught up with Yang who's gonna invite me to game night soon.

I stayed longer than I thought I would. during the party my hand and arm went numb. I stopped taking the antiseizure med b/c it's so big and i asked for something smaller but didn't get an answer back. i guess i'll ask on monday. i watched DVR but couldn't sleep. I'm sleepy, but I'm in pain. My leg numbness bothers me. I feel unattractive - isn't that funny, I didn't lose my hair but now I have a port scar, a breast with a hard lump the size of a golf ball (making it about 2 sizes bigger than my right), no butt, staples in my head, a permanent shoulder lean that I thought was from the pain but now I think it's just b/c the left side is heavier.... my clothes hurt b/c they touch my breast that's painful (is this what breast cancer feels like, or does puffler's just do it's on unique thing?)

I did another non smoking commercial that I didn't post. I was crying through most of it. will that stop people from smoking?

I'm so sleepy. I'm so tired. my head hurts. My breast hurts. My back hurts. When is this going to end? Can you please tell me how much more I have to endure? I'm so tired. I started reading a book Cindi send planet puffler... one of the writers says 'to say it's a matter of fighting or being positive enough (to be a survivor) makes death the fault of those who died'. That's what I feel, I can't be positive all the time, many of the time, about this so does that mean I'm causing my own death? I WANT my pain to end right now, I don't actually care how, so will it be my fault if I die today? I guess that'll be on others to think about when I die. All I know is that I'm so sleepy. I'm so tired. my head hurts. My breast hurts. My back hurts. Can anyone help make this end?

Friday, August 12, 2011

Karma, Acupuncture, focus... and anger

This morning if I stayed in one spot it seemed like the pain wouldn't fully infiltrate. But I had to get up to go to my acupuncture appointment.

My mom was on a mission to cure cancer today and I was on one to cure pain. So I went to acupuncture hoping that he can do his magic again.


It didn't stop immediately but 10 minutes after the needles were in, my chanting (Tayata Om Bekandze Bekandze Maha Bekandze Ranzaya Samugate Soha) had stopped
and I was asleep! NOT the dizzy drugged sleep with slight pain that I have with the oxy but real sleep! Once the needles were out the pain returned so I'm going to see him twice a week and see if that helps. So at least next week Tuesday and Friday I know I'll be REMin' it up!

I called Hopkins, to schedule an appointment to get this B12 shot (I have to get it a week before I can get chemo) but she said she'd call me Monday, don't know if you can do it with radiation. It's hilarious, now that I WANT chemo I can't get it to save my life... Literally! (heh heh Cindi loves that joke)


After that I went home and saw the work that has been done on my place. You know there's something to be said about having something to take your mind off of your pain. I was still in pain and trying to get my back to move into the right position to make it better (which is useless, there IS no right position, but the body tries) but it didn't hurt as much as it does when I have NOTHING else to focus on but it. So while my mantra to end all living beings suffering, while suffering is helping my compassion I need to think of something else to focus my attention on while in pain. That's a work in progress.


It was so nice to be home, I didn't want to leave. Toula (my sister's dog) was so happy to see me. It was nice to walk around and talk to my neighbor and just be doing my own thing in my own space. My dad and I decided to leave after rush hour to go back and we lingered or I lingered because it was so nice to be back home.


So this evening the focus of my attention was my kitchen, my next renovation(a new bathroom) and unfortunately, anger. [Ahh Buddha I'm trying but I'm still a work in progress!] My mother thinks my house is too dusty for me to go back into and decided that I'm not going back yet. She thinks that it is INCREDIBLY stupid to go back and selfish and that I'm not doing enough to cure myself. Am I begging to die?
(OK um yeah sometimes I am dude, YOU trying being in pain all day and night and see if part of you doesn't beg to die) But more importantly... :( y'all know me. I'm like a mule, you cannot just TELL me what I'm going to do or not do! And I felt like I was doing so well this week with compassion and kindness and 1 moment I realize how much more work I need to calm my mind. I guess it's a good lesson.

...Needless to say, I'm going home tomorrow and I can't wait to be back in DC, talk to my neighbor (who was right when she said you gotta LIVE like you want otherwise you'll just waste away - she is 85 and has had heart attacks, etc. but still works part time) and hang out with some dodgeball friends!


Oh. speaking of wasting away. Dude I'm weighin' in at 133. I was 135 throughout high school! The perfect me should be 145-165 (yeah that's the range dude, in December I was 175). So I need calories, I'm not supposed to have milk or sugar but Bonnie gave me a scharffenberger chocolate bar that is almost gone and I hope hanging in there and making some FAT, sticky to me bones! I think I'm gonna try to do the cancer yoga class too on sunday... gotta find that flier.... and make some muscle!

I feel much better now, I know I still may die today (just like everyone else) but when I'm in pain I also feel so guilty. I know it's my karma, my past action that caused this, it makes me feel so bad to know that I caused so many people this much pain. Fortnately Vajrasattva is there, I'll be purifying tonight for sure!

Wednesday, August 10, 2011

Is it me?

I dont' know. i think i was asleep and then i moved my head a certain way - it hurt and then my hand went numb and then i panicked. i'm taking anti- seisure drugs starting today and the side effect is you panic and want to commit suicide and dizzy. i'm scared. should i take the other anti-seisure pill? i was supposed to take 2 today. am i panicked for real or it is the drug. i don't feel like i want to commit suicide. what's going on

ok called cindi i'm not having a seizure and i'm gonna ask the doctor if i can have non seisure medicine that doesn't have a 'panic, suicide' side effect... and smaller

Tuesday, August 9, 2011

I'm alive and I can move

so the surgery was a success.

with the pain medication my head doesn't hurt at all, but my lungs do. Oh puffler's, you're like a racist man, you can't seem to learn to live in communion with others and it will be the death of you.

Random memories from surgery -

my mother relaxing before my surgery (thought that would never happen)
my anesthesiologist singing "Hey hey we're the monkeys" as he wheeled me into surgery, I joined in of course.
despite my big gorgeous veins, someone missed and pumped me with stuff outside of my vein OUCH... I didn't get angry. weird.

Kate my ICU nurse who was really nice... though she woke me up every hour to do tests.
Melissa my 2ND nurse who thinks I have a positive attitude about the whole thing even though its so unfair (what makes her think I'm so positive I'm still wondering about... maybe b/c I wasn't mean?)

Things i don't remember but family does
to the surgeon "did you remember to take pictures?"... he did not

My sister says "Holla back" and I say "woo woo" in response when we say goodbye... apparently I respond when heavily sedated and slightly unconscious too



Things I love
my family and friends of course
but especially Buddha, sometimes I get mad at Buddha, that since I chose this faith, I can't end my own suffering... it's more suffering than I ever thought I could bear with my low threshold for pain...but one day, some day because of this experience I will truly love ALL living beings unconditionally. I'll truly understand emptiness. I will have wisdom and be enlightened and finally be able to help living beings truly.

I don't see how this will get me there to be honest, I see I have a lot more work to do and if I survive this for any long amount of time (like a year) I hope I don't lose the patience and caring that I've gained - by suffering.

that's all

Friday, August 5, 2011

Ok one last thing


I love you all my friends and family

Remember cartwheels and jumping up and down!!
Dodgeball Champion!!

Happy
Healthy
Enlightened
And
Love

Oh, and if you couldn't tell by this blog, whether I know you or not, don't hurt yourselves. Stop smoking.

Thursday, August 4, 2011

The Last Supper




Today we woke up at the crack of dawn 4:15 to get to the hospital by 5:30 for a 6:15 am appointment like the woman emailed me. We arrived at 6 only to realize that the appointment was for 8.

We could got good sleep!


Anyway I took the MRI which are getting scarier and scarier the more I take - this time my mom came in to touch my feet so that it would't seem like I was trapped in the machine AND the technician changed the head gear to a bigger one that didn't touch my chin (which let me just tell you freaks me out to NO end!). It was good, the lack of sleep the night before had me sleeping in the machine part of the time, I still chanted Liberation Prayer, I still repeated that Geshe La was with me and now my mom. It was good too she was there because sometimes it felt like she was pulling my feet and moving my head (which was all in my head) but because of that I was focused on her and not being trapped in the machine. Much better.


After the MRI we went on to see the surgeon who showed us the MRI of the tumor which has grown from about 2.2 cm (7/20) to 2.5 cm today so he says its good I'm having surgery tomorrow. He is not going to film it, but I asked if he could take before and after pictures. It's really close to the surface of my head which is positive he's hoping it will be easy to get out but won't know fully until he opens me up. Then he'll decide to do radiation, take out some and do radiation, or take out all.

he said I'll be paralyzed on my right side for 48 hours just because of the anesthetian alone. That part freaked me out. Paralyzed. And it could be up to a week. I could be in a wheel chair for a week. That is scary. The next project on my house starts tomorrow (I gotta do these things to have something to live for/ look forward to, ya know?). This time it's getting a kitchen bar and arches in dining and living room. I'll stay with my uncle while its being done probably and I'm looking forward to some GOOD cooking from my aunt while there. YUMM!

I'm packing up now and taking a LOT of CDs and putting things on my MP3 player since I'm not going to be able to use my right hand, dharma will have to be listened to and sung instead of read. I'm bringing CDs of my favorite Buddhist pujas and lessons. That should be good. Also I have found 2 of the 3 books on CD Cindi sent... if only I could find the other :D It's still me!

I decided to break the diet today I mean this could be it, ya know!? I know no one wants to hear that but I feel glad that I'm at peace with at least 2 of the 3 outcomes.

I also spoke with the radiologist who says that it is possible to radiate my left breast to get rid of the new tumors there so that's good I'll meet with her on Wednesday.

Well I'm tired now - dharma in hand I should be good to go. Also I'm back in the 40s again weighing in at 141.5 woo hoo. 5 more pounds to go. today I had the last supper with my friends totally off diet (tuxedo cheesecake and all!), good italian food, i started to have a drink but remembered opps oxycodone! For lunch I had crab cakes and potatoes oh yeah pure decadence!

Tuesday, August 2, 2011

cooking class

Today we went back to the Block Center for their free cooking class for nutritional cancer fighting meals. we had black bean dip and wrap (the dip was SO good) and quinoa salad and even sorbet (which was really easy to make!). It was very healthy and good. So I lost 5 pounds I'm at 141 which for normal people my height is good but it isn't for me. I'm too thin, my underwear doesn't fit properly for the first time in life! So as well as my other missions (like beatin' this thing) I'm on a mission to gain weight. So beans, avocados and nuts here I come!

After cooking class we drove to Milwaukee (where we flew into)and walked around the lake which was very pretty. I was doing good with the pain, I'd taken 2.5 hydrocodones and it wasn't all gone but bearably there. Then right before we got on the plane I had an arm spasm and had to take Dex (steroids), good thing the surgery is soon. On the plane the pain came back and I took an Oxy but it didn't help, then it became worse and I was in the air crying in pain worrying about ODing on oxy - when did I take that stuff again? I finally waited what I thought was an hour and took another which took some of it away at first and is gone now. I pray to the Buddhas so much PLEASE let the pain I receive be preventing someone else's pain. I thought about it and even my enemies' pain. I actually don't have enemies, yes people are annoying - I've had colleagues who toot their own horn often, or bosses who have stressed out about the smallest thing stressing me out, or drivers who drive too slow and customers who are condescending but do I wish them THIS PAIN?
I do not and if I can prevent by begging and pleading and wishing that my pain prevents theirs then I gladly do it. PLEASE Buddhas, please listen to me. Please take away the pain of all living beings with my pain, please take away their bad karma so that they don't suffer like I'm suffering. Please let my pain have a purpose a meaning a goal, please, please Buddhas, please listen to me.

My sister picked us up from our much delayed flight, you know I think she is too dependent on me being the landlord. She says she wants to stay in this house when I pass away but I don't really think she will. I think she'll sell it and move to an apartment where there is a landlord who can take care of the problems. I have no problems with that, when I'm dead I could care less but it will be interesting to see. ... for someone else to see.

I want to renovate my kitchen, just knock down the wall and make it a bar but I want it to start Thursday so I can be out of the house for 3 days while it's done. William can start Monday which changes things so I may start when I go on vacation. ...or maybe not at all. I haven't wanted to buy anything or plan much after Friday. On amazon I have some books on hold until after the surgery. There are clothes that I saw, maybe after the surgery. Will I say the same thing for chemo? I called Dr. Brahmer about starting the Alimta back up and I have to take B12 shot and then wait a week. Meanwhile puffler's is screaming for more room in my body, and I have none to spare.

I also spoke to a Dr. Judy that my cousin Vanessa told me about she is in Fort Lauterdale and is supposed to be able to get rid of the pain in 3 days! Her website is http://www.cancerdetoxsecrets.com/ so I'll see about going to her and also getting sacral cranial therapy after the surgery but nothing is set in stone. I'm not gonna do Gershon therapy just yet I'm going to change my diet further (which in many ways is easier than my nutritionist's diet) and see... well this oxycodone is hitting me pretty hard gotta sleep.

The Block Center

Was good yesterday, there is a lot to read and I'll be changing my diet a little to incorporate and take out some of the things the nutritionist recommended since their nutrition is based on specifically my situation. For example I can't have milk because it has casein in it and few eggs but I CAN have soy, since puffler's isn't hormone based. Also not Everything has to be organic, they have a list of items which are greatly affected by pesticides and ones that are not - greens are, mushrooms not as much. And I CAN have caffeine (or chocolate rather), just not the milk or sugar in it and not too much, but at least I can have some!

They also took 14 vials of blood to test for all sorts of deficiencies so that they can hone the plan even further. The doctor there recently met my doctor, Dr. Brahmer, and said she is so focused that her advice sounds sound. I will just take in addition supplements and get the Alimta in the mornings (supposed to be better on your body then). My mom felt very comfortable with them, I think more comfortable than she feels with my current doctor. Granted I am still comfortable with my current doctor I just wish she were closer.

There was also a mind body expert who talked to me about how I was handling the pain mentally and also gave me some more exercises to help with stress (one of which I tried last night but it wasn't the right one for the situation).

I couldn't sleep. I'm not angry, or in pain (well not unbearably so), or sad... I just couldn't stop thinking of the worse case surgery scenario which is that I end up paralyzed and my family is doing everything they can to keep me alive. Clearly I need to talk to them about that because if I'm paralyzed everything ceases - I won't get chemo, I won't take supplements, the eating plan is over. I want to eat chocolate tuxedo cheesecake, hot chocolate, mac and cheese and take pain meds and run, not walk into my next life.

So every time I closed my eyes I saw being paralyzed, I finally gave up trying and read a fantasy book instead. Good thing I got a nap in yesterday.

Today we'll probably go back to the Center for a cooking class and then just hang out until our late night flight.

Saturday, July 30, 2011

Druggie

Today was better, I didn't sleep all day and decided to just pop Hydrocodone like they are candy. So I ended up taking 3 and being pain free - yep, I'm a druggie, who knew?

But b/c of it I got to spend quality time with the family instead of being in a painful stupor so it worked. Tomorrow off to Chicago to see my cousins and go to the Block Center, apparently the founder, Dr. Bloch, had stage 4 lung cancer and using this integrative approach survived 26 years and died of heart failure (e.g. old age). I'm cool with that!

Friday, July 29, 2011

more of the same

So the pain patch isnt working that well anymore. Turns out I'm also not supposed to put heat on it, people have ODed. ODing, not a bad way to go but I decided tonight to take off the patch (its time to change it anyway) in order to wear the heating pad.

Happy
Healthy
Enlightened
And
Love

I hurt today. Slept most of the day. I don't believe HHEAL, but I've said it. I feel surgery looming. Brain surgery. This is my last Friday night with this brain, yep I guess the countdown has begun.

Thursday, July 28, 2011

Wisconsin - day with the fam

I didn't get any sleep last night (and we woke at 4:30 am to catch the morning flight). I was able to fly without issue but now I'm SO tired but I've got to hang with my nephew and nieces and see my brother's new business, Ladybug, which is really cool. (pics to come)

I didn't have pain until 8:30 pm pretty sweet and the tightness is gone again. Shwoo. My brain surgery is scheduled for Friday 8/5.

Wednesday, July 27, 2011

Dying to Christmas

I went to bed last night and woke up this morning not feeling like I'd make it another week. The tightness in my side makes me panicky which I can't do because panicking means breathing harder - not something I have the capacity to do on my left.

Despite this, I listened to Vajrapani sadhana and juiced and spoke to Alice about long term disability which is starting for me today. Isn't THAT crazy? I'm LTD? It feels like a unreal part of society a part I never saw myself in. What does that MEAN? I asked Alice I still want my job, I mean if I make it through this I don't want to lose my job you know? She was like yeah for sure, but I don't think I relayed all that I was thinking. Seriously, I like my job, I like my company, what about my stock... if I die soon, I want to die an employee of sfdc not a long term disabled person. I talked to my cousin how has been on LTD and she calmed some of my concerns. And then I was concerned about when I would get my next pay check, how does this all work? Gosh so much to think about.

2 hours later my boss emails me telling me that my company has given me a bonus and time off to allay my concerns. Can you believe that?? I work for the best company in the entire world!

And then at the end of the day one of my colleagues sent me an email telling me how much I helped his customer which is nice to know that I'm still doing my job well. I'm still a working member. I don't know there's a lot to be said for just feeling normal.

I also went to Spa World today which was awesome and now my body is not so tight on the left side and I feel better.

Well tomorrow I get up bright and early to see my brother who says that my niece is as excited as Christmas that we are coming tomorrow. Christmas! I hope we can live up to that!! :D

Tuesday, July 26, 2011

Refusenik no more?

Maybe the only option I have for my lungs is chemo and just the maintenance chemo which she says will have less side affects - little fatigue, no nausea, no hair loss. I want to try this nutrition thing and I AM, but puffler's is growing FAST, super FAST. There are spots on my liver, its in my left breast, my brain. I can FEEL it in my side - I barely have the capacity to breathe there's no space left its just pufflers! It moves around and today it's like I'm wearing a shirt that's too tight on my left side and I can't take it off. I want to make a cut on my side and give my lungs space. They need ROOM!
So nutrition may work but I'm in a serious Race, nutrition seems like a marathoner but puffler's is a sprinter!
Tomorrow my mom is going to do a prayer vigil over me, hoping for a miracle. Why can't a miracle happen? I rack my brain, how HOW could I have PUFFLER'S?? Breast cancer,ovarian, some rare cancer but PUFFLER'S? If you smoke, please please stop. Please don't increase the risk that this could happen to you. I tried to do a non smoking commercial but I can't even show you how AWFUL it is, how much pain I'm in, how I can FEEL so strange, how scary and bewildering it is to have this and no options.

Sunday, July 24, 2011

The H in HHEAL


It's amazing that I feel happy. I feel at peace. I feel hopeful. Will that all change when I speak with the surgeon and radiologist tomorrow? Who knows, I'm going to revel in what I do know and today was a good peaceful day. I woke up juiced my veggies, had my supplements, did the enema, read my book and then went to pick up Jennifer for her first Spa World experience! We had a good relaxing time, Spa World is soo nice, we were there for 5 hours. Even had a Korean massage (apparently Jennifer's was more authentic than mine hee hee).

Oh I also made a no - smoking commercial, I'm going to post it on youtube. Hopefully it'll reach at least one smoker and he'll stop because he doesn't want to be in pain and not able to breathe. Well g'night!

Friday, July 22, 2011

HHEAL




Yesterday I woke up happy. What a difference a pain makes eh?

I gotta make sure I'm able to "breathe easy" and my ribs and back are "comfortable". (Cindi insists that I voice this positives in the positive. Yes "Momma Cindi") Anyway breathing easy and being comfortable are a key to my happy and manageable mind.

I woke up a little panicked just now. I just want to make sure I see my brother and his family, I want to go on vacation, I want to have good sex and I want to go on a meditation retreat. Isn't that silly. I feel more live LIVING more than I do DYING even though I've got worse news but I want to do it all. And good sex, is that not crazy or what? But I do, I want to see my family, go on vacation, sex and meditation. Those things don't go hand and hand at all! LOL

The only thing I feel I have let to do is leave something to my friends nen notame ne? I have this will that leaves things to my family so that they know but do my friends know how much I love them? I have Really great friends. People should be jealous of me just because of the friends I have. I've never been in love before (and even though for the first time in months I'm actually dreaming about MY future[the mind man, give it bad news and sometimes it'll surprise you]) if I were not to fall in love then having them in my life is a very close 2nd.

See Florie and Cindi above, don't they LOOK loveable (hee hee hee) and SILLY! LOL, bet they didn't expect me to post THESE on my blog. hahaha :D

I'm bringing my camera every where now, get ready loved ones we WILL be taking pictures! I don't care if you look busted that day!! :D


Happy
Healthy
Enlightened
And
Love

maybe next time I'll post of picture of my proposed wedding dress and engagement ring LOL!!

Oh. and I'm also giving love to my lungs. my brain. my left boob. my body. my mind.

And I gotta believe, that my suffering is benefiting others in some way. Some how, some where, some way the discomfort I have is taking the pain away from someone else. IT IS, I can't live thinking that it is not SO I'm going to have faith that someone, somewhere, somehow is not in pain but would have been, not uncomfortable but could have been, happy and might not have been. I believe that, it hurts too much to not believe it,so it is true for me. It's the truth to me.

Thursday, July 21, 2011

MRI explains arm

It moved to my brain on the left side which explains why I have the strange nerve thing on my right arm. Well I have a regret. Why didn't I take vacation while I could? Well I will not be working for a while. I'm going to visit my brother and going to the Block Center in Chicago for a hopefully comprehensive assessment of my health. I'm going to a spa in Sedona, I want to treat my family to a vacation abroad preferably. Somewhere in there I'm going to be getting surgery or radiation but still no chemo. I'm willing to try anything BUT things that hurt me.


Happy
Healthy
Enlightened
And
Love

I'm gonna write it in every post. SAY IT WITH ME!! If you speak to me happy me believe it will happen.


Happy
Healthy
Enlightened
And
Love

MRI/ hematocrit

Uggg so scary. I had nightmares about getting it today so hopefully I can get through it.

My hematocrit level is 26.7 Fran says I need a blood transfusion. I looked it up, I'm anemic (ahhh that's why I've been craving ice lately). With all the greens I've had that's surprising but I'm gonna take an iron pill before I leave for the hospital.

The pain patch is working!! I feel like almost a normal person (except I can't breathe when I walk outside because of the intense humidity.)

Happy
Healthy
Enlightened
And
Love


Wish me luck

Wednesday, July 20, 2011

The positive

So on the positive side. I will definitely be able to get the doctor to sign the 6 month thing so I can get money to enjoy my end of life.
I'm going to turn the guest room into a suite with a Japanese ofuro! Yayy! I can't wait to soak in my tub - CLEAN! I'm going to go on vacation to sedona and yellowstone. i want to see an american onsen. I want to see the amazon. i want to go on meditation retreat. i don't know where else yet. I want to make this as much like a queen latifah movie as possible. i want to become an organ donor, how do I change that on my license?

OMG you should see my body, it is FINE. I hate to have to say it myself... well, no I don't but it is 6 pack city and little to no body fat. I guess that's what comes with organics and juicing. Fine, I say. Once the pain goes away then I'm gonna have fun fun fun until i die die die.

I'M gonna do a cartwheel even!

Waking up

I finally slept last night with no pain.

Only to wake up.

I hate waking up. Why can't I go instantly?? Why can't I go in my sleep? Why do I have to die so horribly? When I'm in pain, which is pretty much every waking moment and many sleepy moments too,I dream of ways I could die instantly
a car jacking
random gang shooting (what? I don't have to be in a gang, innocent people die in that)
a heart attack in my sleep
an aneurysm in my sleep

Instead I'm in pain, I walk up the stairs and its an effort to breathe. I hate this life now. I hate waking up.

I can't understand the point. Why am I being made to suffer? I'm not helping anyone by suffering I'm just making the last of what was a good life, horrible.

In the ER, the doctor said, come to the ER immediately if you can't breathe. I looked at him, I have lung cancer, I can't breathe well now. He's like if you're sitting and can't breathe. ?? Why the hell would I do that - so I can prolong this even MORE. Oh yeah, that's a great suggestion, let me just drown to death SLOWER. Lovely.

I said the mantra today (Happy, Healthy, Enlightened And Love), I don't believe it, but I said it.

You think it will work? It'll take a miracle.

Tuesday, July 19, 2011

Dead End

So the hospital was wrong about the approval, the insurance didn't deny me. I was in pain today though and nothing I take the hydrocodone, the oxycodone, the ibuprofen, nothing stopped the pain. The pain is constant it's not excrutiating but it is constantly there I can't get comfortable... I'm begging to die instantly NOT LIKE THIS but no one is listening to me. I know that I've done something really horrible in this or previous lives. I hope that this torcher will mean that my next life will be better.

The nutritionist says I should speak something positive so my body believes it - did I speak too negative and my body believes that??

I went to the ER today to get an x ray on my spine to figure out the issue with my arm being numb. No tumors there, but puffler's has grown. ARRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRGGGGGGGGGGGGGGGGGHHHHHHHHHH!

I'm at a dead end!!! What can I do?? Every turn I make in this - I have no mutation, chemo only worked once, no chemo has it growing. What can I do?? I can't even take away the pain of others by becoming a Buddha. I'm useless, I'm frustrated and I hate my life. I hate my life. I hate it. What can I do??

At the ER I thought about the positive things I want. I want to be happy, healthy, in love, and enlightened. Ebony says this is HEAL or HHEAL

Happy
Healthy
Enlightened
And
Love

Can I get them in this lifetime? It doesn't even seem like I can get even health now. well wish me luck sleeping

Insurance Denied

This morning Virginia Hospital Center called to tell me that my insurance denied covering my Cat scan. They denied the PET previously and had approved the CAT but now...

I have new lumps on my breast, I have this weird nerve thing happening with my arm, the pain has returned but I have been working. I have been paying into insurance and working and been a productive member of society. I feel like by denying it they are saying that I'm not - I'm a drag on the system, a dead weight (HA!), I'm the person the people who protest the medical reform are thinking of - let's get rid of those people who keep getting sick.

I kept the appointment. What can I do? I need to know if it's grown, I need to know if I have fluid that can be drained. ... I hope my doctor does sign my life insurance policy saying I have 6 months to live, if my insurance is going to already start denying procedures (even routine ones) I'm going to need the money...hell if they deny procedures I may only HAVE 6 months anyway. This time, if they don't approve it, I'll pay for it myself $5-6K in all. I guess I need to start liquidating assets...

Monday, July 11, 2011

POW

I'm a prisoner of war.

I was caught unexpectedly - at an innocuous enough place but it turned out to be a trap. Now I'm slowly being tortured. All day there is a pin in my back and in my chest underneath my breast - I can't remove it and it aches. At random times it digs deeper, 'how do they do that?'. They make it worse by letting me have "normal" days - I can work, I can play and I forget...then they will press hard on my lungs causing me to cough, lose my breathe, gag. They love working at night, while I try to sleep. No position is too comfortable either the pain will be gone and the coughing and phlegm back or the coughing is gone but the pain is back. I have to make a decision - in which position can I sleep better? The answer is none. They know this. There are no other prisoners in my prison - no sounds of others being put through this same torture. But when I work, in the distance I see others, they are being freed...when will that be me?

This was a bad week. The pain has come back and woke me up Tuesday night, I ended up driving around DC sleepy and in pain. I thought, maybe if my life were threatened I'd want to beat this more and not give in, not beg for this to be over. I spoke to my therapist about it and she said even people who really want to live wouldn't have made as many lifestyle changes as I have in the past 3 weeks so I guess the bad neighborhood idea isn't useful. Bad neighborhoods in DC are hard to find these days anyway.


Ups - This week was mostly downs but ups are
1. Dodgeball, the happy pill. I wish I had more things like this in my life or I could figure out how to harness my concentration in the same way to be able to forget the breathing, forget the pain.
2. I sent out an email for my friends to help and don't feel so in it by myself
3. The nutritionist, who is so positive that I'll get better. Where is she when I'm getting stabbed in the chest at 3 am?
4. I'm still able to do this diet thing, which is pretty impressive for someone who's never changed their diet ever
5. Prayers for World Peace sunday morning - I realize I need to go to more Buddhist events because they make me feel better.

Wednesday morning I went to acupuncture (thank goodness I had the prethought to schedule 2 sessions this week). When the needles are in, all the pain is gone and I can get a real sleep. I wish he could just come to my house right before bed, put the needles in and then take them out the next morning. After seeing him I took the day off and laid in the exact same position as I do when I'm there, hoping to channel that enough so I could go to sleep. It worked pretty well.
The Ulman Fund sponsored or told us about a pre-screening of the movie 50/50 about this young guy (well, about my age) diagnosed with cancer and given a 50 50 chance. It was good, I could relate. The Dali Lama was in town so afterwards Bob helped me try to find Stupa ear rings...after looking in all the booths, they probably just don't make them.

Today I went to the nutritionist who for homework wanted me to think of a mantra... on the other hand my therapist wanted me to think of something positive to come from the coughing and pain - the team tibet (puffler, me and lung) and turning into a Buddha apparently wasn't a good mantra ( it does work OK for when I'm in pain though)

So I'm still working on the mantra, she says it doesn't have to be something I believe right now but something I say until I believe it. This sounds logical to me.

Speaking of logic - doesn't puffler know that if he grows too much he'll kill both of us?He's not a very smart parasite, why can't we work together? Why can't we live together?

The medicine is kicking in now. 'Night

Sunday, July 10, 2011

Help and other stuff

On the 4th weekend my friend came into town and we went to the museums. I was like the old lady with a walker - if I walk VERY slowly up stairs it doesn't take my breathe away as much. What happened to being able to bike and run up and down the stairs 3x before I got out of breathe? What was the point of the chemo if I'm now right back where I started?? Even the pain has come back (granted a skipped a session of acupunture this week) but I'M TIRED.

I went to NC and stayed with Cindi this week and realized I missed the morning juice (it masks the taste of ALL the supplements and makes them easy to get down). Eating organic wasn't so hard in another location so if I had a portable juicer that would be perfect.

It was nice to visit Cindi and it was nice to get help on all the questions I've had. What is the Gerson method? Am I doing it with the stuff the nutritionist just gave me? Will it help puffler's or just other types of cancers? It was nice to have someone else do the researching for those. Having puffler's is like having a job - a REALLY horrible job that makes you miserable but if you quit, you die and not a quick death but a horrible, prolonged fit of coughing and gasping for breathe death. So I have this job I should be researching and buying stuff to improve my health and I'm not doing it well...I'm overwhelmed. I'm overwhelmed by the thought I have to put into meals, grocery shopping, excercises, bills, claim forms,will, financial stuff and even my house. Gosh if only someone else could call the exterminator, could look for a Green cleaning service, could call the plumber when there is a leak? If someone else could find the claim forms I need to submit. I thought about getting a personal assistant, but what could they do? They can't find the forms to put my IRA in my trust, can they?

Visiting Cindi made me realize I'm not asking any of my friends and family for help.
Except taking me to the doctor but I need a lot more than that. Right now, I'm alone.
And I know why I don't ask -
1.I don't want to burden people, they are busy and this thing could go on for a long time. I could be the burden friend for a long time
2.What can I ask them to do? Can they organize my puffler bills? I need to know if I've paid the deductible this year so I can stop getting bills.
3.I've never had this type of problem. I'm the person who sees the problem, OK let's solve it. Problem - Solution. I've also hated when people overly complain about a problem instead of doing something about it and now that's who I'm becoming but I can't find the solution. At Cindi's there was a bird that kept trying to get in through the glass window, he just couldn't understand why he couldn't just walk from the sill outside to the one inside so he'd fly up and down and up and down confused. That's what I feel like - I'm confused, what do I do in this situation? HOW CAN I BREATHE!!

The nutritionist wanted me to come up with a mantra - I think the best is
Team Tibet - puffler, lung and me - we have to work together. I started seeing a therapist and she wanted me to try to think of something positive when I have the coughing fits or am out of breath from just walking. I don't know yet - those are my lowest of lows. Cindi suggested that my suffering help all living beings...but I'm not a Buddha, will that be true? Can my suffering prevent anyone else's suffering? If that is true, then I need to believe it. If I believe it that would be good to think of.

What kind of Buddhist am I anyway? I keep thinking, I'm not doing enough. I'm just doing my daily meditation ( which I didn't do while at Cindi's but it was just a few days) but still what would Buddha do? He probably would have a calm mind. How do I get that calm mind when I can't breathe? You know the irony is that the basic meditation is a breathing meditation - which is the hardest thing for me now. To concentrate on my breath often starts a coughing fit just through concentrating on it....
I was up early this morning - at 2 because I started coughing and the pain kept me up a little when I wrote this.

This morning I went to Prayers for World Peace and couldn't meditate on the breathe so I pictured myself as Vajrayogini (my image is usually sitting on a hill like one out of the sound of music with birds chirping) Anyway I thought I can't take away other's pain as I am but I CAN as a Buddha and I do have HYT empowerment so that's what I'm going to do. When I start coughing uncontrollably or walking and can't breathe well, or feel the pain in my chest and back I'm going to turn into a Buddha and THEN take away others' pain, and feel the happiness from helping others.

Yesterday, Cindi and I researched the Block Center which Suzanne recommended and that looked promising, I'll call them tomorrow.

Tuesday, June 28, 2011

Surgery day

I've been renovating my basement that my sister is currently renting. I employed her friend, and it's been strange - this is the first time, since owning my house that a contractor asked my renter, not me, what is wanted. My sister thinks that it's about cost, but it's not that, it's that someone is making choices about my house without me. It makes me feel like I'm fast to the grave... I'm getting surgery today, a simple port removal, but surgery's could always put you fast in the grave so maybe today will be my last.

If that's the case I'm pretty prepared, I have a will and life insurance. I've received all the empowerments I wanted to - HYT, Matreiya, Avoliteshevara, Medicine Buddha, plus some more. I've lived the life taking chances and risks and adventures and I've loved it. I've made the most awesome friends that I hope to see my next life time and have had the good fortune of being in a loving family. If today is my last day then I leave with no regrets about how things could have been different if only I had done this and that - I'm happy about that.

------------

So this wasn't my last day! I got the same doctor (or physician assistant) as I got the last time, Jillian, whose sister plays roller derby. Sweet! It took all day. I was supposed to get there at 8:30 to start the surgery at 9:30. I was on time but my surgery didn't begin until 11:15 and we didn't get out of Hopkins until 2:30 - wow, glad I took the whole day off today. Afterwards I went to Mom's organic to continue my new eating regime.

Saturday, June 25, 2011

Healthy eating starts now?

So I saw a nutritionist who walked me through what I need to do and eat and went with me to the grocery store to buy all organic foods.

Thursday night my friend kindly bought me a juicer so that I could begin Friday. And so I did 'ish' I took the morning supplements and drank the glass of water before meditating. Then I begin making the morning juice and to my surprise and relief,the juice was decent! The wall came with the amount of juice. I actually don't eat or drink that much and the recipe makes 2 glasses of juice, I could only get down 1.5 and felt sooooo stuffed! So stuffed that I couldn't do the next step which was making breakfast and the green juice, I wasn't hungry again until 1. So then I had a baked (organic) sweet potato with raw butter(which is really yummy) and steamed broccoli with sea salt (the kind that has specs in it, go figure). The nutritionist by the way is very good, really positive and full of information.

I have been purging EVERYTHING in my house that I use on me - laundry detergent (I need less chemically one), lotion, toothpaste (I now have Mercola's which took me a couple of days to get used to not having a sweet toothpaste, but actually my mouth feels fresher after), produce, seasonings, oils, bath soap, deodorant, storage containers (no more plastic),house cleaners ShWooo! is anyone else tired? I certainly am.

The nutritionist also wants me to be in the sun as naked as possible for 20 minutes everyday and walk for 20 min everyday (can these not be combined? Once this damn port is out I'm gonna be in tanks tops and shorts, isn't that just like a swimsuit...ish?) Castor oil pads, and coffee enemas, air purifier... HEY that's a good idea why didn't the doctor suggest that? I have a BREATHING issue, maybe I should purify the air that I breathe. Why didn't I think of that? Also a water purifier for the whole house so I stay away from chlorine and floride as much as I can. Gosh there doesn't seem to be enough time in the day, no wonder why she said this was going to be my new full time job.

Today I tried the green juice where the morning juice was decent this one is NOT - yuck! I think if I take the cayenne pepper out of the concoction I can get it down. I love pepper, I put tons of it on everything,but drinking it?


I still need to figure out the recipes and what I can eat, I think what I can't eat I've got down... mostly.

Physically? I go up and down the stairs 4 times in the sun and I'm beat. I'm still coughing, not as often but everyday and sometimes uncontrollably so that driving becomes a dangerous endeavor - I don't know when a coughing fit that blinds me (only because my head is moving so much with the cough it's hard to concentrate on vision) is going to occur. And those coughing fits give me headaches, so I hope this organic stuff helps the symptoms.

Wednesday, June 22, 2011

p.s.

At the concert one woman tapped me on the back just to say she loved my energy. HA! Yeah I was jumping up and down, dancing,shouting and singing at the U2 concert. YEAH it was some effort but dammit puffler's is not going to make me stop being me. Jumping up and down and cartwheels - oh yeah! :D

Atom impact

Today or last night I went to the U2 concert which was totally awesome. But one thing I got from the concert that I need to remember. I am like an atom
or a second
or a cell
or a thread
or an idea
or a spark
or a fragment
or a thumb
or the number one

None of those things by themselves are needed or make much of an impact on the world. They are a piece without which the impact is lessened. So the little volunteer work I do, or the smile I give, or the positive words I say... they are so small, like a cell needed by a body. It just takes 1.

Don't you just love U2? :D

Feeling Good

Thursday after dodgeball a guy asked jokingly if I had lung cancer. And I answered "I do actually" expecting the talk, but he and the other guy thought I was joking! I thought was funny, just because I have my hair, it must not be true. :)

So I'm still working on faith. I went to a therapist yesterday just to make sure I stay positive. For 7 days I've felt positive with only 1 hiccup when I was coughing one night and couldn't get to sleep.

I went white water rafting on Sunday - it was the spur of the moment trip I just couldn't get people organized to go and I didn't want to miss out on going as my potentially last summer as Andrea.

I went to a Personal trainer/Nutritionist on Monday and will go again on Thursday, he was So positive. I went so that I could eat better in order to stop the mucus, decrease the cough, and increase the oxygen I'm receiving, but he was like you're not going to die on my watch! Wow, even the doctors aren't that positive.

He had me watch 2 movies Food Matters which was really interesting and 'The Beautiful Truth' which was like an infomercial for the Gerson method. They say that they can cure puffler's and chronic diseases by eating differently. Sweet, I'll try that, cause I sure as hell am not doing chemo again.

I get the port taken out on Tuesday. DID YOU HEAR ME? I GET THE PORT TAKEN OUT ON TUESDAY!!!!!!
WOOO HOOO!


This food thing is going to be challenging so I have to keep in mind that at least it's not chemo,
at least I'm not passing out,
at least I'm not throwing up,
at least I'm not feeling queasy,
at least I'm not weak and knowing you're killing your good cells,
at least I'm not turning different colors,
at least my bones don't hurt,
at least I'm not feeling the emotional agony of being disabled from chemo,
at least I'm not poisoning yourself and torchering yourself to death - the puffler's can do that all by itself it really doesn't need help from me or the doctors.

This morning I meditated on faith, what do I have faith in now just without effort? I have faith that my house will be standing when I return from class.
I have faith that my car will be where I parked it last.
I have faith that I'll wake up tomorrow, that there will BE a tomorrow.

Why are those faiths so easy? Yesterday my sister's car was stolen and a few months ago my neighbor's daughter died in her sleep. So again why are those faiths so easy?

I don't know, but my meditation today taught me that faith is only a now thing. Meaning sometimes I don't have faith because I'm thinking I won't have faith in the future or didn't have it in the past and it trips up what's happening NOW.

Do you know what I'm doing now? Well you won't by the time you read this but right now I'm typing. I haven't had anything to drink or eat so I'm not coughing. I feel no pain. I'm sitting on my bed with my legs crossed and the fan blowing and writing this blog. I feel great. Puffler's doesn't exist right now, because I can't see it or feel it. I can breathe and the sun is shining brightly into my room from my sun room. I feel great.

Friday, June 17, 2011

Refusenik

Tonight I watched a horrible movie, the mechanic, with "handsome Rob" but watching it I realized this is the first day i didn't want to have an accident and die.

I called Hopkins and will schedule to get this dang port removed and I feel good about my decision to not do anymore chemo, no radiation either, too many side effects. I read this article in Time magazine and there is a name for people like me "Refusenik". I'm a Refusenik and proud of it, this article said refusal of treatment shortened life spans by only 9 months (granted this is for all cancers, not just pufflers) but still. You read it before and you'll read it again - who takes medicine that makes them feel really bad, only to not be cured? It's almost hilarious really. Anyway I feel great, I mean I'm coughing a lot and I can't breathe that well, but today the heart palpitations lessened and the pain is gone again so either acupuncture or the tumor moved to a better spot. Anyway much better to feel good and coughing, than bad and queasy :)

I'm so excited to get this port out! It itches but it grosses me out to touch it so the only way I scratch it is to turn the shower head on it. I'm still sending love to my lungs and next week I'll see a personal trainer (not for the exercise part but for the eating better part). Oh, I read somewhere that a guy was meditating to send love to every one's puffler's. Now I really like THAT idea, so when I'm sending love to my lungs I'll send love to others' too.

Wednesday, June 15, 2011

Faith and Miracles

Or maybe just faith in miracles

today I gave my lungs love and then looked up miracles of people surviving stage 4. granted those people did a LOT of stuff that I am unwilling to do. I don't want to be sick and miserable for a 50/50 chance.

western medicine - it hurts, you feel sick AND it has only a 50 50 chance of working
eastern medicine - doesn't hurt, you don't feel sick AND it has only a 50 50 chance of working

I know, my friend says there are tons of people in Africa with HIV who have faith in the local doctors instead of Western medicine and suffer until they die. BUT my choices are suffer until a die if I use WESTERN medicine.

So I'm working on faith, faith that loving my lungs will help. Faith that Geshela and Buddha will help, faith that changing my eating habits, acupuncture, yoga and a peaceful mind will help.

faith in miracles - I like that better than hopelessness, I'm gonna try that instead. Maybe I will die... hee hee ok I'm definitely going to die but isn't hope, happiness, love, faith better than despair, loneliness, and anger.

So my first challenge came today when I was walking with my friend - coughing and having a tough time breathing - I had to give love to my lungs and not get angry that while I look like I can run a mile with no problem, currently, I cannot.

When I got back I listened to a lesson just as the background to what I was doing, but still just hearing snippets was enough to make me feel positive.

Tuesday, June 14, 2011

I am sound - Heart of Wisdom

Tonight was much better than last night. I went to FP class and we finished Heart of Wisdom.

There were 2 important things I got from class
at the end Dharmodgata says " Where does the sound of a lute come from and where does it go? Does it come from the strings, from within the lute, from the fingers of the player, from his effort to play or elsewhere? And when the sound has stopped, where does it go?"

To continue - how do you know it exists, you can't see it, touch it or smell it. That's what everything is, what I am, sound. I have to meditate on that because it answers who am I in a more real way that what I can conceive now. And a less depressing way. Sound exists and doesn't exist, I don't know where it comes from or where it goes but that doesn't scare me. I don't know where I came from, yeah you could say my mom and dad but that's just my body - where did I come from? And where am I going when I die? The same place that sound goes? I would say yes. So I am sound..

2. In this last chapter Geshela speaks of the miracle powers that Lamas in Tibet performed and in class Andy asked how did they know they could do that, I keep thinking I'll get to this realization and then this one and then BAM! (I'm paraphrasing, he didn't say BAM! :) ) Anyway Varahi (my teacher) said that faith was a HUGE part of it. Having faith that you can do these miracle powers gets you almost all the way there. Isn't that something? So I need to have faith in mantras and faith in my practice and it's ability to help me - whether that's by healing my body, or my mind. I have to remember Geshela said he would say prayers for me, I've been thinking that means that I'll have a good rebirth, but I guess it could mean that I could have a good rest of my life too. In Buddhism terms it is better to live longer so that I have a better opportunity to become a Buddha. BTW did you know that Geshela was a doctor in Tibet? He said prayers for people to heal! I didn't know that!


Oh another thing that helped was the part about mara's. Buddha had mara's tempting him to try and disrupt his concentration but his meditation on love made him able to withstand the temptation. That had me thinking about 'what the bleep do we know' this film I've watched, in it I think Japanese scientist did an experiment on freezing water. Some cups they would put the word love, happiness, hope and the others hate, anger, despair and the ones with the positive words formed perfect crystals where as the ones with the negative words did not. So I was thinking I should put love on my lungs. For the first time, I thought about getting a tattoo, a bar code with each line being love repeated over and over again.

Tonight I said it to my lungs as if they were a baby growing in me - love, love,love, love, love, love, love. Do you hear me lungs?! love, love,love, love, love, love, love.

Monday, June 13, 2011

Fighting Alternate

This weekend started so well I was feeling so positive. I had dinner with Yunki, got my hair done, nails done, played dodgeball and then Sunday rolled around and I wanted to bike to volleyball. And while biking the same ride I'd done just a few weeks ago, I could breathe less. I wanted to go to the gay pride festival afterwards and got all the way to 14th street and realized it was too hard I couldn't make it to the Washington Monument AND bike home so I turned around. It all went down hill from there, it put my in a funk that turned me into a foul mess last night and into today.

I hate this new person I am. I hate her. She's weak and cries often - today I freakin cried on the acupuncture table, and in yoga for God's sake. cry cry cry. and so self centered, all I can think about is me - me dying, me coughing, me breathing, me stiff, me in pain, me me me. I HATE her. I feel like I should get in the boxing ring and fight this person. WHO ARE YOU??? Why don't you do something for someone else for a change?? You are wasting your life away! You are the alternate Andrea and I hope you die.

Wednesday, June 8, 2011

I'm a Survivor

(yeah, I was thinking about the song when I wrote that title, you can hum it, it's cool :D)

Today, I woke up happy, I meditated on liberation in the morning which made me happier.

I bought "Crazy Sexy Cancer Tips" and skimmed some of that book today that book suggested 3 things that resonated with me:
1. I should be doing what I want every day
2. I get to define what "Survivor" means to me/for me
3. Go to a place that makes you happy and calm when you need a break

So because of 1 and 3, I took a lunch break and went to the National Arboretum, which is this beautiful garden one of the secret gems of DC. When I go there it makes me think about nature and life. Humans think that we aren't part of nature but just like every other being we live and we die - in order to live, we must also die. So no matter what I believe in - reincarnation, heaven/hell, that there is nothing after death, I am still going to die - just like birds, flowers, roaches, dolphins. So I'm going to die, since I can't stop that the thing that I CAN control is how I live,I can't even control how I die, only how I live.

So I decided to define Survivor in a different way, for me.

Survivor - someone who has faced their scariest nightmare and became kinder, wiser and stronger for it. Someone who faces death and decides how they are going to live life - be it taking every medication and procedure known to man, or deciding to live life procedure free.

Today a colleague (SAS) who I don't know called me during my lunch break ranting about a customer's case despite the fact I told her I was at lunch and didn't have a computer with me. I got off the phone chuckling thinking, how unimportant that conversation was. 2 minutes later I get a call from the hospital telling me that my insurance didn't approve my next pet scan. Is that not totally ironic? There are problems and there are Problems. Too funny
-------

I'm so glad I've decided not to do maintenance chemo and I'll probably repeat that again and again. I'm glad I'm not continuing to destroy the rest of my body, just to kill off a mutation. hmm isn't that funny, me the sci-fi/fantasy junkie who kinda wished to be an X-man, when I was younger (Rogue, of course), am now a mutant!

Do I think I'll die from puffler's? Probably, but I don't know for sure, until then I know there will be ups and downs. I'm still getting queasy in the afternoons, I'm still feeling a little pain when I breathe deep and I'm coughing some but today was a good day an up and I'm going to revel in the ups.

On Saturday my friend/colleague was in town and she gave me this article about optimism and how people despite the odds believe that the future will be positive - the take the negative and make it lemonade in order to survive. I believe that a positive mind can help, but... as I was telling my friends earlier today - don't you wish you can take a pill or just command yourself to be happy and instantly you are? ahhh the quick fix, I'm so American :)

Tuesday, June 7, 2011

YACS...

Yesterday and today I felt queasy all day and last night I threw up - it was worse than a chemo week because I had actually eaten. Nasty so today I didn't eat much.

This morning during meditation I realized I need to get ready for my next life, and the life after that. I need to purify my negative karma so that my next life can be better than this one. I was so proud of myself yesterday because a customer I spoke with was so irate and condescending because the previous representative was incapable of solving his issue. The old me would have sounded polite but inside would have been boiling over, but yesterday I was like 'This man is being mean to me and what difference does it make when I'm dead I won't even care, so why care now?' I was so calm, so not frustrated, it felt really good.

I'm still coughing, that started up after the last round of chemo, and now when I breathe deeply I feel some mild pain. The doctor said last week when I thought that I could breathe easier after this round, that the tumor could have moved to expose a valve that had previously been blocked, so since today would have been maintenance chemo, I doubt that it's growing back already, it's more likely that the tumor moved to a place that causes pain when I breathe deeply. Today, the 29th and the 20th would have been my maintenance chemo days - the therapist asked if I was comfortable with my decision and that is still a resounding YES. Part of me feels weak and cowardly, I'm just not strong enough to go through the pain, I don't want to live as much as some others and I'm sorry for that... I'm sorry for my family and friends that I'm not stronger and braver. There can be positives for them... one of the ladies at YACS said that when her friend got pregnant she thought she might die and be her baby which is exactly what I've been thinking about my friend who's going through a unsuccessful reproductive period, maybe her body is waiting to reincarnate me! :D That would be a positive. Maybe one of my friends will be an inspirational speaker, maybe my friends will volunteer even more or found an organization that helps ANYONE in remembrence of me (but don't name it after me, that's silly, no one needs to remember me THAT much, though I'll be dead and won't care anyway so do what you will)


Today I went to a 20 min session with a therapist to see if we're a good fit. I think she is so I'll email her to schedule a real session next week. With her I want to work on being positive while I'm still living. Yesterday I felt so much despair, I still awake hoping that I die instantly now, so it would be nice to not think that everyday especially when physically I feel like myself, pretty much.

Today I went to my first YACS DC (Young adults with cancer) meeting at Tryst, it was nice. One of the women said I can't control any of it so I'm not going to worry about it, I'm less stressed than I was before when I used to work 70 hours a week. That relaxed me, I can't control it so don't worry. She also said 'you know I'm fortunate, I've gotten to live to be 25 some people don't make it that far, some kids or babies die and I've made it to adulthood.'

I'm fortunate too - I achieved most of my dreams by the time I was 25, these last 11 years have just been extra, just icing... let's see

I learned Japanese and held some deep conversations with people in Japanese
I've met Wonderful random people abroad -
the security guard at the museum in Pueblo Mexico, the shaman in the little town outside of Mexico city,
the Greek man in the Phillipines who told wonderful stories of the healer he had traveled to see work miracles;
the British man who lived in Hong Kong and took Sabita and I to a club/bar where we danced on the tables;
Vanessa, the beautiful little girl in Brazil who was so excited that our skin was "same same";
the 2 year old boy in Brazil who laughed and laughed, rolling on the ground every time we spoke English;
my favorite Japanese student - singing her song in English and watching while the other students were in awe of her pronunciation;
the HIV positive women in Tanzania, so strong and positive despite the circumstances of their lives;
my home stay parents who were just like a family to me who I love even though I haven't spoken to them in years;
the random Japanese business man who led me to the Opera house in Osaka when I was completely lost;
the young insomniac in Mexico who thought I had weed and kept me talking late into the night, and left a rose on my bed when I woke up since he couldn't sleep;
the villagers in Kon Tum who's children followed me around laughing, since they had never seen a person with such brown skin.

I'm so fortunate to have had those experiences and to have met those random people.

Thursday, June 2, 2011

Living life day 1

Today I worked and was a productive member of society I also had a lunch date (which was WAAAAY boring, so boring that I felt like I was on a dating show and there was a sound track in the background emphasizing my boredom) and construction started on my basement.

Also last night as I was searching for things to join I found two positive things. One women has been 4 years without treatment after being in stage 4 non small cell and another guy in the UK has been 11 years! and he was 50 when it was diagnosed so I'm very very pleased with my decision, granted it could grow and I definitely see the ax hanging over my head every day BUT it may not too.

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