Happiness/Freedom

Collapsed Lung

2011-08-20T19:34:00.000-07:00

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?

my feet don't hurt

2011-08-17T19:01:00.000-07:00

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.

better

2011-08-16T03:32:00.001-07:00

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

pain

2011-08-14T01:48:00.000-07:00

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?

Karma, Acupuncture, focus... and anger

2011-08-12T21:40:00.000-07:00

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!

Is it me?

2011-08-10T22:18:00.000-07:00

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

I'm alive and I can move

2011-08-09T20:18:00.001-07:00

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

Ok one last thing

2011-08-05T05:35:00.000-07:00

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.

The Last Supper

2011-08-04T23:47:00.000-07:00

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!

cooking class

2011-08-02T22:06:00.000-07:00

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

2011-08-02T03:35:00.000-07:00

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.

Druggie

2011-07-30T20:31:00.000-07:00

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!

more of the same

2011-07-29T20:52:00.000-07:00

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.

Wisconsin - day with the fam

2011-07-28T18:28:00.000-07:00

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.

Dying to Christmas

2011-07-27T18:14:00.001-07:00

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

Refusenik no more?

2011-07-26T19:43:00.000-07:00

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.

The H in HHEAL

2011-07-24T19:39:00.001-07:00

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!

HHEAL

2011-07-22T23:00:00.000-07:00

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.

MRI explains arm

2011-07-21T15:36:00.000-07:00

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

2011-07-21T07:33:00.001-07:00

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

The positive

2011-07-20T08:41:00.001-07:00

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

2011-07-20T05:45:00.000-07:00

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.

Dead End

2011-07-19T20:49:00.000-07:00

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

2011-07-19T06:20:00.000-07:00

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...

POW

2011-07-11T16:19:00.000-07:00

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

Help and other stuff

2011-07-10T00:17:00.000-07:00

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.

Surgery day

2011-06-28T03:26:00.001-07:00

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.

Healthy eating starts now?

2011-06-25T20:40:00.000-07:00

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.

p.s.

2011-06-22T22:40:00.001-07:00

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

2011-06-22T22:30:00.000-07:00

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

2011-06-22T04:52:00.000-07:00

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.

Refusenik

2011-06-17T22:17:00.000-07:00

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.

Faith and Miracles

2011-06-15T19:30:00.000-07:00

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.

I am sound - Heart of Wisdom

2011-06-14T20:51:00.000-07:00

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.

Fighting Alternate

2011-06-13T19:55:00.000-07:00

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.

I'm a Survivor

2011-06-08T19:46:00.001-07:00

(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 :)

YACS...

2011-06-07T21:10:00.000-07:00

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.

Living life day 1

2011-06-02T18:28:00.001-07:00

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.

No more chemo!!!!!!!!

2011-05-31T17:18:00.000-07:00

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)

WE WOOOOOOOOOOONNN!!!!

2011-05-26T19:22:00.001-07:00

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.

I don't want to do this anymore

2011-05-22T09:44:00.000-07:00

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

Chemo 4 - Day 2 missed dogeball

2011-05-19T18:12:00.000-07:00

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?

Chemo 4 - Day 1

2011-05-18T17:55:00.000-07:00

Monday night I had dreams of passing out during dodgeball because of chemo and I saw a mouse.(but was able to get him out without killing him! :)) Needless to say I didn't sleep well before getting chemo.

Yesterday I say the nurse practitioner before starting and she explained the size of my tumor and what the report says. The tumor DID decrease by about 40/50% after the first 2 cycles so let's hope for the same these next two.

My white blood cell counts were too low for the type of chemo I was getting but I wasn't at the risk of infection so they gave me chemo anyway and prescribed a shot for me to get the next day to boost my wbc production. Bob administered that today ( he did good, it was just a prick, maybe Bob could have a side job doing that :) ) The side effects of this drug are all the same as the chemo except for bone pain. Let's hope that doesn't happen, the good thing is I'm to sleepy to dream about it.

Today I slept all day, except to go get my shot. I was able to get down my required 1 liter of fluids - which included 2 bottles of water and 2 ensures. Water didn't taste bad like it did the previous times so the first bottle I chugged wanting to get it down just in case that changed.

So I'm still just sleepy, hopefully I can make dodgeball - its a double header and I see my lawyer right before that.

I've also decided to renovate my basement - its something I've wanted to do and it helps me think of planning for life, not for death. But it's at least 4 weeks so 4 weeks of sharing the bathroom with my sister... my bathroom that only has a bathtub. It'll be a challenge but it'll look nice when it's done. My neighbor, William, is an architect and had his own business doing this so he's giving us a discount on the job. Very nice.

Normal Days

2011-05-16T04:07:00.001-07:00

This weekend was great. Saturday was rainy so I went to visit Wayne and Aletha, who of course cooked for us. Crabs yummmm! Then on Saturday the weather was beautiful so I got to bike, play volleyball, go on a date, do yoga AND join my neighborhood's happy hour. Shwoo, what a wonderful day! The yoga this time (I think I breathed deeper) caused the cough, so that will be the test for tomorrow's round of chemo, if it happens.

I also have to call short term disability, as they have overpaid me! It's very crazy - on one hand I'm a little apprehensive about spending money because the insurance bills or crazy on the other I don't want to take advantage of the system or anyone. The bills are still coming in for things that occurred in February (for the same surgery), I've paid over $1000 with insurance, which is weird to me, because if I'm paying this much what's the point of insurance. Let's just think I've paid into insurance for about 13 years, if I had just saved the money that went to insurance (contributions from my company included) I think I would have collected enough to NOT pay anything thus far. Seems reasonable no? And while I can afford it, I just don't know what they are going to charge me for next, and when they are going to stop charging me for the same treatment. It assists in making things less normal as it's harder to plan. I know, you can't plan for something that doesn't exist, but you know what I mean.

But I decided to make the absolute most of my normal days, and live it up when I'm feeling good. I avoid thinking about chemo as much as possible and anything having to do with this disease, just pretend nothing has changed as much as I can... except that now I'm happier about smaller things.

TMI ALERT!

TMI ALERT!

One thing that is not normal for me but VERY good, is my cycle has now shortened in days (from 7 to 4) and decreased in intensity, now it has BECOME normal, now I have a normal woman's cycle. Which is totally awesome and the ONLY good thing about chemo.

Biking, Volleyball and Yoga I can do it all

2011-05-08T20:32:00.000-07:00

Today felt like a normal spring day. I played for 40 min, played volleyball for 2 hours, and did yoga for 1 and only about 10 coughs today.

I have to stop pretending that I can predict the future and plan as if I'm going to live a cancer free life. Hell, I had it a year ago and was planning for the future so I gotta remember that, even when I'm sick. So I'm back to adopting a dog, not fostering, planning some trips abroad, I'm still going to do some adventure sports because hell you only live once... and maybe I won't worry so much about trying to help more people, I mean I'll still volunteer but maybe I won't get an epiphany on how to make the most people happy maybe I'll just try to help as much as I can even if it's only a few people.

Today, I was so happy I thanked the Buddhas all day. Oh, and after playing 2 hours of fully ball, on less lung capacity than a healthy person, I STILL passed 3 bikers going up a hill. Oh yeah, rockin'!

Statistics

2011-05-07T16:45:00.000-07:00

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

2011-05-07T01:39:00.000-07:00

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

I'M BACK!

2011-05-05T20:28:00.000-07:00

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

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

can't sleep

2011-05-04T21:57:00.000-07:00

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

sadness

2011-05-03T21:33:00.000-07:00

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

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

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

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

ER

2011-05-01T06:12:00.000-07:00

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

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

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

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

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

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

Chemo 3/ day 1

2011-04-27T19:43:00.000-07:00

Chemo day was like the ones prior - fun. This time Bob went with me and we talked and watched 'Serenity' good movie if you like scifi... with a western twist. I did feel a little dizzy from one of the protector medicines for a while and I was extremely tired this time and fell asleep at 8:30.

Today I was able to drink more than usual but still not hungry. It still strikes me as weird that I don't want to eat the very next day. I went to the acupuncturist, who said he'd try to help with my appetite - I didn't expect it to work immediately... I think part of it is caused by fatigue - it takes energy to eat just like it does talking on the phone, and I don't have that much right now. But dodgeball is tomorrow so hopefully I'll have enough for the game.

Jumping up and down

2011-04-24T18:43:00.000-07:00

So this weekend I was jumping up and down and cartwheels happy.

I went to a dog adoption fair and the animal shelter to see if I could find a good fit. It's hard to do a search via pet finder because really I just want a carbon copy of Jethro's personality, my favorite dog at the Oakland shelter. He wasn't a beautiful dog to me, I certainly wouldn't have picked him out in a line up but what a great personality! So I didn't find a match this time but that's OK because I want to wait until the maintenance starts anyway.

After that I played biked to Adam's Morgan to play dodgeball for 2 hours and then it was so beautiful just biked around for an hour or so. I didn't start coughing until an hour after that. So I think my test now is to exercise for a long amount of time and then see. Also now I can see that my lung capacity isn't what I should be. If only I had known... I remember last year in the summer I was feeling that my endurance was horrible and thought it was strange because I had been hard core working out 3 times a week at Crossfit. I thought it was just my sprinter lungs holding me back.

Gosh, I just don't want this to happen to anyone else when it's so preventable. I keep thinking back to when I had chest pains in California and went to the doctor - could that have been when it was starting? If they had given my a catscan 4 years ago, could this have all been prevented? Oprah had this woman on her show that is the author of "Crazy, Sexy Cancer". Oprah asked her do you ever ask why me? and she answered "why not me?". that's not how i feel, i feel like yes, dammit, why me? I have not picked up a cigarette, dubbie (i don't even know how to spell it), or any smoked substance in my life. maybe if i had this somewhere else in my body but yes, why me? but since it's happened and I can't change it. I can help change it for someone else I'm sure.

I keep thinking how would I have considered getting a cat scan? When I worked for Avendra my boss said she went to a dermatologist about skin cancer and I should get it checked out. I figured it was kind of a long shot, I mean, have you seen me, I've got TONS of protection with my brown skin. BUT despite that, I did go and get my skin checked. For me, that's how it would have to come. I keep thinking I should write Oprah and ask her to publicize people with puffler's in the lungs and tell them to request cat scans, but that wouldn't have helped me because I never watched Oprah. Commercials about puffler's and medicine and insurance, were just blah blah blah to me as far as my own health was concerned. Florie told me about Lance Armstrong having this and seriously it was like it was the first time I heard it. So basically my friends would have had to tell me, I wouldn't have listened to my family (they still send me forwards about watching out for the man who gives you needles in grocery bags, so that you trip and fall on them when you buy oranges for less than 50 cents - and other ridiculous things). And it couldn't have been sent with a forward either because I automatically delete those. Lan told me I should have a fire ladder, and I do (never used it, still dusty in the box, but I have it, and it's in a place where I could use it if I needed to). I always get tested for HIV... I guess that's part of the problem, there is no simple blood test for this. But seriously, a cat scan is not like a pet scan, but you can still see if there is anything suspicious. So I guess what I'm saying is, especially for young adults (since apparently 70,000 Americans between 15-40 are diagnosed with cancer each year. ), tell your friends to request a cat scan. If the doctor doesn't suggest one, then lie and tell him/her that your mom, dad, friend, sister, aunt, cousin, dog, cat has puffler's and since it runs in the family, you just want to be sure. Gosh, if I had known to ask for a cat scan for the pain in my chest this could have been caught in stage 3 or 2 and I'd have had one surgery with a scar on my side instead of the scarab on chest. I'll keep thinking about other ways I would have acted earlier, it would be great if just one person gets surgery and is Cured (seriously that's what the doctor said stage 2 is curable!) rather than have to go through this crap that I'm going through.

---

So my other thing is I have to get over my anger with smokers. It's going to be a work in progress but I decided I have one friend, Carisa, who used to smoke and I met her when she still smoked. She is going to be my sample smoker because she is a very kind person and I know she would not intentionally harm anyone. She is a little different because even when she smoked she was conscious of non- smokers, moving away from them, or fanning the air. So she is going to be my sample smoker so that I can work on getting rid of my anger towards strangers who smoke.

Just testing

2011-04-21T19:22:00.001-07:00

So today I woke up at 6:30 and went for a run. I went around the blocks and back up the 2nd street hill (which is hard on with total lung capacity, in fact I later saw a biker walk his bike up half of it LAME). Anyway I was able to make it up the hill without coughing but Very winded so I walked a block and then ran another 10 minutes down and back up the other side of the hill.

Basically, all is well. Jennifer M. came over this afternoon and saw my scans so now it's not just the Andrea 25, she agrees there has been significant decrease. OK bring on the chemo (who ever would have thought I'd say that) let's see this bad boy get LOWER!

Chemo day? Nope

2011-04-19T19:48:00.000-07:00

It wasn't meant to be today. I forgot to take the Dex yesterday. Bob and I got caught in traffic and were an hour late. Hopkins was an hour late. And finally my white blood cell count was 580 and it needs to be above 1000 to get chemo. It's strange to me that it went down from last week - the lowest its been since I started so next week I go back and we'll see if I get it or not.

Who am I? part 1

2011-04-18T21:27:00.000-07:00

I meditated on emptiness this morning. Meditated on who I am, how I exist and then on NPR they talk about the book "Shadows Bright as Glass" where this guy who had a stroke changed drastically BUT remembered who he used to be. The book is the exploration into who we really are. Oh, yeah book club book!

Incidentally, and I do not say this flippantly, birth is a terminal disease.

2011-04-17T09:23:00.000-07:00

Sunday.

I woke up happy it's beautiful out and I stayed up late last night researching support groups, what I have, what I need to do. I learned that I do have it better than some - the fact that my fatigue is not as bad as others (I can get out of bed, I don't feel bad and tired, just tired); and my pain is gone is already a plus. So now I'll look for some alternative treatments and also some adventures.

I have never really been afraid of much as far as experiences go, but now, what have I got to lose?! Not a damn thing so watch out because this ride is about to get faster! AND did I tell you I got my period today - menopause my ass HA! You know what? No one knows much about puffler's - no one knows how I got mine, and no one knows how it'll go - people can tell me what they think will work for me, but I've gotta decide what I'm going to do and what I'm not because that is what life's about.

So today I won my battle with my mind. YES! Today I am happy, so stuff it mind! Today when I meditated I imagined Avalokiteshvara smiling at me saying "Yes, you beat it!" because that's what this is, this is NOT. NOT a fight with puffler's, I am not fighting with puffler's. I am fighting with my mind.
---------------
Monday

I learned some really important things from my 5 days of wallow wallow, sadness, woe is me, anger anger, mad as hell, wallow wallow.

1. Sadness, anger, depression and worry feel worse than in December and January when I was in the most pain, tired and coughing all the time. So my mind controls everything

2. Desire. Have you noticed that when you are sad for longer than a day, you have extended it on purpose? Tuesday was a shock and I was sad. Friday at the party I was shocked and mad but all those times in between? I felt like I COULD control it but my desire was to wallow wallow, sadness, woe is me, anger anger, mad as hell, wallow wallow. I could have tried smiling like I did in traffic, but I didn't. I could have listened to my parents positive words of encouragement, but I didn't. Why?
I don't know, why would I want to be sad? What if I had died with an angry mind and was reincarnated as a serial killer...who smokes (hee hee hee, I had to add that :D), that's not the next life I want. But I did it anyway. I need to have another sign on my wall to remind me, the next time. I don't know what it should say yet but I need something that will pull me out of that desire.

3. Number 3 is very important. The future does not exist. Let me repeat that. The future does not exist. It is a fantasy as much as dragons, magic and witches. If the future was my finish line, I'd never make it there, it will move away from me all the time. Maybe that's the sign I should post. I'm all worried about something that does not exist. Now I do have puffler's, but I'm not in pain, I can breathe, I can bike, and I can play 2 HOURS of dodgeball without coughing (coughing is my sign - the sign that my lungs are trying to get more air).

Today I went to the acupuncturist and RAN UP THE 2 FLIGHTS OF STAIRS!! AND without coughing! woo hoo!

Today I picked up the CD with my petscans before and after chemo. The 2nd report isn't as detailed as the first so they don't say the approx. size, etc. BUT looking at the pictures side by side it looks like it's done by 25%! You can call that 'the Andrea 25'. Oh and that's my favorite number too. So anyway yahhh for decrease. After these rounds of chemo I will probably get another opinion about surgery. So if anyone knows a surgeon in the area, let me know.

Oh the Title of this one is a quote from a puffler support group's response to someone else.

Money - Insurance

2011-04-16T21:39:00.000-07:00

Well just a few weeks ago my colleague raised money for me and I felt so weird about it but now I've started reading about survivors of this thing and how in debt they are, I'm so thankful for the assistance. My first expensive medical bill was $347 for the pet scan. I thought they must be wrong, I have insurance. I wonder how much the chemo bills will be. Fortunately I do have savings and investments so I'm not totally screwed. My cousin was diagnosed with lupus last year and owes 10K in medical bills so I figure I should keep at least that much available to me just in case. I looked at my assets to finalize my will and it makes my feel good that I have life insurance and investments that my family will get if I croak. When I think about them getting the money it makes me smile I wish I could see how they'd spend it. :)

I love my company but if I ever wanted to change jobs, I can't do so on a whim and I have to warn small companies of what I have because it may be too expensive for them to cover. Despite this, the survivors I read about still do change jobs, it is possible, just needs more preparation. So I haven't lost all my freedom in that aspect.

Mission

2011-04-16T21:31:00.001-07:00

OK
I went to Medicine Buddha puja today and then listened to Heart Jewel in the car. That helped some. Florie told me a month ago about Lance Armstrong surviving puffler's - I didn't want to hear about anything then but today I have decided definitely no matter what I am NOT going to die from this. And I am Definitely not going to be getting freakin' treatments every 3 weeks forever either. I don't have control of every thing but I do have control over the decisions that I make and I get to decide.

So, for the first time since being diagnosed, I'm researching this crap. I have stage 4 Non small cell poorly differentiated favor adenocarcinoma. The doctor said that it is inoperable but I went on Lance Armstong's site and read these stories from 30 year olds with puffler's. From that I learned:

There is a procedure, called cherry picking where a doctor can go in and pluck out as much of the puffler's as possible. I read one survivors story and if it goes down enough it can be, if this doctor doesn't think so I'll just have to find another who can do that. One survivor had half a lung and could still go hiking and be active so that's the plan so far.

Another thing I learned is that I am lucky to have my pain gone without medication. I will say it again, my acupuncturist is a miracle worker, I haven't been in pain now for 6 or 7 weeks. I mean to get pins in you for an hour while you basically relax and to feel NO pain from that? Shwoo

So today my period started! I burst out laughing because I, for the VERY first time in my life, was happy to see it. I'm learning more and more about myself with this thing - there are things I don't want in life and I do want in life but most important to me is having the option to do even what I don't now desire.

Help? Everyone keeps asking me what they can do to help and thus far I've been like I don't know. But now I know

I have stage 4 Non small cell poorly differentiated favor adenocarcinoma if you know people who are in remission from this type of puffler's please let me know so that I can ask them about their doctor's/ treatments.

Friday

2011-04-16T21:29:00.000-07:00

Today was good I even walked my sister's dog in the afternoon to get out of the house. I went to one of my neighbors parties playing guitar hero... I had to leave early because one of my neighbors, who knows I have puffler's, smoked and I can't take it. I was talking to him and was trying to get away from the door thinking it was coming from outside and I was like do you smell smoke? He was like 'that's me'. I had to walk away, smokers used to annoy me, now most of them tick me off, but someone who knows me? I'm going to get these F'N TREATMENTS FOR THE REST OF MY F'N LIFE and you know this and you're STILL a dumbass?? You know the risk and choose, they CHOOSE! Why would you choose that? Why would you smoke knowing that its the number 1 cause of the number 1 killing cancer? And why would you be so selfish to cause it for others from second hand smoke?

If I die today I will go into a lower re-birth because I'm so angry, I'm so angry that I have THIS type of puffler's, the type that people cause on their own! And was probably the cause of mine - second hand, I didn't even get to choose. So there goes my effort to be happy no matter what this week - it's shot.

Let's just go over the facts from Wikipedia:

Lung cancer is the deadliest type of cancer
Lung cancer is the most common cancer in terms of both incidence and mortality
Smoking is estimated to account for 87% of lung cancer cases
Lung cancer was uncommon before the advent of cigarette smoking
The overall five-year survival rate for all persons diagnosed with lung cancer is 14%.
An estimated 3,000 non-smoking adults will die each year from lung cancer related to breathing secondhand smoke.

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

I want this to stop, I don't want to make the 5 year survival rate but only because I want to go from something else. I do NOT want to be dead from puffler's. There are so many better ways to die:
Car crash
Plane crash (I've been on a plane that was Really rocky, and thought we might crash, but this is perfect because you have enough time to get scared AND get calm before you go)
ocean sports (instantaneous death is always good)
hiking
Racing the Nuerburgring
Mini Transat Yacht Racing
African White Water Rafting (ummm hell yeah)
Backpacking (which let's face it, Totally cool way for ME of all people to die)

Type

2011-04-16T20:44:00.000-07:00

stage 4 Non small cell poorly differentiated favor adenocarcinoma - begins in cells that line certain internal organs and that have gland-like (secretory) properties.

UNDEFEATED

2011-04-15T19:43:00.001-07:00

WOO HOO! Played last night against an "easy team" to quote my team captain but it was closer than we anticipated and we played, or maybe just I played poorly. (still had fun though) I went to the bar after the game and hoped that my crush, Maui, would come so I could talk to him. He did come and I ended up staying until 12:30 am waiting for an opening that never came, but while waiting I had a good time dancing, playing drinking games (in which my teammate drank for me, such a nice guy) and talking to other guys.

almost forgot, the org..

2011-04-13T20:48:00.000-07:00

woeisme.org (get it?:D) I think I'm going to start on organization with this name for terminally ill/ chronically ill younger people(or maybe just active people) to do activities together like

Wingsuit sky diving
Cliff Jumping
BASE Jumping
trapeze
white water rafting
hiking
camping
hot air ballooning
helicopter flying

I'm really feeling the extreme sports. I don't want someone to say 'Andrea lost her battle with puffler's'. I think that sounds lame. 'Andrea was a dumb ass and kicked the bucket while cliff jumping.' That has a better ring to it, it sounds like I'm a dumb ass but it's sounds like I really LIVED.

I'm going to advertise on craigslist. If you have extreme sport suggestions (things that actually sound fun, not just dumb things, oh and no bungee jumping -ug I don't want to feel nauseous), let me know.

Oh, and if anyone is good with building simple websites let me know. oh woe is me I can't wait for you to start! :)

Drowning in a bag of chips

2011-04-13T20:12:00.001-07:00

Today was better, though I woke up in tears, after eating an entire bag of BBQ chips I was able to forget the predicament and just enjoy eating a bag of chips.

I read up on the Lung Cancer Alliance who is trying to get funding from the government and asking people to call their Congressman (oh yeah, I don't have representation HA!) and wanting this to be like the breast or colon puffler funding. They mentioned the stigma associated with this type of puffler's. At first I was like stigma? What sigma? But you know the majority of people with this disease were/are smokers. I don't want anyone to get sick but dude if you play Frogger in the streets you're a dumb ass. That's another reason why I don't want to do any support groups. In my life I have been the most anal person about smoking. I've taken cigarettes away from friends even as a teen when you some think it's cool- I looked at them in disdain. I'd wave my hands in my face when people smoke outside and hold my breathe when walking past. (obviously, that doesn't work, though I still do it). So while I have a disease that no one wants I also have a disease filled with dumb asses who probably wouldn't be here if they hadn't smoked and yet they STILL made it to freakin' 50 before getting it! SERIOUSLY, the irony.

I had a customer today who was so angry because he couldn't reach me yesterday. I just thought 'Really, is it that serious? Dude I would LOOOOVE to have your problem, let's switch problems'.

I'm going to a dog adoption fair this weekend. I figure no use holding off on adopting a dog since this thing is never ending. So we'll see if I can find a match.

Winter

2011-04-12T13:48:00.000-07:00

So I went to see the doctor today and the puffler's has decreased and she wants to do only 2 more treatments! I was so excited until I asked then what. Then we'll take another scan and see how it looks then, if it goes down again there will be 2 more treatments and then we'll go to maintenance chemo of just Altima which isn't as harsh as cistoplatin.
Until when?
Until forever. For the rest of your life. There is only a 10% chance that you'll go into remission and not need any treatment for any period of time. She said one of her patients who had a totally different disease went into remission. She only sees patients with puffler's in the lungs but his type was so different that she thinks of it as a different disease.

So those people that you see on TV that are "survivors" that's not the option she's giving me, that's not what I have, there are no Walks for what I have, there are very few survivors for what I have. There are people who have died from it or people who have it - no in betweens. I just thought that by chronic it meant that I'd go into remission and have to get scanned every month and that it may come back; but in actuality I have a 10% chance of having remission and those people you see on TV with breast cancer, those aren't me. I wish for breast cancer, can you imagine, if only I had that I could at least have better odds.

I'm 36 years old, and until forever is a really long time you know? It's not the same to get it when you're 50 or 60 I'm looking at ALWAYS having to go to the doctor for so many more years. It's never going to end, I've been putting things on hold like renovations on the house and getting a dog. I was looking forward to getting the port out once treatments end but I'm always going to have treatments. And what am I going to do about work and PTO, I'm always going to have to take at least 1 day off every 3 weeks to go to the doctor. When can I take an actual vacation? What about insurance? Disability? I'm always going be a burden to my friends and family and I know they won't say it like that but I'll be like that friend who you get frustrated with because they are always talking about their bad relationship but I can't stop it! They are always going to be concerned about me in this way who wants to do that? Who wants to be sad or stressed out for their friend or family all the time? And then dating - it seems selfish to seriously date someone and make them deal with this. I didn't have my period this month so she also said I'm temporarily menopausal not that I wanted kids, but I always kept the option of having kids open if the guy I loved wanted them - now that is off the table. It's like I had this life with all these options and now the noose is closing on them and limiting them and I can't control it and I can't stop it.

It's good news, right, at least it decreased - she said usually it does not decrease it usually just plateaus so I'm above average. But I just hoped to get my normal life back for a period of time. So many people that you hear about - it ends, treatments end, it's very hard to hear that mine won't.

Needless to say, this was not a happy day, I couldn't muster it - I was forced to look at the future today and it looks like a cold dark winter day.

still working on it....

2011-04-11T20:13:00.000-07:00

So Saturday was the second day of working on being happy no matter what. I got pancakes at a diner and then went to meet Bonnie for pedicures in Fairfax. That was a work in progress (are you seeing a pattern here, driving takes effort) there was a bit of traffic and my google maps could not quite tell me the fastest way to go so I had to keep turning around and making it re-calculate. I managed to remain not as frustrated as I would have been had I not been trying but still a bit annoyed.

Pedicures were fun though, it was nice catching up with Bonnie just the two of us, which is rare. Then we went to see Lan, who's baby boy was born on Friday. It was so sweet to see Bundy (Chris) tell his son he loves him. How interesting it is being a parent, you know the person for less than a day and already you love them. If it were any other relationship you would think that was weird.

I stayed up late Friday catching up with Jennifer so after visiting with Lan I went home and took a nap until Toula woke me up just in time to go to dinner with Florie and Don.

Sunday was another good day as I played the part of a bum until dinner with Yunki.

Today I didn't have to make an effort to be happy either until the DC Vote rally. As you may or may not know DC residents pay taxes but Congress gets to decide how we spend them and now they want them spent on something we voted for and against (the issues are irrelevant to me) however it's odd that we are bombing another country because they aren't democratic yet DC residents pay more taxes than some states yet we aren't represented in Congress and can't determine where our money goes. We're hypocrites - I once heard that one of our leaders went to China who was mocked by them because of this. In the end though is DC residents fault, today there were 100 people protesting but there are 600,000 of us so I guess most of us are OK with it.

Anyway I went to the rally and the people who protested on the streets willingly allowed themselves to be arrested along with our mayor. When they sent all those who wanted, to jail they then re-opened the streets. I was on the sidewalk with my bike the whole time when the cops were demanding that I move back so that they can open the streets. I was on the sidewalk and said "That's not fair. it's not against the law to stand on the sidewalk" to which the cop answered "It's against the law to disobey a police officer. you have 3 seconds to step back." I said OK and literally moved one foot back one foot for 3 seconds, then he said "OK you can go was that so hard." The entire time I was checking myself for anger, and I found that I wasn't, maybe I was some other kind of emotion - I didn't feel unhappy, I didn't feel frustrated... I think I felt self-righteous, I mean what an abuse of power, if I hadn't moved my foot would he have arrested me for standing on the sidewalk? If he had said jump up and down on one leg and hold your breathe and I didn't do it, could he then arrest me since "it's against the law to disobey a police office?". Whatever the case, it made him feel better to say and do that so at least he's happy. All in all, it's still a work in progress but I think I'm faring pretty well so far.

Oh! the good news is I was able to walk faster up the stair to the acupuncturist today compared to the first time when I thought "ummm I'm going to have to use someone else that doesn't have all these stairs"

AND I biked to the rally and back and didn't have any breathing problems and didn't have to stop to get up my hill. I did start coughing a little once I got home so I guess the lungs aren't totally clear but my hope is 1 more treatment and WALLA! (As you remember, that's the second thing I'm working on, hoping good things for my future self but not being attached/disappointed if they don't come true... )

Tomorrow the doctor will tell me what my treatment future holds as she sees it.

So

Dodgeball Sore!

2011-04-08T12:49:00.000-07:00

Man am I sore! I jammed my thumb last night so I've been babying it all day I think the swelling is going down but it still hurts to try and move it too much. But the rest of my body is DODGEBALL SORE I mean my legs from crab walking to keep from falling; my back from curving front then left, then quickly right;my side - what move made my side sore and the left side of my left back knee? I don't know only dodge ball moves for 2 games in a row can do this to you. :)

So yesterday was my first official day of trying my work in progress - to be happy no matter the circumstance and to hope for myself happiness (the second is a tricky one because while I hope for myself and wish for things in my future, I must be happy with the 'now' reality and not attach to that future - whoa that's a hard one). So here is how I did.

Yesterday was an easy day to start physically because I felt good. Work was also easy - I spoke with customers, I figured out their issues and didn't deal with anyone irate so I didn't have to avoid getting wrapped up into their moods. My colleague,James, also gave me some good advice - when he went through puffler's he just told himself he was going to get the flu every 2 weeks and it helped instead of thinking about it as chemo.

My teacher, Varahi came to visit, which was also nice and keeping in with the making yesterday's happiness easier. At the end of the day I had planned to meet Jennifer M. for dinner and a movie at 6:30. I knew when I said 6:30 that I should have said 7, to deal with rush hour traffic but I didn't. So at 6:25 I was stuck in rush hour traffic. I was getting frustrated by people not driving the speed limit - my first challenge. I yelled "I am going to still be happy dammit!" Yep, that didn't make me happy, so I begrudgingly smiled - at first it was too fake, it didn't work I was still annoyed and impatient. I tried smiling again this time a real one, and this time, go figure, it actually helped. I immediately thought - don't do this at home, the worse thing you can do is tell Someone else to smile to make them feel better, you have to want to do it for it to actually work. Once I genuinely smiled I could feel my body calm down and not be frustrated. So score 1 for me for my first day.

The people I know - my friends, colleagues, family, acquaintance - they are so amazing. You know, driving on the street, these people may be in front of you cutting you off, braking and honking, driving like molasses, weaving in and out, they may flick you off and get angry at you. But these are the same people who may not know me but sent me a birthday card, gave money to someone in need, is taking care of a friend, is checking up on me to make sure I'm OK when they aren't, offering a shoulder to cry on or a sounding board, praying for me in centers and churches, making a person feel welcome, sending word of encouragement to a stranger, keeping a secret for a friend or an acquaintance... amazing, AMAZING people. I'm shocked by it sometimes, when I think about the people who have commented on even this blog to say kind words to someone they don't know. I don't think about that when I'm frustrated with someone, especially when I'm driving but the people I know are so amazing that the people you know must be too and some of those people may be in rush hour traffic with me driving like molasses.

Pet scan

2011-04-07T20:47:00.000-07:00

Today I got my pet scan, the results will take a couple of days. pet scans are scary I must admit. I didn't know I was claustraphobic but in that machine I need to hold on to the image of a stupa I have,chant Geshela is with you, and squeeze my eyes so tight they almost open. I don't know how anyone else gets through it. While in there I keep thinking too - this is all in your mind, you know that you won't be hurt, you know that it will be finished in 15 minutes and you survived it before, however your mind is still scared. When I'm able to take a pet scan or MRI without fear, I'll know that I've grown in the ability to control my mind.

Later, in the car a driver got angry with me which had me thinking - I cannot make anyone happy or angry, I can't change their emotions at all - they do that all on their own. And to be honest, even if I were a Buddha, I couldn't do that. Only I control what I feel and with good reason, action A is what I would do but Action B is what another person would do in the same situation but those actions might be completely opposite of the other and because of that opposition I could be mad or sad or happy. Can I make myself happy everyday?... I think I'm going to try that. What makes me happy? I do but it sure does seem like outside things do. Certainly dodgeball feels like something that makes me happy - my escape from puffler's but how can I give myself that escape that's my challenge.

Speaking of dodgeball - we had a double header and won both games - we are the only undefeated team now. Woo hoo! I tried to catch a ball and totally rammed my finger so I'll be icing that now. Better finger than port so that's good.

Better

2011-04-06T20:17:00.000-07:00

Today I felt better - still a little off kilter in the morning but by the evening I started to even out.

My face is changing color. Around my eyes it has stayed the same but everywhere else my skin has gotten slightly darker. Only I can tell at this point...mhhh, I don't want to do this anymore. Even though it hasn't been that bad, part of me doesn't want do it. Last night I started thinking 'hey maybe this is working.' but that led to 'oh no, how much longer do i have to do this for. i don't want to do it'. I started freakin' out thinking about it and trying to think of something else instead.

I don't chant the Medicine Buddha mantra often, I guess I just want this to mean something you know, so taking and giving is what I do the most. I just want any suffering I have to be at least taking away someone else's - I mean maybe that's happening anyway, not everyone can possibly be suffering at the same time - maybe when we suffer we are already taking away someone else's suffering. Kinda like you lose the race and feel sad but that means someone else is happy. That's a nice thought isn't it? Maybe the world balances itself so all the good fortune I had previously, someone else was really suffering for and now they are in bliss. If that's the case, I betcha they really appreciate it now for having gone through all that suffering. I can certainly see how I could appreciate so much more now.

Icky

2011-04-05T19:58:00.000-07:00

I worked the first part of today and then went to Hopkins for blood work and hydration. My energy was OK but I felt not quite right all day.

I felt still icky on the way back from Hopkins and thought it was just gas. I went to pick up carryout and then while in the car, at a stop light, I throw up. I didn't see that one coming so I definitely could not have taken the nausea medicine before time.

It's a weird feeling because my body's saying something's not right but it can't pinpoint what - am I hungry, sleepy, thirsty? Am I gassy, nauseous? I don't know, I just know that I don't feel right and I don't like it.

Some things i'm learning

2011-04-04T19:42:00.000-07:00

So after Cindi's visit this past week there are some things I've learned.

1. Not all puffler's are the same so when my colleague, who has a different type of puffler's, said he was getting a bone marrow transplant, that wasn't something that I had to look forward to - the chemo is NOT going to kill all my white blood cells so that they don't come back ever again and I need a transplant. Go figure, guess I can take that possibility out of the back of my mind.

2. Sometimes ignorance is not bliss.. Sometimes it is, so I still don't want details people, just that sometimes, it's not

3. If I, a non-smoker, non factory worker, young person can get puffler's in her lungs than anything can happen. So if what seems impossible occurs, then what seems impossible CAN occur. Meaning, I can dream for myself anything that I want - it can happen or not happen, but why not dream it?

4. I haven't found what it is to make people happy but I think it has something to do with kids and exchanges

Today was a beautiful day - sunny and warm. I felt my energy back to normal but was still a little queasy through the day. My challenge is still trying to drink enough. Tomorrow when I go to Hopkins they are also going to give me fluids intravenously just to make sure I have enough.

I went to acupuncture and for the first time was able to go up the 2 flights of stairs without taking a break AND without coughing and gasping at the top! Soo I get my pet scan soon, but I think this may be working! Oh wouldn't it be wonderful if I was almost done with getting chemo and just BE again?

My brother brought his family by this evening and I was still able to rough house and play with my niece and nephew - doing what? oh yeah, cartwheels and jumping up and down!

Chemo 2 - Day 5 & 6 My Birthday

2011-04-03T15:42:00.000-07:00

About 11:45 Friday night I felt nausea for the first time, I just had gas that had to get out that made me keep gagging. Yuck. While I was gagging, I was like 'dammit they told me to not wait to take the extra nausea pills, BEFORE if I feel nausea' fortunately i hadn't eaten much but the little i drank did come out.

Yesterday I felt pretty good all day, a little queasy and gassy but otherwise OK. Cindi and I watched Firefly all day and then went to the dodgeball party. The party was in Adam's Morgan at Tom Tom's but "Maui", my dodgeball crush, did not make an appearance, so we basically talked to guys on my team (dodgeball fanatics all ! like me) and tried to get some dancing in (which was pretty unsuccessful as the music was pretty bad).

When we got back, it was like a slumber party night, we stayed up talking about Cindi's boy and puffler's and a little about the future - it was good, I'm glad to have some quality time to spend with her rather than just puffler tiredness.

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

Today was my birthday and a few of my friends came over to volunteer to clean up the neighborhood by picking up the trash. Ummm, GROSS! I live in the city and while if you just walk past you may Not notice all the trash, but it is sooo there. We picked up some gross crap, plus a LOT of cigarette butts. And dude, young and old I betcha THEY don't have puffler's! Like seriously, how did I get this disease again?

My energy level felt good today, though I did start to get dizzy picking up trash. I'm still trying to drink more, which is hard, water tastes gross but I wake up thirsty.

Chemo 2 - Day 4

2011-04-01T19:59:00.000-07:00

Nothing new here, I slept. I didn't drink enough. I walked Toula for 30 minutes. I ate some. Still just tired.

Chemo 2 - Day 3

2011-03-31T19:39:00.000-07:00

I slept pretty much all day today. I didn't drink enough, I tried but sleep won over time and time again. I ate miso soup and probably only 2 glasses of water.

I managed to make it to dodgeball and I'm glad I did because we WON! We beat the team that was 2nd place last season and has the best thrower in the league. And since we only had 3 girls it was pivotal that I came (Only 7 people play but you can only have 1 more guy than girl). I didn't play that well - Jacques, the best thrower in the league, got my behind very early in one game. I also didn't catch anything but hey we still won (it was close though 6-5, I thought we had tied and was really happy about that!)

We went to the bar afterward and I played flip cup with gingerale. So I drank a little gingerale and at some french fries.

Chemo 2 - Day 2

2011-03-30T18:45:00.000-07:00

Last night I had hoped to go to Buddhism class but I was so tired. I ate some thai food and then Cindi and I spent hours looking at wedding rings and wedding dresses. YES, I will repeat that. CINDI and I spent hours looking at WEDDING rings and DRESSES. Which is the last things we thought WE'D ever do - neither of us having that dream. It started with her of course, because she has the boyfriend and is in a serious relationship and I need to know what type of ring she likes just in case I'm asked. Then it went on to me, which was highly ridiculous having no boyfriend and sick, ohhh how attractive. :)

----
This morning started well I woke up feeling better than the last first day - not tired, not sensitive to smell and craving the smoothie that I bought Monday. I meditated on being sick - I really need help on that, it makes me cry to think about it every time. I felt good from about 8:30 am - to about 12:30, then Cindi and I went to get massages which I thought would be perfect b/c we could sleep during them. By that time I was really tired. My eyes were/are burning making me sleepy. Then Cindi and I went to Smoothie King and to pick up some food - i was asleep in almost every place we went.

From about 4 I just lay down with my eyes closed - I did have tom yum soup and my taste buds weren't bad like last time. But I didn't eat much else, I'm trying to drink more but it is tough. I drank
2 glasses of water
1 glass of OJ
1 cup of smoothie
1 cup of tom yum soup
1/4 cup of boost (the boost made me a gassy and a little nauseous this time and the phlegm started back - since it milk based I'm gonna try something else instead... don't know what yet)

I'm really tired now.

Chemo 2nd round

2011-03-29T19:46:00.000-07:00

This time Cindi and Yunki went with me for chemo. I got some tips from the nurse practitioner who said the more I drink the more energy I should get, so I'm going to try it. My port isn't as sore and it didn't hurt much to use it even though i just got it in last week. My eyes have been burning and I've been really sleepy even before the port so we'll see what liquids and the 5 hour energy drink I bought will do.

It was still fun, hanging with friends. I actually enjoyed the British comedy Cindi brought - The IT Crowd - that's a first :). One of the patients gave me her number, she's getting the same treatment. She lost her hair after the 4th and Francine said that you usually feel it before it goes like it you get this sensation that it's dying and then it comes out. Yunki asked her colleague if she would do henna designs on my head if I lose my hair so that it look like I did it on purpose. I'll also probably get a wig made with my own hair. BUT again it's not a guarantee, Francine said another patient on this chemo plan did not lose any hair so we'll just see.

In a couple of weeks I'll get a Pet/Ct scan to see if the chemo is working. I asked Nelly, the nurse practitioner, what happens if it doesn't work. She said Dr. Brahmer will think of another plan of action. Go figure, I didn't know there WAS another plan of action after this so that's good to know.

Disabled vs Death, which would you chose?

2011-03-28T19:53:00.000-07:00

So today I worked and went to acupuncture - my new Monday routine. Cindi came over in the afternoon, my "caregiver" for the week. Cindi suggested I think about talking to someone like a therapist. I feel happy and so I thought 'eh, maybe I'll think about it."

Then I spoke to the energy healer who went over what she did 3/15 and the impressions she got - she said she gets the feeling that I'm apathetic to surviving. She said I made a very practical decision in trying chemo and seeing how it goes and if it doesn't work then I just stop. It's true I DON'T care if I live or die at this point... Cindi said even if she was like Christopher Reeve, she would still rather live! Can you believe that?? She rather have my VERY worst fear!!

The energy healer said 'It's interesting that you'd rather die than be disabled because you could have been born that way and not had a choice.' Which is so true, then I got a little worried, what if I die and come back disabled! BUT I think if I started out disabled I'd be OK with it. Growing up I felt like being black was a "disability", and in some ways it was for me but I worked through it, so I think the same is true if I had some real disability from the beginning.

The healer didn't say this but I got the impression that she thinks that I may have caused this because I don't have a fear of death, or because I thought I'd die young already - kinda like a self-fulfilling prophesy. It could be, but it's kinda like the chicken or the egg argument PLUS PLUS
I always thought I'd die in a car accident I mean, I've been in 10 of them in the span of 5 years, I thought FOR SURE that's how I'd go so I definitely didn't cause PUFFLER'S. I'd have caused something QUICK. She also asked me what I'd do if the chemo is successful and I have to do this for a year... I honestly don't know. If I have as little side effects as the first time, I may be able to do that for a year, if I have pain and suffering then I definitely won't continue - it's just not worth it to me.

So She ALSO suggested talking to someone but she said maybe you should talk to someone about what lessons you've learned in your life, what you gained, and how to prepare for your next life. So maybe I'll talk to Varahi about that when she comes next week.

The healer asked me if I have trouble communicating and I don't. I'm blunt, I say what I want, (though I don't like to talk about all my feelings, I'd much rather write them. But I do still say what I want) and I do what I want and have been like that most of my life so I've had a good life. When I think of dying, if I feel sadness, it's that I haven't done enough to help more people or that I'm so sorry that I'm the cause of sadness for my friends and family. That sucks, I don't want my friends and family to be sad... that really sucks. Sorry friends and family, please don't be sad.

I have been always looking for something tangible that could help lots of people drastically and I haven't found it, maybe I never will, but if I lived longer I'd have a chance to figure it out. Maybe the only way is to become a Buddha, but I feel like there should be something that I can DO now, like physically, but I don't know what it is, it's frustrating. I can give away all my money, I can give all my time but how can I truly give away how I'm feeling? When I feel jumping up and down and cartwheels happy, HOW can I give that to anyone else? I'm really trying with the Taking and Giving meditation but it would be nice to have some sense that something has changed because of it.

So I guess you can say I'm in a state of limbo. What do I want the healer asked me. I want to live my life on my terms - without being sick or disabled, able to do everything I could do before puffler's - travel, hike, bike, play, BREATHE dammit. I feel like that's such an obvious answer, um duh? But apparently some people's answer is quite simple without the caveats - I want to live. No. I want quality, not quantity. So do I want to work and desperately cling to a life where I can't hike? I DO NOT. I want jumping up and down and cartwheels and to be honest, I don't think that's too much to ask.

Tonight, Cindi, Bob and I went to Kushi for some authentic Japanese cuisine and I got full off of yakionigiri - yummmmm.

Post port ramble

2011-03-27T06:24:00.000-07:00

This morning I woke up happy - maybe because I slept for SOOO long (went to bed a 7 and had a nap yesterday hee hee) but also it doesn't hurt to stand - the port no longer feels like it's coming out! It does still feel a little weird when I swallow (b/c of it being in my vein I guess but overall...) And I was thinking, I'm not coughing anymore, I don't have loads of phlegm (yuck!), the pain is still gone from my chest/back. I tested it Thursday, I can go up and down the stairs 4 times and not start coughing. Maybe the chemo is working after all. AND today I feel like I'm going to make people happy dammit! :D

So this morning I did the Taking and Giving meditation, its really easy to give and take when you're happy. I just imagine that I'm a wish fulfilling jewel and I would stand in the way of bombs and when they came out of me on the other side they'd be water and flowers and food and anything people needed. And people would still kill for sustenance but it would only be what they needed and since they only killed what they need to survive there would be enough for everyone and the dolphins wouldn't be killed in Japan because there would be no competition and the fishermen would be so happy that they'd swim with the dolphins and catch fish with the dolphins. And when you drive behind someone REALLY slow you wouldn't be frustrated because you'd know that your boss would understand if you are late, or your dinner could easily be warmed when you got home or your friends wouldn't be annoyed if you weren't there on time. AND there'd be a street you could drive on just for if you wanted to drive fast with eco-friendly cars on them. And there wouldn't be drug dealers b/c you're happy! why do drugs? and everyone would get pet scans every year because people would care about healing people and not about money so they would find out about puffler's AND other diseases really early and cure them b/c early detection IS the cure. And every breath near an AIDS patient with the wish to heal them, would! you would see it right before your eyes, their skin would get better, they'd become stronger and since we'd not be ruled by money, and ego and pride the cure to AIDS would be found like Ah! to iu aida. AND every one would be jumping up and down and doing cartwheels they would be so happy. Oh yeah! cartwheels and jumping, that's what happy people do.

This afternoon on TV there was a Beyonce special so I spent the afternoon dancing and resting. And ended with Ethiopian food. Yummm, can't have a better ending.

this mornin'

2011-03-24T07:37:00.000-07:00

I was a little panicked - what if the doctor says I can't play dodgeball with this thing in my chest? I know, that seems so silly, I mean who cares really? How important is dodgeball? But dodgeball is my constant fun thing, and no one except my team captain knows I have puffler's and so I'm just normal - I don't think about it and I know no one else is thinking about it. It's perfect.

Lectures - Resistance is Futile

2011-03-23T09:09:00.000-07:00

Wednesday I got lectured by the holistic doctor about not taking the supplements
AND the spiritual/energy healer (apparently she didn't get my 2 messages last week and thought I had wasted her time).

You know what though, I don't want to hear it. I decide what I want to do and if I don't want to take 14 pills a day, then I'm not going to. No one can scare about dying, don't dangle that in my face and think I'm going to run away frightened cause I'm not. I don't have kids. I don't have a husband. I don't have a dog. I have no one who depends on me to be here. And even if I do Everything that everyone suggests doesn't mean that I'll definitely survive. I keep repeating it, but I got a 50/50 chance, just like everybody else.

Wednesday I meditated on what I would grasp at the time of death and I couldn't think of anything for death BUT my biggest attachment is being able to be active - to me the people who are the strongest are those who are disabled. Being in a wheel chair, or paraplegic, or always having no energy or can't get around, or always in pain, or tired, or SICK... you know, some of what I felt all winter...that is my attachment, my fear... I'm so attached to it I don't really know how to get rid of it, meditate on it a lot? I don't know about that one...

----------------
So surgery was a success, and I have the port and the doctor said I could play dodgeball Oh YEAH! But once the numbing agent wore off and I stood up in the middle of the night to go to the bathroom OUCH! It feels like gravity is trying to move the port down and out. Lan suggested a sports bra and to sit up straight more often so that the skin can get used to the change so I'm trying that now. I don't look like the borg... you know what it does look like? Remember the movie "The Mummy" and those black scarabs that would eat you from the inside out? It looks like I have one of them in me. That's kinda cool, if I make it to Halloween then maybe I'll be a scarab victim hee hee :)

Becoming borg

2011-03-22T14:52:00.000-07:00

So I'm getting the port this Wednesday. Francine, the nurse at Hopkins, showed me what it looks like (it's purple, what are they trying to do, bejewel me?) and how it works. Then later one of the patients volunteered to let me see hers - actually you don't see it at all, it's just a bump under the skin not plastic sticking out of you.

Unfortunately the only time available was 2 on Thursday which means I can't eat all day (ummm hello people I'm trying to GAIN weight)

Ya know, dodgeball isn't the most important thing in life but it's fun and darn it, I'm going to be missing the first game to become borg (ok so now that I'm not going to be borg, it's just fun to say)

Today in Buddhism class we went over the 12 dependent related links. I loved that section in Joyful Path. As always happens with dharma, when you study it again you learn something new. Today Varahi asked us to focus on Contact/Feeling and Craving/Grasping. Basically Contact is your discriminating mind - it tells you A is going to be pleasant or B is going to be neutral or C is going to be unpleasant, etc. This is what you do before you actually feel it, you decide how you're going to feel. Sometimes you can tell this is happening but sometimes the time it takes for you to decide and feel are like THAT! so you don't realize. Our homework is to work on our contact this week.

So I have a lot of time before I feel the experience of my second round of chemo so I'm going to say it is going to be pleasant. So I'm not saying that I won't have side effects that's silly, that part I can't control. No, I'm going to think fatigue is pleasant - I get to stay in bed all day watching tv or reading a book - some people think that's a great thing anyway! So I'm going to think it's a pleasant break from work. Not wanting to eat is pleasant - hell some people don't want to eat SOO bad so that they can lose weight. So no appetite is pleasant, and I don't have to worry about losing weight because I gain it all back a week later. Anyway it's not just my chemo treatment, everything CAN be pleasant so that's what I'm going to work on.

Another thing my teacher talked about was grasping at the time of death. I think my grasping is for not having pain, not being incapacitated so that's my weakness and is what I need to work on. I don't know what else I may grasp when I have to think back to my first 2 weeks when I was terrified and thinking death was imminent I just thought about being sick, be ridden, unable to do the things I love... maybe I would grasp biking and hiking and dodgeball and capture the flag and all those fun experiences... I don't know.

You never know

2011-03-21T18:42:00.001-07:00

Today was another great day for me. I went to acupuncture again, which I must say is simply a miracle. I have been in pain all winter long in my chest and back and unable to fully sleep and after only 2 sessions it is STILL all gone. A miracle. Today he said he'd try to help the pain in my arm too wear the chemo went in.

My neighbor's daughter died last night - she was about 50 years old completely healthy and died of a heart attack in the middle of the night. My neighbor is in her 80s, has had a heart attack and all sorts of other things and lives an active life.

You never know when your last day will be. Healthy people die before sick people, young people die before old people. You can read this and hear this and not really get it. I certainly didn't get it, I don't even get it completely now and I'm Dying. Isn't THAT crazy! I found out about puffler's before the tragedy in Japan and they have died before me - people younger, older, healthier. I still get annoyed with people while driving but I may die today... Everyday, Every moment I have to remember, this could be my last day, what do I want my last actions, my last words, my last thoughts to be?

birthday gift

2011-03-19T20:01:00.001-07:00

Today was another great day. I had brunch and then went off to play what? you guessed it, dodgeball. I ended up staying there 2 hours playing - we even invented a new version called deathball (because 1 ball had a skull on it) if you caught it then you could bring all your teammates back in and if you threw it and got someone out you could pick one other person from their team to be out. It was a great time.

My birthday's coming up soon and my mom's gift to me this year is getting everyone she knows to volunteer on that day. That's the best gift ever! Now I have to think about what I'm going to volunteer doing. April 3 is a Sunday but it'll be the Sunday after my 2nd chemo treatment so I need to pick something that I don't need a lot of energy for, just in case.

Today I found out that my teacher in my San Francisco sangha, Tessa, was just diagnosed with puffler's. I went from being completely unaware of this disease (well except for the 'walk for the cure' commercials) to having it 0 and 1 degree of separation from me. If you can, please include her in your prayers.

Quote

2011-03-18T20:33:00.000-07:00

I got a card from Kalyani with this quote on it that has me thinking. The quote she said is from Daisaku Ikeda

"Illness is not something to feel ashamed of. It is not a sign of misfortune or defeat. Suffering is the fuel of wisdom, and it opens the way to happiness. Through illness, human beings can gain insight into the meaning of life, understand its value and dignity, and strive to lead more fulfilling lives. "

I forgot that about karma, it isn't good or bad it just is. I decide what's good and bad just like I decide what makes me happy or if I'll even be happy.

everything just is
everything just is

Is that freedom...

my arm hurts and I'm going to have chemo in 2 weeks and it may still be in pain. I may have the port and look like the borg. I may have to get more chemo and be sick most of the time. I may get chemo and it not work to take away the puffler's. I may get chemo the next time and throw up everyday and...I think I'm starting to understand. everything just is, if I don't label anything good or bad then it doesn't bother me.

When a child dies, it just is
When your money is stolen, it just is
When you meditate and you lose focus, it just is
maybe that's how meditation teaches - you lose focus, that part's natural - but if you label it, it's harder to do... hmm something to think about...

Biking!

2011-03-18T19:01:00.000-07:00

Today was sunny and warm. It's 10 pm and it's still over 70 degrees. I just got back from biking to Dupont! Oh yeah! I was able to go biking.

It was not the easiest ride, this was the first time I had to stop to make it up to my house (which is at the top of Summit Place) but it was fun and I was able to do it.

You know, riding with one of your lungs out of commission - I'd think it would feel like running miles when I've only run a block (in some ways it does) but also its like someone has a hand on your heart keeping it from beating as much as it needs to, or your chest not having enough capacity to do what your heart wants to do or like holding your breathe and running at the same time.

BUT it didn't feel like that the whole time, so I enjoyed my bike ride through the city to hang out in Dupont with Yunki.

We met these guys in the park doing slack lining they said it's a form of meditation - you tie a tightrope and try to balance and you can only do it if you can focus your mind. I just watched some youtube videos of people and some people didn't look too focused, it just looked like gymnastics tricks, but it was still cool to see something new.

Yunki told me that when her other friend had puffler's the chemo effected her mental state and she was angry and emotional from it. I don't feel that way, most of the time throughout the day, even though I'm thinking about dying all day long - I don't feel angry or depressed or sad or panicked. I felt those things more before I started treatment because I had to think about the future - make a decision about what I was going to do. Now that I've made it, as long as I stay inside of today and only think about the future enough to schedule something, I feel good.

Plus I asked Buddha to determine the best outcome for helping others... I haven't helped enough people in my life but I don't know that I will help so many more by living... I don't have any good ideas about what to do to make people happy. Jennifer and I were at the grocery store a week ago and the cashier was so sad, she was just pushing off negativity - I racked my brain to think of something to say or do that would make her feel better. If I gave her money, like in the stories about paying it forward? If I gave her some compliment? If I just asked about her day? I did the latter and she was still very unhappy.

Florie suggested a book might make people happy - but that won't help people starving. Happiness is all in the mind so how do you get people to make themselves happy?

Today, right now, I feel happy, even though I have puffler's, so definitely health does not determine happiness... What would make you happy? Could someone give it to you or help you get there if you didn't already feel happy?...

St. patty day ramble

2011-03-17T20:17:00.000-07:00

Today was another good day, I worked a full day. I had energy and it was warm.
I celebrated St. Patricks Day with Florie, Jennifer and Hyo which was fun.

Today I also saw my lawyer - I drew up a will in 2006 thanks to my mother's advice - so now I just had to specify things a little more clearly and that will be done, which will make me feel better.

I told my Little Sister's (from Big Brother Big Sister) grandmother today about puffler's especially since Ashante is in my will.

Ayori, my friend and colleague, started a donation for me. So now I have money from my colleagues which I am so very appreciative that they would think of me but... it's also very weird for me. I just gave money to charity not 2 months ago and now people are giving money to me. And it's not to say that I don't... I don't know how I feel about that I've been thinking about it since and there is no emotion, I just feel weird.... maybe I feel like a sham, do I need the money? Maybe eventually - certainly if I'm not able to work I will...

Last night I started thinking about the port and where it's going to be and how I'm going to look like the freakin' borg and what about when I want to wear a tank top and is it going to scar me and what if it hurts just like my arm and omigod I have to get chemo again and omigod JG said that he was getting a bone marrow transplant is that going to happen to me? I don't know if I can do that, there has got to be a stopping point and STOP! That all happened in the span of 20 seconds, until I could tell myself to STOP.

Now I don't have a port
Now you feel fine
Now you aren't going through chemo
Now you don't look like borg
You may not even make it to the point, you may suffocate in your sleep before you even get there RELIEF...

I'm not suicidal - I don't have suicidal thoughts, but all my friends and family want me to live and right now my biggest relief is that I might die before this gets any worse.... so i guess that's why I feel like a sham when my colleagues have so graciously thought of me and given me money - I can ONLY think of now. And I don't want to think about needing it later.

I don't want to join a puffler support group
I don't want to know that Henry survived it
I don't want to know that it's tough
I don't want to know that it's easy
I don't want to be a survivor, I want to be a 'never have had it'.

When I told my Mrs. Henderson about the puffler's I said 'so I don't know what will happen but Ashante is in my will.' You know, just because you say everything will be OK doesn't make it so. Just because you believe it with every once of your being doesn't make it happen. I believe in the power of the mind to heal. But I also believe that even with that power, people die. My mom wants me to believe with every once of my being, every thought, that everything will be OK. I don't believe that. I don't disbelieve it either. I just don't know. To me I have a 50/50 chance of survival, which is the same chance I had for dying on any day before this though I didn't think about it then.

Spring!

2011-03-16T19:02:00.000-07:00

Today was awesome, my appetite is normal again, smells don't bother me anymore.
My arm still hurts a little but not huge. My stomach is completely settled. I went for a walk and was able to skip (though, I still get out of breathe fast).

I played in a pick-up dodgeball game and had a GREAT jump - over 2 balls at once and then a balancing act move and ANOTHER jump! whoa - that was fun. I jammed my finger trying to grab the ball once but that was totally worth it.

Nurse's check in

2011-03-15T17:23:00.000-07:00

Today I started working and then left for my first check in with the nurse, to see get blood work and see how I'm doing. I thought I'd be back at 3 since my appointment was at 12:30 however it was an all day affair as we didn't get seen until 2:30. Needless to say, not much work was done today.

I did feel better today. Though I felt queasy pretty much all day, I did get hungry (ate fish and chips).

On the ride to Hopkins I felt motion sickness, which is a first for me, and on the way back having eaten it was a little worse. It's weird, feeling off like this, I don't know what to do about it - if I sit really still and hold my breathe, will that make it better? or roll up into a ball? I haven't figured it out. I thought the queasiness all day was due to hunger (I've never eaten so little) so I expected to feel better after I ate. I was counting down - OK there was a fry... wait for it, wait for it.... but it didn't feel drastically better.

I think I've figured out what the problem is though...

This morning the spiritual healer did her thing but fortunately she wasn't available at 5 to talk (which was when I was queasy in the back of the car). It takes a lot of effort to talk, I generally am not that much a phone person anyway but most of the time - I don't want to take the energy to talk on the phone... you may not notice but when you talk there is a little bit of your stomach muscle engaged in that action and with a queasy stomach, it's best to just shut up. Even the effort to "uh huh" can feel a bit much.

So my blood count is 990 or at least my first line of defense blood count so I'm at a high risk of infection which means I gotta make sure I wash my hands a lot and I CAN'T eat raw fruits and vegetables. Get the heck outta here!! An apple? Nope, gotta be cooked or processed, they said even though you wash the stuff you just can't be sure. But Toula, my sister's dog, fortunately, is safe. Go figure, but that's cool because every morning, when my sister leaves for work, Toula comes up to sleep in my bed - this morning, she was annoyed that I didn't hear her fast enough and have her blanket ready.

7th day

2011-03-14T16:51:00.000-07:00

I had a great night's sleep - no pain, nothing woke me until someone texted me in the morning and through my super hero dream for a weird loop hee hee :)

Today I had much more energy - I worked, I went to the acupuncturist and I walked.

I got to the acupunturists and he wasn't there. Just last night I was thinking 'oh I can't wait to tell him that it's working!' and then 'anything could happen tomorrow, don't bet on seeing him' so when i walked up the 2 flights of stairs (whoa, so tiring) and tried the door 'i thought, wow, i really Can't predict the future'.

So I waited there for 10 minutes ( I forgot my phone so couldn't call) and then went walking around, where he saw me and I was like 'hey i thought we were on for 2'. Anyway we just did it at 2:30, he's really tall and I have limited lung capacity so walking with him the block to the place was a bit of a work out. When we got to the stairs I just said "go on up, I'll meet you there." [like a freakin' old lady]

After I had the pins in me I realized I hadn't been annoyed, irritated or angry that he was a no show or late. That's the difference when you think you may die, things just that used to seem important, don't even bother you... or at least that's been the affect with me.
----

I realized this day, that puffler's affected me in the most inconvenient place. If it were my breasts - what do I need those for? ovaries? no, need. BUT MY LUNGS?? I can't travel (fly), because I wouldn't have enough oxygen, I can't run and jump because I don't have enough oxygen. Today, I wanted to jump and run so bad - it was sunny and warm and a perfect day for being silly and bouncing for no reason. As I was driving to the acpuncturist's I had dreams of cartwheels and leaps, but then I climbed the stairs and realized that is still out of my reach. Very frustrating, I just want to live my life - if I have a week, 6 months, so be it, I want to JUMP, I want to RUN, I want to TRAVEL.
-----

There is a pick up dodgeball game on Wednesday - if I feel like I did today, I fully plan on jumping.

So what's the message for today? What are you waiting for?

JUUUUUUUUUMMMMMMP!!!!!!!!!!!

6th Day

2011-03-13T19:32:00.000-07:00

Last night was particularly fun - my arm started hurting so bad it woke me up and I called the emergency line who told me to put a hot compress on it. Then I lost ALL energy and ended up just elevating it and going back to sleep. Definitely need to get the port before the next treatment.

Why does there have to be more than 1 treatment? I have poison running through my body. why can't there just be one time of that? Who invented chemo anyway?

Today I stayed in bed until 3:30, even though it was sunny and warm outside. My arm still hurts and I was cramping a bit today too, but I did eat more -
pizza , pudding cup, yogurt, miso noodles... I'm worried now I haven't drunk enough since cistoplatin is supposed to mess up your kidneys. :(

5th day

2011-03-12T17:43:00.000-08:00

Had a little more energy - went for a walk.

Ate a couple of slices of pizza - it wasn't bad but not as good as usual. my tongue feels like it has a thin piece of paper on it making it feel dry and not letting me feel as my taste buds.

My coughing seems to be getting worse so thank goodness I don't have any nauseau. I have a lot of phlegm to spit out - yeah it's totally gross.

What also sucks is my period started today - when I've been perfectly healthy - it can completely suck away my energy so let's hope it's not as heavy as it usually is.

My arm hurts where they put in the chemo, so that sucks, I should probably get the port(another added weird thing)

Yunki and Bob visited today, that was nice and my mom and dad are staying at my uncle's which is also nice b/c as much as I love having them here - my place has wood floors and tall ceilings so everything on the main floor echoes up. It'll be nice to have a little more quiet - I'm sure they could use the break too.

-----

Every once in a while I'll get nervous about my future - I have to think only of now. I can barely make plans, Rod asked me to coffee yesterday for today. Sounds good, but I don't know how I'll be feeling I don't know what's going to happen from day to day. The funny thing is, I never did know...

But today I woke up. Today my arm hurt and I didn't know that it would. Today my appetite was better and I wasn't as tired. And now I'm writing my blog and I feel OK.

So that's day 5

Eating is overrated

2011-03-11T11:29:00.001-08:00

All the energy I felt this morning? Gone, I've been knocked out all day while huge events are going on - tsumani in Japan... and the west coast?

But food is icky. My mom has been trying to wake me up to eat - the pomegranate juice I liked now tastes like cranberry juice (did they get the right kind?) and everything else is gross gross gross.

I drank 2 Boosts today, that's 700 calories, how much more do I need to be a bum that does nothing but sleep all day?? ... i think 700 is enough for a bum.

4th Day

2011-03-11T06:59:00.000-08:00

Today I have more energy than yesterday I even managed to get 1 sun salutation done in yoga. In the middle of the night/ morning I was actually hungry and had a Boost.

Oh, Boost, I'd never heard of you before yesterday but what a life saver you are! 350 calories and I don't have to chew you or smell you.

I did Medicine Buddha mantras this morning and listened to Heart Jewel, I don't know if Heart Jewel will help me, but I love Dorje Shugdan especially the part that says

NOW is the time to dispel false accusations against the innocent.
NOW is the time to protect the pitiful and the protectorless.
NOW is the time to protect Dharma practitioners as your children.
In short, from NOW until I attain the essence of enlightenment,
I shall honour you as the embodiment of my Guru, Deity, and Protector.
Therefore please watch over me during the three periods of the day and the night
And never waver in your actions as my Protector.

I used to blast this CD in the car, screaming NOW on my way from Pleasanton into San Francisco.

You know what's weird? Not having good karma anymore. I used to think I had some pretty Awesome karma - in fact just a few months ago. So much so that I was giving money to charities, because no way I could have this much good karma and not give - health, wealth, and friends...

Now just like that ! (A to iu aida) health is gone...

3rd Day

2011-03-10T07:23:00.000-08:00

I feel fine. But my nose is sensitive to food smells and I don't have an appetite.

The pain is still mostly gone, I had a few stabs yesterday, but the constant pain is gone, (100 points for eastern medicine!)

The dex didn't effect me much last night, so last night for the first time in months, I wasn't woken by the pain in my chest or back. Suweeet!

Last night I spoke to the spiritual healer about the healing she did yesterday morning. It is pretty expensive 100 for the hour healing and 100 for the talk after word for her to tell you what's she did and found.

She said she did restructuring of my energy field that was messed up from the chemo and sent energy through me.

2nd chakra is relationships to others/ self - she said she felt I'd had a major disappointed and asked if I just broke up with someone. I told her I'd never been in anything major before, so maybe that's the disappointment.she said to think about that how its affected my life or how i feel about my self

3rd chakra is your mental state she said that she notice I was very confident and believe that I can do anything but that I am too busy and hyper and should slow down. She says sometimes that an illness has a lesson in it so this may be one of the lessons b/c now I'm forced to slow down.

4th chakra which is the one at the heart she said she cleared a lot of grief from me who knew?

5th chakra = profession/ spiritual life she said I was very sure of myself there.

6 - "third eye" here she went into my blood to work with the white/red blood cells

She said she sent me blessings and she noticed an animal that I was close to, don't know what that means - maybe Pepper is out there watching over me? :)

She said I should do a core star meditation where I imagine light in the middle of my abdomen and expand it out throughout my body. This meditation is a lot like Giving meditation but instead of giving light to others I'm giving it to myself.

Oh she learned all this under Barbara Brennan who has a book called Hands of Light. I probably won't read it

So I have scheduled her to do more work on me on Tuesday but I don't know that I'll continue it because it's costly and because I think doing mantras and meditating with Buddhism may be just as affective - I think it's nice to get a helping hand though.

Too much detail - the personal record 5

2011-03-09T09:05:00.001-08:00

Today's Temperature 97.6

OK dude it does say too much detail personal record so if you did not what TMI what are you doing here?

So I figured out what's up with my stomach. I haven't eliminated anything since Friday. I didn't think on that today when it was acting funny. But about an hour ago I felt like I needed to go number 2 and number 2 was NOT I mean NOT a go. Like worse than Vietnam not a go. So bad that my body just laughed and said 'NAH, you got some work to do before we try and attempt this'

So my mission is to drink more water in hopes that the 4 slices of pizza,3 cups of noodles, and now fish and chips that I've eaten in the last 4 days can... redefine themselves in such a way that they expose themselves pleasantly.

2nd Day

2011-03-09T07:57:00.001-08:00

I feel fine. I didn't sleep that well. I slept but I looked at the clock at 1:37, 2:03, 2:45, 7:20... the Dex is supposed to mess up my sleep but it also is supposed to counteract the side effects of the chemo so I need to take it until Friday.

The pain is still gone though!!! So the acupuncture must be working.

I'm looking forward to a pain free REM sleep! :)

Today I feel slightly lethargic but other than that I'm good.

More later!

OK so I still feel lethargic, not fatigued just wanting to chill out - that could be b/c I didn't sleep that well. Also I'm not hungry, I'm forcing myself to eat something but I don't feel nausea just not hungry.

12:18 pm felt a sharp pain in my back - level 6. I hope that doesn't mean the pain's coming back

Getting Chemo is fun?

2011-03-08T18:36:00.000-08:00

Go figure. my sister took Florie and I to my uncles where my parents drove us to Lutherville, MD where the Greensprings campus of Hopkins is. We arrived a little before 9 and I had an IV in me by about 9:30 until 4:30 pm. Whoa!

First they put in saline to protect my kidneys
then a few other drugs to protect me from the 2 chemos
then the chemos
and more saline.

Towards the end I was getting heart palpitations that started to make me cough,so they took me off the saline and gave me a chest x-ray. i had too much fluid so next time they'll reduce the amount. I had a slight headache for about 30 minutes and my arm felt weird sometimes but other than that it was easy sailing.

Florie and I watched Burlesque, very good btw, and talked and joked so it was fun just hanging out with my friend.

My dad was driving around most, instead of in the cubicle we were in which was cool. And my mom went on a walk and to call and update people.

I think I may not get the port because they actually don't put the needle in the vein that they use to take blood from and my veins are big and stationary unlike my mom's.

There are still a lot of side effects from this thing, including hair loss, which I thought I wouldn't have to worry about.. but it's not losing everything like your eyebrows and eyelashes so that's cool.

I felt almost no pain today and took no pain medication all day, the most pain was about level 1 in my back so hopefully this means the acupuncture is working.

I did the medicine Buddha mantra for a while, while getting chemo and the spiritual healer will do energy work on me tomorrow morning and I'll talk to her about it tomorrow evening.

I like my nurse, Francine, who is very thorough and caring.

So, so far so good

It's Dragon Slaying Time

2011-03-07T19:10:00.001-08:00

I'm ready
I've stretched
I've eaten the right foods
I've sharpened my sword
I've chanted and will be chanting Medicine Buddha's mantra
Tayata Om Bekanze
Bekanze Maha BeKanze
Radza Samudgate Soha

Let's do this thing !

Preparation Time

2011-03-07T09:29:00.001-08:00

Today I turned in my taxes, I spoke with the spiritual healer, and I go to acupuncture.
I feel confident today. Now that all my belief systems are covered medically I feel good - I have both the east and the west working for me and that feels more comfortable.

So another thing I'm going to take from this which is funny because before I knew i had puff d' I was talking to Lan about how it's not that altruistic to give money and volunteer for a cause that affects you, your family/friends, because basically you just care because it happened to you. I still think that's true SO when I slay this dragon I am SOOOO going to be pushing for early detection of this thing - if I were in Stage 2, they could have removed it surgically and CURED me. Why are we paying for money for body x-ray machines in airports but we don't make people get pet scans/cat scans as part of their physical? You could say that its the cost but, how much is it going to cost for me to get chemo vs. a cat scan every year?

Too much detail - the personal record 4

2011-03-07T09:22:00.001-08:00

yesterday i think i may have found the pain trick
i took a hydrocodone at about 10:30 but was coughing a lot so read and then took another at about 11/11:15. It made me drowsy as 2 usually do, but I didn't wake up until 7:15 when Tula came to sleep with me. So I think that's what I'll try tonight and see if that works

yesterday i didn't eat until 1 but ate
half a cantaloupe
rice, seaweed and tuna
half of a 16 oz bag of carrots
smothered potatoes
a salad
a shot of prune juice (iron's making me a little constipated)
a pinkie fingernail taste of fudge (i figure i can probably take a sliver of sweet stuff)

weighed in at 150 last night OH YEAH!