Surgery day

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

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

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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?

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.

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

Atom impact

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

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

Don't you just love U2? :D

Feeling Good

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

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

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

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

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

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


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

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

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

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

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

Refusenik

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

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

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

Faith and Miracles

Or maybe just faith in miracles

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

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

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

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

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

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

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

I am sound - Heart of Wisdom

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

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

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

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


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

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

Fighting Alternate

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

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

I'm a Survivor

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

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

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

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

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

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

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

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

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.