Saturday, August 20, 2011

Collapsed Lung

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Wednesday, August 17, 2011

my feet don't hurt

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

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

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

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

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

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

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

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

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

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

Tuesday, August 16, 2011


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

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

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

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

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

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

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

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

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

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

hers was bigger.

Bob saw it screamed "Oh MY GOD!"

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

Sunday, August 14, 2011


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

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

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

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

Friday, August 12, 2011

Karma, Acupuncture, focus... and anger

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

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

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

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

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

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

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

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

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

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

Wednesday, August 10, 2011

Is it me?

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

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

Tuesday, August 9, 2011

I'm alive and I can move

so the surgery was a success.

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

Random memories from surgery -

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

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

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

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

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

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

that's all