Chemo 2 - Day 3

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

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. :)

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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

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?

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

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'

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

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...

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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

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

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

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

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!

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

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!

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

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

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.
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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.
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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

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

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

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

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

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

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

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?

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

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

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

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!

my treatment goal

This weekend and today are preparation time. Ebony calls Tuesday Dragon Slaying time so in keeping with that theme I'm preparing my armor for the battle.

The doctor's have been telling me their goal for treatment but if I'm going to go to battle, I can't fight for someone else's goal. So these are the things I want.

I want this treatment to make me physically and mentally stronger
I want to become enlightened
I want to feel good physically and mentally
I want to help many more people


Yesterday I went with Jennifer to get a mani/pedi. I have a metallic polish - armor like :)

You know what I've noticed? This may sound bad but sometimes, during this,when my friends or family breakdown about me having puffler's, I feel stronger as I go into comfort mode. It's weird having people worried about ME. I feel like saying "Don't worry, it'll be OK." Like I would say before going to one of my trips abroad.

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If you call at this time we'll also throw in a free dose of chemo!


Side effects include:
chestpains,sexyraspyvoice,coughing,shortnessofbreathe,fatigue, constipation,Swellingoftheneckandface,Clubbingoffingers. Stop taking pills immidiately and talk to your doctor if any of these symptoms become worse.

Too much detail - the personal record 3

Went to bed at 12:20 had 2 melatonin pills to see if that would help me sleep through the night, pain started around 6, woke up at 6:20 ish and took another hydrocodone.
Sent out spreadsheet for things I need(but it doesn't really have much on it) I don't know what to ask for really.

I've started looking at the information on chemotherapy - I thought there was supposed to be some sort of class. One of the things I read was if you were given chemo at home - it's crazy, you can't let it touch you and you can't touch anything that someone having taken it recently spouts out - eg bowel movements and stuff. Is this a good idea? Should I really be taking this, it doesn't seem safe! I have puff d' and now I'm taking the liquid with the green face and an X across it that I was told not to drink as a kid. Like seriously!
----

I want to use Hopkins but I also want to use Washington Hospital Center, I wonder if I can get the port put in at Wash Hosp Center, where it's closer. And go to some of the services there...

Hey all these things count as fluid, which apparently I'll be needing a lot of. These look yummy...

Baked custard/Puddings
Gelatins
Ice milk/sherbet/sorbet/smooth ice cream
Italian ice/Popsicles
Milk/soy/rice milkshakes

but they are loaded with sugar so I can't eat these. Need to think of some other things...

Lan suggested doing something fun or cool or some treat the day of chemo so it won't be JUST chemo day, I think that's a good idea. What can I do, chemo starts at 9 we have to leave about 8(if I drive)7:30(if my parents drive) hee hee :)

slight panic

Today the meds did their job and kept the pain away pretty successfully. The only problem is now I have a pain under my left breast and a bump there and that bump is red and a little itchy - which may be good, maybe it's just a bite for something? but maybe in 3 weeks puff d' spread from my lymph node there, and if that happen would it have skipped my heart?

So I started to panic, but what can I do? I haven't started treatment so nothing can be solved yet.

The doctor didn't call me today about the chemo, did they forget about me? Meanwhile Washington Hospital Center calls me all the time about their services, etc. Should I switch to them? I did like that doctor, just not as much as the Hopkins one. Oh well we'll see what Monday brings. 9 am


I called Hopkins and they are saying that treatment probably wouldn't start next week. I then called my insurance and they hadn't received any pre blah blah blah. I started freakin' out, called Hopkins again and they were closed. Jimmy suggested emailing my doctor and just as I was typing it out she called - I'll be going this Tuesday after all. I'm not going to get the port yet because I don't want the first treatment delayed for it (since now I'm freakin' out about it spreading).


Weight: 149.5 at 11 pm

Tonight I did the walking meditation I learned in Thailand, that was helpful in calming me down. I kinda feel like I have to fit things in this weekend, like the end of this chapter is on Tuesday. I always like suspense in a novel but I wish this was a choose your own adventure book.

Well, the dice have just stopped rolling (Wheel of Time reference for you sci-fi/fantasy lovers)let's have some Ethiopian, try and help those in need, get a manicure/pedicure and talk about sci-fi books!

Too much detail - the personal record 2

Woke about at about 4:30 am from the pain in my left side
Popped a hydrocodone at about 5:30 slept until about 9 am
pain stopped until about 10
Popped a hydrocodone at about 10:45

Pain pretty under control today

Feel pain under my left breast sometimes now
I have a lump on the right side of my left breast and it's red.
Could puffler's moved there, that fast? That was exactly 3 weeks ago today.

Just for a timeline:

1/23 Thoracentesis/cat scan
2/2 Bronchoscopy/ Biopsy
2/7 Told of puff d'
2/9 saw oncologist but needed additional scans run
2/11 MRI and pet scan - results showed puff d' only in lungs not in brain, or other vital organs - considered stage 4 because in both lungs, lymph node and pleural effusion.


Ate peanut butter and jelly sandwich and apple, left over gnocchi

Dodgeball

This evening were the dodgeball playoffs - we made it to the semi- finals, so we were on the top 4 teams. I was getting really tired at the end so in some ways it's good that we didn't make it to the next game. We played well - I'm getting better at catching so now my team's excited to have me back (yahh I can do more than dodge!) ... I haven't told them about the puffler's I'm going to sign up for next season but I don't know how dependable I'll be b/c of the puffler's and I don't know how to bring it up. In some ways I want to bring it up so they will be like 'wow, if you could have puff d', I could have puff d' and then they can be aware and maybe test it' on the other hand, I don't want them to baby me.

I went to the acupuncturist and the pain stopped while the needles were in except for one piercing pain once in my back. I took the medicine about an hour after and it seems like the combination works for the pain better than just one or the other. A bath still trumps both though as it takes away even the memory of pain and takes about 15 minutes to come back - dodgeball also is good for the pain as my mind is so focused on playing the game that it forgets about the pain.

Lost a pound - I'm at 148. I called Hopkins to see when I would start treatment and they said they'll call me - it has to be approved by my insurance first... seriously? what a bottle neck


KINDNESS -

So you know how my friend, Eva, has a documentary going filming kindness examples?
www.kindnessthemovie.com

Anyway, people have been so kind to me and since I can't thank them enough, I'm going to post the kindness I receive here. Buddha says that every one has shown you compassion even when you don't realize it - like the fruit that you eat, you eat out of someone's kindness, while they may do it for money, they don't HAVE to do it.

1. John at the Jimmy V Foundation, talked to me on Friday and totally perked up me spirits - he also got me an appointment at Hopkins uber fast, THEN he just sent me a package in the mail with a bracelet with "don't give up... don't ever give up " on it and an inspirational CD from a puffler's survivor.

2. My niece sent me a nice letter from which my favorite line is "Sorry your trip to Africa had to be canceled. That stinks"

3. My sangha that sent a picture of the card they signed for me with blessings, and good wishes

4. My brother coming down to accompany me to Philly to see doctors and being OK with not going too

5. My cousins, who have called (a lot, Cynthia :D) and sent facebook messages and cards

6. My mostly non mushy friends, who have been so so sweet and mushy! :D Now, I don't care so much about the mushy. I guess when you have a reason to cry everyday, mushy is no longer a big deal.

Too much detail - the personal record 1

So I've decided to document everything I eat and do to help the puffler's so I can see what's really helping or not. If you see a blog entry with the title above you can skip it because that's more for tracking purposes.

I called the doctor's office at hopkins today and they said they'd call me about when I would start chemo, apparently they have to get approval from my insurance, who you'd think be ready by now, it's not like they didn't see I have EFGR test and stuff but whatever.

Today I took hydrocodone at 3 am when I woke up and then again at around 8. I was still in pain but didn't take it before the acupuncture appointment at 2 because I wanted to see what that could do for the pain.

During the appointment, while the needles were in me all the pain in the front in my chest was gone and the constant pain was gone from my back with a few piercing pains still occurring. While the needles were in my right hand and left foot jumped off the bench and twice I had a sudden deep breathe/ cough occur. Frank, the acupuncturist, said that was normal - the jumpiness. He put needles in my ears to keep over the weekend, for the pain, which stopped it down to a level 1 in my back and still none in my front (my front feels like the memory of pain, it hurts a little, but more as a memory). Made a follow up appointment with him for Monday at 2. By the time I got back to my car the pain in my back began again, turned on the heat and that made it a little better.

At home at 3:30 back is in pain but not that much, front is in pain but not too much. Taking hydrocodone to see if the combination of the acupuncture and medicine will rid me of it all.

Food:
I ate a green apple and a peanut butter and jelly sandwich toasted with salted butter.

water 2 pints

a little bit of brownie (I know I'm supposed to stay off of milk products BUT, I still have a Firehook brownie Cindi bought for me so until that's finished....)



sushi rice, the seasoned seaweed Jennifer gave me, and tuna - oh yeah an onigiri! yummm

Pain isn't strong enough to disturb me when I'm distracted/having fun.

Ate another peanut butter and jelly sandwich right before bed as well as taking
hydrocodone
folic acid
melatonin
NOT the oxycodone this time since it doesn't seem to be keeping the pain away for every 8 hours much less 12 like it says.

I weighed in at 148 pounds at the end of this day.

I still woke up in pain around 4:30. I have pins left in my ears from the acupuncture but that didn't help. I will still keep going because most things don't magically work the first times.

and night sweats

I mean seriously? puffler's just likes to rack up side effects, good thing I'll be taking something for it soon.

Octavia Butler, my favorite author, wrote a series in which these aliens find the earth when we've mostly destroyed it and they capture and test us and they think our puffler's is amazing - they manipulate it for healing. The hyper growth of cells allows them to regrow healthy parts, so if you lost your arm they would use puffler cells to regrow it - Fast. That's so cool, isn't it? Maybe someday we can do this for real and not wait for aliens to figure it out.

Today was a bad day for the pain, I was working but could barely get anything done because of the pain. You know how you do a whole LOT of situps really fast and you get that latic acid pain at the top of your rib cage/ stomach? That's what this new pain is like and it's not confining itself to the left side. Then I get this muscle spasm like pain the is like someone ice picking me from inside - not often, but it's so painful that I can't hide it - I gasp, or my facial expression changes... that's how I know it's getting worse 'cause I can't hide it. I was so tired too, I took a nap at noon for 15 minutes but I want to work too.

I'll be taking off next week at work but part of me wants to stop completely for longer and just work when I have the energy. HR said I could but I don't know how that would work. I'm doing mostly data exports now -which really a monkey could do....if you've heard Bob's story than you know that to be a literal statement. I hated them in the summer, now, they get my mind off the pain just enough but also I don't need my mind to do them - sometimes it's hard to concentrate on the fun stuff, the analytic stuff.


Today was beautiful weather and Jimmy and I walked the area admiring DC architecture - I DO love this city.


Before I go to bed I take 4 pills now - hydrocodone, oxycodone, melatonin, folic acid, jeez what more?


I went to Rustic Tavern today to hang with my neighbors, it was great to meet them. I feel like I'm dying - I guess everyone is- but, the pain is worse, my sleep is worse, I can't keep weight on, now I'm 149 so I still have about 15 pounds before the weight gets into my high school weight and I have no more room to lose.

I see an acupuncturist tomorrow. i'm sleepy

Kindness

Today Mrs. Ellison, my neighbor, came over in tears. My sister told her on Saturday that I had puffler's. Mrs. Ellison is 80 something year's old and crying said "This should be happening to me, not you - you have so much more life to live"

Pain

So I think the pain is getting worse, now the medication is hit or miss. It's mostly at a constant 3 but tonight I had spikes in pain that were 5 or 6. In Buddhism class I tried to meditate on emptiness (which is what I think we were supposed to meditate on) but it was hard to concentrate as I was gritting my teeth trying to sit in a more comfortable position. One thing that I got out of today's class - even Geshe-La had to go through bad karma - I never think of that, but even he has had to move from his home probably never to see it again.

Hopkins it is

I'm still at Hopkins now waiting to get a B12 shot so that I can begin treatment. I decided not to go to the Cancer Treatment centers of America. I would be lying if part of the reason I'm not going is because my team's dodgeball playoffs are this week and I want to play :)
But also I've spoken to a holistic doctor and will speak to him again, I have reccomended acupuncturists that I'll be going to, I've gotten numbers to spiritual healers that I'll be going to and Geshe-La made prayers for me so I feel my eastern side is covered sufficiently.
Plus the doctor here is very nice - not so serious as all the rest so I didn't feel like breaking down as I have for the others - she has funny facial expressions.

I just got a B12 shot and then wait a week b4 chemo. Ummm Ouch! That shot was in my muscle!

This isn't happing to me

It isn't real. this is not happening to me
this is not happening to me
this is not happening to me
this is not happening to me