Today I went back to work half day and then went to Hopkins for blood work. I felt queasy on and off all day until I finally threw up in the evening, about around the same time I did the last time after chemo.
The coughing is coming back so maybe this means its no longer decreasing. I can't seem to get happy this time around. To be honest I don't know what I'm doing this for, what's 1 more year, 1 more day... and I keep crying, maybe it's because it's chemo week and I feel sick and not myself. I once thought it would be cool to know when you're going to die, well if you had 6 months or a year because then you do all you wanted to do in that 6 months, like in that Queen Latifah movie. Having more than that makes it difficult to live... how can you plan a future when you know Exactly when you're going to go? Maybe if everyone knew it would be easier. Maybe if I were a parent it wouldn't be difficult, I'd want to see my kids get as old as possible or make it to graduation, etc. but I'm not and I'm wondering why I'm holding on to a life that's so obviously over.
I don't think I'm going to do the maintenance chemo, I think I'm going to take some vacations and volunteer as much as possible and go on a meditation retreat for my 6 months. I try to think of something I could do to make a difference, be an advocate for puffler's but you know what? In the end the selfishness of myself and everyone else is the reason I am dying from this disease. Everyone should have full body cat scans every 3-5 years, it should be part of your physical - why don't we do that? Because of money? When I die money won't matter to me. Shouldn't we already have a cure for puffler's or some form of early detection? In the end its the collective selfishness that stifles the cure.
There something to be said about hope and not knowing the future, right now it seems like mine is set... what horrible horrible actions I must have done in this or a previous lives to deserve this. Every TV show, every person I see,I'm jealous of their health. And so many people are wasting their lives, and I was like that just wasting my life being mad at stupid shit, being insecure, being afraid, being sad at stupid shit, now I really have something to be sad about and I look back and think you fool.
Tuesday, May 3, 2011
Sunday, May 1, 2011
ER
Yesterday I woke up feeling fine. I had two bowls of soup so I could get some liquid and then went to watch my sister play soccer.
All was fine until I started feeling dizzy and tried to walk it off. The next thing I remember my check bone is hurt and I remember hearing a loud sound on the bleechers and my sister asking me if I fell. I remember saying I think so and then I wake up again lying down with strangers around me asking me questions and part of the morning's soup in front of me. After all the questions I just got really really tired
I could hear my sister in the background, sounding scared. Is this my life? This is my life now and I hate it. The EMT suggested we go to the hospital but someone on Jennifer's team suggested that we call the on-call oncologist and ask her. When we got home I did that and that doctor said to go to the ER.
7 hours later I was back home - the doctor said my potassium was low and gave it to me intravenously which may or may not have caused me to really throw up, but definitely caused me to want to go home. So I did after getting a potassium prescription.
How can I make this life better? Right now all I really want is for some freak accident (hey kinda like getting puffler's) to occur and kill me instantly. I would consider selling everything and traveling until I die, except that I get so much joy out of thinking about how my family will spend their money.
At the ER there was a woman who looked about 80 something but turned out to be my mom's age, who had had stab wounds, puffler's in the lung(and still smoked), weed, and HIV and now couldn't eat and drink. Maybe those things happened gradually, because I kept thinking, while listening to the laundry list of ailments every time a new doctor entered, how do you LIVE like that?? Maybe because my fear is pain/suffering and not death, I never really Will understand it. Maybe
All was fine until I started feeling dizzy and tried to walk it off. The next thing I remember my check bone is hurt and I remember hearing a loud sound on the bleechers and my sister asking me if I fell. I remember saying I think so and then I wake up again lying down with strangers around me asking me questions and part of the morning's soup in front of me. After all the questions I just got really really tired
I could hear my sister in the background, sounding scared. Is this my life? This is my life now and I hate it. The EMT suggested we go to the hospital but someone on Jennifer's team suggested that we call the on-call oncologist and ask her. When we got home I did that and that doctor said to go to the ER.
7 hours later I was back home - the doctor said my potassium was low and gave it to me intravenously which may or may not have caused me to really throw up, but definitely caused me to want to go home. So I did after getting a potassium prescription.
How can I make this life better? Right now all I really want is for some freak accident (hey kinda like getting puffler's) to occur and kill me instantly. I would consider selling everything and traveling until I die, except that I get so much joy out of thinking about how my family will spend their money.
At the ER there was a woman who looked about 80 something but turned out to be my mom's age, who had had stab wounds, puffler's in the lung(and still smoked), weed, and HIV and now couldn't eat and drink. Maybe those things happened gradually, because I kept thinking, while listening to the laundry list of ailments every time a new doctor entered, how do you LIVE like that?? Maybe because my fear is pain/suffering and not death, I never really Will understand it. Maybe
Wednesday, April 27, 2011
Chemo 3/ day 1
Chemo day was like the ones prior - fun. This time Bob went with me and we talked and watched 'Serenity' good movie if you like scifi... with a western twist. I did feel a little dizzy from one of the protector medicines for a while and I was extremely tired this time and fell asleep at 8:30.
Today I was able to drink more than usual but still not hungry. It still strikes me as weird that I don't want to eat the very next day. I went to the acupuncturist, who said he'd try to help with my appetite - I didn't expect it to work immediately... I think part of it is caused by fatigue - it takes energy to eat just like it does talking on the phone, and I don't have that much right now. But dodgeball is tomorrow so hopefully I'll have enough for the game.
Today I was able to drink more than usual but still not hungry. It still strikes me as weird that I don't want to eat the very next day. I went to the acupuncturist, who said he'd try to help with my appetite - I didn't expect it to work immediately... I think part of it is caused by fatigue - it takes energy to eat just like it does talking on the phone, and I don't have that much right now. But dodgeball is tomorrow so hopefully I'll have enough for the game.
Sunday, April 24, 2011
Jumping up and down
So this weekend I was jumping up and down and cartwheels happy.
I went to a dog adoption fair and the animal shelter to see if I could find a good fit. It's hard to do a search via pet finder because really I just want a carbon copy of Jethro's personality, my favorite dog at the Oakland shelter. He wasn't a beautiful dog to me, I certainly wouldn't have picked him out in a line up but what a great personality! So I didn't find a match this time but that's OK because I want to wait until the maintenance starts anyway.
After that I played biked to Adam's Morgan to play dodgeball for 2 hours and then it was so beautiful just biked around for an hour or so. I didn't start coughing until an hour after that. So I think my test now is to exercise for a long amount of time and then see. Also now I can see that my lung capacity isn't what I should be. If only I had known... I remember last year in the summer I was feeling that my endurance was horrible and thought it was strange because I had been hard core working out 3 times a week at Crossfit. I thought it was just my sprinter lungs holding me back.
Gosh, I just don't want this to happen to anyone else when it's so preventable. I keep thinking back to when I had chest pains in California and went to the doctor - could that have been when it was starting? If they had given my a catscan 4 years ago, could this have all been prevented? Oprah had this woman on her show that is the author of "Crazy, Sexy Cancer". Oprah asked her do you ever ask why me? and she answered "why not me?". that's not how i feel, i feel like yes, dammit, why me? I have not picked up a cigarette, dubbie (i don't even know how to spell it), or any smoked substance in my life. maybe if i had this somewhere else in my body but yes, why me? but since it's happened and I can't change it. I can help change it for someone else I'm sure.
I keep thinking how would I have considered getting a cat scan? When I worked for Avendra my boss said she went to a dermatologist about skin cancer and I should get it checked out. I figured it was kind of a long shot, I mean, have you seen me, I've got TONS of protection with my brown skin. BUT despite that, I did go and get my skin checked. For me, that's how it would have to come. I keep thinking I should write Oprah and ask her to publicize people with puffler's in the lungs and tell them to request cat scans, but that wouldn't have helped me because I never watched Oprah. Commercials about puffler's and medicine and insurance, were just blah blah blah to me as far as my own health was concerned. Florie told me about Lance Armstrong having this and seriously it was like it was the first time I heard it. So basically my friends would have had to tell me, I wouldn't have listened to my family (they still send me forwards about watching out for the man who gives you needles in grocery bags, so that you trip and fall on them when you buy oranges for less than 50 cents - and other ridiculous things). And it couldn't have been sent with a forward either because I automatically delete those. Lan told me I should have a fire ladder, and I do (never used it, still dusty in the box, but I have it, and it's in a place where I could use it if I needed to). I always get tested for HIV... I guess that's part of the problem, there is no simple blood test for this. But seriously, a cat scan is not like a pet scan, but you can still see if there is anything suspicious. So I guess what I'm saying is, especially for young adults (since apparently 70,000 Americans between 15-40 are diagnosed with cancer each year. ), tell your friends to request a cat scan. If the doctor doesn't suggest one, then lie and tell him/her that your mom, dad, friend, sister, aunt, cousin, dog, cat has puffler's and since it runs in the family, you just want to be sure. Gosh, if I had known to ask for a cat scan for the pain in my chest this could have been caught in stage 3 or 2 and I'd have had one surgery with a scar on my side instead of the scarab on chest. I'll keep thinking about other ways I would have acted earlier, it would be great if just one person gets surgery and is Cured (seriously that's what the doctor said stage 2 is curable!) rather than have to go through this crap that I'm going through.
---
So my other thing is I have to get over my anger with smokers. It's going to be a work in progress but I decided I have one friend, Carisa, who used to smoke and I met her when she still smoked. She is going to be my sample smoker because she is a very kind person and I know she would not intentionally harm anyone. She is a little different because even when she smoked she was conscious of non- smokers, moving away from them, or fanning the air. So she is going to be my sample smoker so that I can work on getting rid of my anger towards strangers who smoke.
I went to a dog adoption fair and the animal shelter to see if I could find a good fit. It's hard to do a search via pet finder because really I just want a carbon copy of Jethro's personality, my favorite dog at the Oakland shelter. He wasn't a beautiful dog to me, I certainly wouldn't have picked him out in a line up but what a great personality! So I didn't find a match this time but that's OK because I want to wait until the maintenance starts anyway.
After that I played biked to Adam's Morgan to play dodgeball for 2 hours and then it was so beautiful just biked around for an hour or so. I didn't start coughing until an hour after that. So I think my test now is to exercise for a long amount of time and then see. Also now I can see that my lung capacity isn't what I should be. If only I had known... I remember last year in the summer I was feeling that my endurance was horrible and thought it was strange because I had been hard core working out 3 times a week at Crossfit. I thought it was just my sprinter lungs holding me back.
Gosh, I just don't want this to happen to anyone else when it's so preventable. I keep thinking back to when I had chest pains in California and went to the doctor - could that have been when it was starting? If they had given my a catscan 4 years ago, could this have all been prevented? Oprah had this woman on her show that is the author of "Crazy, Sexy Cancer". Oprah asked her do you ever ask why me? and she answered "why not me?". that's not how i feel, i feel like yes, dammit, why me? I have not picked up a cigarette, dubbie (i don't even know how to spell it), or any smoked substance in my life. maybe if i had this somewhere else in my body but yes, why me? but since it's happened and I can't change it. I can help change it for someone else I'm sure.
I keep thinking how would I have considered getting a cat scan? When I worked for Avendra my boss said she went to a dermatologist about skin cancer and I should get it checked out. I figured it was kind of a long shot, I mean, have you seen me, I've got TONS of protection with my brown skin. BUT despite that, I did go and get my skin checked. For me, that's how it would have to come. I keep thinking I should write Oprah and ask her to publicize people with puffler's in the lungs and tell them to request cat scans, but that wouldn't have helped me because I never watched Oprah. Commercials about puffler's and medicine and insurance, were just blah blah blah to me as far as my own health was concerned. Florie told me about Lance Armstrong having this and seriously it was like it was the first time I heard it. So basically my friends would have had to tell me, I wouldn't have listened to my family (they still send me forwards about watching out for the man who gives you needles in grocery bags, so that you trip and fall on them when you buy oranges for less than 50 cents - and other ridiculous things). And it couldn't have been sent with a forward either because I automatically delete those. Lan told me I should have a fire ladder, and I do (never used it, still dusty in the box, but I have it, and it's in a place where I could use it if I needed to). I always get tested for HIV... I guess that's part of the problem, there is no simple blood test for this. But seriously, a cat scan is not like a pet scan, but you can still see if there is anything suspicious. So I guess what I'm saying is, especially for young adults (since apparently 70,000 Americans between 15-40 are diagnosed with cancer each year. ), tell your friends to request a cat scan. If the doctor doesn't suggest one, then lie and tell him/her that your mom, dad, friend, sister, aunt, cousin, dog, cat has puffler's and since it runs in the family, you just want to be sure. Gosh, if I had known to ask for a cat scan for the pain in my chest this could have been caught in stage 3 or 2 and I'd have had one surgery with a scar on my side instead of the scarab on chest. I'll keep thinking about other ways I would have acted earlier, it would be great if just one person gets surgery and is Cured (seriously that's what the doctor said stage 2 is curable!) rather than have to go through this crap that I'm going through.
---
So my other thing is I have to get over my anger with smokers. It's going to be a work in progress but I decided I have one friend, Carisa, who used to smoke and I met her when she still smoked. She is going to be my sample smoker because she is a very kind person and I know she would not intentionally harm anyone. She is a little different because even when she smoked she was conscious of non- smokers, moving away from them, or fanning the air. So she is going to be my sample smoker so that I can work on getting rid of my anger towards strangers who smoke.
Thursday, April 21, 2011
Just testing
So today I woke up at 6:30 and went for a run. I went around the blocks and back up the 2nd street hill (which is hard on with total lung capacity, in fact I later saw a biker walk his bike up half of it LAME). Anyway I was able to make it up the hill without coughing but Very winded so I walked a block and then ran another 10 minutes down and back up the other side of the hill.
Basically, all is well. Jennifer M. came over this afternoon and saw my scans so now it's not just the Andrea 25, she agrees there has been significant decrease. OK bring on the chemo (who ever would have thought I'd say that) let's see this bad boy get LOWER!
Basically, all is well. Jennifer M. came over this afternoon and saw my scans so now it's not just the Andrea 25, she agrees there has been significant decrease. OK bring on the chemo (who ever would have thought I'd say that) let's see this bad boy get LOWER!
Tuesday, April 19, 2011
Chemo day? Nope
It wasn't meant to be today. I forgot to take the Dex yesterday. Bob and I got caught in traffic and were an hour late. Hopkins was an hour late. And finally my white blood cell count was 580 and it needs to be above 1000 to get chemo. It's strange to me that it went down from last week - the lowest its been since I started so next week I go back and we'll see if I get it or not.
Monday, April 18, 2011
Who am I? part 1
I meditated on emptiness this morning. Meditated on who I am, how I exist and then on NPR they talk about the book "Shadows Bright as Glass" where this guy who had a stroke changed drastically BUT remembered who he used to be. The book is the exploration into who we really are. Oh, yeah book club book!
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