I am sure Ben told you all about my numbers, decreased fluids from my lung sac, and lymph-nodes. No luck with my liver yet, but we are glad the tumors are not growing. There are some problems perhaps with my spleen and kidneys that has to do with the weird clotting in my body. Dr. Otero didn't seem too concerned. I had an echocardiogram. It's a heart test to see if I had a hole. I guess Regie had a laugh in there. SUUURRREE, make cancer funny. Well needless to say, my ticker is just fine. The said it looked beautiful. You know that is the second time I have heard this. I think I should start a modeling career, just think, it could help pay for medical bills.
I wanted to make sure that I posted my first goal. I went to Gilda's club and did YOGA!!! Oxygen tank and all. I got on the floor and did it. Wow, how my skills have changed, but I did it! It was the first thing I wanted to accomplish. Ben came in at the end of class and I even heard him Chant (he he).
Afterwards we went for tempura rolls. I crave these unbelievably. Ben will go to any length to get these for me. I have no idea why they are so delicious. I guess they say taste buds change.
Ben has a great suggestion to take further advantage of Gildas. I told the leader that I was looking for some company too and she said they go out of coffee a lot, so I cant wait to start meeting some people who are going through the same as I am. Because I have said that all the support in the world doesn't make others understand, and that's okay, I can't understand the other side either.
Then we went to my school and saw a bunch of my professors, it was really fun. My social anxiety seems to be getting better. I figure what the hell, what's the worst that anyone is going to say.
I have a really difficulty time typing. For some reason my brain is like mush, my friend calls it chemo brain, so before this takes two more days i wanted to thank all that came out to Luigis or contributed. The outpouring of love and support was unbelievable. I wish I would've had the energy to be there. Again I am shocked at how generous people are. I truly think there are much more caring and thoughtful people in the world, than there are the nasty ones.
I also have to thank Sarah for the Crazy Sexy Cancer DVD. I ripped it open and watched it right away. Thank you so much. And Aunt Amy, I finally got the meditation CD into my iPod, it is fantastic, I know you are taking classes, I'd love to study with you.
okay, now I must go back and clean this mess up. WE'RE BEATING IT!!!!!!!!!
Friday, March 7, 2008
Friday, February 15, 2008
I'm glad to not be in tents...
The last couple of days have been strange as usual. Ben used the perfect phrase, "holding pattern." All I want to know is that this new kind of chemotherapy is working. We have to wait a little bit to get another CT scan to see if it really is shrinking the tumors. Yes, my numbers seem to be getting better. Yes, the tumors in my lymph-nodes seem to be shrinking. Yes, my eyes are white and not yellow, but I don't know for sure. I feel like I am getting better, but I know that I can tough through physical pain. I also wish I knew how much clot was still in my lung. I know it's still there, I know it's going to take months, but I want to know it is going down. I was talking to my mom and I know that my strength and weakness is my impatience. I want to be better and I want to be better yesterday. That helps me keep my fire burning, but it also keeps my stomach churning and this stupid sense of anxiety always sitting on the bus seat next to me coughing all over me without covering its mouth.
Yes, I am taking medications for anxiety. I don't know how much they help, I guess it would be worse without it. But then again Ben just went to leave to go to the store and I burst into tears. I'm not sad, I'm not scared, they just come. It is like a whisper that seems to creep into my consciousness out of nowhere...cancer. Then I sit with it, that word, that thought, that picture of that scan of Lily, my lovely liver covered with tumors...and I cry.
Ben's 94 year old grandma came out here to see me last week and the embrace we shared was amazing. There was something that was so "real" about it. I just wept. It feel it captures the image of the the mystery of life, there are no guarantees. We truly have no control over our true fate. We can try to take the best care of ourselves as we can, but we can never know.
I honestly am not complaining. There is this thing that I do when I am on my way to chemo (or as I like to call it, going to get my healing medicine). I had never seen this before. On the way down I-5 there is a hill as you are approaching the Madison Exit. If you blink you will miss it, but there are a set of tents that are up on the hill. I look up there every time, and every time I feel really blessed. I would still rather be in my position that up on a hill in the winter in the cold. I would never want to be that cold and lonely. I know that I have a long fight ahead of me, but I couldn't do it by myself. I still believe this life is about sharing it. I am so lucky that just about every time tears come to my eyes there is someone to rub my head. So if you are ever just feeling like you can't take it anymore or you are just feeling like crap, just remember that's not you who lives in those tents. Just feel the warmth and have a good cry...or scream (I have found that feels really good at times too).
Now to less depressing news. I went in for a blood draw today for my platelets and I thought that they would be really low (I've had some problems with them being low). They were 168! They need to be over 150 (and have been down as low as 12). So I don't need a transfusion!! YEAH HAW. I might just have to go in for a shot to get my white blood cells up. But I should be able to get healing juices on Monday!! We are getting aggressive with my treatment. This is great...in that weird way. I feel kinda crappy, but it is going to make me better in the long run (I hope i hope i hope). Please pray with everything you have that this treatment works for me.
I also want to let you know we have added another kind of treatment. It is not chemo but it is something that attacks the cancer, breaks it down so my cells can get at it (I think this is how to explain it). I'm getting this every week. I love my new doctor. I really just feel like hugging him every time I see him. When I got my last medicine he said he was optimistic...so see, we are moving in the right direction...I just want to know for sure we are moving in the right direction.
I also walked around the short stay area twice without my oxygen and stayed at 96%, so that's good too. I still feel really winded which is still the most frustrating thing about this, but I am trying to do all the walking and I have a breather that I do to try and keep my lungs strong. It is just an odd sensation to have to be tied to something.
I have to say that having my mom here was great. She was a great help, but we also did a lot of needle point and other projects. It is just so wonderful to have the help. She is going to come out about once a month to help. I also have to do a quick thanks to everyone else and their packages and letters. my god, the generosity helps me get through everyday. I must say I just got a quilt from my Aunt Amy today and it is so beautiful. It is a little one, and I can't even explain it. I really want lessons! For now I will stick to needle point for a while even though I stabbed myself and I think I got my finger infected, can you believe it! (I had the nurse look at it today).
Anyway, one more story just because it is funny. When I was in the hospital the psychiatrist comes in to see if I should be able to get some anti-anxiety meds. It seems pretty straight forward... well, he went through all the colors of my poop, what it says to me when i have a stomach ache, if i feel like puking, if I am sleeping, having nightmares (doesn't inquire about content) etc. Pretty standard questions I guess. You must be able to find out a lot about someone talking about poo. But the funniest thing was he drew this circle, first in pen (or pencil). Then traced it with a highlighter. (You must remember this is at like 7am. Then he hands me the paper and tells me to draw a clock. I couldn't help it either, I had to cheat, I mean there one was, right behind his back. I felt like, "oh my god, what is this going to say in my records? Should I have done a Salvador Dali type clock, or did he really just want a simple clock, Well, I went simple, then drew in the time he told me. Although I drew the wrong length hands, which is really ironic because his name translated to Dr. "Hands" in spanish. Anyway, then we got the bill and Ben said that he cost $400 each time he came in, he came in for a total of 20 minutes for two visits!! God, I went into the wrong business! Naw, I could never make people draw clocks.
I know we could get really existential with the whole clock thing, time and all, but I prefer to keep it absolutely absurd.
Well I am about to dose off, so i will blab on at a later date.
love Angel.
Yes, I am taking medications for anxiety. I don't know how much they help, I guess it would be worse without it. But then again Ben just went to leave to go to the store and I burst into tears. I'm not sad, I'm not scared, they just come. It is like a whisper that seems to creep into my consciousness out of nowhere...cancer. Then I sit with it, that word, that thought, that picture of that scan of Lily, my lovely liver covered with tumors...and I cry.
Ben's 94 year old grandma came out here to see me last week and the embrace we shared was amazing. There was something that was so "real" about it. I just wept. It feel it captures the image of the the mystery of life, there are no guarantees. We truly have no control over our true fate. We can try to take the best care of ourselves as we can, but we can never know.
I honestly am not complaining. There is this thing that I do when I am on my way to chemo (or as I like to call it, going to get my healing medicine). I had never seen this before. On the way down I-5 there is a hill as you are approaching the Madison Exit. If you blink you will miss it, but there are a set of tents that are up on the hill. I look up there every time, and every time I feel really blessed. I would still rather be in my position that up on a hill in the winter in the cold. I would never want to be that cold and lonely. I know that I have a long fight ahead of me, but I couldn't do it by myself. I still believe this life is about sharing it. I am so lucky that just about every time tears come to my eyes there is someone to rub my head. So if you are ever just feeling like you can't take it anymore or you are just feeling like crap, just remember that's not you who lives in those tents. Just feel the warmth and have a good cry...or scream (I have found that feels really good at times too).
Now to less depressing news. I went in for a blood draw today for my platelets and I thought that they would be really low (I've had some problems with them being low). They were 168! They need to be over 150 (and have been down as low as 12). So I don't need a transfusion!! YEAH HAW. I might just have to go in for a shot to get my white blood cells up. But I should be able to get healing juices on Monday!! We are getting aggressive with my treatment. This is great...in that weird way. I feel kinda crappy, but it is going to make me better in the long run (I hope i hope i hope). Please pray with everything you have that this treatment works for me.
I also want to let you know we have added another kind of treatment. It is not chemo but it is something that attacks the cancer, breaks it down so my cells can get at it (I think this is how to explain it). I'm getting this every week. I love my new doctor. I really just feel like hugging him every time I see him. When I got my last medicine he said he was optimistic...so see, we are moving in the right direction...I just want to know for sure we are moving in the right direction.
I also walked around the short stay area twice without my oxygen and stayed at 96%, so that's good too. I still feel really winded which is still the most frustrating thing about this, but I am trying to do all the walking and I have a breather that I do to try and keep my lungs strong. It is just an odd sensation to have to be tied to something.
I have to say that having my mom here was great. She was a great help, but we also did a lot of needle point and other projects. It is just so wonderful to have the help. She is going to come out about once a month to help. I also have to do a quick thanks to everyone else and their packages and letters. my god, the generosity helps me get through everyday. I must say I just got a quilt from my Aunt Amy today and it is so beautiful. It is a little one, and I can't even explain it. I really want lessons! For now I will stick to needle point for a while even though I stabbed myself and I think I got my finger infected, can you believe it! (I had the nurse look at it today).
Anyway, one more story just because it is funny. When I was in the hospital the psychiatrist comes in to see if I should be able to get some anti-anxiety meds. It seems pretty straight forward... well, he went through all the colors of my poop, what it says to me when i have a stomach ache, if i feel like puking, if I am sleeping, having nightmares (doesn't inquire about content) etc. Pretty standard questions I guess. You must be able to find out a lot about someone talking about poo. But the funniest thing was he drew this circle, first in pen (or pencil). Then traced it with a highlighter. (You must remember this is at like 7am. Then he hands me the paper and tells me to draw a clock. I couldn't help it either, I had to cheat, I mean there one was, right behind his back. I felt like, "oh my god, what is this going to say in my records? Should I have done a Salvador Dali type clock, or did he really just want a simple clock, Well, I went simple, then drew in the time he told me. Although I drew the wrong length hands, which is really ironic because his name translated to Dr. "Hands" in spanish. Anyway, then we got the bill and Ben said that he cost $400 each time he came in, he came in for a total of 20 minutes for two visits!! God, I went into the wrong business! Naw, I could never make people draw clocks.
I know we could get really existential with the whole clock thing, time and all, but I prefer to keep it absolutely absurd.
Well I am about to dose off, so i will blab on at a later date.
love Angel.
Sunday, February 10, 2008
I'm back
Hello everyone,
I finally have returned home!! I have been in the hospital that Ben was calling the office, Deneen was calling it the hotel. Geez, it was getting ridiculous. I have to say I am so glad to be out of there. My mom has been here for two weeks and will be here until Tuesday helping out. That has been really great. Since I have been home I have been able to get some things organized, things in order, some exercise. I finally feel like there is something for me to do.
I won't bore with too many of the medical details, and I am sure that Ben has kept everyone informed, but the main problem was a pulmonary embolism, which means the clots from my leg broke off and went into my lungs. Should've killed me but somehow I walked into that ER on my own volition and let them take over from there...for what seemed like forever.
I really shouldn't make it sound that terrible. My nurses and techs were and are some of the most amazing women and men you could ever hope to meet. Robin, Jenny, Rina, Candace. They are just to name a few who helped me through everyday. This is not just by giving me my pills and taking my blood pressure, but by comforting me. By giving me faith that I would e able to fight this. They didn't even have to say this, it was just a feeling I got from them. One of them said, "we all say you don't belong in here." You know that I also have my damn pride and I want to make sure I don't sound like I am being a wimp, and Robin said that I was one of the sickest patients (just had the most going on), but was the fun room to spend time in. I was worried if they just believed I was strong, they wouldn't know how serious things are. She assured me that was not the case.
I have run into some rare crap which makes everything extremely difficult. Of course we are fighting the insurance, but on top of that the meds I need are about 150 per 3 days. Leave it up to me!!
Enough of the crap...there has been so much else going on. Since I have been home (and I have a filter in my vein now so I shouldn't throw anymore clots which makes me more mobile. So I had chemo on Tuesday, then laid in bed for two days, then by Friday, we were on our way. We went to the mall, I fell out of my wheelchair, that was pretty funny, no major injuries! Then we lost the car and were wandering around the parking lot in the rain looking for the car. (this is me and my mom). Deneen saved the day and led us to the car, mom ran. Yeahhhh for quitting smoking!! I was able to get a bunch of exercise by pushing the wheelchair around, then when I got tired, I just hopped in.
Then yesterday we went to Office Depot and Target to get some organizational things. Geez, I have been on a mission to get things in order after being away for so long. I feels like a real homecoming. I really want to stay out of the hospital.
Other than that, I have just been needlepointing and keeping my hands busy. It is really helpful. I have lots to work on!!
The final thing I am going to say for now is that I got a new doctor. I am kind of unsure how it even happened. My dr. was out of town and Dr. Otero just happened to fill in. He is so amazing. His bedside manner is amazing, I feel like he is part of the team. He said, that he thinks about what it would be like if he was in my position and then treats his patients from that perspective. Like Lane said, a phenomenological doctor, how rare is that!! Or should I just say empathetic. When we saw me for chemo he lit up and said I looked great--that the numbers are one thing, but as a physician it is great to see his patients looking so much better (or something like that). He also commented on the lymphnodes on my neck, that they have diminished in the last week.
This is it everyone...the last chemo didn't work. He's got me on a new aggressive one, so pray for me good and hard that my numbers keep moving in the right direction! (Already 2 of my liver functions are in the normal range!!
It is going to continue to be a long fight, but I feel like i am in a much better place to fight.
I love you all and appreciated all the cards and gifts I returned to when I got home. I feel all the love and prayers, please keep them coming, I can't do this without everybody.
Love,
Angel
I finally have returned home!! I have been in the hospital that Ben was calling the office, Deneen was calling it the hotel. Geez, it was getting ridiculous. I have to say I am so glad to be out of there. My mom has been here for two weeks and will be here until Tuesday helping out. That has been really great. Since I have been home I have been able to get some things organized, things in order, some exercise. I finally feel like there is something for me to do.
I won't bore with too many of the medical details, and I am sure that Ben has kept everyone informed, but the main problem was a pulmonary embolism, which means the clots from my leg broke off and went into my lungs. Should've killed me but somehow I walked into that ER on my own volition and let them take over from there...for what seemed like forever.
I really shouldn't make it sound that terrible. My nurses and techs were and are some of the most amazing women and men you could ever hope to meet. Robin, Jenny, Rina, Candace. They are just to name a few who helped me through everyday. This is not just by giving me my pills and taking my blood pressure, but by comforting me. By giving me faith that I would e able to fight this. They didn't even have to say this, it was just a feeling I got from them. One of them said, "we all say you don't belong in here." You know that I also have my damn pride and I want to make sure I don't sound like I am being a wimp, and Robin said that I was one of the sickest patients (just had the most going on), but was the fun room to spend time in. I was worried if they just believed I was strong, they wouldn't know how serious things are. She assured me that was not the case.
I have run into some rare crap which makes everything extremely difficult. Of course we are fighting the insurance, but on top of that the meds I need are about 150 per 3 days. Leave it up to me!!
Enough of the crap...there has been so much else going on. Since I have been home (and I have a filter in my vein now so I shouldn't throw anymore clots which makes me more mobile. So I had chemo on Tuesday, then laid in bed for two days, then by Friday, we were on our way. We went to the mall, I fell out of my wheelchair, that was pretty funny, no major injuries! Then we lost the car and were wandering around the parking lot in the rain looking for the car. (this is me and my mom). Deneen saved the day and led us to the car, mom ran. Yeahhhh for quitting smoking!! I was able to get a bunch of exercise by pushing the wheelchair around, then when I got tired, I just hopped in.
Then yesterday we went to Office Depot and Target to get some organizational things. Geez, I have been on a mission to get things in order after being away for so long. I feels like a real homecoming. I really want to stay out of the hospital.
Other than that, I have just been needlepointing and keeping my hands busy. It is really helpful. I have lots to work on!!
The final thing I am going to say for now is that I got a new doctor. I am kind of unsure how it even happened. My dr. was out of town and Dr. Otero just happened to fill in. He is so amazing. His bedside manner is amazing, I feel like he is part of the team. He said, that he thinks about what it would be like if he was in my position and then treats his patients from that perspective. Like Lane said, a phenomenological doctor, how rare is that!! Or should I just say empathetic. When we saw me for chemo he lit up and said I looked great--that the numbers are one thing, but as a physician it is great to see his patients looking so much better (or something like that). He also commented on the lymphnodes on my neck, that they have diminished in the last week.
This is it everyone...the last chemo didn't work. He's got me on a new aggressive one, so pray for me good and hard that my numbers keep moving in the right direction! (Already 2 of my liver functions are in the normal range!!
It is going to continue to be a long fight, but I feel like i am in a much better place to fight.
I love you all and appreciated all the cards and gifts I returned to when I got home. I feel all the love and prayers, please keep them coming, I can't do this without everybody.
Love,
Angel
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