Shawn and his friends have decided it probably came from line noise. We don't have a phone line but do have DSL and if the line got hit and there was a surge then it might have made the phone ring. The first time Shawn was home and it interupted his Internet so that fits there.
I'm stuborn. I still think God used "line noise" to get to me today. Regardless I have disconnected that phone from the wall so if it happens again I know it isn't line noise. I don't expect it to happen again because I think it had a purpose.
If it was line noise it is still odd that the phone had the ringer turned off and still rang like that....
Saturday, September 13, 2008
Whoa. A phone call from God?
I have posted about this on a couple of sites I feel comfortable at but I still think they'll all read it and think I'm nuts. I don't care because I know I'm not.
I'm still awaiting my pathology reports but today for the first time I was able to clear my head and focus on preparing the lesson for the Sunday school class I have began teaching (started last week--didn't go so hot). I have been fasting for a while after reading a book about the power of it. I thought "hey, can't hurt". Right?
We do not have a home phone line. We have a cell phone. We had our home phone disconnected around 2 years ago because we are very broke financially. Anyway, I was sitting on the bed going over tomorrow's lesson on Adam and Eve and choices. I had already wondered if I should quit teaching because I'm in an unknown place with my health. I felt insecure but sucked it up and tried to have it stick to me (it's difficult for me to remember things thanks to chemo ruining my short-term-memory).
O.k., we have a phone in our bathroom and our bathroom is very close to the bedroom as our house is small. This phone only halfway worked when we did have a land line. It was here when we moved in. It belonged to the lady who lived here before us.
As I live and breathe the thing started to ring.
I have thought unti like the past hour that I've lost it. It rang and I don't mean a flippant 1 tone ring that could have been my ears. It rang 5 times before I realized Shawn hadn't changed his ring tone and it wasn't my kid's toy.
I picked it up.
Silence.
I hung it up, gulped, and said "ah well it's the weather--maybe an earthquake."
Then I went back to the bed to study and AGAIN
Six times this time. I had tried to get to my cell to call Shawn and have him hear it but when I thought "I'm losing it" it quit ringing which really had me convinced I had in fact lost it.
I went into the den to post on the sites I mentioned above and thought "if it did it again I KNOW I am not nuts."
Soooo....
It rang AGAIN. Three times!
O.k., freaking out. I laughingly called Shawn who had taken the kids to a birthday party and we said yeah it was a ghost. I called our old number and it said "this number has been disconnected or is no longer in service."
On one of the sites someone asked me "do you know any verses of the bible that are significant that have 5-6-3 in them?" I hadn't thought of the bible though I did go back to finish what I was doing after posting. I looked up 5:63 and none of the bible books go that high.
I thought it served me right for being so arrogant to think God would speak to me like that and almost let it pass. I wanted to be sure I hadn't missed anything so I googled 5:63 and 2 different books have a 63:5---Psalm and Isaiah
I'll start with Psalm because it was the first I saw.
A psalm of David, when he was in the wilderness of Judah. 2 O God, you are my God-- for you I long! For you my body yearns; for you my soul thirsts, Like a land parched, lifeless, and without water. 3 So I look to you in the sanctuary to see your power and glory. 4 2 For your love is better than life; my lips offer you worship! 5 I will bless you as long as I live; I will lift up my hands, calling on your name. 6 My soul shall savor the rich banquet of praise, with joyous lips my mouth shall honor you! 7 When I think of you upon my bed, through the night watches I will recall 8 That you indeed are my help, and in the shadow of your wings I shout for joy. 9 My soul clings fast to you; your right hand upholds me. 10 But those who seek my life will come to ruin; they shall go down to the depths of the earth! 11 They shall be handed over to the sword and become the prey of jackals! 12 3 But the king shall rejoice in God; all who swear by the Lord shall exult, for the mouths of liars will be shut!
O.k., I have been on my first true fast so I bolded the part about soul thirsting. "Calling" on your name--it was 3 seperate phone calls for pete's sake! "When I think of you upon my bed"--where was I 2 of the 3 times it happened? On my bed studying for tomorrow's lesson!
I'm not including all of Isaiah 63 because it is huge and verse 5 is enough to have answered one of my questions
I looked, and there was (A)no one to help,And I was astonished and there was no one to uphold;So My (B)own arm brought salvation to Me,And My wrath upheld Me
Earlier in the day it had crossed my mind not to teach because of all the things going on and being insecure and then I saw this. In context and even here really it's easy to see what it is about. The heading of my bible says "God's day of vengence and redemption" and it is told from what I at least saw as his point of view.
Now I'm wondering about it all and what it means. I do believe I should stick with teaching the kids. Still in my head I am saying this didn't really happen but God answered another prayer I've had lately. I have wanted to have his prescence closer and to sense him more in the tangible things.
How tangible is a phone call from a phone that has no service and hasn't worked in four years? Not just once that I might have ignored but three times? Not just three flippant rings but rings of a certain length that lead me to the bible to find this?
Maybe I heard nothing and am losing it. Maybe it was the result of an earthquake or the leftovers of Hurricane What'shisname on the way and they were working on the power (I live 600+ miles from Galveston but we are still expected to have rain and possible storms)? Maybe it was the ghost of the lady who owned the phone (lol). All this went through my head until I took seriously looking into the bible.
I have been saved since I was 13 but didn't get off my keester and try to grow until this past year. Already I have had a very spiritual experience that proved to me God was here and now this. I can't argue with a phone call that kept on--3 times in a 30 minute period. It was very much that phone's ring and not my ears.
My favorite song for well over a year has been Casting Crowns' "The Word is Alive". That's the song I had in my head during my masectomy last Feb. Anyway, the words don't feel as distant to me any more. It really IS alive in the lives of everyone. Getting saved isn't all there is. Testimony grows with every passing day even though it's so easy not to see it a lot of times.
Now I look at the paper that shows where all the polyps are in my GI tract, still scared, still not wanting it to be cancer because I know if it is that's probably it for my life but I feel safe no matter what. It's so weird.
I was 13 when I was saved.
I'm 31 now.
Too many wasted years in there.
I'm still awaiting my pathology reports but today for the first time I was able to clear my head and focus on preparing the lesson for the Sunday school class I have began teaching (started last week--didn't go so hot). I have been fasting for a while after reading a book about the power of it. I thought "hey, can't hurt". Right?
We do not have a home phone line. We have a cell phone. We had our home phone disconnected around 2 years ago because we are very broke financially. Anyway, I was sitting on the bed going over tomorrow's lesson on Adam and Eve and choices. I had already wondered if I should quit teaching because I'm in an unknown place with my health. I felt insecure but sucked it up and tried to have it stick to me (it's difficult for me to remember things thanks to chemo ruining my short-term-memory).
O.k., we have a phone in our bathroom and our bathroom is very close to the bedroom as our house is small. This phone only halfway worked when we did have a land line. It was here when we moved in. It belonged to the lady who lived here before us.
As I live and breathe the thing started to ring.
I have thought unti like the past hour that I've lost it. It rang and I don't mean a flippant 1 tone ring that could have been my ears. It rang 5 times before I realized Shawn hadn't changed his ring tone and it wasn't my kid's toy.
I picked it up.
Silence.
I hung it up, gulped, and said "ah well it's the weather--maybe an earthquake."
Then I went back to the bed to study and AGAIN
Six times this time. I had tried to get to my cell to call Shawn and have him hear it but when I thought "I'm losing it" it quit ringing which really had me convinced I had in fact lost it.
I went into the den to post on the sites I mentioned above and thought "if it did it again I KNOW I am not nuts."
Soooo....
It rang AGAIN. Three times!
O.k., freaking out. I laughingly called Shawn who had taken the kids to a birthday party and we said yeah it was a ghost. I called our old number and it said "this number has been disconnected or is no longer in service."
On one of the sites someone asked me "do you know any verses of the bible that are significant that have 5-6-3 in them?" I hadn't thought of the bible though I did go back to finish what I was doing after posting. I looked up 5:63 and none of the bible books go that high.
I thought it served me right for being so arrogant to think God would speak to me like that and almost let it pass. I wanted to be sure I hadn't missed anything so I googled 5:63 and 2 different books have a 63:5---Psalm and Isaiah
I'll start with Psalm because it was the first I saw.
A psalm of David, when he was in the wilderness of Judah. 2 O God, you are my God-- for you I long! For you my body yearns; for you my soul thirsts, Like a land parched, lifeless, and without water. 3 So I look to you in the sanctuary to see your power and glory. 4 2 For your love is better than life; my lips offer you worship! 5 I will bless you as long as I live; I will lift up my hands, calling on your name. 6 My soul shall savor the rich banquet of praise, with joyous lips my mouth shall honor you! 7 When I think of you upon my bed, through the night watches I will recall 8 That you indeed are my help, and in the shadow of your wings I shout for joy. 9 My soul clings fast to you; your right hand upholds me. 10 But those who seek my life will come to ruin; they shall go down to the depths of the earth! 11 They shall be handed over to the sword and become the prey of jackals! 12 3 But the king shall rejoice in God; all who swear by the Lord shall exult, for the mouths of liars will be shut!
O.k., I have been on my first true fast so I bolded the part about soul thirsting. "Calling" on your name--it was 3 seperate phone calls for pete's sake! "When I think of you upon my bed"--where was I 2 of the 3 times it happened? On my bed studying for tomorrow's lesson!
I'm not including all of Isaiah 63 because it is huge and verse 5 is enough to have answered one of my questions
I looked, and there was (A)no one to help,And I was astonished and there was no one to uphold;So My (B)own arm brought salvation to Me,And My wrath upheld Me
Earlier in the day it had crossed my mind not to teach because of all the things going on and being insecure and then I saw this. In context and even here really it's easy to see what it is about. The heading of my bible says "God's day of vengence and redemption" and it is told from what I at least saw as his point of view.
Now I'm wondering about it all and what it means. I do believe I should stick with teaching the kids. Still in my head I am saying this didn't really happen but God answered another prayer I've had lately. I have wanted to have his prescence closer and to sense him more in the tangible things.
How tangible is a phone call from a phone that has no service and hasn't worked in four years? Not just once that I might have ignored but three times? Not just three flippant rings but rings of a certain length that lead me to the bible to find this?
Maybe I heard nothing and am losing it. Maybe it was the result of an earthquake or the leftovers of Hurricane What'shisname on the way and they were working on the power (I live 600+ miles from Galveston but we are still expected to have rain and possible storms)? Maybe it was the ghost of the lady who owned the phone (lol). All this went through my head until I took seriously looking into the bible.
I have been saved since I was 13 but didn't get off my keester and try to grow until this past year. Already I have had a very spiritual experience that proved to me God was here and now this. I can't argue with a phone call that kept on--3 times in a 30 minute period. It was very much that phone's ring and not my ears.
My favorite song for well over a year has been Casting Crowns' "The Word is Alive". That's the song I had in my head during my masectomy last Feb. Anyway, the words don't feel as distant to me any more. It really IS alive in the lives of everyone. Getting saved isn't all there is. Testimony grows with every passing day even though it's so easy not to see it a lot of times.
Now I look at the paper that shows where all the polyps are in my GI tract, still scared, still not wanting it to be cancer because I know if it is that's probably it for my life but I feel safe no matter what. It's so weird.
I was 13 when I was saved.
I'm 31 now.
Too many wasted years in there.
Friday, September 12, 2008
Still no results
It has been a week since I had the colonoscopy/endoscopy/upper GI. Still no results. Dare I hope I get something in the mail that says "nonadenomous benign polyps" for all of them? I can pray.
Saturday, September 6, 2008
It's been a while...
Not been so hot. Finally had the GI tract testing done. We were afraid I wasn't cleaned out enough because I kept throwing up the prep. Technically I wasn't but it worked. He saw polyps. Lots of them from my stomach on down to my rectum. Centering in the sigmoid section which is where the hyperactivity showed on the PET scan back in 2006. I had a sigmoidoscopy done then that showed nothing abnormal so apparently whatever this is was microscopic at that point. Not so much any more.
I'm angry. I'm angry at myself for being angry because who am I to expect more out of life? Who am I to not live what I have and be completely happy with it? I've lost people dear to me long before they were 31 years old. There's a chance this is benign stuff. If it isn't I'll share the same fate as my paternal grandfather who I inherited the condition from and never even met. My kids will grow up with either no memory of me or very vague memories of me being sick---NOT what I want.
I see all kinds of petty stuff going on. Petty things people think and worry about and it pisses me off. It's usually the petty people who tell me not to sweat the small stuff. The petty people who say "well if I had cancer before I wouldn't smoke/lay in the tanning bed/fill-in-the-blank-etc either". What makes them feel so gosh darn entitled? That's what I want to know. Why am I stuck spending much of my life as a guinea pig staring at hospital ceilings waiting to have needles stuck in me or like yesterday--scopes shoved up both ends.
I was awake yesterday. Brutally so. Due to my anti-anxiety meds I wasn't knocked out even close to where I should have been but legally they couldn't give me more. Soooo, next time my colonsocopy/endoscopy will be an operating room procedure.
I'm scared. I don't want to have my colon removed and have a bag for poop. I don't want to die. I'm mad that I probably gave this to my kids and people are out there worrying over the simplest things.
I just want to scream at them to wake the hell up but it wouldn't do any good. If I could go back to when I was 16 and tell myself "you'll be ok until you are 30" I would make different decisions IF I knew then what I know now.
Youth AND health is wasted on the young.
Tomorrow was supposed to be my first day teaching Sunday school and now due to damage to my throat from the EGD tube, pain from polyp removal, and continued diarrhea from Thursday's laxative I can't even do that much.
I feel like a lump of a lump of a lump of a lump of a lump of a lump
I'm angry. I'm angry at myself for being angry because who am I to expect more out of life? Who am I to not live what I have and be completely happy with it? I've lost people dear to me long before they were 31 years old. There's a chance this is benign stuff. If it isn't I'll share the same fate as my paternal grandfather who I inherited the condition from and never even met. My kids will grow up with either no memory of me or very vague memories of me being sick---NOT what I want.
I see all kinds of petty stuff going on. Petty things people think and worry about and it pisses me off. It's usually the petty people who tell me not to sweat the small stuff. The petty people who say "well if I had cancer before I wouldn't smoke/lay in the tanning bed/fill-in-the-blank-etc either". What makes them feel so gosh darn entitled? That's what I want to know. Why am I stuck spending much of my life as a guinea pig staring at hospital ceilings waiting to have needles stuck in me or like yesterday--scopes shoved up both ends.
I was awake yesterday. Brutally so. Due to my anti-anxiety meds I wasn't knocked out even close to where I should have been but legally they couldn't give me more. Soooo, next time my colonsocopy/endoscopy will be an operating room procedure.
I'm scared. I don't want to have my colon removed and have a bag for poop. I don't want to die. I'm mad that I probably gave this to my kids and people are out there worrying over the simplest things.
I just want to scream at them to wake the hell up but it wouldn't do any good. If I could go back to when I was 16 and tell myself "you'll be ok until you are 30" I would make different decisions IF I knew then what I know now.
Youth AND health is wasted on the young.
Tomorrow was supposed to be my first day teaching Sunday school and now due to damage to my throat from the EGD tube, pain from polyp removal, and continued diarrhea from Thursday's laxative I can't even do that much.
I feel like a lump of a lump of a lump of a lump of a lump of a lump
Tuesday, August 19, 2008
See July--continuation from beginning to get to here
I don't remember when we first went to St. Jude in Memphis. I just know that my mom's mood was dark and I was very confused because she insisted I was going to be just fine. I wondered about school and how I would catch up but it wasn't the first thing on my mind. When the doctor said I would need an operation as a biopsy surgery to where they found the original tumor, I grew angry. My dad asked "Couldn't she wait a while she's not even over the other." My mom and the doctor both said that if I had metastatic disease then it would be best to know it then to start treatment. I asked if I would be able to try out for pee-wee cheerleading which started in the 4th grade and was told absolutely not. This was the most heartbreaking news of all for me, I think. I didn't catch how serious what I had been going through was.
Halloween 1986 came and went. I was a clown that year and we have a picture of me attempting to smile but it wasn't easy. I knew I would have surgery again in a few days and wasn't looking forward to it. I had a habit of swallowing gum when I was 9. After my surgery my dad joked that the doctor couldn't get in due to my insides being stuck together. It was a lie. He did get in.
Back in 1986, St Jude hospital used St. Joseph's OR and there was a tunnel that connected them. I remember being pushed back and hurting very, very badly. The orderly wouldn't slow down though. He knew I needed to get to the room and that be it.
I don't remember a lot until the phone call when mom was told it looked like the cancer hadn't spread. Also I remember being asked to get up and walk around. Oh how I hated it. I moaned and groaned. Until I saw a little 5 year old practically racing around the nurse's desk not moaning at all.
I couldn't let someone a little more than half my age outdo me. Of course I didn't realize he had a brain operation and it wasn't going to hurt him as much to walk as it did me because my abdomen had been cut. This time the doctors tried to leave my belly button but the first surgery had mutilated it. I had a huge gash on my stomach and the wound was still yellow in part due to the betadine bath in the St Jude bath tub the night before and the betadine from surgery. It was U-G-L-Y.
I remembered back to the one before when my mom and the doctor discussed scars and keeping it where I would be able to wear whatever I wanted. Yeah, well, those days were over because 6 years later I would have surgery in the same spot with a much longer incision and it became a glaring scar that everyone could see. My mom and I fought when I was 16 because I still wanted to wear a two piece bathing suit and she thought I wouldn't want to be asked about my scars. I won the fight. I don't remember being asked about it specifically until I went to a different school in the 10th grade and showed it to prove I had went through ovarian cancer. No one believed me but they would a few months later. This all comes later.
I remember a nurse bribing me to eat a grilled cheese sandwich by saying I couldn't go home the next day if I didn't eat it. I cried and I cried. I wanted home from St Jude hospital. I already knew I would feel better when I got there--something that always held true so I choked the sandwich down in between tears. I got to go home. I thought things were going to be normal in a couple of weeks when allowed back in school.
Things couldn't have been much more abnormal.
First of all, I learned of having cancer from my best friend who had learned from my reading teacher telling our class. As a 9 year old I knew nothing about cancer and neither did any of them. When I came back to school, there was a lot of odd feeling. I was allowed to leave to my locker early so no one would bump into my stomach with their books so that may have bred some resentment. I was given more attention from the teachers than I had been. My then best friend said she wished she had a tumor and I told her she didn't know what she was talking about and that she could have mine. Special attention or not I knew it sucked.
Going back to school at this time cooincided with me crawling into a shyness shell I still remain in to this day. From the 4th grade on, I was labelled "Most Bashful" in our "Who's who?" I hadn't been the shy kid before. As a matter of fact, I had been almost bossy but after rejection upon returning to school I was afraid to speak to anyone. There were times kids would cross the hall from me because they honestly thought I was contagious.
Between 1986 and 1992, I returned to St Jude hospital for ultrasounds, ct scans, etc each 3 month, 6 month, and finally one year block. It was on my first one year block that things came unraveled. During this period, I had went through bilateral breast biopsies twice that showed cysts but nothing indicating cancer. Until that very first yearly checkup when my BP was twice what it should have been and my bad mood, going to bed at 4 p.m., and general uneasiness found its cause.
It was about 3 months into a new school year at a new school. I had transferred because I wanted to force myself to not be so shy and to have more friends. It wasn't happening at the larger school I attended so by freedom of choice I went to a small school that no longer exists. Even there I would be teased but the difference is that they worked closely with me and I would graduate with my class in 1995 like I was supposed to but that comes later.
Looking back on that period, I see myself in the two week wait before my laparoscopy to find what was blocking my kidney and causing my blood pressure to rise. I would ask to be excused to the restroom, pull my legs up in the stall where no one knew I was in there, and take my blood pressure. I had been given procardia to take when it got past a certain level and I had to watch it closely. I was ashamed of this and embarassed but each time I tested it was high enough for medication. This went on for two weeks because the doctors thought my blockage was a lymph node.
It wasn't.
Halloween 1986 came and went. I was a clown that year and we have a picture of me attempting to smile but it wasn't easy. I knew I would have surgery again in a few days and wasn't looking forward to it. I had a habit of swallowing gum when I was 9. After my surgery my dad joked that the doctor couldn't get in due to my insides being stuck together. It was a lie. He did get in.
Back in 1986, St Jude hospital used St. Joseph's OR and there was a tunnel that connected them. I remember being pushed back and hurting very, very badly. The orderly wouldn't slow down though. He knew I needed to get to the room and that be it.
I don't remember a lot until the phone call when mom was told it looked like the cancer hadn't spread. Also I remember being asked to get up and walk around. Oh how I hated it. I moaned and groaned. Until I saw a little 5 year old practically racing around the nurse's desk not moaning at all.
I couldn't let someone a little more than half my age outdo me. Of course I didn't realize he had a brain operation and it wasn't going to hurt him as much to walk as it did me because my abdomen had been cut. This time the doctors tried to leave my belly button but the first surgery had mutilated it. I had a huge gash on my stomach and the wound was still yellow in part due to the betadine bath in the St Jude bath tub the night before and the betadine from surgery. It was U-G-L-Y.
I remembered back to the one before when my mom and the doctor discussed scars and keeping it where I would be able to wear whatever I wanted. Yeah, well, those days were over because 6 years later I would have surgery in the same spot with a much longer incision and it became a glaring scar that everyone could see. My mom and I fought when I was 16 because I still wanted to wear a two piece bathing suit and she thought I wouldn't want to be asked about my scars. I won the fight. I don't remember being asked about it specifically until I went to a different school in the 10th grade and showed it to prove I had went through ovarian cancer. No one believed me but they would a few months later. This all comes later.
I remember a nurse bribing me to eat a grilled cheese sandwich by saying I couldn't go home the next day if I didn't eat it. I cried and I cried. I wanted home from St Jude hospital. I already knew I would feel better when I got there--something that always held true so I choked the sandwich down in between tears. I got to go home. I thought things were going to be normal in a couple of weeks when allowed back in school.
Things couldn't have been much more abnormal.
First of all, I learned of having cancer from my best friend who had learned from my reading teacher telling our class. As a 9 year old I knew nothing about cancer and neither did any of them. When I came back to school, there was a lot of odd feeling. I was allowed to leave to my locker early so no one would bump into my stomach with their books so that may have bred some resentment. I was given more attention from the teachers than I had been. My then best friend said she wished she had a tumor and I told her she didn't know what she was talking about and that she could have mine. Special attention or not I knew it sucked.
Going back to school at this time cooincided with me crawling into a shyness shell I still remain in to this day. From the 4th grade on, I was labelled "Most Bashful" in our "Who's who?" I hadn't been the shy kid before. As a matter of fact, I had been almost bossy but after rejection upon returning to school I was afraid to speak to anyone. There were times kids would cross the hall from me because they honestly thought I was contagious.
Between 1986 and 1992, I returned to St Jude hospital for ultrasounds, ct scans, etc each 3 month, 6 month, and finally one year block. It was on my first one year block that things came unraveled. During this period, I had went through bilateral breast biopsies twice that showed cysts but nothing indicating cancer. Until that very first yearly checkup when my BP was twice what it should have been and my bad mood, going to bed at 4 p.m., and general uneasiness found its cause.
It was about 3 months into a new school year at a new school. I had transferred because I wanted to force myself to not be so shy and to have more friends. It wasn't happening at the larger school I attended so by freedom of choice I went to a small school that no longer exists. Even there I would be teased but the difference is that they worked closely with me and I would graduate with my class in 1995 like I was supposed to but that comes later.
Looking back on that period, I see myself in the two week wait before my laparoscopy to find what was blocking my kidney and causing my blood pressure to rise. I would ask to be excused to the restroom, pull my legs up in the stall where no one knew I was in there, and take my blood pressure. I had been given procardia to take when it got past a certain level and I had to watch it closely. I was ashamed of this and embarassed but each time I tested it was high enough for medication. This went on for two weeks because the doctors thought my blockage was a lymph node.
It wasn't.
Well, I was going to create a new section
but I completely forgot how?
No new news in my life really. I will be seeing the GYN late in Sept about having my uterus removed. I am really not looking forward to this and I may opt to have endometrial biopsies each year instead. All the surgery has caught up to me. If I can't have this done when they do my nipples then I will wait.
I can't believe I had my masectomy on Feb 28th and I am STILL not finished with the process of getting new breasts. I even settled for a B cup and I'm still waiting. Apparently it takes a while for implants to settle and this explains my dimpling and they can't do anything with creating nipples until things have settled. I'm starting to grow used to my body looking this way. Have I completely accepted it? No chance but I'm working on it. I know God has reasons for even the worse things that happen so I'm clinging to him and trying not to ask questions. Sometimes it is very difficult not to ask them though.
I'm amazed at how many women are being diagnosed with breast cancer prior to age 40. I always thought I wouldn't have anything to worry about before then--not really. My fibrocystic stuff was always benign and I was told not to worry because my young age worked in my favor but since my diagnosis I have had an online aquaintance be diagnosed and a sister of an online friend diagnosed. She asked if it was because of something new happening and I like to think it's because we are just catching things sooner.
I drive myself crazy sometimes. I looked up how high the odds are of cancer the younger you have ct scans. I can't remember but it was insane. I had my first ct scan in 1978 and was not even a year old. I've had a bunch since then plus MRIs and all kinds of tests.
I look at the cancer cure rates now and am no longer as impressed. Now I understand these reflect 5 year cure rates and many people go on to have later relapses or be diagnosed with another type. My first dysgerminoma technically went down as cured but at 6 years in remission it came back. Who knows what the real odds are? That's what is so freaking scary about this disease. What sucks is waiting 5 years to hear CURE only to have year #6 bring the cancer back. I'm not griping though. I once read a case where dysgerminoma came back after TWENTY years. I will be free and clear from that one for 16 years on Feb 15, 2009. Then 13 days later I will celebrate 1 year since the ductal in situ was diagnosed.
I can't help but worry about if they'll find cancer in my colon or small intestine--those are the next to be tested. Or somewhere on my skin since I worshipped the tanning bed for 6 years every single day from age 15-21. But with all this I have to continue to remember that life is something that should be taken day by day. I've worried so much away as it is. I'm tired.
No new news in my life really. I will be seeing the GYN late in Sept about having my uterus removed. I am really not looking forward to this and I may opt to have endometrial biopsies each year instead. All the surgery has caught up to me. If I can't have this done when they do my nipples then I will wait.
I can't believe I had my masectomy on Feb 28th and I am STILL not finished with the process of getting new breasts. I even settled for a B cup and I'm still waiting. Apparently it takes a while for implants to settle and this explains my dimpling and they can't do anything with creating nipples until things have settled. I'm starting to grow used to my body looking this way. Have I completely accepted it? No chance but I'm working on it. I know God has reasons for even the worse things that happen so I'm clinging to him and trying not to ask questions. Sometimes it is very difficult not to ask them though.
I'm amazed at how many women are being diagnosed with breast cancer prior to age 40. I always thought I wouldn't have anything to worry about before then--not really. My fibrocystic stuff was always benign and I was told not to worry because my young age worked in my favor but since my diagnosis I have had an online aquaintance be diagnosed and a sister of an online friend diagnosed. She asked if it was because of something new happening and I like to think it's because we are just catching things sooner.
I drive myself crazy sometimes. I looked up how high the odds are of cancer the younger you have ct scans. I can't remember but it was insane. I had my first ct scan in 1978 and was not even a year old. I've had a bunch since then plus MRIs and all kinds of tests.
I look at the cancer cure rates now and am no longer as impressed. Now I understand these reflect 5 year cure rates and many people go on to have later relapses or be diagnosed with another type. My first dysgerminoma technically went down as cured but at 6 years in remission it came back. Who knows what the real odds are? That's what is so freaking scary about this disease. What sucks is waiting 5 years to hear CURE only to have year #6 bring the cancer back. I'm not griping though. I once read a case where dysgerminoma came back after TWENTY years. I will be free and clear from that one for 16 years on Feb 15, 2009. Then 13 days later I will celebrate 1 year since the ductal in situ was diagnosed.
I can't help but worry about if they'll find cancer in my colon or small intestine--those are the next to be tested. Or somewhere on my skin since I worshipped the tanning bed for 6 years every single day from age 15-21. But with all this I have to continue to remember that life is something that should be taken day by day. I've worried so much away as it is. I'm tired.
Tuesday, July 29, 2008
I'm creating another new blog section
It's time. After Saturday, I feel like I'm getting a fresh begninning.
When I started this blog, I shivered at the thought of Shawn reading it. Because I shared it with you guys, my online friends, and no one laughed at me (or at least told me they laughed at me) I decided it was safe to show Shawn. I didn't know how he would react.
Imagine my surprise when I saw my husband CRY for maybe the third time in the pretty much 8 years we have known each other!!!! He told me I should start that book and if it did publish then we would worry about the $$ and how it affects my medical later on.
I was surprised to see him cry and I was glad to know it affected him like that. I'm still home. No mental instituition. Even though that day took all I had mentally, I wish for many more days like that--where everything is clear and I feel Christ's prescence so near. I no longer see God as a punitive God. I am reading this book called "Beyond the Veil" it is by Alice Smith and it is teaching me so much. She talked about how intercessors often feel depression because that's actually a call from God to pray whether for them or for someone else.
I saw that yesterday.
I have a friend who I have known since the third grade. That's longer than I have heard the word "cancer" without it being in regard to my grandfather. Yesterday God gave me the opportunity to help her out. I wasn't able to even bring him up but I showed her a part of the love his son has showed me. I did it without her even knowing. I don't know her spiritual life but I saw very strong signs of the same OCD and anxiety I've battled for years. She lost her wallet. I was there to calm her down. It seems so small and insignificant (my help) but after Saturday I know that sometimes those small things matter more than we know. Christ cares about small things. He cares about me even though to him there have been so many Christians it must be like we are ants and he is the king ant. Except for him the word king doesn't exactly fit because he is much more than that. A constant prescence whether felt or not. He feels sadness when we sin and that makes me want to make an even bigger effort not to do it. I'm a changed woman over ONE day!
He revealed to me a changed marriage. He revealed to me that I've slipped in regards to teaching the kids about him though even before I had began starting them to pray. I guess mommy didn't want to believe she no longer had a baby but a small child capable of true prayers.
Now I'm daring to dream and hope about each day because I know I'm here for a longer haul than I ever thought. I have no illusion that the medical things won't still be there. The migraine that woke me up at 4:30 am this morning was a reminder of that. The pain doesn't seem so much though. It's no longer going deep enough to get to my soul. In one day God showed me through his son that 1) my marriage is saved and if it is meant to be Shawn and I will see our 50th wedding anniversary 2) he still has a purpose for me and can use me and even more importantly that I know I am on track with that purpose 3) when we sin, he feels sadness. When Shawn had a lapse due to exhaustion that day and got loud with me I wasted no time with the tears. I honestly felt like I felt what Christ was feeling! Of course not to the full extent but I was upset Shawn was angry and that he was feeling bad. It made me cry.
Now THIS is exciting.
When I let Shawn read the blog post, he said "Now that explains a whole lot about why you have been acting differently". Isn't that key to knowing something sincere has happened? Also my friend who had the panic attack yesterday just looked at me and said "something has changed about you---I can't put my finger on it but you seem SO strong. I know you hate hearing that because you said anyone would go through chemo and cancer if they had to but you do it and it doesn't seem to weaken you. You seem stonger."
I'll see her again sooner than I would have. I have an opportunity to share my witness which I think she needs to read (I can write it better than say it). I don't know what her relationship with the Lord is like and it is none of my business but I feel drawn to share for some reason--the same way I felt with Shawn last night. I thought in my head "God, are you sure? He hasn't shown much interest in you beyond church on Sunday." Well, there was still the small voice saying "do it!"
Now I feel more brave. With Christ all things are possible. Those aren't just empty words but the real deal. We don't deserve it but he loves us anyway. I got my wish to feel unconditional love that day. He sent it to me through the Spirit. I saw it from my kids. Now that I know he cares enough about this "ant" I also know he cares about his other ants. I felt his unconditional love for me and a heightened sense of the unconditional love of Hannah more so than Owen but definately from both.
I'm so glad what I felt Saturday isn't completely gone. Yesterday wasn't a day of revelation but I asked for only enough for me to be able to understand and endure. I don't expect an end to it but do imagine it will be spaced out. That's ok. He knows best.
And gone is any resentment I had over the cancers and this Cowden Syndrome. Now I will share that I have felt resentment. It's tough seeing moms better able to provide for their kids because they can work outside the home and knowing my health has kept me from working to help has been a sense of shame for me. A better word may be sorrow. It was revealed to me not to feel that way and that I have more important work at home.
The whole day showed me that my life has been restored in so many ways----anxiety next to gone, marriage is better than it ever was, my new surgeries are the right thing to do and not to fear what will happen as a result. Now writing the words "I love Jesus and am SO grateful for his gift" have more meaning. That deadness is gone. The realization that something I wrote touched my husband's heart is one of the best things. Knowing several people said what I wrote made them have tears in their eyes makes me 110% sure that really was my Jesus and not just a really, really good day. Knowing I couldn't sleep until I got that written down makes me know it was a prompting to write it down not only for my own benefit but for how it could benefit others because the next morning I woke up as I thought--less there in the revelatory phase but still that prescence and the changes aren't all gone.
It's showing in my behavior ya'll. It's real. No more empty prayers. My plan is to study more in the area of apologetics to be better equipped to share my testimony with people and to be able to support it with true facts. My prayer life is about to increase exponetially. I know with a certainty Saturday came as an answer to the prayer I had at the altar that day. I said "ok God, so are you tearing me down to build me up? What's the deal?" Now I know. I can make Sat July 26th as a day to celebrate each year. I had been celebrating Feb 15th because it ended chemo and now I'm changing it as I have a day to remember not fearing cancer and that's more of a special day than most I can think of.
When I started this blog, I shivered at the thought of Shawn reading it. Because I shared it with you guys, my online friends, and no one laughed at me (or at least told me they laughed at me) I decided it was safe to show Shawn. I didn't know how he would react.
Imagine my surprise when I saw my husband CRY for maybe the third time in the pretty much 8 years we have known each other!!!! He told me I should start that book and if it did publish then we would worry about the $$ and how it affects my medical later on.
I was surprised to see him cry and I was glad to know it affected him like that. I'm still home. No mental instituition. Even though that day took all I had mentally, I wish for many more days like that--where everything is clear and I feel Christ's prescence so near. I no longer see God as a punitive God. I am reading this book called "Beyond the Veil" it is by Alice Smith and it is teaching me so much. She talked about how intercessors often feel depression because that's actually a call from God to pray whether for them or for someone else.
I saw that yesterday.
I have a friend who I have known since the third grade. That's longer than I have heard the word "cancer" without it being in regard to my grandfather. Yesterday God gave me the opportunity to help her out. I wasn't able to even bring him up but I showed her a part of the love his son has showed me. I did it without her even knowing. I don't know her spiritual life but I saw very strong signs of the same OCD and anxiety I've battled for years. She lost her wallet. I was there to calm her down. It seems so small and insignificant (my help) but after Saturday I know that sometimes those small things matter more than we know. Christ cares about small things. He cares about me even though to him there have been so many Christians it must be like we are ants and he is the king ant. Except for him the word king doesn't exactly fit because he is much more than that. A constant prescence whether felt or not. He feels sadness when we sin and that makes me want to make an even bigger effort not to do it. I'm a changed woman over ONE day!
He revealed to me a changed marriage. He revealed to me that I've slipped in regards to teaching the kids about him though even before I had began starting them to pray. I guess mommy didn't want to believe she no longer had a baby but a small child capable of true prayers.
Now I'm daring to dream and hope about each day because I know I'm here for a longer haul than I ever thought. I have no illusion that the medical things won't still be there. The migraine that woke me up at 4:30 am this morning was a reminder of that. The pain doesn't seem so much though. It's no longer going deep enough to get to my soul. In one day God showed me through his son that 1) my marriage is saved and if it is meant to be Shawn and I will see our 50th wedding anniversary 2) he still has a purpose for me and can use me and even more importantly that I know I am on track with that purpose 3) when we sin, he feels sadness. When Shawn had a lapse due to exhaustion that day and got loud with me I wasted no time with the tears. I honestly felt like I felt what Christ was feeling! Of course not to the full extent but I was upset Shawn was angry and that he was feeling bad. It made me cry.
Now THIS is exciting.
When I let Shawn read the blog post, he said "Now that explains a whole lot about why you have been acting differently". Isn't that key to knowing something sincere has happened? Also my friend who had the panic attack yesterday just looked at me and said "something has changed about you---I can't put my finger on it but you seem SO strong. I know you hate hearing that because you said anyone would go through chemo and cancer if they had to but you do it and it doesn't seem to weaken you. You seem stonger."
I'll see her again sooner than I would have. I have an opportunity to share my witness which I think she needs to read (I can write it better than say it). I don't know what her relationship with the Lord is like and it is none of my business but I feel drawn to share for some reason--the same way I felt with Shawn last night. I thought in my head "God, are you sure? He hasn't shown much interest in you beyond church on Sunday." Well, there was still the small voice saying "do it!"
Now I feel more brave. With Christ all things are possible. Those aren't just empty words but the real deal. We don't deserve it but he loves us anyway. I got my wish to feel unconditional love that day. He sent it to me through the Spirit. I saw it from my kids. Now that I know he cares enough about this "ant" I also know he cares about his other ants. I felt his unconditional love for me and a heightened sense of the unconditional love of Hannah more so than Owen but definately from both.
I'm so glad what I felt Saturday isn't completely gone. Yesterday wasn't a day of revelation but I asked for only enough for me to be able to understand and endure. I don't expect an end to it but do imagine it will be spaced out. That's ok. He knows best.
And gone is any resentment I had over the cancers and this Cowden Syndrome. Now I will share that I have felt resentment. It's tough seeing moms better able to provide for their kids because they can work outside the home and knowing my health has kept me from working to help has been a sense of shame for me. A better word may be sorrow. It was revealed to me not to feel that way and that I have more important work at home.
The whole day showed me that my life has been restored in so many ways----anxiety next to gone, marriage is better than it ever was, my new surgeries are the right thing to do and not to fear what will happen as a result. Now writing the words "I love Jesus and am SO grateful for his gift" have more meaning. That deadness is gone. The realization that something I wrote touched my husband's heart is one of the best things. Knowing several people said what I wrote made them have tears in their eyes makes me 110% sure that really was my Jesus and not just a really, really good day. Knowing I couldn't sleep until I got that written down makes me know it was a prompting to write it down not only for my own benefit but for how it could benefit others because the next morning I woke up as I thought--less there in the revelatory phase but still that prescence and the changes aren't all gone.
It's showing in my behavior ya'll. It's real. No more empty prayers. My plan is to study more in the area of apologetics to be better equipped to share my testimony with people and to be able to support it with true facts. My prayer life is about to increase exponetially. I know with a certainty Saturday came as an answer to the prayer I had at the altar that day. I said "ok God, so are you tearing me down to build me up? What's the deal?" Now I know. I can make Sat July 26th as a day to celebrate each year. I had been celebrating Feb 15th because it ended chemo and now I'm changing it as I have a day to remember not fearing cancer and that's more of a special day than most I can think of.
Saturday, July 26, 2008
I'm whole even if my parts are at different medical places lol Read this. It isn't stupid
I know to some people what I am about to post may sound completely like I have lost my marbles but I can't sleep until I post this. I know that when it is posted I will sleep as soundly as my Owen does as I am for once completely psychologically, emotionally, spiritually, and finally physically (of course) exhausted.
Several weeks ago it started. I felt like God has slipped out of my prescence but I refused to believe he had. I asked for prayers everywhere I could think of to ask for prayer. They have been answered.
I had a couple of dreams that I'm not going to go into detail about because they are very personal. I will say that these dreams preceeded my going to the altar at church to rededicate myself so now I see them as being significant. At the time they were just very vivid dreams that stuck in my brain and I couldn't figure out why. Today God gave me those connections. Like I said, I am not going into detail because this is SO intensely personal and I don't want people thinking I am crazy because I'm not though at some points today I thought I was.
What I have asked the Lord for was restoration. A glimpse beyond the veil so to speak. To guide me and show me purpose. I thought he wasn't listening but boy did he deliver today in a HUGE way.
Everywhere I turned I saw things that I could relate to the Gospel. I spent this day entirely with my kids playing with them and loving them. I felt the love of Christ so completely clearly that I have tears right now typing about it. I know that this love came out too because my kids were so completely clingy to me. Right now they are fast asleep. They had a big day! When we prayed tonight Owen told me "God hears us?" I told him he absolutely does and to never doubt it. I think he may have been posing this as a sentence to me. Read on.
As I said everything seemed to be related to the Gospel. We saw home videos from 2 years ago and I saw how I treated my husband before he strayed. I was SO ashamed. I know my actions did not justify his but I understood more why he reacted as he had. I felt his sorrow in having reacted that way as well. I saw myself grow up on that film! It wasn't just Hannah growing physically. I was a completely different person--a total nag. Life sucked and I didn't care to say it. It was terrible but also terribly awesome. Today the pain of having 2 children rather than the 4 I wanted was taken away. I'm ready to lose my uterus. Christ showed me my hands are overflowing and I'll receive as many blessings as that family that has 17 children. Shawn made the right decision when Hannah was 6 weeks old though it wasn't for the reason he thought, I don't think.
I started thinking maybe I was dying and seeing my "life review" as the new-agers call it. The emotions of others were SO strong. As I said, I connected on a level with the kids that I never have before. I saw their need for a mom and felt Christ telling me "Andrea, quit your worrying about not being here for them. They need you." I have been studying the LDS faith for a while now and while not all of what I felt today clicked and made sense something did. I felt that these kids had a thinner veil over their eyes than I did. I felt so many emotions today I was convinced I was dying or going crazy. I kept asking Shawn "Am I nuts?" I think he thought I was going that way!
Today the kids showed me they still need me so I need to quit napping all the time, playing arcade games, reading books, and be more engaged. Christ told my heart that I have a responsibility to make good on what I said years ago and keep that veil thin for them so they can still see Christ there when they are older and ask him into their hearts. Their dependance on me while I was feeling Christ's love and showing it showed ME that I still have purpose--this one! Forget that stupid doctor saying "we'll try to keep you alive" this past week. I will be alive. I'm going to live to see my babies come to Christ on their own free will. I'm 110% certain of that!
I have never, ever had a day like today. At first I thought, maybe today was my salvation day? Maybe the Mormons were actually right about one other thing--maybe I had never completely felt the gift of the Holy Spirit but had felt its power? Today I got my answer in regard to their church and as sad as some of my friends will be to read it the answer I received isn't that the church is the complete truth but that it has truthful components as does the Baptist church. I know in my heart after today that anyone who needs revelation will receive it and that we don't need anyone to tell us what it means. Christ himself does through the Holy Spirit!
I realize today that with those dreams I had several weeks back and with the events of this day that God was preparing me to receive answers I needed to hear. He couldn't give it to me all at once or I would have went insane. He gave me just enough to leave me completely fulfilled and at a place I have never been in my life. I don't know if I was saved today. I don't know if what I felt before was just an emotional response and fear of Hell. All I know is that everything is still a-ok even 5 years after getting pregnant with Owen. Yes I have sinned. I felt that sadness today but I also felt utter forgiveness and a love that I can't put into words.
Well, my brain is ready to begin the Sabbath and get a rest lol. I have never been so completely involved with life like I was today. I had been wondering just how involved Christ is with each of us personally and today he showed me. Some things haven't changed--I still don't want his job. My soul isn't that strong but I do want to represent him for my kids, for my husband, and for my friends. So, it's time to put the cancer/Cowden's/money/petty worries to rest. I had thought about writing a book about my experiences before but didn't feel like the events were enough in themselves. I want to write about growing spiritually through pain. Today I told God I will replace a part of my arcade, reading, etc time and begin this process. I'm ready!
I'm posting this for me in case the veil starts to thicken again as I'm sure it will and I'm posting this for my friends who cared enough to pray for me over these past few months and weeks. Yesterday I thought "God, I hope what you have been doing is breaking me down to build me back up again." Today he told me "You finally got the answer right."
Now I know that my 3.9GPA in college is NOT my greatest accomplishment.
Today is.
Several weeks ago it started. I felt like God has slipped out of my prescence but I refused to believe he had. I asked for prayers everywhere I could think of to ask for prayer. They have been answered.
I had a couple of dreams that I'm not going to go into detail about because they are very personal. I will say that these dreams preceeded my going to the altar at church to rededicate myself so now I see them as being significant. At the time they were just very vivid dreams that stuck in my brain and I couldn't figure out why. Today God gave me those connections. Like I said, I am not going into detail because this is SO intensely personal and I don't want people thinking I am crazy because I'm not though at some points today I thought I was.
What I have asked the Lord for was restoration. A glimpse beyond the veil so to speak. To guide me and show me purpose. I thought he wasn't listening but boy did he deliver today in a HUGE way.
Everywhere I turned I saw things that I could relate to the Gospel. I spent this day entirely with my kids playing with them and loving them. I felt the love of Christ so completely clearly that I have tears right now typing about it. I know that this love came out too because my kids were so completely clingy to me. Right now they are fast asleep. They had a big day! When we prayed tonight Owen told me "God hears us?" I told him he absolutely does and to never doubt it. I think he may have been posing this as a sentence to me. Read on.
As I said everything seemed to be related to the Gospel. We saw home videos from 2 years ago and I saw how I treated my husband before he strayed. I was SO ashamed. I know my actions did not justify his but I understood more why he reacted as he had. I felt his sorrow in having reacted that way as well. I saw myself grow up on that film! It wasn't just Hannah growing physically. I was a completely different person--a total nag. Life sucked and I didn't care to say it. It was terrible but also terribly awesome. Today the pain of having 2 children rather than the 4 I wanted was taken away. I'm ready to lose my uterus. Christ showed me my hands are overflowing and I'll receive as many blessings as that family that has 17 children. Shawn made the right decision when Hannah was 6 weeks old though it wasn't for the reason he thought, I don't think.
I started thinking maybe I was dying and seeing my "life review" as the new-agers call it. The emotions of others were SO strong. As I said, I connected on a level with the kids that I never have before. I saw their need for a mom and felt Christ telling me "Andrea, quit your worrying about not being here for them. They need you." I have been studying the LDS faith for a while now and while not all of what I felt today clicked and made sense something did. I felt that these kids had a thinner veil over their eyes than I did. I felt so many emotions today I was convinced I was dying or going crazy. I kept asking Shawn "Am I nuts?" I think he thought I was going that way!
Today the kids showed me they still need me so I need to quit napping all the time, playing arcade games, reading books, and be more engaged. Christ told my heart that I have a responsibility to make good on what I said years ago and keep that veil thin for them so they can still see Christ there when they are older and ask him into their hearts. Their dependance on me while I was feeling Christ's love and showing it showed ME that I still have purpose--this one! Forget that stupid doctor saying "we'll try to keep you alive" this past week. I will be alive. I'm going to live to see my babies come to Christ on their own free will. I'm 110% certain of that!
I have never, ever had a day like today. At first I thought, maybe today was my salvation day? Maybe the Mormons were actually right about one other thing--maybe I had never completely felt the gift of the Holy Spirit but had felt its power? Today I got my answer in regard to their church and as sad as some of my friends will be to read it the answer I received isn't that the church is the complete truth but that it has truthful components as does the Baptist church. I know in my heart after today that anyone who needs revelation will receive it and that we don't need anyone to tell us what it means. Christ himself does through the Holy Spirit!
I realize today that with those dreams I had several weeks back and with the events of this day that God was preparing me to receive answers I needed to hear. He couldn't give it to me all at once or I would have went insane. He gave me just enough to leave me completely fulfilled and at a place I have never been in my life. I don't know if I was saved today. I don't know if what I felt before was just an emotional response and fear of Hell. All I know is that everything is still a-ok even 5 years after getting pregnant with Owen. Yes I have sinned. I felt that sadness today but I also felt utter forgiveness and a love that I can't put into words.
Well, my brain is ready to begin the Sabbath and get a rest lol. I have never been so completely involved with life like I was today. I had been wondering just how involved Christ is with each of us personally and today he showed me. Some things haven't changed--I still don't want his job. My soul isn't that strong but I do want to represent him for my kids, for my husband, and for my friends. So, it's time to put the cancer/Cowden's/money/petty worries to rest. I had thought about writing a book about my experiences before but didn't feel like the events were enough in themselves. I want to write about growing spiritually through pain. Today I told God I will replace a part of my arcade, reading, etc time and begin this process. I'm ready!
I'm posting this for me in case the veil starts to thicken again as I'm sure it will and I'm posting this for my friends who cared enough to pray for me over these past few months and weeks. Yesterday I thought "God, I hope what you have been doing is breaking me down to build me back up again." Today he told me "You finally got the answer right."
Now I know that my 3.9GPA in college is NOT my greatest accomplishment.
Today is.
Friday, July 25, 2008
I told myself
I would get back and finish my health story but things have been crazy.
I just realized that those who have read this probably think I am a stoner what with the title and all. I have spent so much of my life laying in the back seat of cars staring up at the sky on the way home from doctor appointments and hospitalizations. Two days ago was my geneticist appointment. The clouds weren't so poofy. More thin and storm like. Should have seen it as an omen.
One day it will happen. I will have had as many surgeries as I am years old because I have another one being brought on. I will be having my uterus removed soon. ---Sigh--- I know things could be worse but sometimes I feel so much like a lab rat.
We found out that because Hannah is on the autism spectrum her odds of having Cowden's have jumped into the almost certainty range. I feel just like I thought I would. Guilty. When we were trying to have a second child, I knew there was a chance I had Cowden's. I didn't know with Owen but with Hannah, I knew. I weighed the odds then and asked myself if I had my life to live over would I do it again and answered yes. There's been a lot of pain --sure but all total it has made me who I am. I don't know that I would have a relationship with the Lord if I had been healthy. I remember having a break-up occur because I told my fiancee that if I knew my child would have to go through what I have been through I would still have the child. He called me selfish.
Am I?
Maybe I don't want an answer to that.
I once had a dream I was an old woman and Hannah was with me in the doctor's office. It wasn't clear who we were there for. Maybe God was telling me something? I hope not because in the dream I asked about Owen and it was clear he was deceased but had left me 3 beautiful blonde haired grandaughters. I woke up extremely sad because it was impressed on me that he had died not long in time from where we were in the dream. Thankfully it was just a dream though I would love to have 3 grandaughters some day. I once dreamed of a grandson--Hannah's son and he was a surgeon of all things. I have crazy dreams.
Like the one I had back in 1992 before I knew I relapsed. I had a dream that I was at my old school but the lighting was in different colors. It was impressed on me that I had to get to Memphis to St Jude before the big New Madrid earthquake happened. I dreamed of getting underneath a cushioned couch and of living through the earthquake but being extremely wounded. Earthquakes are setbacks and St Jude--cancer relapse was a definite setback.
The kicker? I had never been in the new section of St Jude before and had no idea what it looked like. In those days treatment was in the Research tower and in my dream I got under a couch just like one in the lobby and looked up on a glass ceiling--just like in that lobby.
Before Shawn and I were engaged, I had a dream of a brown haired little girl who looked a whole lot like him. She was in pigtails. For years I wanted to give my daughter the name Kennedy. My cousin named her daughter that as a middle name but at this time THAT child hadn't been conceived yet. I asked the little girl if I named her Kennedy and she laughed at me saying it was a silly name and no that wasn't her name. Then I asked her if she was my first child and woke up with the year 2003 on my mind. That was when Owen was born. Also when we were trying to get pregnant the second time, the last month that was unsuccessful didn't bring the usual tears and sadness. Ever since that dream July 2005 had been impressed on me as being important. Hannah was born on July 1st.
I told Shawn over and over at the time when we were engaged that we would have a little boy who looked like me and a little girl who looked like him. I repeated myself because the feeling was SO strong. We have Owen who looks like a mini-me and Hannah who looks like a mini-Shawn. Was God telling me something? Maybe not to worry so much that I wouldn't be a mom? I was suicidal at the point when Owen was conceived due to wanting a child so strongly and hating myself and my body for not creating one.
Then I have had dreams of my grandma's old home and of my eyeball popping out and mom telling me to put it in the fridge too LOL Ah the human mind is a bizarre thing.
I just realized that those who have read this probably think I am a stoner what with the title and all. I have spent so much of my life laying in the back seat of cars staring up at the sky on the way home from doctor appointments and hospitalizations. Two days ago was my geneticist appointment. The clouds weren't so poofy. More thin and storm like. Should have seen it as an omen.
One day it will happen. I will have had as many surgeries as I am years old because I have another one being brought on. I will be having my uterus removed soon. ---Sigh--- I know things could be worse but sometimes I feel so much like a lab rat.
We found out that because Hannah is on the autism spectrum her odds of having Cowden's have jumped into the almost certainty range. I feel just like I thought I would. Guilty. When we were trying to have a second child, I knew there was a chance I had Cowden's. I didn't know with Owen but with Hannah, I knew. I weighed the odds then and asked myself if I had my life to live over would I do it again and answered yes. There's been a lot of pain --sure but all total it has made me who I am. I don't know that I would have a relationship with the Lord if I had been healthy. I remember having a break-up occur because I told my fiancee that if I knew my child would have to go through what I have been through I would still have the child. He called me selfish.
Am I?
Maybe I don't want an answer to that.
I once had a dream I was an old woman and Hannah was with me in the doctor's office. It wasn't clear who we were there for. Maybe God was telling me something? I hope not because in the dream I asked about Owen and it was clear he was deceased but had left me 3 beautiful blonde haired grandaughters. I woke up extremely sad because it was impressed on me that he had died not long in time from where we were in the dream. Thankfully it was just a dream though I would love to have 3 grandaughters some day. I once dreamed of a grandson--Hannah's son and he was a surgeon of all things. I have crazy dreams.
Like the one I had back in 1992 before I knew I relapsed. I had a dream that I was at my old school but the lighting was in different colors. It was impressed on me that I had to get to Memphis to St Jude before the big New Madrid earthquake happened. I dreamed of getting underneath a cushioned couch and of living through the earthquake but being extremely wounded. Earthquakes are setbacks and St Jude--cancer relapse was a definite setback.
The kicker? I had never been in the new section of St Jude before and had no idea what it looked like. In those days treatment was in the Research tower and in my dream I got under a couch just like one in the lobby and looked up on a glass ceiling--just like in that lobby.
Before Shawn and I were engaged, I had a dream of a brown haired little girl who looked a whole lot like him. She was in pigtails. For years I wanted to give my daughter the name Kennedy. My cousin named her daughter that as a middle name but at this time THAT child hadn't been conceived yet. I asked the little girl if I named her Kennedy and she laughed at me saying it was a silly name and no that wasn't her name. Then I asked her if she was my first child and woke up with the year 2003 on my mind. That was when Owen was born. Also when we were trying to get pregnant the second time, the last month that was unsuccessful didn't bring the usual tears and sadness. Ever since that dream July 2005 had been impressed on me as being important. Hannah was born on July 1st.
I told Shawn over and over at the time when we were engaged that we would have a little boy who looked like me and a little girl who looked like him. I repeated myself because the feeling was SO strong. We have Owen who looks like a mini-me and Hannah who looks like a mini-Shawn. Was God telling me something? Maybe not to worry so much that I wouldn't be a mom? I was suicidal at the point when Owen was conceived due to wanting a child so strongly and hating myself and my body for not creating one.
Then I have had dreams of my grandma's old home and of my eyeball popping out and mom telling me to put it in the fridge too LOL Ah the human mind is a bizarre thing.
Wednesday, July 9, 2008
Fewer clouds today
The last time I posted I was truly at the saddest point I have been in a long time. Today I decided to read my emails and go to the websites I visit every week and read what was said if anything. The comments cheered me up and an email from a friend said something that should have been so obvious to me.
For the past several years of my life I have been attacked physically with the cancers and cancer scares, emotionally with a husband who cheated, financially with not being able to pay medical bills or even for food at times. Truly before this period, I felt like I was on top of the world with my faith. Normally I would be dying for a shot of some kind of benzo to calm me down just thinking of bills but lately it hadn't been that way.
God isn't the author of fear--someone else is and that thing attackimg my faith isn't going to take it from me. He can have everything else as much as I would hate to give it up but faith is what sustains me.
I love Casting Crowns. I was feeling down even before reading the email when I decided to get in the car and visit my dad since he turned 62 today. Who am I? was what came on when I got in the car. I thought--that's right, who am I to question God? Things are going to be ok and I will get back to blogging about my past when I have more time and am able.
For the past several years of my life I have been attacked physically with the cancers and cancer scares, emotionally with a husband who cheated, financially with not being able to pay medical bills or even for food at times. Truly before this period, I felt like I was on top of the world with my faith. Normally I would be dying for a shot of some kind of benzo to calm me down just thinking of bills but lately it hadn't been that way.
God isn't the author of fear--someone else is and that thing attackimg my faith isn't going to take it from me. He can have everything else as much as I would hate to give it up but faith is what sustains me.
I love Casting Crowns. I was feeling down even before reading the email when I decided to get in the car and visit my dad since he turned 62 today. Who am I? was what came on when I got in the car. I thought--that's right, who am I to question God? Things are going to be ok and I will get back to blogging about my past when I have more time and am able.
Sunday, July 6, 2008
Blog about nothing, or is it?
I'm feeling extremely down today. Even though the cancer in my breast turned out to be in situ, I have still felt down since it happened. Too many changes and too quickly. I've found my mind even going in the direction that there may not be a God and I hate myself for it. I hate myself for worrying away at least half of my life for no reason. I guess I thought I had control by worrying. I didn't then and I don't now and it's been a wake up call. The adversary has been putting into my head "what if there is no God and when you die that's just it?" I hate these thoughts. Despise them. I wish I could get them out of my head. Now with a new lump acting weird it has me frantic. What if this life is all there is?
Emotional support is almost impossible to come by as well. Shawn is doing ok but other places are lacking. Financially we can't be much more strapped than we are. The in-laws are remodeling the house because our heating bills last winter were $500 and there was no insulation at all in any room except for the one they added on later. My parents saw them helping and even though I told them we weren't paying for it they somehow think we magically have the $60 I owe them in meds that were charged. They can't even write that off yet the doctor's office out here wrote off $300. They can also pay my sister's car payment when she's in need and my brother's insurance. Now I found out we are responsible for an additional $500 bill and I don't know where it will come from. By late month we are near starving and sadly it isn't an understatement. Food stamps take into account only income not $70 a trip Little Rock visits every 2-3 weeks for healthcare so we have $40 in help that doesn't even buy basics. I'm grateful for having that and realize no one is obligated to give us anything but I'm worried. I'm petrified.
I thought of the widow casting her last mite today at church and gave all the money I have left for the month. It was probably stupid but I felt called to and I know when I haven't done it in the past we have wound up with bills for more than four times what I gave. So, I did. I hate that I gave in hopes of God seeing my trust and rewarding by letting this get taken care of. I wanted to give with a cheerful heart expecting nothing in return. I hate myself for not being able to do that and now if nothing comes in return well, we will cross that bridge.
I went down to the altar to pray today. I have only been there 3 times. One was salvation/baptism, the other was to join the church, and today was because I'm in an extremely dark period and my parents can't even hand me a flashlight.
Emotional support is almost impossible to come by as well. Shawn is doing ok but other places are lacking. Financially we can't be much more strapped than we are. The in-laws are remodeling the house because our heating bills last winter were $500 and there was no insulation at all in any room except for the one they added on later. My parents saw them helping and even though I told them we weren't paying for it they somehow think we magically have the $60 I owe them in meds that were charged. They can't even write that off yet the doctor's office out here wrote off $300. They can also pay my sister's car payment when she's in need and my brother's insurance. Now I found out we are responsible for an additional $500 bill and I don't know where it will come from. By late month we are near starving and sadly it isn't an understatement. Food stamps take into account only income not $70 a trip Little Rock visits every 2-3 weeks for healthcare so we have $40 in help that doesn't even buy basics. I'm grateful for having that and realize no one is obligated to give us anything but I'm worried. I'm petrified.
I thought of the widow casting her last mite today at church and gave all the money I have left for the month. It was probably stupid but I felt called to and I know when I haven't done it in the past we have wound up with bills for more than four times what I gave. So, I did. I hate that I gave in hopes of God seeing my trust and rewarding by letting this get taken care of. I wanted to give with a cheerful heart expecting nothing in return. I hate myself for not being able to do that and now if nothing comes in return well, we will cross that bridge.
I went down to the altar to pray today. I have only been there 3 times. One was salvation/baptism, the other was to join the church, and today was because I'm in an extremely dark period and my parents can't even hand me a flashlight.
Thursday, July 3, 2008
Continuation from the beginning
(Due to how much I have had happen in regard to medical things, I have to break this up into seperate posts. This could truly be a small book if I were more gifted with writing and able to write one. I do plan on printing the posts and saving them for Owen and Hannah to someday know what I went through).
My cousin Laura died when she was 8 years old. I was a confused little kid. I spent from age 5-8 thinking that I would also die because some people had said Laura and I resembled. I look at pictures and don't see it. Laura Beth was a lot prettier but we had the same haircut at the same age so maybe that was why people thought we resembled.
I can still remember closing the bathroom door at my grandma's when we had my 9th birthday party. I was SO excited. I wasn't going to die after all. Well, at least at age 8. Age 9 brought on more worry over death but I'll get to that in a minute.
As I said in the previous post, for some years before the original dysgerminoma was found I had been showing signs. I would wake up with a flat stomach and go to bed looking like a starving child with a huge belly and sticks for arms and legs. We have pictures. Had I been a few years older someone may have thought I was about 20 weeks pregnant. I guess I was pregnant--with an ovarian tumor.
How it unravelled is a story in itself. During the time of uncertainty my mom took me to the doctor to be looked at. The doctor said I was swallowing air and that explained the large stomach. I remember him saying I had a fecal impaction and when I found out what that meant I thought it was the most disgusting thing ever.
My dad had gone bankrupt from farming in the mid 1980's and in 1986 when I was 9 he worked at a factory. He had insurance on me and would have until the first surgery was paid for. Then he somehow mysteriously had to be laid off with all the companies' newer employees. He had more seniority than anyone else during that period. They offered him insurance on me for $1200 a month but he was still paying on farm losses and in 1986, $1200 a month was a lot. Shoot it is still a lot. That is my husband's gross income for a 4 week month.
At this factory, they had picnics each year. They also had games. One of the games we played was the wheelbarrow races. My partner was a friend but an extremely competitive friend. I had little power in my upper arms and she didn't want to be the wheelbarrow. Eventually I gave in and we entered the race.
We were almost winning when I couldn't keep up the pace in my arms. She dropped me flat on my stomach. I KNEW something had happened but I didn't know what. It felt like a great big sword had wiped into my life and changed things. Everything seemed different. Everything was different.
I had bouts with nausea prior to this incident but following the fall I was at the point where I could hold down nothing at all--not even water. This presented a problem. I had been sick a lot in the past and my parents didn't want me to have to go before the school board to not be held back in the 4th grade so that Monday, I went to class. I made it through ten minutes of first period Art class before the teacher made me go to the restroom where I succeded in losing my breakfast.
I still remember waiting on my mom to pick me up. I thought that I had the worst flu ever. Nowadays we live near the school where I went at that point and there is still a couch cushion there. I remember what was going through my head when my mom pulled up to get me. It was confusion and disgust with feeling so terrible all the time.
My dad ended up being the one to take me to the doctor's office. I have never in all my 31 years had someone look at me and say "you look like you feel terrible we are going to clean a room out for you to rest before the doctor comes in." Well, at this appointment they did this for me.
So, I laid there. I don't remember what I was thinking except that boy I seemed to see the doctor a lot. The doctor felt of my abdomen and there it was.
It felt like a ball the size of a grapefruit. It wasn't though. I was planned to have a ct-scan because I couldn't hold down contrast the day I visited the doctor but what ended up happening was that my parents took me to the ER that very night. I remember the doctor saying "now if this doesn't help her pain, bring her in." The thing is--it helped. The pain was still there but I was curious about the ER and I still knew something was bad wrong. About a month before the factory picnic, I had thrown up on the way home from my favorite aunt's house. We were sitting on the couch and a St Jude segment asking for fund raisers came on. I was so sick I didn't remember but my cousin did. She said my dad said "at least you aren't as sick as those children are."
How I wish he had been right.
They went in on a very early morning for an exploratory lap not knowing for sure what the mass was. Years later I spoke with one of the nurses and she said everyone in the room cried. It was horribly obvious that this was a cancerous mass. I was very tiny at that age and the tumor was the size of a grapefruit.
The surgeon Dr. Hill brought the tumor out to show mom. Why I have no idea. Mom almost fainted. Who could have dreamed a 9 year old girl in the dinky town of Pocahontas Arkansas had an ovarian tumor? My parents faced the cold hard facts while I began the stages to acceptance. It is odd to me how they are the same no matter what a person's age was. I denied I had cancer.
I was also confused. I didn't know the difference between a tumor and cancer like leukemia. Mom kept telling me over and over that I HAD cancer and was now better. The margins showed no metastisis and for six years we believed that. Mom's plan was to wait until I went to St Jude and let them tell me what was wrong but I found out before that. In an odd turn of events, my entire fourth grade class knew I had cancer before I did thanks to a big mouthed teacher.
When I returned to the fourth grade, I was asked if I had cancer. This wasn't the first time. The first time had been when my best friend called the hospital and said our reading teacher had told the class I had cancer when someone asked where I was. My friend asked me if I had it. I denied it. I also denied it when asked at school though the kids knew my busy body teacher had no reason to lie and that after the surgery I was sent to St Jude Children's Research Hospital in Memphis, TN. I had to face up to the fact that it wasn't just "old men (he was 49 at death)" like my grandpa who smoked who got cancer. Kids got it too. I was sent to St. Jude for further evaluation of the staging of the tumor since it appeared to not be entirely encapsulated. Tests were done and clear but another surgery was needed and I'll pick up there with the next blog entry
My cousin Laura died when she was 8 years old. I was a confused little kid. I spent from age 5-8 thinking that I would also die because some people had said Laura and I resembled. I look at pictures and don't see it. Laura Beth was a lot prettier but we had the same haircut at the same age so maybe that was why people thought we resembled.
I can still remember closing the bathroom door at my grandma's when we had my 9th birthday party. I was SO excited. I wasn't going to die after all. Well, at least at age 8. Age 9 brought on more worry over death but I'll get to that in a minute.
As I said in the previous post, for some years before the original dysgerminoma was found I had been showing signs. I would wake up with a flat stomach and go to bed looking like a starving child with a huge belly and sticks for arms and legs. We have pictures. Had I been a few years older someone may have thought I was about 20 weeks pregnant. I guess I was pregnant--with an ovarian tumor.
How it unravelled is a story in itself. During the time of uncertainty my mom took me to the doctor to be looked at. The doctor said I was swallowing air and that explained the large stomach. I remember him saying I had a fecal impaction and when I found out what that meant I thought it was the most disgusting thing ever.
My dad had gone bankrupt from farming in the mid 1980's and in 1986 when I was 9 he worked at a factory. He had insurance on me and would have until the first surgery was paid for. Then he somehow mysteriously had to be laid off with all the companies' newer employees. He had more seniority than anyone else during that period. They offered him insurance on me for $1200 a month but he was still paying on farm losses and in 1986, $1200 a month was a lot. Shoot it is still a lot. That is my husband's gross income for a 4 week month.
At this factory, they had picnics each year. They also had games. One of the games we played was the wheelbarrow races. My partner was a friend but an extremely competitive friend. I had little power in my upper arms and she didn't want to be the wheelbarrow. Eventually I gave in and we entered the race.
We were almost winning when I couldn't keep up the pace in my arms. She dropped me flat on my stomach. I KNEW something had happened but I didn't know what. It felt like a great big sword had wiped into my life and changed things. Everything seemed different. Everything was different.
I had bouts with nausea prior to this incident but following the fall I was at the point where I could hold down nothing at all--not even water. This presented a problem. I had been sick a lot in the past and my parents didn't want me to have to go before the school board to not be held back in the 4th grade so that Monday, I went to class. I made it through ten minutes of first period Art class before the teacher made me go to the restroom where I succeded in losing my breakfast.
I still remember waiting on my mom to pick me up. I thought that I had the worst flu ever. Nowadays we live near the school where I went at that point and there is still a couch cushion there. I remember what was going through my head when my mom pulled up to get me. It was confusion and disgust with feeling so terrible all the time.
My dad ended up being the one to take me to the doctor's office. I have never in all my 31 years had someone look at me and say "you look like you feel terrible we are going to clean a room out for you to rest before the doctor comes in." Well, at this appointment they did this for me.
So, I laid there. I don't remember what I was thinking except that boy I seemed to see the doctor a lot. The doctor felt of my abdomen and there it was.
It felt like a ball the size of a grapefruit. It wasn't though. I was planned to have a ct-scan because I couldn't hold down contrast the day I visited the doctor but what ended up happening was that my parents took me to the ER that very night. I remember the doctor saying "now if this doesn't help her pain, bring her in." The thing is--it helped. The pain was still there but I was curious about the ER and I still knew something was bad wrong. About a month before the factory picnic, I had thrown up on the way home from my favorite aunt's house. We were sitting on the couch and a St Jude segment asking for fund raisers came on. I was so sick I didn't remember but my cousin did. She said my dad said "at least you aren't as sick as those children are."
How I wish he had been right.
They went in on a very early morning for an exploratory lap not knowing for sure what the mass was. Years later I spoke with one of the nurses and she said everyone in the room cried. It was horribly obvious that this was a cancerous mass. I was very tiny at that age and the tumor was the size of a grapefruit.
The surgeon Dr. Hill brought the tumor out to show mom. Why I have no idea. Mom almost fainted. Who could have dreamed a 9 year old girl in the dinky town of Pocahontas Arkansas had an ovarian tumor? My parents faced the cold hard facts while I began the stages to acceptance. It is odd to me how they are the same no matter what a person's age was. I denied I had cancer.
I was also confused. I didn't know the difference between a tumor and cancer like leukemia. Mom kept telling me over and over that I HAD cancer and was now better. The margins showed no metastisis and for six years we believed that. Mom's plan was to wait until I went to St Jude and let them tell me what was wrong but I found out before that. In an odd turn of events, my entire fourth grade class knew I had cancer before I did thanks to a big mouthed teacher.
When I returned to the fourth grade, I was asked if I had cancer. This wasn't the first time. The first time had been when my best friend called the hospital and said our reading teacher had told the class I had cancer when someone asked where I was. My friend asked me if I had it. I denied it. I also denied it when asked at school though the kids knew my busy body teacher had no reason to lie and that after the surgery I was sent to St Jude Children's Research Hospital in Memphis, TN. I had to face up to the fact that it wasn't just "old men (he was 49 at death)" like my grandpa who smoked who got cancer. Kids got it too. I was sent to St. Jude for further evaluation of the staging of the tumor since it appeared to not be entirely encapsulated. Tests were done and clear but another surgery was needed and I'll pick up there with the next blog entry
My normal post
In spite of having another lump come up that is acting suspicious and my faith being very much tested right now, today I'm writing about normal things. Memories and making them.
Today we shot some fireworks my mom bought for Owen and Hannah's enjoyment. The 4th of July and fireworks always remind me of July 4, 1980. My brother who was then 12 years old was holding a Roman candle when it backfired and hit his stomach. I had just turned 3.
I remember people running in to the restroom to take care of his wound and discussing whether he needed to go to the ER or not. At the time all I remember was fear. I thought I might lose my older brother and I didn't like it at all. He ended up being ok but has permanent scars from that day.
I thought of this because now I have a daughter who is 3. She's naturally leery of fireworks and in all honesty so am I. I told Hannah that nothing was going to happen if she stood far enough back and if something freaky did happen to put her or Owen is danger then I would jump in front of them and they would be ok. She then thought it was ok and agreed to hold a sparkler with my help.
How time flies. My brother's incident was 29 years ago and it is truly my most clear childhood memory.
My poor brother doesn't have much luck on July 4th. When I was 18, he was shot in the abdomen area in a drug situation. My brother fell into drugs when he was 12 and he still hasn't recovered. He is still an addict. Anyway, the bullet lodged somewhere below his liver and is still in there as it would have been more dangerous to operate than to leave it. We had hoped he learned his lesson with illegal drugs but unfortunately he did not and is now 40 years old and still on them. It's pitiful. He once said had his grandfathers not died when he was 8 years old he probably wouldn't have tried them. My Grandpa Thompson died of colon cancer on Dec 30, 1976 and Grandpa Kennedy followed with a heart attack on Jan 17th (I think). It was around three weeks apart.
Looks like my brother does a lot of "what if" thinking too. I've wondered what if I didn't have Cowden's and didn't have to worry about cancer? Would I be lost like I fear my siblings are? If so then I am glad I had the cancer and that God built me with this flukey gene. Even though lately I have had some of the strongest attacks of my life on my spirit, my heart still knows he is there. With the finding of the new lump and seeing that I am losing body parts (the breasts) it has brought mortality into my mind in a big way. Satan saw a place to interject and had me thiking there is no God at all.
A couple of problems with that. I once asked for a sign if he was there and still loved me. The one thing that wasn't supposed to happen dates back to that weekend. Owen Michael Rowe--my four and a half year old blonde haired boy whose due date was supposed to be Christmas. As time has went on, the dramatic impact of that escapes me sometimes--never for too long though. Today coming back on and reading the Dear Cancer letter I wrote when I was unable to sleep due to the nightmares has helped too. I had that faith a week ago and I still do.
Satan needs to go to Hell. Pronto.
Now how did this end up back on my health? --Sigh-- At least I tried a normal post.
Today we shot some fireworks my mom bought for Owen and Hannah's enjoyment. The 4th of July and fireworks always remind me of July 4, 1980. My brother who was then 12 years old was holding a Roman candle when it backfired and hit his stomach. I had just turned 3.
I remember people running in to the restroom to take care of his wound and discussing whether he needed to go to the ER or not. At the time all I remember was fear. I thought I might lose my older brother and I didn't like it at all. He ended up being ok but has permanent scars from that day.
I thought of this because now I have a daughter who is 3. She's naturally leery of fireworks and in all honesty so am I. I told Hannah that nothing was going to happen if she stood far enough back and if something freaky did happen to put her or Owen is danger then I would jump in front of them and they would be ok. She then thought it was ok and agreed to hold a sparkler with my help.
How time flies. My brother's incident was 29 years ago and it is truly my most clear childhood memory.
My poor brother doesn't have much luck on July 4th. When I was 18, he was shot in the abdomen area in a drug situation. My brother fell into drugs when he was 12 and he still hasn't recovered. He is still an addict. Anyway, the bullet lodged somewhere below his liver and is still in there as it would have been more dangerous to operate than to leave it. We had hoped he learned his lesson with illegal drugs but unfortunately he did not and is now 40 years old and still on them. It's pitiful. He once said had his grandfathers not died when he was 8 years old he probably wouldn't have tried them. My Grandpa Thompson died of colon cancer on Dec 30, 1976 and Grandpa Kennedy followed with a heart attack on Jan 17th (I think). It was around three weeks apart.
Looks like my brother does a lot of "what if" thinking too. I've wondered what if I didn't have Cowden's and didn't have to worry about cancer? Would I be lost like I fear my siblings are? If so then I am glad I had the cancer and that God built me with this flukey gene. Even though lately I have had some of the strongest attacks of my life on my spirit, my heart still knows he is there. With the finding of the new lump and seeing that I am losing body parts (the breasts) it has brought mortality into my mind in a big way. Satan saw a place to interject and had me thiking there is no God at all.
A couple of problems with that. I once asked for a sign if he was there and still loved me. The one thing that wasn't supposed to happen dates back to that weekend. Owen Michael Rowe--my four and a half year old blonde haired boy whose due date was supposed to be Christmas. As time has went on, the dramatic impact of that escapes me sometimes--never for too long though. Today coming back on and reading the Dear Cancer letter I wrote when I was unable to sleep due to the nightmares has helped too. I had that faith a week ago and I still do.
Satan needs to go to Hell. Pronto.
Now how did this end up back on my health? --Sigh-- At least I tried a normal post.
Tuesday, June 24, 2008
Dear cancer
I believe this letter is long overdue.
I HATE you. I HATE everything about you. I hate how you tend to hide until you become so strong as to take part of me down. You know what I am talking about--my ovary and my kidney. You think you are so smart being so tiny until you advance too often to a point where a person who has you can't recover. You aren't smart. You are a coward.
I HATE how you tried and perhaps succeeded in part to steal away a part of my childhood. I hate even more how you came back into my body six years later--right at the point where we thought I was cured and stole much of my teen years by giving me worry and grief. I let you win back then, didn't I?
I HATE that you again tried to get me in my adult years. You see--I knew in my heart you were in my breasts and I had known for a few months. Finding you there wasn't a huge surprise but it WAS a victory. I may have lost my breasts due to your existence there but guess what cancer. For that part of my body I can have replacements. Also we caught you before you invaded--when you were weak as you truly are.
I HATE that you became a part of my life even before I was born when my 49 year old grandpa lost his body to you.
I HATE that I let you have years 15-30 by worrying and wasting away life convinced you were hiding and would come back and get me. I didn't plan to live but I did. I am now double the age I was when you came back with a vengence with the 1992-1993 relapse. I guess you didn't like that so you came back in my breasts. We got you this time cancer.
I HATE that I must go through more medical testing because I am at extreme risk of you coming back in other places. You need to leave me alone. I vow not to die from you. Do you hear me cancer? I would rather suffer painful, burning death than have you win. You won't win. I will NOT die from cancer of any type. I can be sure of that. In the name of Jesus, I rebuke you abnormal cells. I asked in his name that my cells have enough protein to slow the growth of cells. Yet if it be his will that you have your way with me you STILL won't have me. My father in heaven will have me. You won't be let in there. See he hates cancer and hates seeing his children go through it as much as I do.
Most of all cancer, I HATE that you took so many of my friends before they were even able to vote in a presidental election. Remember Jonathon, cancer? My first friend to fall? Well I have some news for you. You took my 12 year old friend's body but his soul is with Jesus. That's also where Terrie, Milton, Tony, Beth, Ryan, Jamey, Jessica, and the other friends who had cancer end their lives entirely too soon are.
You see cancer. You can't possibly win. You may eventually take down my body but I'm no longer letting you have my soul. You know what else cancer? I vow to tell everyone I know who is diagnosed my experiences so that you can''t steal their childhood, adolescence, and adulthood.
You are nothing more than a left-over from the time of the dinosaurs. Taking families and tearing them apart. Making me have nightmares when you have again reared your ugly self. I hate you cancer. Absolutely despise you. From this point on, I vow to worry much less. I dare to dream of a future where I will be living and seeing my children grow up. That's right cancer. Remember when you came back stage IV ovarian and almost stole my fertility? Well, you didn't. You can't have everything. When all is said and done you may get my body but not my soul. In the name of Jesus you will have neither. So you might as well go back to where you came from.
I'm not letting you win any more. On this date --June 25, 2008 I make this vow. So you might as well run now.
You can also run from my friends Renee and Shelley who have had you visit them this year. I won't let you have them so you might as well give up. As for Carrie's little Zackary---you can forget about having him as well. He's going to live to a ripe old age and give her grandchildren. I claim that. Christ said whatever you believe if you ask in his name it will happen and I have. You have no power over us cancer so go back to Hell where you belong.
I HATE you--you evil disease. You are no longer all of who I am.
I HATE you. I HATE everything about you. I hate how you tend to hide until you become so strong as to take part of me down. You know what I am talking about--my ovary and my kidney. You think you are so smart being so tiny until you advance too often to a point where a person who has you can't recover. You aren't smart. You are a coward.
I HATE how you tried and perhaps succeeded in part to steal away a part of my childhood. I hate even more how you came back into my body six years later--right at the point where we thought I was cured and stole much of my teen years by giving me worry and grief. I let you win back then, didn't I?
I HATE that you again tried to get me in my adult years. You see--I knew in my heart you were in my breasts and I had known for a few months. Finding you there wasn't a huge surprise but it WAS a victory. I may have lost my breasts due to your existence there but guess what cancer. For that part of my body I can have replacements. Also we caught you before you invaded--when you were weak as you truly are.
I HATE that you became a part of my life even before I was born when my 49 year old grandpa lost his body to you.
I HATE that I let you have years 15-30 by worrying and wasting away life convinced you were hiding and would come back and get me. I didn't plan to live but I did. I am now double the age I was when you came back with a vengence with the 1992-1993 relapse. I guess you didn't like that so you came back in my breasts. We got you this time cancer.
I HATE that I must go through more medical testing because I am at extreme risk of you coming back in other places. You need to leave me alone. I vow not to die from you. Do you hear me cancer? I would rather suffer painful, burning death than have you win. You won't win. I will NOT die from cancer of any type. I can be sure of that. In the name of Jesus, I rebuke you abnormal cells. I asked in his name that my cells have enough protein to slow the growth of cells. Yet if it be his will that you have your way with me you STILL won't have me. My father in heaven will have me. You won't be let in there. See he hates cancer and hates seeing his children go through it as much as I do.
Most of all cancer, I HATE that you took so many of my friends before they were even able to vote in a presidental election. Remember Jonathon, cancer? My first friend to fall? Well I have some news for you. You took my 12 year old friend's body but his soul is with Jesus. That's also where Terrie, Milton, Tony, Beth, Ryan, Jamey, Jessica, and the other friends who had cancer end their lives entirely too soon are.
You see cancer. You can't possibly win. You may eventually take down my body but I'm no longer letting you have my soul. You know what else cancer? I vow to tell everyone I know who is diagnosed my experiences so that you can''t steal their childhood, adolescence, and adulthood.
You are nothing more than a left-over from the time of the dinosaurs. Taking families and tearing them apart. Making me have nightmares when you have again reared your ugly self. I hate you cancer. Absolutely despise you. From this point on, I vow to worry much less. I dare to dream of a future where I will be living and seeing my children grow up. That's right cancer. Remember when you came back stage IV ovarian and almost stole my fertility? Well, you didn't. You can't have everything. When all is said and done you may get my body but not my soul. In the name of Jesus you will have neither. So you might as well go back to where you came from.
I'm not letting you win any more. On this date --June 25, 2008 I make this vow. So you might as well run now.
You can also run from my friends Renee and Shelley who have had you visit them this year. I won't let you have them so you might as well give up. As for Carrie's little Zackary---you can forget about having him as well. He's going to live to a ripe old age and give her grandchildren. I claim that. Christ said whatever you believe if you ask in his name it will happen and I have. You have no power over us cancer so go back to Hell where you belong.
I HATE you--you evil disease. You are no longer all of who I am.
Friday, June 20, 2008
The beginning
I was born in June 1977--a few weeks early. This takes conception back to fall 1976. On the date of conception it was set that I would have the bizarre condition known as Cowden Syndrome...from wikipedia
Cowden syndrome is an inherited disorder characterized by multiple tumor-like growths called hamartomas and an increased risk of certain forms of cancer. Almost everyone with this condition has hamartomas. These small, noncancerous growths are most commonly found on the skin and mucous membranes (such as the lining of the mouth and nose), but can also occur in the intestinal tract and other parts of the body. People with Cowden syndrome have an increased risk of developing several types of cancer, including cancers of the breast, thyroid, and uterus. Indeed, women with Cowden syndrome have as much as a 25-50% lifetime risk of developing breast cancer. (Robbins & Cotran (2004). Pathological Basis of Disease, 7th Edition. Elsevier, 1134. ) Noncancerous breast and thyroid diseases are also common. Other signs and symptoms of Cowden syndrome can include an enlarged head, a rare noncancerous brain tumor called Lhermitte-Duclos disease.
[edit] Epidemiology
Because Cowden syndrome can be difficult to diagnose, the exact prevalence is unknown; however, it probably occurs in at least 1 in 200,000 people.
[edit] Genetics
Mutations in the PTEN gene cause Cowden syndrome. PTEN is a tumor suppressor gene, which means it helps control the growth and division of cells. Inherited mutations in the PTEN gene have been found in about 80 percent of people with Cowden syndrome. These mutations prevent the PTEN protein from effectively regulating cell survival and division, which can lead to the formation of tumors. Cowden syndrome is one of several inherited diseases caused by mutations in the PTEN gene.
In the other 20 percent of Cowden syndrome cases, the cause is not yet known. Some of these cases may be caused by mutations in a region of DNA that regulates the activity of the PTEN gene.
This condition is inherited in an autosomal dominant pattern, which means one copy of the altered gene in each cell is sufficient to cause the disorder. In some cases, an affected person inherits the mutation from one affected parent. Other cases may result from new mutations in the gene. These cases occur in people with no history of the disorder in their family. It is characterized by numerous hamartomas, among other symptoms.
The truly bizarre thing is that no one in my family has shown strong symptoms of this and even now we are just beginning to test to see which parent I inherited it from. There had been a strong history of colon cancer in my dad's family line. In late Dec 1976, my paternal grandfather died of metastic colon-rectal cancer at only 49 years old. Three weeks later my maternal grandfather died of a heart attack. My mom was pregnant with me at the time both grandfathers died. I always wondered if that caused all my weird problems---the stress she felt when she lost these important men but learning many years later that I definately have a genetic problem put those thoughts to rest.
When I was born, my neck and back muscles were very underdeveloped. Mom said it either came from my being born a little early or from being so cramped up in her uterus that I couldn't move to develop them. I also had a gigantic head. O.k., more large than gigantic but still large enough for the doctor to wonder if I had hydrocephalus
From wikipedia
Hydrocephalus (pronunciation IPA: /ˌhaɪˌdɹoʊˈsɛfələs/) is a term derived from the Greek words "hydro" meaning water, and "cephalus" meaning head, and this condition is sometimes known as "water on the brain". People with this condition have abnormal accumulation of cerebrospinal fluid (CSF) in the ventricles, or cavities, of the brain. This may cause increased intracranial pressure inside the skull and progressive enlargement of the head, convulsion, and mental disability.
Hydrocephalus is usually due to blockage of CSF outflow in the ventricles or in the subarachnoid space over the brain. In a normal healthy person, CSF continuously circulates through the brain and its ventricles and the spinal cord and is continuously drained away into the circulatory system. In a hydrocephalic situation, the fluid accumulates in the ventricles, and the skull may become enlarged because of the great volume of fluid pressing against the brain and skull. Alternatively, the condition may result from an overproduction of the CSF fluid, from a congenital malformation blocking normal drainage of the fluid, or from complications of head injuries or infections.[1]
Infants and young children with hydrocephalus typically have abnormally large heads, because the pressure of the fluid causes the individual skull bones — which have yet to fuse — to bulge outward at their juncture points. Compression of the brain by the accumulating fluid eventually may cause convulsions and mental retardation. Hydrocephalus occurs in about one out of every 500 live births[2] and was routinely fatal until surgical techniques for shunting the excess fluid out of the central nervous system and into the blood or abdomen were developed.
Usually, hydrocephalus need not cause any intellectual impairment if recognized and properly treated. A massive degree of hydrocephalus rarely exists in normally functioning people, though such a rarity may occur if onset is gradual rather than sudden.[3]
Contents[hide]
1 History
2 Epidemiology
3 Pathology
4 Types of hydrocephalus and their etiologies
4.1 Communicating hydrocephalus
4.2 Non-communicating hydrocephalus
4.3 Congenital hydrocephalus
4.4 Acquired hydrocephalus
5 Symptoms
6 Effects
7 Treatment
7.1 Shunt complications
8 Shunts in Developing Countries
9 Exceptional case
10 See also
11 References
12 External links
//
[edit] History
Hydrocephalus was first described by the ancient Greek physician Hippocrates, but it remained an intractable condition until the 20th century, when shunts and other neurosurgical treatment modalities were developed. The condition has been often informally referred to as "water on the brain".
[edit] Epidemiology
Hydrocephalus affects one in every 500 live births, making it one of the most common birth defects, more common than Down syndrome or deafness.[2] According to the NIH website, there are an estimated 700,000 children and adults living with hydrocephalus, and it is the leading cause of brain surgery for children in the United States. There are over 180 different causes of the condition, one of the most common being brain hemorrhage associated with premature birth.
One of the most performed treatments for hydrocephalus, the cerebral shunt, has not changed much since it was developed in 1960. The shunt must be implanted through neurosurgery into the patient's brain, a procedure which itself may cause brain damage. An estimated 50% of all shunts fail within two years, requiring further surgery to replace the shunts. In the past 25 years, death rates associated with hydrocephalus have decreased from 54% to 5% and the occurrence of intellectual disability has decreased from 62% to 30%.
In the United States, the healthcare costs for hydrocephalus has exceeded $1 billion per year, but is still much less funded than research on other diseases including juvenile diabetes.[4]
[edit] Pathology
The elevated intracranial pressure may cause compression of the brain, leading to brain damage and other complications. Conditions among affected individual vary widely. Children who have had hydrocephalus may have very small ventricles, and presented as the "normal case". This is the problem with this condition.
If the foramina (pl.) of the fourth ventricle or the cerebral aqueduct are blocked, cereobrospinal fluid (CSF) can accumulate within the ventricles. This condition is called internal hydrocephalus and it results in increased CSF pressure. The production of CSF continues, even when the passages that normally allow it to exit the brain are blocked. Consequently, fluid builds inside the brain causing pressure that compresses the nervous tissue and dilates the ventricles. Compression of the nervous tissue usually results in irreversible brain damage. If the skull bones are not completely ossified when the hydrocephalus occurs, the pressure may also severely enlarge the head. The cerebral aqueduct may be blocked at the time of birth or may become blocked later in life because of a tumor growing in the brainstem.
Internal hydrocephalus can be successfully treated by placing a drainage tube (shunt) between the brain ventricles and abdominal cavity to eliminate the high internal pressures. There is some risk of infection being introduced into the brain through these shunts, however, and the shunts must be replaced as the person grows. A subarachnoid hemorrhage may block the return of CSF to the circulation. If CSF accumulates in the subarachnoid space, the condition is called external hydrocephalus. In this condition, pressure is applied to the brain externally, compressing neural tissues and causing brain damage. Thus resulting in further damage of the brain tissue and leading to necrotization
[edit] Types of hydrocephalus and their etiologies
Hydrocephalus can be caused by impaired cerebrospinal fluid (CSF) flow, reabsorption, or excessive CSF production.
The most common cause of hydrocephalus is CSF flow obstruction, hindering the free passage of cerebrospinal fluid through the ventricular system and subarachnoid space (e.g., stenosis of the cerebral aqueduct or obstruction of the interventricular foramina - foramina of Monro secondary to tumors, hemorrhages, infections or congenital malformations).
Hydrocephalus can also be caused by overproduction of cerebrospinal fluid (relative obstruction) (e.g., papilloma of choroid plexus).
Based on its underlying mechanisms, hydrocephalus can be classified into communicating, and non-communicating (obstructive). Both forms can be either congenital, or acquired.
[edit] Communicating hydrocephalus
Communicating hydrocephalus, also known as non-obstructive hydrocephalus, is caused by impaired cerebrospinal fluid resorption in the absence of any CSF-flow obstruction. It has been theorized that this is due to functional impairment of the arachnoid granulations, which are located along the superior sagittal sinus and is the site of cerebrospinal fluid resorption back into the venous system. Various neurologic conditions may result in communicating hydrocephalus, including subarachnoid/intraventricular hemorrhage, meningitis, Chiari malformation, and congenital absence of arachnoidal granulations (Pacchioni's granulations).
Normal pressure hydrocephalus (NPH) is a particular form of communicating hydrocephalus, characterized by enlarged cerebral ventricles, with only intermittently elevated cerebrospinal fluid pressure. The diagnosis of NPH can be established only with the help of continuous intraventricular pressure recordings (over 24 hours or even longer), since more often than not, instant measurements yield normal pressure values. Dynamic compliance studies may be also helpful. Altered compliance (elasticity) of the ventricular walls, as well as increased viscosity of the cerebrospinal fluid, may play a role in the pathogenesis of normal pressure hydrocephalus.
Main article: normal pressure hydrocephalus
Hydrocephalus ex vacuo also refers to an enlargement of cerebral ventricles and subarachnoid spaces, and is usually due to brain atrophy (as it occurs in dementias), post-traumatic brain injuries and even in some psychiatric disorders, such as schizophrenia. As opposed to hydrocephalus, this is a compensatory enlargement of the CSF-spaces in response to brain parenchyma loss - it is not the result of increased CSF pressure.
[edit] Non-communicating hydrocephalus
Non-communicating hydrocephalus, or obstructive hydrocephalus, is caused by a CSF-flow obstruction (either due to external compression or intraventricular mass lesions).
Foramen of Monro obstruction may lead to dilation of one or, if large enough (e.g., in colloid cyst), both lateral ventricles.
The aqueduct of Sylvius, normally narrow to begin with, may be obstructed by a number of genetically or acquired lesions (e.g., atresia, ependymitis, hemorrhage, tumor) and lead to dilatation of both lateral ventricles as well as the third ventricle.
Fourth ventricle obstruction will lead to dilatation of the aqueduct as well as the lateral and third ventricles.
The foramina of Luschka and foramen of Magendie may be obstructed due to congenital failure of opening (e.g., Dandy-Walker malformation).
The subarachnoid space surrounding the brainstem may also be obstructed due to inflammatory or hemorrhagic fibrosing meningitis, leading to widespread dilatation, including the fourth ventricle.
[edit] Congenital hydrocephalus
The cranial bones fuse by the end of the third year of life. For head enlargement to occur, hydrocephalus must occur before then. The causes are usually genetic but can also be acquired and usually occur within the first few months of life, which include 1) intraventricular matrix hemorrhages in premature infants, 2) infections, 3) type II Arnold-Chiari malformation, 4) aqueduct atresia and stenosis, and 5) Dandy-Walker malformation.
Main articles: Arnold-Chiari malformation and Dandy-Walker malformation
In newborns and toddlers with hydrocephalus, the head circumference is enlarged rapidly and soon surpasses the 97th%. Since the skull bones have not yet firmly joined together, bulging, firm anterior and posterior fontanelles may be present even when the patient is in an upright position.
The infant exhibits fretfulness, poor feeding, and frequent vomiting. As the hydrocephalus progresses, torpor sets in, and the infant shows lack of interest in his surroundings. Later on, the upper eyelids become retracted and the eyes are turned downwards (due to hydrocephalic pressure on the mesencephalic tegmentum and paralysis of upward gaze). Movements become weak and the arms may become tremulous. Papilledema is absent but there may be reduction of vision. The head becomes so enlarged that the child may eventually be bedridden.
About 80-90% of fetuses or newborn infants with spina bifida - often associated with meningocele or myelomeningocele - develop.[hydrocephalus.[5]
[edit] Acquired hydrocephalus
This condition is acquired as a consequence of CNS-infections, meningitis, brain tumors, head trauma, intracranial hemorrhage (subarachnoid or intraparenchymal) and is usually extremely painful for the patient.
[edit] Symptoms
Symptoms of increased intracranial pressure may include headaches, vomiting, nausea, papilledema, sleepiness, or coma. Elevated intracranial pressure may result in uncal and/or cerebellar tonsill herniation, with resulting life threatening brain stem compression. For details on other manifestations of increased intracranial pressure:
Main article: intracranial pressure
The triad (Hakim triad) of gait instability, urinary incontinence and dementia is a relatively typical manifestation of the distinct entity normal pressure hydrocephalus (NPH). Focal neurological deficits may also occur, such as abducens nerve palsy and vertical gaze palsy (Parinaud syndrome due to compression of the quadrigeminal plate, where the neural centers coordinating the conjugated vertical eye movement are located).
Main article: normal pressure hydrocephalus
[edit] Effects
Because hydrocephalus injures the brain, thought and behavior may be adversely affected. Learning disabilities are common among those with hydrocephalus, who tend to score better on verbal IQ than on performance IQ, which is thought to reflect the distribution of nerve damage to the brain. However, the severity of hydrocephalus differs considerably between individuals and some are of average or above average intelligence. Someone with hydrocephalus may have motivation and visual problems, problems with coordination, and may be clumsy. They may hit puberty earlier than the average child (see precocious puberty). About one in four develops epilepsy.
Because the problem resides inside the head, doctors rely heavily upon computer tomography scanning (CT scans), which may be used frequently to evaluate the condition of the disorder throughout the patient's life. Each CT scan exposes the patient to many times the level of x-ray radiation of a chest x-ray. See CT radiation exposure.
[edit] Treatment
Hydrocephalus treatment is surgical. It involves the placement of a ventricular catheter (a tube made of silastic), into the cerebral ventricles to bypass the flow obstruction/malfunctioning arachnoidal granulations and drain the excess fluid into other body cavities, from where it can be resorbed. Most shunts drain the fluid into the peritoneal cavity (ventriculo-peritoneal shunt), but alternative sites include the right atrium (ventriculo-atrial shunt), pleural cavity (ventriculo-pleural shunt), and gallbladder. A shunt system can also be placed in the lumbar space of the spine and have the CSF redirected to the peritoneal cavity (LP Shunt). An alternative treatment for obstructive hydrocephalus in selected patients is the endoscopic third ventriculostomy (ETV), whereby a surgically created opening in the floor of the third ventricle allows the CSF to flow directly to the basal cisterns, thereby shortcutting any obstruction, as in aqueductal stenosis. This may or may not be appropriate based on individual anatomy.
[edit] Shunt complications
Examples of possible complications include shunt malfunction, shunt failure, and shunt infection. Although a shunt generally works well, it may stop working if it disconnects, becomes blocked (clogged), infected, or it is outgrown. If this happens the cerebrospinal fluid will begin to accumulate again and a number of physical symptoms will develop (headaches, nausea, vomiting, photophobia/light sensitivity), some extremely serious, like seizures. The shunt failure rate is also relatively high (some sources site up to 45% chance of shunt failure in the first year following placement) and it is not uncommon for patients to have multiple shunt revisions within their lifetime.
The diagnosis of cerebrospinal fluid buildup is complex and requires specialist expertise.
Another complication can occur when CSF drains more rapidly than it is produced by the choroid plexus, causing symptoms -listlessness, severe headaches, irritability, light sensitivity, auditory hyperesthesia (sound sensitivity), nausea, vomiting, dizziness, vertigo, migraines, seizures, a change in personality, weakness in the arms or legs, strabismus, and double vision - to appear when the patient is vertical. If the patient lies down, the symptoms usually vanish in a short amount of time. A CT scan may or may not show any change in ventricle size, particularly if the patient has a history of slit-like ventricles. Difficulty in diagnosing overdrainage can make treatment of this complication particularly frustrating for patients and their families.
Resistance to traditional analgesic pharmacological therapy may also be a sign of shunt overdrainage or failure. Diagnosis of the particular complication usually depends on when the symptoms appear - that is, whether symptoms occur when the patient is upright or in a prone position, with the head at roughly the same level as the feet.
[edit] Shunts in Developing Countries
Since the cost of shunt systems is beyond the reach of common people in developing countries, most of them die without even getting a shunt. Worse is the rate of revision in shunt systems that adds to the cost of shunting many times. Looking at this point, a study done by Dr. Benjamin C. Warf comparing different shunt systems and highlighting the role of low cost shunt system in most of the developing countries. This study has been published in Journal of Neurosurgery: Pediatrics May 2005 issue. It is about comparing Chhabra shunt system to those of the shunt systems from developed countries. The study was done in Uganda and the shunts were donated by International Federation for Spina Bifida and Hydrocephalus.
[edit] Exceptional case
One interesting case involving a person with past hydrocephalus was a 44-year old French man, whose brain had been reduced to little more than a thin sheet of actual brain tissue, due to the buildup of fluid in his skull. The man, who had a shunt inserted into his head to drain away fluid (which was removed when he was 14), went to a hospital after he had been experiencing mild weakness in his left leg.
DWS: All of the black in the middle is cerebrospinal fluid and the brain matter is the rim of white along the outside of the skull. This is a screen shot from a Fox News report.
In July of 2007, Fox News quoted Dr. Lionel Feuillet of Hopital de la Timone in Marseille as saying: "The images were most unusual... the brain was virtually absent."[6] When doctors learned of the man's medical history, they performed a computed tomography (CT) scan and magnetic resonance imaging (MRI) scan, and were astonished to see "massive enlargement" of the lateral ventricles in the skull. Intelligence tests showed the man had an IQ of 75, below the average score of 100 but not considered mentally retarded or disabled, either.
Remarkably, the man was a married father of two children, and worked as a civil servant, leading a normal life, despite having little brain tissue. "What I find amazing to this day is how the brain can deal with something which you think should not be compatible with life," commented Dr. Max Muenke, a pediatric brain defect specialist at the National Human Genome Research Institute. "If something happens very slowly over quite some time, maybe over decades, the different parts of the brain take up functions that would normally be done by the part that is pushed to the side."[7]
To find out if I had this, we had to travel to Memphis, TN. Memphis is a three hour drive from where we lived but it was the nearest place to have a ct-scan machine. This was the only way of telling if I had hydrocephalus. The answer was no. There was a fluid issue but not to the extent of being hydrocephalus. The machine didn't show this but a 1977-1978 ct machine was very primitive. Twenty seven years later my son would go through the same testing based on the same fear and this would be his diagnosis so it was likely mine as well but back in the late 1970's things weren't as clear as they were in 2004.
My mom said the doctors placed me on therapy to strengthen my back and neck muscles and I hated it. While my two weeks older cousin was about to begin crawling, I was still not lifting my head off the floor. The exercises caught me up and I walked at 13 months old--a little late but no later than my dad who hadn't went through what I had.
The first years of my life were normal except for one thing. From about age 3 to age 9, I would wake up in the morning with a flat stomach and by the end of the day I looked like a starving Ethiopian kid from swelling. Doctors insisted it was me swallowing air. Mom said she never felt like that answer was good enough but took it until events went downhill enough for us to find the true cause of the swelling. Prior to this, I had my first true experience with something related to Cowden Syndrome. Though hemangiomas are rare, they do happen and in 1984 when I was 6, my mom found one.
She had no idea what it was. I will never forget the fear in her voice. My parents spoiled me and my mom was still washing my hair when I was 6. She liked to do it in the kitchen sink. I remember looking down the drain many times wondering when she would be done with washing my hair so I could play. This particular day was different. I heard her scared voice say "I have found a lump." She could see my pulse beating inside the lump. She had me put my finger up there and I felt it as well. I thought it was weird but didn't know why she was so scared. Though I had experience with kids becoming sick and dying at that point--my cousin lost her life in an accident the year prior to this, I thought kids always died by accident. I didn't understand the seriousness. I thought of it a lot like I did when my cousin and I were playing in the swingset that same year and I got hit in the head with the two seated swing. I was bleeding very badly and mom was set to take me to the emergency room but my aunt was there and she calmly took me to the restroom and once the blood was washed away it was obvious there was only a small scratch there. I thought mom was overreacting about the lump but went with her to see the doctor.
To rule out aneurysm (though at that point no one was known to have this problem in my family), I underwent my first operation in Jan. 1984 (a side note--my dad had aneurysm burst on his brain 10 years after this surgery and made it through it despite terrible odds).
It was held at Lebonheur Children's Hospital. I have very faded and dark memories of it. I remember the waiting room before going back. We had been allowed to pick out a gift and I can't remember what I chose though I think it was a necklace. The anesthesiologist asked me what "flavor" of gas I wanted. Strawberries have always been my favorite everything so that was the answer.
The last thing I remember was thinking "this tastes awful--nothing like strawberries" and then--darkness.
I don't remember recovery room and I praise the Lord for it because with all twenty something operations it has been the roughest part of the operation. I have a gap in my memory until right before I was allowed to leave. I was prancing up and down the hallway trying to release some of the six year old energy I had when I heard a small voice say "come in my room."
I have always been shy but back then it wasn't nearly as bad. Still, I hesitated. The voice sounded nice but I knew you never could tell. My dad had been with me and he told me to go in--so I did.
When I walked in, I saw a girl who looked about my own age in bed. She had her leg attached to something that was attached to the ceiling. I whispered to my dad and he said she apparently broke it. What she said next confirmed it. She seemed very chipper and was really nice. I almost hated going home but already a part of me hated Memphis, TN and I was ready to go. The little girl's name was Amanda and she was about 1 1/2 years older than me. We traded addresses. We kept in touch until not long before I would first be diagnosed with cancer. Our parents wrote our letters because neither of us could write very well. My dad told me that Amanda had spinal bifida. He tried to explain to me what that meant and that she might die young as my cousin had but a young mind has a way of blocking out the bad. I decided she quit writing because we grew apart though my dad did bring up she could have died. I was sure that wasn't it. Kids die in accidents and not by illness. As a matter of fact, a year later I told my Sunday school teacher that if someone sat home and didn't leave they couldn't have a car accident and die, if they ate right and exercised they would be healthy, etc--how does someone die if they do everything perfectly? By age 9, I would know.
The surgery showed an AV malformation. After it was done, I no longer had nosebleeds and life was normal. Until age 9 when things got very confusing for me and my parents world seemed to be crashing down on them.
Cowden syndrome is an inherited disorder characterized by multiple tumor-like growths called hamartomas and an increased risk of certain forms of cancer. Almost everyone with this condition has hamartomas. These small, noncancerous growths are most commonly found on the skin and mucous membranes (such as the lining of the mouth and nose), but can also occur in the intestinal tract and other parts of the body. People with Cowden syndrome have an increased risk of developing several types of cancer, including cancers of the breast, thyroid, and uterus. Indeed, women with Cowden syndrome have as much as a 25-50% lifetime risk of developing breast cancer. (Robbins & Cotran (2004). Pathological Basis of Disease, 7th Edition. Elsevier, 1134. ) Noncancerous breast and thyroid diseases are also common. Other signs and symptoms of Cowden syndrome can include an enlarged head, a rare noncancerous brain tumor called Lhermitte-Duclos disease.
[edit] Epidemiology
Because Cowden syndrome can be difficult to diagnose, the exact prevalence is unknown; however, it probably occurs in at least 1 in 200,000 people.
[edit] Genetics
Mutations in the PTEN gene cause Cowden syndrome. PTEN is a tumor suppressor gene, which means it helps control the growth and division of cells. Inherited mutations in the PTEN gene have been found in about 80 percent of people with Cowden syndrome. These mutations prevent the PTEN protein from effectively regulating cell survival and division, which can lead to the formation of tumors. Cowden syndrome is one of several inherited diseases caused by mutations in the PTEN gene.
In the other 20 percent of Cowden syndrome cases, the cause is not yet known. Some of these cases may be caused by mutations in a region of DNA that regulates the activity of the PTEN gene.
This condition is inherited in an autosomal dominant pattern, which means one copy of the altered gene in each cell is sufficient to cause the disorder. In some cases, an affected person inherits the mutation from one affected parent. Other cases may result from new mutations in the gene. These cases occur in people with no history of the disorder in their family. It is characterized by numerous hamartomas, among other symptoms.
The truly bizarre thing is that no one in my family has shown strong symptoms of this and even now we are just beginning to test to see which parent I inherited it from. There had been a strong history of colon cancer in my dad's family line. In late Dec 1976, my paternal grandfather died of metastic colon-rectal cancer at only 49 years old. Three weeks later my maternal grandfather died of a heart attack. My mom was pregnant with me at the time both grandfathers died. I always wondered if that caused all my weird problems---the stress she felt when she lost these important men but learning many years later that I definately have a genetic problem put those thoughts to rest.
When I was born, my neck and back muscles were very underdeveloped. Mom said it either came from my being born a little early or from being so cramped up in her uterus that I couldn't move to develop them. I also had a gigantic head. O.k., more large than gigantic but still large enough for the doctor to wonder if I had hydrocephalus
From wikipedia
Hydrocephalus (pronunciation IPA: /ˌhaɪˌdɹoʊˈsɛfələs/) is a term derived from the Greek words "hydro" meaning water, and "cephalus" meaning head, and this condition is sometimes known as "water on the brain". People with this condition have abnormal accumulation of cerebrospinal fluid (CSF) in the ventricles, or cavities, of the brain. This may cause increased intracranial pressure inside the skull and progressive enlargement of the head, convulsion, and mental disability.
Hydrocephalus is usually due to blockage of CSF outflow in the ventricles or in the subarachnoid space over the brain. In a normal healthy person, CSF continuously circulates through the brain and its ventricles and the spinal cord and is continuously drained away into the circulatory system. In a hydrocephalic situation, the fluid accumulates in the ventricles, and the skull may become enlarged because of the great volume of fluid pressing against the brain and skull. Alternatively, the condition may result from an overproduction of the CSF fluid, from a congenital malformation blocking normal drainage of the fluid, or from complications of head injuries or infections.[1]
Infants and young children with hydrocephalus typically have abnormally large heads, because the pressure of the fluid causes the individual skull bones — which have yet to fuse — to bulge outward at their juncture points. Compression of the brain by the accumulating fluid eventually may cause convulsions and mental retardation. Hydrocephalus occurs in about one out of every 500 live births[2] and was routinely fatal until surgical techniques for shunting the excess fluid out of the central nervous system and into the blood or abdomen were developed.
Usually, hydrocephalus need not cause any intellectual impairment if recognized and properly treated. A massive degree of hydrocephalus rarely exists in normally functioning people, though such a rarity may occur if onset is gradual rather than sudden.[3]
Contents[hide]
1 History
2 Epidemiology
3 Pathology
4 Types of hydrocephalus and their etiologies
4.1 Communicating hydrocephalus
4.2 Non-communicating hydrocephalus
4.3 Congenital hydrocephalus
4.4 Acquired hydrocephalus
5 Symptoms
6 Effects
7 Treatment
7.1 Shunt complications
8 Shunts in Developing Countries
9 Exceptional case
10 See also
11 References
12 External links
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[edit] History
Hydrocephalus was first described by the ancient Greek physician Hippocrates, but it remained an intractable condition until the 20th century, when shunts and other neurosurgical treatment modalities were developed. The condition has been often informally referred to as "water on the brain".
[edit] Epidemiology
Hydrocephalus affects one in every 500 live births, making it one of the most common birth defects, more common than Down syndrome or deafness.[2] According to the NIH website, there are an estimated 700,000 children and adults living with hydrocephalus, and it is the leading cause of brain surgery for children in the United States. There are over 180 different causes of the condition, one of the most common being brain hemorrhage associated with premature birth.
One of the most performed treatments for hydrocephalus, the cerebral shunt, has not changed much since it was developed in 1960. The shunt must be implanted through neurosurgery into the patient's brain, a procedure which itself may cause brain damage. An estimated 50% of all shunts fail within two years, requiring further surgery to replace the shunts. In the past 25 years, death rates associated with hydrocephalus have decreased from 54% to 5% and the occurrence of intellectual disability has decreased from 62% to 30%.
In the United States, the healthcare costs for hydrocephalus has exceeded $1 billion per year, but is still much less funded than research on other diseases including juvenile diabetes.[4]
[edit] Pathology
The elevated intracranial pressure may cause compression of the brain, leading to brain damage and other complications. Conditions among affected individual vary widely. Children who have had hydrocephalus may have very small ventricles, and presented as the "normal case". This is the problem with this condition.
If the foramina (pl.) of the fourth ventricle or the cerebral aqueduct are blocked, cereobrospinal fluid (CSF) can accumulate within the ventricles. This condition is called internal hydrocephalus and it results in increased CSF pressure. The production of CSF continues, even when the passages that normally allow it to exit the brain are blocked. Consequently, fluid builds inside the brain causing pressure that compresses the nervous tissue and dilates the ventricles. Compression of the nervous tissue usually results in irreversible brain damage. If the skull bones are not completely ossified when the hydrocephalus occurs, the pressure may also severely enlarge the head. The cerebral aqueduct may be blocked at the time of birth or may become blocked later in life because of a tumor growing in the brainstem.
Internal hydrocephalus can be successfully treated by placing a drainage tube (shunt) between the brain ventricles and abdominal cavity to eliminate the high internal pressures. There is some risk of infection being introduced into the brain through these shunts, however, and the shunts must be replaced as the person grows. A subarachnoid hemorrhage may block the return of CSF to the circulation. If CSF accumulates in the subarachnoid space, the condition is called external hydrocephalus. In this condition, pressure is applied to the brain externally, compressing neural tissues and causing brain damage. Thus resulting in further damage of the brain tissue and leading to necrotization
[edit] Types of hydrocephalus and their etiologies
Hydrocephalus can be caused by impaired cerebrospinal fluid (CSF) flow, reabsorption, or excessive CSF production.
The most common cause of hydrocephalus is CSF flow obstruction, hindering the free passage of cerebrospinal fluid through the ventricular system and subarachnoid space (e.g., stenosis of the cerebral aqueduct or obstruction of the interventricular foramina - foramina of Monro secondary to tumors, hemorrhages, infections or congenital malformations).
Hydrocephalus can also be caused by overproduction of cerebrospinal fluid (relative obstruction) (e.g., papilloma of choroid plexus).
Based on its underlying mechanisms, hydrocephalus can be classified into communicating, and non-communicating (obstructive). Both forms can be either congenital, or acquired.
[edit] Communicating hydrocephalus
Communicating hydrocephalus, also known as non-obstructive hydrocephalus, is caused by impaired cerebrospinal fluid resorption in the absence of any CSF-flow obstruction. It has been theorized that this is due to functional impairment of the arachnoid granulations, which are located along the superior sagittal sinus and is the site of cerebrospinal fluid resorption back into the venous system. Various neurologic conditions may result in communicating hydrocephalus, including subarachnoid/intraventricular hemorrhage, meningitis, Chiari malformation, and congenital absence of arachnoidal granulations (Pacchioni's granulations).
Normal pressure hydrocephalus (NPH) is a particular form of communicating hydrocephalus, characterized by enlarged cerebral ventricles, with only intermittently elevated cerebrospinal fluid pressure. The diagnosis of NPH can be established only with the help of continuous intraventricular pressure recordings (over 24 hours or even longer), since more often than not, instant measurements yield normal pressure values. Dynamic compliance studies may be also helpful. Altered compliance (elasticity) of the ventricular walls, as well as increased viscosity of the cerebrospinal fluid, may play a role in the pathogenesis of normal pressure hydrocephalus.
Main article: normal pressure hydrocephalus
Hydrocephalus ex vacuo also refers to an enlargement of cerebral ventricles and subarachnoid spaces, and is usually due to brain atrophy (as it occurs in dementias), post-traumatic brain injuries and even in some psychiatric disorders, such as schizophrenia. As opposed to hydrocephalus, this is a compensatory enlargement of the CSF-spaces in response to brain parenchyma loss - it is not the result of increased CSF pressure.
[edit] Non-communicating hydrocephalus
Non-communicating hydrocephalus, or obstructive hydrocephalus, is caused by a CSF-flow obstruction (either due to external compression or intraventricular mass lesions).
Foramen of Monro obstruction may lead to dilation of one or, if large enough (e.g., in colloid cyst), both lateral ventricles.
The aqueduct of Sylvius, normally narrow to begin with, may be obstructed by a number of genetically or acquired lesions (e.g., atresia, ependymitis, hemorrhage, tumor) and lead to dilatation of both lateral ventricles as well as the third ventricle.
Fourth ventricle obstruction will lead to dilatation of the aqueduct as well as the lateral and third ventricles.
The foramina of Luschka and foramen of Magendie may be obstructed due to congenital failure of opening (e.g., Dandy-Walker malformation).
The subarachnoid space surrounding the brainstem may also be obstructed due to inflammatory or hemorrhagic fibrosing meningitis, leading to widespread dilatation, including the fourth ventricle.
[edit] Congenital hydrocephalus
The cranial bones fuse by the end of the third year of life. For head enlargement to occur, hydrocephalus must occur before then. The causes are usually genetic but can also be acquired and usually occur within the first few months of life, which include 1) intraventricular matrix hemorrhages in premature infants, 2) infections, 3) type II Arnold-Chiari malformation, 4) aqueduct atresia and stenosis, and 5) Dandy-Walker malformation.
Main articles: Arnold-Chiari malformation and Dandy-Walker malformation
In newborns and toddlers with hydrocephalus, the head circumference is enlarged rapidly and soon surpasses the 97th%. Since the skull bones have not yet firmly joined together, bulging, firm anterior and posterior fontanelles may be present even when the patient is in an upright position.
The infant exhibits fretfulness, poor feeding, and frequent vomiting. As the hydrocephalus progresses, torpor sets in, and the infant shows lack of interest in his surroundings. Later on, the upper eyelids become retracted and the eyes are turned downwards (due to hydrocephalic pressure on the mesencephalic tegmentum and paralysis of upward gaze). Movements become weak and the arms may become tremulous. Papilledema is absent but there may be reduction of vision. The head becomes so enlarged that the child may eventually be bedridden.
About 80-90% of fetuses or newborn infants with spina bifida - often associated with meningocele or myelomeningocele - develop.[hydrocephalus.[5]
[edit] Acquired hydrocephalus
This condition is acquired as a consequence of CNS-infections, meningitis, brain tumors, head trauma, intracranial hemorrhage (subarachnoid or intraparenchymal) and is usually extremely painful for the patient.
[edit] Symptoms
Symptoms of increased intracranial pressure may include headaches, vomiting, nausea, papilledema, sleepiness, or coma. Elevated intracranial pressure may result in uncal and/or cerebellar tonsill herniation, with resulting life threatening brain stem compression. For details on other manifestations of increased intracranial pressure:
Main article: intracranial pressure
The triad (Hakim triad) of gait instability, urinary incontinence and dementia is a relatively typical manifestation of the distinct entity normal pressure hydrocephalus (NPH). Focal neurological deficits may also occur, such as abducens nerve palsy and vertical gaze palsy (Parinaud syndrome due to compression of the quadrigeminal plate, where the neural centers coordinating the conjugated vertical eye movement are located).
Main article: normal pressure hydrocephalus
[edit] Effects
Because hydrocephalus injures the brain, thought and behavior may be adversely affected. Learning disabilities are common among those with hydrocephalus, who tend to score better on verbal IQ than on performance IQ, which is thought to reflect the distribution of nerve damage to the brain. However, the severity of hydrocephalus differs considerably between individuals and some are of average or above average intelligence. Someone with hydrocephalus may have motivation and visual problems, problems with coordination, and may be clumsy. They may hit puberty earlier than the average child (see precocious puberty). About one in four develops epilepsy.
Because the problem resides inside the head, doctors rely heavily upon computer tomography scanning (CT scans), which may be used frequently to evaluate the condition of the disorder throughout the patient's life. Each CT scan exposes the patient to many times the level of x-ray radiation of a chest x-ray. See CT radiation exposure.
[edit] Treatment
Hydrocephalus treatment is surgical. It involves the placement of a ventricular catheter (a tube made of silastic), into the cerebral ventricles to bypass the flow obstruction/malfunctioning arachnoidal granulations and drain the excess fluid into other body cavities, from where it can be resorbed. Most shunts drain the fluid into the peritoneal cavity (ventriculo-peritoneal shunt), but alternative sites include the right atrium (ventriculo-atrial shunt), pleural cavity (ventriculo-pleural shunt), and gallbladder. A shunt system can also be placed in the lumbar space of the spine and have the CSF redirected to the peritoneal cavity (LP Shunt). An alternative treatment for obstructive hydrocephalus in selected patients is the endoscopic third ventriculostomy (ETV), whereby a surgically created opening in the floor of the third ventricle allows the CSF to flow directly to the basal cisterns, thereby shortcutting any obstruction, as in aqueductal stenosis. This may or may not be appropriate based on individual anatomy.
[edit] Shunt complications
Examples of possible complications include shunt malfunction, shunt failure, and shunt infection. Although a shunt generally works well, it may stop working if it disconnects, becomes blocked (clogged), infected, or it is outgrown. If this happens the cerebrospinal fluid will begin to accumulate again and a number of physical symptoms will develop (headaches, nausea, vomiting, photophobia/light sensitivity), some extremely serious, like seizures. The shunt failure rate is also relatively high (some sources site up to 45% chance of shunt failure in the first year following placement) and it is not uncommon for patients to have multiple shunt revisions within their lifetime.
The diagnosis of cerebrospinal fluid buildup is complex and requires specialist expertise.
Another complication can occur when CSF drains more rapidly than it is produced by the choroid plexus, causing symptoms -listlessness, severe headaches, irritability, light sensitivity, auditory hyperesthesia (sound sensitivity), nausea, vomiting, dizziness, vertigo, migraines, seizures, a change in personality, weakness in the arms or legs, strabismus, and double vision - to appear when the patient is vertical. If the patient lies down, the symptoms usually vanish in a short amount of time. A CT scan may or may not show any change in ventricle size, particularly if the patient has a history of slit-like ventricles. Difficulty in diagnosing overdrainage can make treatment of this complication particularly frustrating for patients and their families.
Resistance to traditional analgesic pharmacological therapy may also be a sign of shunt overdrainage or failure. Diagnosis of the particular complication usually depends on when the symptoms appear - that is, whether symptoms occur when the patient is upright or in a prone position, with the head at roughly the same level as the feet.
[edit] Shunts in Developing Countries
Since the cost of shunt systems is beyond the reach of common people in developing countries, most of them die without even getting a shunt. Worse is the rate of revision in shunt systems that adds to the cost of shunting many times. Looking at this point, a study done by Dr. Benjamin C. Warf comparing different shunt systems and highlighting the role of low cost shunt system in most of the developing countries. This study has been published in Journal of Neurosurgery: Pediatrics May 2005 issue. It is about comparing Chhabra shunt system to those of the shunt systems from developed countries. The study was done in Uganda and the shunts were donated by International Federation for Spina Bifida and Hydrocephalus.
[edit] Exceptional case
One interesting case involving a person with past hydrocephalus was a 44-year old French man, whose brain had been reduced to little more than a thin sheet of actual brain tissue, due to the buildup of fluid in his skull. The man, who had a shunt inserted into his head to drain away fluid (which was removed when he was 14), went to a hospital after he had been experiencing mild weakness in his left leg.
DWS: All of the black in the middle is cerebrospinal fluid and the brain matter is the rim of white along the outside of the skull. This is a screen shot from a Fox News report.
In July of 2007, Fox News quoted Dr. Lionel Feuillet of Hopital de la Timone in Marseille as saying: "The images were most unusual... the brain was virtually absent."[6] When doctors learned of the man's medical history, they performed a computed tomography (CT) scan and magnetic resonance imaging (MRI) scan, and were astonished to see "massive enlargement" of the lateral ventricles in the skull. Intelligence tests showed the man had an IQ of 75, below the average score of 100 but not considered mentally retarded or disabled, either.
Remarkably, the man was a married father of two children, and worked as a civil servant, leading a normal life, despite having little brain tissue. "What I find amazing to this day is how the brain can deal with something which you think should not be compatible with life," commented Dr. Max Muenke, a pediatric brain defect specialist at the National Human Genome Research Institute. "If something happens very slowly over quite some time, maybe over decades, the different parts of the brain take up functions that would normally be done by the part that is pushed to the side."[7]
To find out if I had this, we had to travel to Memphis, TN. Memphis is a three hour drive from where we lived but it was the nearest place to have a ct-scan machine. This was the only way of telling if I had hydrocephalus. The answer was no. There was a fluid issue but not to the extent of being hydrocephalus. The machine didn't show this but a 1977-1978 ct machine was very primitive. Twenty seven years later my son would go through the same testing based on the same fear and this would be his diagnosis so it was likely mine as well but back in the late 1970's things weren't as clear as they were in 2004.
My mom said the doctors placed me on therapy to strengthen my back and neck muscles and I hated it. While my two weeks older cousin was about to begin crawling, I was still not lifting my head off the floor. The exercises caught me up and I walked at 13 months old--a little late but no later than my dad who hadn't went through what I had.
The first years of my life were normal except for one thing. From about age 3 to age 9, I would wake up in the morning with a flat stomach and by the end of the day I looked like a starving Ethiopian kid from swelling. Doctors insisted it was me swallowing air. Mom said she never felt like that answer was good enough but took it until events went downhill enough for us to find the true cause of the swelling. Prior to this, I had my first true experience with something related to Cowden Syndrome. Though hemangiomas are rare, they do happen and in 1984 when I was 6, my mom found one.
She had no idea what it was. I will never forget the fear in her voice. My parents spoiled me and my mom was still washing my hair when I was 6. She liked to do it in the kitchen sink. I remember looking down the drain many times wondering when she would be done with washing my hair so I could play. This particular day was different. I heard her scared voice say "I have found a lump." She could see my pulse beating inside the lump. She had me put my finger up there and I felt it as well. I thought it was weird but didn't know why she was so scared. Though I had experience with kids becoming sick and dying at that point--my cousin lost her life in an accident the year prior to this, I thought kids always died by accident. I didn't understand the seriousness. I thought of it a lot like I did when my cousin and I were playing in the swingset that same year and I got hit in the head with the two seated swing. I was bleeding very badly and mom was set to take me to the emergency room but my aunt was there and she calmly took me to the restroom and once the blood was washed away it was obvious there was only a small scratch there. I thought mom was overreacting about the lump but went with her to see the doctor.
To rule out aneurysm (though at that point no one was known to have this problem in my family), I underwent my first operation in Jan. 1984 (a side note--my dad had aneurysm burst on his brain 10 years after this surgery and made it through it despite terrible odds).
It was held at Lebonheur Children's Hospital. I have very faded and dark memories of it. I remember the waiting room before going back. We had been allowed to pick out a gift and I can't remember what I chose though I think it was a necklace. The anesthesiologist asked me what "flavor" of gas I wanted. Strawberries have always been my favorite everything so that was the answer.
The last thing I remember was thinking "this tastes awful--nothing like strawberries" and then--darkness.
I don't remember recovery room and I praise the Lord for it because with all twenty something operations it has been the roughest part of the operation. I have a gap in my memory until right before I was allowed to leave. I was prancing up and down the hallway trying to release some of the six year old energy I had when I heard a small voice say "come in my room."
I have always been shy but back then it wasn't nearly as bad. Still, I hesitated. The voice sounded nice but I knew you never could tell. My dad had been with me and he told me to go in--so I did.
When I walked in, I saw a girl who looked about my own age in bed. She had her leg attached to something that was attached to the ceiling. I whispered to my dad and he said she apparently broke it. What she said next confirmed it. She seemed very chipper and was really nice. I almost hated going home but already a part of me hated Memphis, TN and I was ready to go. The little girl's name was Amanda and she was about 1 1/2 years older than me. We traded addresses. We kept in touch until not long before I would first be diagnosed with cancer. Our parents wrote our letters because neither of us could write very well. My dad told me that Amanda had spinal bifida. He tried to explain to me what that meant and that she might die young as my cousin had but a young mind has a way of blocking out the bad. I decided she quit writing because we grew apart though my dad did bring up she could have died. I was sure that wasn't it. Kids die in accidents and not by illness. As a matter of fact, a year later I told my Sunday school teacher that if someone sat home and didn't leave they couldn't have a car accident and die, if they ate right and exercised they would be healthy, etc--how does someone die if they do everything perfectly? By age 9, I would know.
The surgery showed an AV malformation. After it was done, I no longer had nosebleeds and life was normal. Until age 9 when things got very confusing for me and my parents world seemed to be crashing down on them.
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