I remember my first spinal fusion like it was yesterday, but realistically it was 21 years ago. I was 7 years old, and I had severe kyphoscoliosis. My surgeon wanted to wait as long as he could before he did the fusion but my spine was progressing way to fast. He was only able to get minimal correction. I was in the hospital for a month. I wasn't able to get out of bed until my cast was made. Thankfully I had wonderful family who stayed with me, and I had awesome roommates. One memory stands out of my Uncle Doug playing goldfish with me and a little girl named Angel. A memory so simple, stays with you for a lifetime. Even though I was in a lot of pain, kids bounce back pretty quick. When I finally got my cast and was able to get out of bed, I had to learn how to walk again. The doctors say now, that they shouldn't have fused me that young, that it caused all kinds of problems. Shoulda coulda woulda... hindsight and all that... It is, what it is.
Times have definitely changed though. I remember the last spinal fusion I had 4 years ago. They get you out of bed the very next day. Gone is the time where they made you stay immobile. I can see their logic, they want you up and moving, helping the healing process, and to make sure you don't get clots. But man, if you've ever had major back surgery you would know, that just getting up and walking the next day is no simple task.
I can honestly say neither surgeries helped, my very first, or last... heck even the ones in the middle. Im unique and my body is very tempermental. I live with the fact that maybe it's just not my time to have a "normal" back.
Who knows, in another 21 years, the surgeries they do now will probably be a thing of the past. We can only hope.
Thursday, December 8, 2011
Tuesday, December 6, 2011
Human pincushion
I hate needles... always have, always will. It probably stems from when I was little and had to be poked a zillion times because of the cancer.. My veins are shot all to heck, so the techs, or vampires I like to call them, never get it in the first try.
I had a scar revision surgery on my back yesterday. I told myself this is the last surgery, I hate the feeling of waking up from anesthesia. You get the shakes real bad, and the naushea is just horrible. I hate the feeling more than the surgery/recovery itself. Give me pain anyday. But anywho, I digress, I had the surgery done not for vain reasons but because of the loose skin i had around the scar. It was hanging there from the way my back is shaped, and i would get sores underneath.. Not attractive i know, lol. My doctor already did one before, but he didn't get enough skin, so I had to go back under the knife. It wouldn't have been too bad if my IV's hadn't kept blowing out. My arms look like a heroin addicts. I've got so many sticks, and bruising up and down my arms.
Thankfully though, my surgery went well. Im always a bit paranoid now when I go into surgery. When I was 21 I reasoned with God that he couldn't let me die yet because I hadn't accomplished anything, like have a family, husband, kids, a home, etc... I wasn't ready. So everytime I went into surgery I would feel confident in the knowledge that God wouldn't let me down and let me suffer in life for nothing. Now that I have a family, and everything I've ever wanted I feel God could take me anytime. Does that make sense? I fear that it's the little surgery that will do me in. So I get very anxious. But I will save this topic for another time.. and just end here with saying I am very thankful everything went okay, and pray this is my last surgery. I'm tired of being a human pincushion.
I had a scar revision surgery on my back yesterday. I told myself this is the last surgery, I hate the feeling of waking up from anesthesia. You get the shakes real bad, and the naushea is just horrible. I hate the feeling more than the surgery/recovery itself. Give me pain anyday. But anywho, I digress, I had the surgery done not for vain reasons but because of the loose skin i had around the scar. It was hanging there from the way my back is shaped, and i would get sores underneath.. Not attractive i know, lol. My doctor already did one before, but he didn't get enough skin, so I had to go back under the knife. It wouldn't have been too bad if my IV's hadn't kept blowing out. My arms look like a heroin addicts. I've got so many sticks, and bruising up and down my arms.
Thankfully though, my surgery went well. Im always a bit paranoid now when I go into surgery. When I was 21 I reasoned with God that he couldn't let me die yet because I hadn't accomplished anything, like have a family, husband, kids, a home, etc... I wasn't ready. So everytime I went into surgery I would feel confident in the knowledge that God wouldn't let me down and let me suffer in life for nothing. Now that I have a family, and everything I've ever wanted I feel God could take me anytime. Does that make sense? I fear that it's the little surgery that will do me in. So I get very anxious. But I will save this topic for another time.. and just end here with saying I am very thankful everything went okay, and pray this is my last surgery. I'm tired of being a human pincushion.
Friday, December 2, 2011
Mom's kryptonite
Sometimes I feel like a complete failure as a mother. When I can't rough house with the girls, when I can't carry them around the store... It's the little things. I know I try and accept the limitations I have with my back, but it just pisses me off when I can't do something. I guess I should say I shouldn't do... because I can do anything. I just know that if I carry them around for awhile, Im probably not going to be able to move the next day.
I should be taking Morgan to the doctors today, but since I did so much yesturday, taking the kids out, and being on my feet the whole week with little help, I now am in bare movement mode. Bare movement mode is, where I sit on the floor and play with the kids, I try to only lift Morgan when she goes down for a nap, feeding time. Thankfully she can crawl/walk now so it makes it a lot easier.... but anyways, I digress... I am in bare movement mode, so I had to reschedule till tuesday. Complete failure.
I try and make up for those things though. I play on the floor all day with the kids. We do crafts, I chase them around the house. I should be thankful that I can do all that, and I am. I just wish sometimes I could do more.
I guess I will accept for now that I can be supermom with some weakness. Even superman had his Kryptonite.
I should be taking Morgan to the doctors today, but since I did so much yesturday, taking the kids out, and being on my feet the whole week with little help, I now am in bare movement mode. Bare movement mode is, where I sit on the floor and play with the kids, I try to only lift Morgan when she goes down for a nap, feeding time. Thankfully she can crawl/walk now so it makes it a lot easier.... but anyways, I digress... I am in bare movement mode, so I had to reschedule till tuesday. Complete failure.
I try and make up for those things though. I play on the floor all day with the kids. We do crafts, I chase them around the house. I should be thankful that I can do all that, and I am. I just wish sometimes I could do more.
I guess I will accept for now that I can be supermom with some weakness. Even superman had his Kryptonite.
Thursday, December 1, 2011
Morgan turned 1
Morgan turned 1 on 11-18! I cannot even believe it. I am so blessed to have amazing children. I am so glad I took the 50-50 chance and went through with the pregnancies. My children are the light of my life.
We celebrated Morgan's birthday at a hall, and I have to admit she was a bit overwelmed, lol. She clung and cried for the first good bit. She enjoyed opening the presents though. The cake was the best part. She cried when I tried taking it away from her. lol, I was so afraid she would have an upset belly afterwards. My little chunky monkey loves to eat.
It was nice seeing everyone, family and friends. It's moments like these that I hate living so far away from everyone. I wish I could bottle everyone up and move them down south.
We celebrated Morgan's birthday at a hall, and I have to admit she was a bit overwelmed, lol. She clung and cried for the first good bit. She enjoyed opening the presents though. The cake was the best part. She cried when I tried taking it away from her. lol, I was so afraid she would have an upset belly afterwards. My little chunky monkey loves to eat.
It was nice seeing everyone, family and friends. It's moments like these that I hate living so far away from everyone. I wish I could bottle everyone up and move them down south.
Off to see the wizard
I went and seen my spine surgeon a few days ago. I still have mixed feelings about that. I haven't seen him in 2 years and I felt that times have differently changed. He used to be very personable, had his fellows, but this time, it was in and out, scheduling surgeries left and right.
He said my spine hasn't shifted per my x-rays. The MRI didn't take because the rods in my back interfered... so not really sure how the inside of the spine looks. He also didn't address my osteoporosis and what effect that will have on my spine.. He just said, "hmm she's awfully young to have that." umm duh, lol, but I do. Two tests from two different states do not lie.
I can honestly say I didn't want another surgery though, because I have had one to many failed. I would have liked some answers on how to get some pain relief. That would have been nice. He's a surgeon though, that's all he really does, so maybe I'll have to look elsewhere.
On our way home from St. Louis, Mo my mom and I hit a deer on the expressway. It smashed my moms car pretty good. It hurt pretty bad too. But what else is new. I was going to go to the ER but its not like they can really do anything.
I'll probably do what I always do, and suffer in silence.
He said my spine hasn't shifted per my x-rays. The MRI didn't take because the rods in my back interfered... so not really sure how the inside of the spine looks. He also didn't address my osteoporosis and what effect that will have on my spine.. He just said, "hmm she's awfully young to have that." umm duh, lol, but I do. Two tests from two different states do not lie.
I can honestly say I didn't want another surgery though, because I have had one to many failed. I would have liked some answers on how to get some pain relief. That would have been nice. He's a surgeon though, that's all he really does, so maybe I'll have to look elsewhere.
On our way home from St. Louis, Mo my mom and I hit a deer on the expressway. It smashed my moms car pretty good. It hurt pretty bad too. But what else is new. I was going to go to the ER but its not like they can really do anything.
I'll probably do what I always do, and suffer in silence.
I am who I am
When you think about scoliosis all people think about is the shape, the curve, the appearance. So much more goes with scoliosis. The pain is what gets me. I could care less about the appearance. So my back curves, sticks out, who cares. I'm still beautiful, lol, conceited I know.
A doctor had told me once that my scars on my back were hideous, lol, yea he was a real charming man, made me feel all warm and fuzzy. Anyways, he told me I could have plastic surgery to fix them. I told him I am not ashamed of my scars they are a part of who I am.
I am who I am... if you don't like it, that's your loss, if someone is going to be that judgmental about my appearance then they don't need to be in my life, it's as simple as that. The most important thing I've learned is just to enjoy life.
I'll take my life as a diamond in the rough. My imperfections as well as all my bright, strong shiny qualities seem to (happily) make me, me. I am confident. There is no use whining and complaining about how I got shafted. My back is all jacked up, I have scars, I can't change that. No point hiding it and being ashamed. It's a waste of time.
So no the shape of scoliosis, or the hunchback appearance I could care less. It's the pain. I've endured surgeries in hopes to ease the pain. I've done shots in the back, physical therapy, and more physical therapy. We've done braces, we've done medicine. I can honestly say everything that has been done, probably has been done. So the only thing that seems to be left is to grin and bear it.
A doctor had told me once that my scars on my back were hideous, lol, yea he was a real charming man, made me feel all warm and fuzzy. Anyways, he told me I could have plastic surgery to fix them. I told him I am not ashamed of my scars they are a part of who I am.
I am who I am... if you don't like it, that's your loss, if someone is going to be that judgmental about my appearance then they don't need to be in my life, it's as simple as that. The most important thing I've learned is just to enjoy life.
I'll take my life as a diamond in the rough. My imperfections as well as all my bright, strong shiny qualities seem to (happily) make me, me. I am confident. There is no use whining and complaining about how I got shafted. My back is all jacked up, I have scars, I can't change that. No point hiding it and being ashamed. It's a waste of time.
So no the shape of scoliosis, or the hunchback appearance I could care less. It's the pain. I've endured surgeries in hopes to ease the pain. I've done shots in the back, physical therapy, and more physical therapy. We've done braces, we've done medicine. I can honestly say everything that has been done, probably has been done. So the only thing that seems to be left is to grin and bear it.
no hope for kids
Back in 2007, I thought there was no hope for children. I just went through a devastating surgery that didn't give me the results I wanted. I thought I would never have children. You see because of the kyphoscoliosis my body is squished. There is little room for my heart and lungs. My lung capacity is only 30%. Anyone in a medical field knows that that is bad. However that's all I've ever known. So my body has learned to adapt.
The doctors say if you have pulmonary hypertension you have a 50-50 chance of survival if you get pregnant. Something about the extra blood flow that pregnancy creates causes your heart to work harder. In my case my heart already works hard because of my smashed lungs, so pregnancy is like a double whammy.
The doctors advice: don't get pregnant, cause most likely it will kill you!
Truthfully I never thought it possible to get pregnant anyways, because when you have cancer as a child the chemo does wicked stuff to your body which usually makes you infertile.
Boy was everyone wrong!
Right after my failed surgery in 2007, I got pregnant. I amazed doctors with how well I tolerated the pregnancy. I didn't need bed rest, my back barely hurt, and it didn't get hard to breathe until the 8th month. I delivered a healthy baby girl prematurely on September 25, 2008. She was 5lbs 12oz. She was perfect, MaKena Mae.
My miracle baby
.
But I didn't stop at just one, I ended up getting pregnant again. And on November 18, 2010, a 6lbs 9oz baby girl was born. Morgan Marie. The light of my life.
.
I beat the odds once again.
Looking back at my life I realize how amazing it has been. Yes there has been great suffering, but there has been great joys too. That's what makes life grand.
The doctors say if you have pulmonary hypertension you have a 50-50 chance of survival if you get pregnant. Something about the extra blood flow that pregnancy creates causes your heart to work harder. In my case my heart already works hard because of my smashed lungs, so pregnancy is like a double whammy.
The doctors advice: don't get pregnant, cause most likely it will kill you!
Truthfully I never thought it possible to get pregnant anyways, because when you have cancer as a child the chemo does wicked stuff to your body which usually makes you infertile.
Boy was everyone wrong!
Right after my failed surgery in 2007, I got pregnant. I amazed doctors with how well I tolerated the pregnancy. I didn't need bed rest, my back barely hurt, and it didn't get hard to breathe until the 8th month. I delivered a healthy baby girl prematurely on September 25, 2008. She was 5lbs 12oz. She was perfect, MaKena Mae.
My miracle baby
.
But I didn't stop at just one, I ended up getting pregnant again. And on November 18, 2010, a 6lbs 9oz baby girl was born. Morgan Marie. The light of my life.
.
I beat the odds once again.
Looking back at my life I realize how amazing it has been. Yes there has been great suffering, but there has been great joys too. That's what makes life grand.
Flash back: 2007
March 2007:
So I have a big dilemma that has been stressing me out. My doctor got ahold of me, and he wants to do back surgery on me. I'll be honest, I was so excited to hear this. I've always wanted them to remove that part of my spine that is really bad, and straighten it. I've read reports, and there is a lot of success. My doctor said that it isn't as risky as he once thought, and he was confident that it would be an improvement. My first thought, was hell yea, it's about time. Then doubt sets in.
I'm actually doing really good. Yea, I hate going to get shots in my back every week, but for the first time it actually gets rid of my pain. I'm in the best shape I've every been. I'm happy. Things are good. I'm afraid to jinx it ya know. What happens if I have the surgery and the risk is too great, and im paralysed…that would suck… plus having another surgery worries my parents…I hate worrying them. If it was just me, I would do it in a heartbeat. What can I say, I like to gamble and take risks…but I have them to think about…
I've always believed that some risks in life are worth taking, it makes life interesting. Whatever happens, happens. Is that selfish of me, just thinking about me, and not what the effects the surgery could have on others? Then again, don't i deserve to be a little selfish now and again.
Worst case scenario, I DIE! which would totally suck dont' get me wrong, but hey we all die sometime, I'm not afraid, but i worry how that would affect the family. Next case scenario, I can't feel my legs. Not good, but hey I'm not dead, so i could adapt. I'm a pretty happy person, and I would survive....however, that would put a strain on my family.... Another scenario, the surgery wont be successful, and I'll be back to square one. But omg, if it actually worked, the best case scenario, a straighter back...that would be awesome....
Oh what should I do…..
Fast Forward: 2011
I decided the risk was worth it. At the time I felt that this was my only chance to get a normal looking spine. Not only would it look better but it would also open my chest up and make more room for my lungs and heart. So maybe one day I could have children. The surgery was in November. By this time so much had changed, I had a fiancée, I had moved to Louisiana... I had so much to live for.... but I still couldn't say no. I went into the surgery with so many hopes, and I woke up devastated.
The surgeon wanted to remove part of the spine and put it back together, but when he removed the vertebrae I was missing the dura that protects the spinal cord. It caused a massive spinal fluid leak, so he had to do damage control and repair the leak. He stopped the procedure and that was that. Same back, no change.
I couldn't believe I went through all that, not only did I deal with recovering from a failed surgery but for 2 months I had a slow spinal fluid leak. So I couldn't move, I was in so much pain... I would lay around, and feel that my life meant nothing. I had to have another surgery to repair the leak. After that, my chances of having a better spine was shattered, that was my last chance, and it was gone. Plus that now meant now I couldn't have children....
So I have a big dilemma that has been stressing me out. My doctor got ahold of me, and he wants to do back surgery on me. I'll be honest, I was so excited to hear this. I've always wanted them to remove that part of my spine that is really bad, and straighten it. I've read reports, and there is a lot of success. My doctor said that it isn't as risky as he once thought, and he was confident that it would be an improvement. My first thought, was hell yea, it's about time. Then doubt sets in.
I'm actually doing really good. Yea, I hate going to get shots in my back every week, but for the first time it actually gets rid of my pain. I'm in the best shape I've every been. I'm happy. Things are good. I'm afraid to jinx it ya know. What happens if I have the surgery and the risk is too great, and im paralysed…that would suck… plus having another surgery worries my parents…I hate worrying them. If it was just me, I would do it in a heartbeat. What can I say, I like to gamble and take risks…but I have them to think about…
I've always believed that some risks in life are worth taking, it makes life interesting. Whatever happens, happens. Is that selfish of me, just thinking about me, and not what the effects the surgery could have on others? Then again, don't i deserve to be a little selfish now and again.
Worst case scenario, I DIE! which would totally suck dont' get me wrong, but hey we all die sometime, I'm not afraid, but i worry how that would affect the family. Next case scenario, I can't feel my legs. Not good, but hey I'm not dead, so i could adapt. I'm a pretty happy person, and I would survive....however, that would put a strain on my family.... Another scenario, the surgery wont be successful, and I'll be back to square one. But omg, if it actually worked, the best case scenario, a straighter back...that would be awesome....
Oh what should I do…..
Fast Forward: 2011
I decided the risk was worth it. At the time I felt that this was my only chance to get a normal looking spine. Not only would it look better but it would also open my chest up and make more room for my lungs and heart. So maybe one day I could have children. The surgery was in November. By this time so much had changed, I had a fiancée, I had moved to Louisiana... I had so much to live for.... but I still couldn't say no. I went into the surgery with so many hopes, and I woke up devastated.
The surgeon wanted to remove part of the spine and put it back together, but when he removed the vertebrae I was missing the dura that protects the spinal cord. It caused a massive spinal fluid leak, so he had to do damage control and repair the leak. He stopped the procedure and that was that. Same back, no change.
I couldn't believe I went through all that, not only did I deal with recovering from a failed surgery but for 2 months I had a slow spinal fluid leak. So I couldn't move, I was in so much pain... I would lay around, and feel that my life meant nothing. I had to have another surgery to repair the leak. After that, my chances of having a better spine was shattered, that was my last chance, and it was gone. Plus that now meant now I couldn't have children....
Listen up boys and girls: the story continues
11 back surgeries is a lot. Most of them I can't even remember. I just know they failed. One though stands out most of all. I had a procedure called "halo traction" when I was 21 years old. It was not fun at all. Halo traction is basically where they hook up weights to you and stretch you slowly.
The doctors stuck me in a children's hospital, Shriners Hospital actually, god I hate clowns, lol, anyways, I was in there for almost 2 months. I ended up having a spinal fusion, they put in 2 rods and 16 screws.
Most people don't know this, but I came very close to dying from that surgery. I tell you, it makes you appreciate life more. I ended up losing a lot of blood. Then I got a blood infection, went into s hock. It was so bad and scary, my heart was racing, I couldn't catch my breathe, then I couldn't get warm. I was shaking so bad, they couldn't get a pulse read on me. It was bad. I had to stay another 2 weeks in the hospital taking some strong antibiotics and junk.. When I finally got to go home, I had to wear this hideous brace.
So yeah, I've been through a lot, and no I don't want your pity, or u feeling sorry for me, cause that's just a waste. I like my life...and I wouldn't be the person I am today without going through all of it.
The doctors stuck me in a children's hospital, Shriners Hospital actually, god I hate clowns, lol, anyways, I was in there for almost 2 months. I ended up having a spinal fusion, they put in 2 rods and 16 screws.
Most people don't know this, but I came very close to dying from that surgery. I tell you, it makes you appreciate life more. I ended up losing a lot of blood. Then I got a blood infection, went into s hock. It was so bad and scary, my heart was racing, I couldn't catch my breathe, then I couldn't get warm. I was shaking so bad, they couldn't get a pulse read on me. It was bad. I had to stay another 2 weeks in the hospital taking some strong antibiotics and junk.. When I finally got to go home, I had to wear this hideous brace.
So yeah, I've been through a lot, and no I don't want your pity, or u feeling sorry for me, cause that's just a waste. I like my life...and I wouldn't be the person I am today without going through all of it.
The Beginning: Neuroblastoma
I guess the only way to start a good story is to go back to the very beginning. My mom said I was a pretty good baby. Happy, smiley. She didn't notice a change until I was about 11 months old. By this time I was cranky, I wouldn't walk, I had stomach issues. She took me to doctor after doctor. They would say "oh she's just a lazy, cranky baby," but my mother knew different. Finally they figured it out. Neuroblastoma!
Most people have never even heard of neuroblastoma. In yet it is the 3rd most common childhood cancer. It is the top killer too, 25% survival rate. Its a parents worst nightmare. My neuroblastoma, was a giant tumor wrapped around the spine. First thing they did was surgery to remove the tumor, which was risky to my spine. Then they did chemo and radiation. For 2 whole years they went back and forth. Another surgery, more radiation and chemo. Another tumor in the abdomen, more chemo and radiation. I do believe I've had enough radiation I could probably glow in the dark ;o)
Cancer is a relentless beast that takes hold and doesn't want to release you. It is a fight.
Some say I'm a miracle. I don't know about that... I know it was a miracle I survived. Not without consequences, cause things in life always have an upside and downside. A balance I guess you can call it.
Childhood cancer comes with a price. All that chemo and radiation and surgeries have long lasting effects. I have missing teeth, Im short, but most of all it caused my kyphoscoliosis. It gave me three huge curves to my spine. One curve goes sideways which is scoliosis. Another goes outwards, think hunchback of Notre Dame. The other is in the lower back that goes inwards. I've had 11 back surgeries throughout my life. Most of them are failed back surgeries.......
Most people have never even heard of neuroblastoma. In yet it is the 3rd most common childhood cancer. It is the top killer too, 25% survival rate. Its a parents worst nightmare. My neuroblastoma, was a giant tumor wrapped around the spine. First thing they did was surgery to remove the tumor, which was risky to my spine. Then they did chemo and radiation. For 2 whole years they went back and forth. Another surgery, more radiation and chemo. Another tumor in the abdomen, more chemo and radiation. I do believe I've had enough radiation I could probably glow in the dark ;o)
Cancer is a relentless beast that takes hold and doesn't want to release you. It is a fight.
Some say I'm a miracle. I don't know about that... I know it was a miracle I survived. Not without consequences, cause things in life always have an upside and downside. A balance I guess you can call it.
Childhood cancer comes with a price. All that chemo and radiation and surgeries have long lasting effects. I have missing teeth, Im short, but most of all it caused my kyphoscoliosis. It gave me three huge curves to my spine. One curve goes sideways which is scoliosis. Another goes outwards, think hunchback of Notre Dame. The other is in the lower back that goes inwards. I've had 11 back surgeries throughout my life. Most of them are failed back surgeries.......
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