If you can remember my friend Mike Saager in your prayers this week. Tomorrow he goes in for a very serious heart surgery. He was my Sunday School teacher years ago and has been a good friend since. He is nervous about this surgery and it is a major surgery. This will be his second open heart surgery and he needs our prayers.
Please pray for comfort and for a smooth surgery. I know the power of prayers.
Thank you and goodnight!
Tara Lynn
Monday, February 28, 2011
Quilt, Haircut, and more surgery pictures
I never write when I don't feel good. I just can't. It seems like this recovery has been much more difficult than the last time. That is why I have not written in so long. I send my mom to write things at times because I know there are many of you who do want to know what is going on. So here is the run down of the last week. I have spent most of my hours asleep or watching "The Biggest Loser.: Watching biggest loser did something for my body because I lost over 10 pounds. I am currently trying to gain them all back to coat my stomach from the meds. Every time I want pain meds, I have to eat. The doctors are smart and they will put that weight back on me! It seems like I am riding a constant roller coaster. I am good one day and so I do a lot and try to get everything done. It backfires and I am asleep the whole next day. After resting for a day I feel great again so I go crazy for another day. The cycle never ends. I went to four hours of church yesterday and to an open house for a missionary friend which was obviously too much because today I can hardly keep my eyes lids open! My body is really good at telling me when to sleep! :)
There are many pictures that we have taken recently which include my first haircut and my Young Women.
Haircuts are cool and hurt more when you have stitches and staples in your head. My mullet is gone. That's the haircut excitement...
Now to my Young Women.
About a month ago the Northpoint young women asked if I would join them for their Wednesday night activity. I, of course, agreed being very excited to be in young womens again. I kept checking the date waiting for the 24th to come around. We were worried that I would not make it because I had just barely come home from the hospital. I had the stitches and staples still to prove it. I rested the whole day for my outing that night and made it to young womens. I actually got ready and put normal clothes on to go see them...I had not put on my pants in a long time and realized I was in trouble because they would not stay on my body. We made it work and made it to mutual where I was greeted with one of the most special gifts I have ever received. The young women had made me a quilt! A full on, quilted quilt. For those of you who do not quilt, a hand made quilted quilt is a really really big deal. They had me sit in a special chair and talked about love and service. These young women have shown so much love for me. There will be pictures of the quilt to follow. On the quilt there were pieces that the girls and a few leaders had written on. It was the most beautiful quilts I have ever seen and now I own it. These girls and leaders have taught me something special. The girls wrote inside the quilt and told me things that they had sacrificed and learned. Some said that they were going to the temple every month along with praying for me. One girl said she was going to give up bad music along with prayers. They were combining sacrifice and prayers to plead with the Lord. It was truly amazing and something I will never forget. They are calling on the powers of heaven and it is so humbling to look into all their faces and see the love they have for me. All these girls love me and some of them I do not even know! Just goes to show what prayer and service can do. I don't think that they will ever fully comprehend what they have done for me. I am almost scared to use the quilt because I want it to last forever but there are times that I need a hug and some uplifting and I go to my quilt and surround myself with prayers and love. I knew that if I started reading them all in front of them I would have bawled so instead I looked at them and thought of the temple and started bawling. It took me back to when I was a young woman looking up to the married girls. It kinda was weird because I still see myself as a little girl. I looked at them and all I could think about was the temple. I had this burning desire to tell them about the temple but I couldn't right then. Then Sister Knight said something about the temple and I about burst at the sight. I promptly piped in and told the girls exactly what I thought about the temple and them going to the temple. I had to tell them what it meant to me and how hard it can be to get there. I had to warn them that Satan will try and test them. The leaders say it all the time and it is true but I had to tell them. I believe it strongly that Satan will try to ruin the rest of their lives by taking away the temple. I just saw their perfect young faces and felt the love of the Savior for them. I got scared knowing that Satan will try and test his faithful and I wanted them to know that they needed to be strong. I still can't get the thought out of my mind about the temple. I wish I had enough energy to make it down there because it honestly consumes my mind more than pain or fear. All I care about right now is the temple. I feel like me and the temple have a magnetic draw to each other but the devil is standing between us doing everything he can to stop that. I know that right now I can't go to the temple physically so I try to go in my mind. It may sound weird but I ponder when I can't sleep and I take myself through all of the ordinances and I walk myself through the beautiful temple doors. I smile at all the workers and I feel the peace that is in the temple. It actually works better than Advil! I love to see the temple and my goal is to make it there physically this week, even if it is just a drive by, I will go to the temple this week and show Satan who is in charge! :)
Back to Wednesday night. Right when I got home from young womens there was a knock at my door and the Estate Groves Young Women MiaMaids were there with treats and cards. Great, here come the tears again! :) I looked at them and felt the same thing about the temple. I wanted them all to sit down and let me get on my soap box about the temple but it was getting late and I let them back out the door. So here it is to all the Estate Groves young women. Go to the temple often and don't let Satan get in your way. Life is tough, but you have to be tougher!
I actually go on the internet sometimes and look at all the pictures of the temple. I can make my little room a peaceful haven in a short time by focusing on the temple. It has been an amazing part of my week.
Now for a few pictures! :)
There are many pictures that we have taken recently which include my first haircut and my Young Women.
Haircuts are cool and hurt more when you have stitches and staples in your head. My mullet is gone. That's the haircut excitement...
Now to my Young Women.
About a month ago the Northpoint young women asked if I would join them for their Wednesday night activity. I, of course, agreed being very excited to be in young womens again. I kept checking the date waiting for the 24th to come around. We were worried that I would not make it because I had just barely come home from the hospital. I had the stitches and staples still to prove it. I rested the whole day for my outing that night and made it to young womens. I actually got ready and put normal clothes on to go see them...I had not put on my pants in a long time and realized I was in trouble because they would not stay on my body. We made it work and made it to mutual where I was greeted with one of the most special gifts I have ever received. The young women had made me a quilt! A full on, quilted quilt. For those of you who do not quilt, a hand made quilted quilt is a really really big deal. They had me sit in a special chair and talked about love and service. These young women have shown so much love for me. There will be pictures of the quilt to follow. On the quilt there were pieces that the girls and a few leaders had written on. It was the most beautiful quilts I have ever seen and now I own it. These girls and leaders have taught me something special. The girls wrote inside the quilt and told me things that they had sacrificed and learned. Some said that they were going to the temple every month along with praying for me. One girl said she was going to give up bad music along with prayers. They were combining sacrifice and prayers to plead with the Lord. It was truly amazing and something I will never forget. They are calling on the powers of heaven and it is so humbling to look into all their faces and see the love they have for me. All these girls love me and some of them I do not even know! Just goes to show what prayer and service can do. I don't think that they will ever fully comprehend what they have done for me. I am almost scared to use the quilt because I want it to last forever but there are times that I need a hug and some uplifting and I go to my quilt and surround myself with prayers and love. I knew that if I started reading them all in front of them I would have bawled so instead I looked at them and thought of the temple and started bawling. It took me back to when I was a young woman looking up to the married girls. It kinda was weird because I still see myself as a little girl. I looked at them and all I could think about was the temple. I had this burning desire to tell them about the temple but I couldn't right then. Then Sister Knight said something about the temple and I about burst at the sight. I promptly piped in and told the girls exactly what I thought about the temple and them going to the temple. I had to tell them what it meant to me and how hard it can be to get there. I had to warn them that Satan will try and test them. The leaders say it all the time and it is true but I had to tell them. I believe it strongly that Satan will try to ruin the rest of their lives by taking away the temple. I just saw their perfect young faces and felt the love of the Savior for them. I got scared knowing that Satan will try and test his faithful and I wanted them to know that they needed to be strong. I still can't get the thought out of my mind about the temple. I wish I had enough energy to make it down there because it honestly consumes my mind more than pain or fear. All I care about right now is the temple. I feel like me and the temple have a magnetic draw to each other but the devil is standing between us doing everything he can to stop that. I know that right now I can't go to the temple physically so I try to go in my mind. It may sound weird but I ponder when I can't sleep and I take myself through all of the ordinances and I walk myself through the beautiful temple doors. I smile at all the workers and I feel the peace that is in the temple. It actually works better than Advil! I love to see the temple and my goal is to make it there physically this week, even if it is just a drive by, I will go to the temple this week and show Satan who is in charge! :)
Back to Wednesday night. Right when I got home from young womens there was a knock at my door and the Estate Groves Young Women MiaMaids were there with treats and cards. Great, here come the tears again! :) I looked at them and felt the same thing about the temple. I wanted them all to sit down and let me get on my soap box about the temple but it was getting late and I let them back out the door. So here it is to all the Estate Groves young women. Go to the temple often and don't let Satan get in your way. Life is tough, but you have to be tougher!
I actually go on the internet sometimes and look at all the pictures of the temple. I can make my little room a peaceful haven in a short time by focusing on the temple. It has been an amazing part of my week.
Now for a few pictures! :)
I don't look too happy do I?
Notice the thickness of these tubes... :(
Let the torture begin...Dr. Kalani...evil!
I tried to smile for you all but it was not going to well obviously
I had to walk on my own..
I made it all the way back to my bed...it is sad how I longed for my bed when I was up
Torture complete...four staples in there now...
Post Haircut
Right after my new hair cut! The mullet is gone!
Right after my new hair cut! The mullet is gone!
Just showing off my new hairs
My Estate Groves Girls...I ate everything almost all by myself! :) Thanks girls!
The Quilt!
Some of the Young Women there to give me my special gift. Keep the prayers rolling!
When I first got there sitting in the chair of honor
This is Sister Brown. She is the creator of this amazing quilt. I cannot even imagine the hours she spent working on this quilt for me. Quilters do not easily give quilts away! It is a true honor.
The whole group :)
As soon as I got home from Young Womens I read every single square a few times!
Still in awe of what was done for me!
Wrapped myself in love
I will always treasure this special gift. I feel like thanks will never be enough.
Friday, February 25, 2011
Week at Home
This is Becky - sorry, Tara will return to blogging sometime this weekend! First of all our highlight of this week at home was our Wednesday night; which Tara wants to blog about personally. Just so all you Wednesday night people know you are loved and you made our day, week, month, etc.!
Okay, I've been getting questions about the antibiotics so here goes...... We did find the "germs" that Tara has in her head. For all you science peoples out there the name of them are.....Bacillus Species..... and........Propiomibacterium Species. I made Dr. Kumy (infectious disease doctor) write them down. It's good that the germ grew in the cultures so they know exactly WHAT to treat! Tara is on Vancomycin 1250 mg for all the rest of you science peoples. We are on "home health care" so a home health nurse shows up at our house once a week to draw blood for labs and change the needle (access) on Tara's port. She is on IV Vancomycin; but it doesn't hurt because she just sticks the ball of antibiotic through her port and it works out great! She is mobile - she can carry her ball of antibiotics with her wherever she wants to; so now she can return to work and hopefully go out of town for Spring Break!! She has a dose every 8 hours; 6 am, 2 pm, and 10 pm. The only tricky part is she has to be awake after the medicine is finished dispersing itself (it takes 2 hours) so for you Math people, she only gets 6 hours of uninterrupted sleep per night; so that means she will definitely need a long nap every day. She will be on this for 6 weeks.
This week has been tough - Tara really hasn't felt well and has still had quite a bit of pain. I'm remembering the last surgery and in a few days, she would have been getting married! Last time Dr. Berger said she would feel 80% in 2 weeks, and that was true; but this time is more difficult. Probably because she was weaker going IN to surgery (because of chemo for 7+ months) and this antibiotic makes her sick to her stomach, which makes eating difficult. Dennis Crandall paid a visit to Tara after picking his daughter up from piano and pretty much ORDERED Tara to eat; so I was very thankful for that. She was mentioning that food just didn't taste good and makes her sick; but he said "tough - eat it anyway!" Gotta love that! So, nice peoples have been dropping off food to tempt Tara's palate - thank you all!
Tara has been on Percaset (spelling?) a narcotic pain killer all week; but was told today not to take it anymore! Yea! Dr. Smith does not want her addicted to that nasty stuff. It works great for the acute pain you have after surgery; but now she is to take Advil unless is gets really bad. Tara lost 10 pounds! Her clothes are bagging on her. Hopefully she will gain it back. She started eating again on Wednesday. Her energy level is quite low; but Wednesday evening she surfaced and she also got her hair washed and cut a little on Wednesday which was very exciting! Tara will post pictures... Thursday she tanked - must have been up too much on Wednesday; and today she felt a little better. So, hopefully she is turning the corner upwards and recovery will start to pick up.
Dr. Smith took her stitches and staples out today - yea! Now she can more easily wash her head. He once again said how happy he was with the surgery and said she has to put off chemo another week to give herself time to beat this infection. They are taking this infection SERIOUSLY and are not messing around! He also told Tara to get outside (wear sunglasses because the sun bothers her eyes) and breathe and basically in my words, "rejoin the living." So, we celebrated by going to lunch with Step and Brigham today. Now Tara is worn out; however, but we are glad she can even do a few outings!
Love you all so much - your prayers and love have kept us going and have helped Tara eat!
Okay, I've been getting questions about the antibiotics so here goes...... We did find the "germs" that Tara has in her head. For all you science peoples out there the name of them are.....Bacillus Species..... and........Propiomibacterium Species. I made Dr. Kumy (infectious disease doctor) write them down. It's good that the germ grew in the cultures so they know exactly WHAT to treat! Tara is on Vancomycin 1250 mg for all the rest of you science peoples. We are on "home health care" so a home health nurse shows up at our house once a week to draw blood for labs and change the needle (access) on Tara's port. She is on IV Vancomycin; but it doesn't hurt because she just sticks the ball of antibiotic through her port and it works out great! She is mobile - she can carry her ball of antibiotics with her wherever she wants to; so now she can return to work and hopefully go out of town for Spring Break!! She has a dose every 8 hours; 6 am, 2 pm, and 10 pm. The only tricky part is she has to be awake after the medicine is finished dispersing itself (it takes 2 hours) so for you Math people, she only gets 6 hours of uninterrupted sleep per night; so that means she will definitely need a long nap every day. She will be on this for 6 weeks.
This week has been tough - Tara really hasn't felt well and has still had quite a bit of pain. I'm remembering the last surgery and in a few days, she would have been getting married! Last time Dr. Berger said she would feel 80% in 2 weeks, and that was true; but this time is more difficult. Probably because she was weaker going IN to surgery (because of chemo for 7+ months) and this antibiotic makes her sick to her stomach, which makes eating difficult. Dennis Crandall paid a visit to Tara after picking his daughter up from piano and pretty much ORDERED Tara to eat; so I was very thankful for that. She was mentioning that food just didn't taste good and makes her sick; but he said "tough - eat it anyway!" Gotta love that! So, nice peoples have been dropping off food to tempt Tara's palate - thank you all!
Tara has been on Percaset (spelling?) a narcotic pain killer all week; but was told today not to take it anymore! Yea! Dr. Smith does not want her addicted to that nasty stuff. It works great for the acute pain you have after surgery; but now she is to take Advil unless is gets really bad. Tara lost 10 pounds! Her clothes are bagging on her. Hopefully she will gain it back. She started eating again on Wednesday. Her energy level is quite low; but Wednesday evening she surfaced and she also got her hair washed and cut a little on Wednesday which was very exciting! Tara will post pictures... Thursday she tanked - must have been up too much on Wednesday; and today she felt a little better. So, hopefully she is turning the corner upwards and recovery will start to pick up.
Dr. Smith took her stitches and staples out today - yea! Now she can more easily wash her head. He once again said how happy he was with the surgery and said she has to put off chemo another week to give herself time to beat this infection. They are taking this infection SERIOUSLY and are not messing around! He also told Tara to get outside (wear sunglasses because the sun bothers her eyes) and breathe and basically in my words, "rejoin the living." So, we celebrated by going to lunch with Step and Brigham today. Now Tara is worn out; however, but we are glad she can even do a few outings!
Love you all so much - your prayers and love have kept us going and have helped Tara eat!
Sunday, February 20, 2011
Homeward Bound Tonight!
For starters I figured I needed to fire my mother from blogging for a while. She never uses smily faces or exclamation points...those are two musts that help with emotion. In addition, what kind of blog title is Day 1 and Day 2? Mom, you are Fired!!! exclamation point!
Okay so here is what I remember. I do not remember what my mother has written so forgive repitition and enjoy a different point of view.
Going into surgery was not half as scary as it was last time. I am not sure if that is because I had time to really think about it or if I am just becoming a pro. I calmly waited for my turn for them to come take me away. I kept thinking about the "lamb to the slaughter" scripture and it started freaking me out so I quickly reverted my thoughts to much happier things. I went under peacfully and the surgery was a lot shorter than last time... so wonderful on my parents and Joshua, the same for me. The only thing I could remember about waking up was asking for Joshua. I asked for him over and over and the nurses had no idea who Joshua was. It felt like I asked forever until my faithful parents and Joshua came in the room. As soon as they saw his handsome face, they knew exactly why I was asking for Joshua over and over. The remark I got when I first saw my parents last time was "man, she has a lot of hair." This time, "Man she has a lot of tubes stuck to her head." I would have perfered the first comment personally, but whatever. I then counted the things sticking out of my arms. I knew I had the original IV but during surgery they snuck 3 more in there. I had 4 IV's when I woke up. My total count of tubes coming out of my body to a machine was unreal. Both of my legs had the motion squeezers on them to prevent blood clots. I also had a uterine tube that was then followed by 6 vital patches stragically placed around my torso. My unacessed port was just chillin there like most ports do...:) I could not understand why they did not use that! I had my four IV's in my arms and I had my breathing nose things (hate them) and the last but most painful, four catheters coming from my skull. That is a total of 17 things coming out of my body connected to other things. 17! Ridiculous. I quickly got rid of the nose breathing thing when the nurse was not looking...ohh I forgot the finger blood oxygen level tube...that makes 18. The nurses caught me the first time I took it out but let me go after the next few times. I was breathing just fine thank you. Next came off one of the IVs but only one! Then came the uterine catheter. I was actually really sad when they took that. There was no way I wanted to get out of bed when I had to go and they fill you so full of fluids during surgery I knew I was going to have to go every other minute! They took it out
after my complaining but left all the rest of the miserable tubes. The very very worst tubes were the brain catheters but they get a whole different paragraph later. Two of my IV's shut down from being pounded with so much so they had to finally access my port! Now, what a great idea! I can sleep fine with my port and it is never in the way for anything. My love for my port has grown dramatically during this experience. Anyway, you get the picture...I was hooked up to way too many things! I would have rather had a surprising amount of hair. The first few days were full of sleeping and pain meds and then some more sleeping. Eating was never on the menu and to tell you the truth...it really still isn't. The thought of food makes me sick and I make my poor Joshua eat at the back of the room because I can't stand the smell. I thought that I was constantly nauseus and sick because I just could not heal and that something was wrong. Tom (my favorite night nurse) finally told me last night that it is the anitbotics that make me so sick but that they never tell patients that because then they will start to fear them. I think they are crazy. This place is a prision and you ain't going anywhere because there are more gaurds than prisioners in the ICU. You would never leave so it doesn't matter if you are scared of the medicine. YOU ARE GETTING IT! Why not just understand why you are sick?
So, I get to take this stomach renching med for 6 weeks, 3 times a day, 2 hours each time. Sounds fun. :(
I thought that I was going to heal much quicker and easier this time but I thought wrong. I still have head pains and problems but I like to blame them all on the cursed catheters instead of my body. During surgery Dr. Smith placed 4 tubes in my skull. They are called "feed me, drain me" tubes. Medicine goes in one tube and out the other and they are emptied every hour without fail. That means every hour of the night... I think it was two nights ago that I learned that my tubes were going to be taken out. I was actually happy. These tubes made life hard. I could not move my head or sleep at all so I was tickled to get them out. Tickled until I got them out! I have expereinced a lot of pain in my days...more than many 21 year old girls... and I have never experienced anything like this before. They did not numb me and the morphine did not do anything. Dr. Smith sent a resident to torture me cause he could not do it himself. Okay, writing about it is making me sick so I have to stop.
Sorry I really am sick now.
I am coming home tonight....I will try to write more.
Love me,
Tumorless, tubeless Tara
Okay so here is what I remember. I do not remember what my mother has written so forgive repitition and enjoy a different point of view.
Going into surgery was not half as scary as it was last time. I am not sure if that is because I had time to really think about it or if I am just becoming a pro. I calmly waited for my turn for them to come take me away. I kept thinking about the "lamb to the slaughter" scripture and it started freaking me out so I quickly reverted my thoughts to much happier things. I went under peacfully and the surgery was a lot shorter than last time... so wonderful on my parents and Joshua, the same for me. The only thing I could remember about waking up was asking for Joshua. I asked for him over and over and the nurses had no idea who Joshua was. It felt like I asked forever until my faithful parents and Joshua came in the room. As soon as they saw his handsome face, they knew exactly why I was asking for Joshua over and over. The remark I got when I first saw my parents last time was "man, she has a lot of hair." This time, "Man she has a lot of tubes stuck to her head." I would have perfered the first comment personally, but whatever. I then counted the things sticking out of my arms. I knew I had the original IV but during surgery they snuck 3 more in there. I had 4 IV's when I woke up. My total count of tubes coming out of my body to a machine was unreal. Both of my legs had the motion squeezers on them to prevent blood clots. I also had a uterine tube that was then followed by 6 vital patches stragically placed around my torso. My unacessed port was just chillin there like most ports do...:) I could not understand why they did not use that! I had my four IV's in my arms and I had my breathing nose things (hate them) and the last but most painful, four catheters coming from my skull. That is a total of 17 things coming out of my body connected to other things. 17! Ridiculous. I quickly got rid of the nose breathing thing when the nurse was not looking...ohh I forgot the finger blood oxygen level tube...that makes 18. The nurses caught me the first time I took it out but let me go after the next few times. I was breathing just fine thank you. Next came off one of the IVs but only one! Then came the uterine catheter. I was actually really sad when they took that. There was no way I wanted to get out of bed when I had to go and they fill you so full of fluids during surgery I knew I was going to have to go every other minute! They took it out
after my complaining but left all the rest of the miserable tubes. The very very worst tubes were the brain catheters but they get a whole different paragraph later. Two of my IV's shut down from being pounded with so much so they had to finally access my port! Now, what a great idea! I can sleep fine with my port and it is never in the way for anything. My love for my port has grown dramatically during this experience. Anyway, you get the picture...I was hooked up to way too many things! I would have rather had a surprising amount of hair. The first few days were full of sleeping and pain meds and then some more sleeping. Eating was never on the menu and to tell you the truth...it really still isn't. The thought of food makes me sick and I make my poor Joshua eat at the back of the room because I can't stand the smell. I thought that I was constantly nauseus and sick because I just could not heal and that something was wrong. Tom (my favorite night nurse) finally told me last night that it is the anitbotics that make me so sick but that they never tell patients that because then they will start to fear them. I think they are crazy. This place is a prision and you ain't going anywhere because there are more gaurds than prisioners in the ICU. You would never leave so it doesn't matter if you are scared of the medicine. YOU ARE GETTING IT! Why not just understand why you are sick?
So, I get to take this stomach renching med for 6 weeks, 3 times a day, 2 hours each time. Sounds fun. :(
I thought that I was going to heal much quicker and easier this time but I thought wrong. I still have head pains and problems but I like to blame them all on the cursed catheters instead of my body. During surgery Dr. Smith placed 4 tubes in my skull. They are called "feed me, drain me" tubes. Medicine goes in one tube and out the other and they are emptied every hour without fail. That means every hour of the night... I think it was two nights ago that I learned that my tubes were going to be taken out. I was actually happy. These tubes made life hard. I could not move my head or sleep at all so I was tickled to get them out. Tickled until I got them out! I have expereinced a lot of pain in my days...more than many 21 year old girls... and I have never experienced anything like this before. They did not numb me and the morphine did not do anything. Dr. Smith sent a resident to torture me cause he could not do it himself. Okay, writing about it is making me sick so I have to stop.
Sorry I really am sick now.
I am coming home tonight....I will try to write more.
Love me,
Tumorless, tubeless Tara
Coming Home
There is hope for home today...I want to go home so bad. I need a shower worse. I will blog about the whole experience later. For now, I will just dream of home.
Friday, February 18, 2011
Our Hero!
Scott said something yesterday - he said his brother Mike, has always been his #1 hero - well, Mike, I'm really sorry to say this; hope you don't feel bad, but now Scott said you're #2, and Tara's #1. You're both amazing and so inspirational!
We just watched Tara suffer the most pain she's had since she had those knife splitting headaches before surgery. She knew it was coming - the freedom from tubes in her head also came at a price. She wasn't going under anaesthetic to remove those tubes. The nurse tried to prep her and gave her 5 milligrams of morphine, then 5 more to equal 10! During those nighttime morphine drops, Tara only got 2 milligrams of morphine - just to give you an idea how hard the nurse was trying to stop the pain. Unfortunately, all the pain killers don't really work too well on SKIN - it has all those nerve endings that pain killers don't help too much with. It brings back memories of a child of mine who was burned years ago and those nerve endings just killed no matter how much Tylenol III plus codiene he got! So, now Tara is almost asleep thanks to the morphine. Dr. Smith wisely sent his assistant to pull out Tara's tubes - NOT a fun job for sure. Suffice it to say; the tubes are out and then she had to suffer something worse than that - he put 4 staples in her head where the tubes were! Ouch!
I guess this gives new meaning to the "no pain, no gain" theory. Now Tara is free to walk around the room; not be checked every single hour, get out of her beautiful hospital gown, etc. I am hoping she will start to feel so much better. She is a brave girl and I hope this is the end of the suffering. She bears it well.... our hero...
We just watched Tara suffer the most pain she's had since she had those knife splitting headaches before surgery. She knew it was coming - the freedom from tubes in her head also came at a price. She wasn't going under anaesthetic to remove those tubes. The nurse tried to prep her and gave her 5 milligrams of morphine, then 5 more to equal 10! During those nighttime morphine drops, Tara only got 2 milligrams of morphine - just to give you an idea how hard the nurse was trying to stop the pain. Unfortunately, all the pain killers don't really work too well on SKIN - it has all those nerve endings that pain killers don't help too much with. It brings back memories of a child of mine who was burned years ago and those nerve endings just killed no matter how much Tylenol III plus codiene he got! So, now Tara is almost asleep thanks to the morphine. Dr. Smith wisely sent his assistant to pull out Tara's tubes - NOT a fun job for sure. Suffice it to say; the tubes are out and then she had to suffer something worse than that - he put 4 staples in her head where the tubes were! Ouch!
I guess this gives new meaning to the "no pain, no gain" theory. Now Tara is free to walk around the room; not be checked every single hour, get out of her beautiful hospital gown, etc. I am hoping she will start to feel so much better. She is a brave girl and I hope this is the end of the suffering. She bears it well.... our hero...
Day 3
Tara finally "surfaced" this morning. Josh spent the night with her last night; which made her very happy indeed. She smiled and said she actually ate last night a little bit! She was alert for almost an hour. My personal goals for Tara today are to get her to eat (her dad is especially good at that) and get her to walk. She's got to be sick of this bed by now. She still wants her pain meds at regular intervals and sleeps much of the time. Anyway, I see improvement this morning.
About the cultures and infection - I'm wrong; I'm not a doctor and this infectious disease doctor is from some other country and we have a hard time understanding him; so I posted bad information. (speaking of Mr. Infectious Disease Doctor - he drives Tara CRAZY. While he stands by her bedside he jiggles the bed and bumps her tubes which all hurt! She breathes a sign of relief whenever he leaves the room!). Dr. Shaprio came in this morning and we asked him if he would just "translate" what the infectious disease doctor says so we know what to expect!
Those cultures they sent to the lab to check for infection were really being checked to see which kind of germs (infection) were growing so that they could give the best antibiotic to fight them. Nothing grew in the cultures; which doesn't mean there isn't infection; it just means that the germs didn't grow in those cultures. So, they don't know which antibiotic to use; but Dr. Smith said it's all okay - they will just use some general antibiotics which should take care of the problem. He said not to worry; that most likely the antibiotics they will give her would probably have been the ones they would have prescribed anyway. She'll be on IV antibiotics for 6 weeks; 3 times a day; so I guess we'll have to see how that all works out. They are taking this infection really serious. Tomorrow one or two tubes come out; then the next day the other tubes will come out. She is stuck in ICU until she gets rid of her "hair extensions."
I think she's going to "turn the corner" today - I pray that is the case. Thanks so much for all your prayers, love, comments, support. Tara has read the comments on the blog - some of them - so that's a good sign. The computer screen bothers her head and she falls asleep so quickly that she doesn't last long; but at least she's not sleeping 24/7 anymore.
About the cultures and infection - I'm wrong; I'm not a doctor and this infectious disease doctor is from some other country and we have a hard time understanding him; so I posted bad information. (speaking of Mr. Infectious Disease Doctor - he drives Tara CRAZY. While he stands by her bedside he jiggles the bed and bumps her tubes which all hurt! She breathes a sign of relief whenever he leaves the room!). Dr. Shaprio came in this morning and we asked him if he would just "translate" what the infectious disease doctor says so we know what to expect!
Those cultures they sent to the lab to check for infection were really being checked to see which kind of germs (infection) were growing so that they could give the best antibiotic to fight them. Nothing grew in the cultures; which doesn't mean there isn't infection; it just means that the germs didn't grow in those cultures. So, they don't know which antibiotic to use; but Dr. Smith said it's all okay - they will just use some general antibiotics which should take care of the problem. He said not to worry; that most likely the antibiotics they will give her would probably have been the ones they would have prescribed anyway. She'll be on IV antibiotics for 6 weeks; 3 times a day; so I guess we'll have to see how that all works out. They are taking this infection really serious. Tomorrow one or two tubes come out; then the next day the other tubes will come out. She is stuck in ICU until she gets rid of her "hair extensions."
I think she's going to "turn the corner" today - I pray that is the case. Thanks so much for all your prayers, love, comments, support. Tara has read the comments on the blog - some of them - so that's a good sign. The computer screen bothers her head and she falls asleep so quickly that she doesn't last long; but at least she's not sleeping 24/7 anymore.
Thursday, February 17, 2011
Day 2
I haven't been posting because there's not much to say - things are much the same as yesterday. Tara is still in quite a bit of pain - she loved her night nurse because she gave her morphine every single hour without waiting for Tara or myself to tell her. This means Tara is quite doped up and sleeps alot. She is awake about 5 minutes every hour or so in between pain meds. It's been difficult to get her to eat much of anything; so if you want to pray for something today - it would be great if Tara would EAT. It seems as if she's in more pain this time then last surgery. I think it's due to those catheters in her head. The nurse tried to put magnesium in her veins and Tara just couldn't take it - her veins are so sensitive it just burned. So, they'll have to get magnesium in her some other way. Labs were done this morning which showed a low level of magnesium. Too bad she can't drink her green smoothie and get herself all balanced with vitamins! (ha, ha)
When her veins were burning she actually said "okay, I'll eat a BANANA - thinking she was low on potassium. This was after Scott and I had brought up 10 different ideas of food all with a resounding NO - then suddenly she'll eat a banana? She wanted to avoid that stuff going in her vein that was burning so badly. Now she's sound asleep again with no pain and she told us she would eat "after a nap." We're going to hold her to that. Only problem is - her "naps" can be several hours!
We will all be glad when she can get off all this stuff she's on. It seems as if the nurse is always sticking something in her IV or giving her pills to take.
Positive things: Tara's 4 different cultures of the fluid coming out of her catheters showed no infection - so that's really good. It looks as if Dr. Smith was able to scoop all that infection out of there; sterilize the bone, and put the bone back in. The infection may have stemmed from the titanium plate that was inserted last May - it can rub against the tissue or skin or whatever - and it caused infection. The brain doesn't like "foreign bodies" in it; although usually titanium is okay; but apparently Tara didn't like it.
Tara is still able to joke about her "hair extensions" so I know the old Tara is in that sleeping body somewhere just waiting to come back again... I hope she can post soon; but it may be a few days.... sorry. As soon as she stops sleeping nonstop I'm going to read her all the comments...
When her veins were burning she actually said "okay, I'll eat a BANANA - thinking she was low on potassium. This was after Scott and I had brought up 10 different ideas of food all with a resounding NO - then suddenly she'll eat a banana? She wanted to avoid that stuff going in her vein that was burning so badly. Now she's sound asleep again with no pain and she told us she would eat "after a nap." We're going to hold her to that. Only problem is - her "naps" can be several hours!
We will all be glad when she can get off all this stuff she's on. It seems as if the nurse is always sticking something in her IV or giving her pills to take.
Positive things: Tara's 4 different cultures of the fluid coming out of her catheters showed no infection - so that's really good. It looks as if Dr. Smith was able to scoop all that infection out of there; sterilize the bone, and put the bone back in. The infection may have stemmed from the titanium plate that was inserted last May - it can rub against the tissue or skin or whatever - and it caused infection. The brain doesn't like "foreign bodies" in it; although usually titanium is okay; but apparently Tara didn't like it.
Tara is still able to joke about her "hair extensions" so I know the old Tara is in that sleeping body somewhere just waiting to come back again... I hope she can post soon; but it may be a few days.... sorry. As soon as she stops sleeping nonstop I'm going to read her all the comments...
Wednesday, February 16, 2011
Pictures!
Being the spunky patient Tara is, she took the white board into her own hands. It wasn't that long ago her pain was at a "0". Man, how I wish that was the case today. Surgery can change things so quickly!
She's much cuter than Vanna White, don't you think???
Our "last meal" on Valentine's Day - last time Tara would feel like eating for awhile.. our Italian feast compliments Dennis Crandall and "Pino" our new Italian restaurant friend!
Josh brought Tara flowers for Valentine's Day...
Tara's Monday night visitors.. her "team"
They're going to take my daughter away.... she's all smiles and ready to go! Does she have any idea how much this is going to hurt??
Recovery....with her ever watchful Dad
This is a good view of the catheters hooked to her head - 2 in, 2 out - "drain me, feed me" system.
Our new druggie on morphine - if she isn't on morphine; it's really brutal. Those 4 catheters create much pressure on the brain and cause pain. She has a very hard time finding a spot that will be comfortable for her head. She will have them in for 3-5 days; all of which she'll have to be in ICU. From then on, she will have IV antibiotics; but the resident doctor said home health care can bring the antibiotics to her; instead of us going to the hospital 3 times a week - that's a relief!
Thanks so much for your prayers - we're not out of the woods yet; but the doctor said this is "the best they can do" to treat this infection. Now we just pray that this treatment for the infection works. Only 3-7 percent of patients in Tara's position get infected; so she beat the odds again, but this time not on the right side of the scale! There are little holes in the bone where they have inserted the catheters. He also said they had to "stretch" the skin on top of her head - it's thinner because of radiation and the surgery was done once, so it's more difficult to recover the second time around. All these things equal pain for Tara; but thank heavens for pain meds. I just hate to see her like this and eagerly await the Tara I had on Monday. She still has her sense of humor; she's calling the catheters her new "hairdo" and "hair extensions!" So, the old Tara is in there waiting to surface... just got to get through this week...
Day 1
The first day after surgery is never very fun. Tara was in the recovery room until 10:30 pm waiting for an ICU bed. She has been pretty out of it so far. In the recovery room; she did rear some of her "spunk" - as her eyes were closed we would softly whisper so as not to wake her; and she would order us to talk louder so she could hear what was going on. She kept telling us that even though her eyes were closed; she could hear everything. When we spoke of the "catheters" she thought we meant the usual kind; not the kind in the head! We had to tell her 3 times she had 4 catheters in her head. She was bewildered by that whole deal. She's been in a great deal of pain - she has to have morphine every hour - and the nausea is worse than last time; but we hope that as the hours go by; she will be more and more alert and comfortable. It's really hard for her to get her head comfortable - especially with all the tubes hooked up to that precious head. It's amazing how she can be almost bouncing off the walls on Monday; and now she's just completely wiped out. Surgery is tough; that's for sure. It had to be done, however.
Josh was the night nurse - a tough job the first night. She couldn't drink apple juice this time - she came through surgery more easily last time as far as nausea goes. She initially said in the recovery room that her head didn't hurt as much this time; but I think that's just because she was on morphine - we'll see what happens today with her head hurting.
We'll be in ICU for 2 days or more; depending on these catheters hooked up to her head. The recovery for this surgery will take longer because they have to deal with this infection for awhile. Dr. Crandall is taking care of our hunger needs while in the hospital - we had an Italian feast on Valentine's Day, compliments of Dr. Crandall, and he makes sure Josh has access to the doctor's lounge for breakfast! It's so good to have friends. We love you all and appreciate so very much all your prayers yesterday and always in Tara's behalf. I will post pictures soon - I brought my cord to the hospital! Tara wants pictures of the whole deal - you know how she is about medical issues - she likes medicine and all the details... but unfortunately, she did not get to watch surgeries on Monday like she hoped. Another day....
Josh was the night nurse - a tough job the first night. She couldn't drink apple juice this time - she came through surgery more easily last time as far as nausea goes. She initially said in the recovery room that her head didn't hurt as much this time; but I think that's just because she was on morphine - we'll see what happens today with her head hurting.
We'll be in ICU for 2 days or more; depending on these catheters hooked up to her head. The recovery for this surgery will take longer because they have to deal with this infection for awhile. Dr. Crandall is taking care of our hunger needs while in the hospital - we had an Italian feast on Valentine's Day, compliments of Dr. Crandall, and he makes sure Josh has access to the doctor's lounge for breakfast! It's so good to have friends. We love you all and appreciate so very much all your prayers yesterday and always in Tara's behalf. I will post pictures soon - I brought my cord to the hospital! Tara wants pictures of the whole deal - you know how she is about medical issues - she likes medicine and all the details... but unfortunately, she did not get to watch surgeries on Monday like she hoped. Another day....
Tuesday, February 15, 2011
She's OUT!!!
What a relief! Surgery is over!! The first words out of Kris Smith's mouth were "I have good and bad news" - well, we're tired of bad news so we held our breath for a moment; but then he proceeded to tell us there was NO TUMOR. Hallelujah!! We just about hugged this surgeon we were so happy; but we had to settle with shaking his hand and holding his arm tightly.... It's amazing how you can hear bad news about infection but really think that it is good news because you have no tumor. I hate the word TUMOR. So, about the tumor; then on to the infection. I'm not a doctor; so I'll do my best. Too bad one of our doctor friends aren't here to help me write this.... but here goes.
They sent at least 4 samples of the tissue to the lab during surgery. The white stuff on the scan is indeed radiation necrosis. He did find some tumor cells in the tissues he sent in; but they were DYING; not alive and doing anything - so yea for radiation, chemo, and all this junk Tara has gone through; it appears to have worked! Do you have ANY idea how many prayers I have offered praying that those treatments will work inside my daughter's head??? I still pray those cells don't ever come back. We will try alternative treatments once Tara is finished with her chemo schedule to counter attack those cells for the future.
The infection: Dr. Smith said it was good we operated today; even waiting until the end of the week would not have been good. All your specific prayers for the BONE have been heard - her bone was not infected; so that is really good because now they don't have to introduce a foreign substance into her head such as a titanium something that resembles bone. That means she doesn't have to wear a helmet; live without a bone; etc. But, the infection was in two places - it was underneath her bone plate - which explains why she had no pain or fever and he found it in two seperate spots; so Dr. Smith reiterated again how wonderful it was that the operation was sooner rather than later. The infection is very serious; but Dr. Smith has seen this before and has had much success treating it. I guess that's the bad news - that the infection is in two spots. (Sorry, italics again and Nate's not here to remind me how to turn them off - he's playing his last basketball game of the season with no fans.... he'll probably score 20 points since we're not there!) Tara will be treated with a "drain and feed" (I think those are the words) system. She will have FOUR catheters in her head - it may be scary to see how her head looks for awhile! 2 catheters will drain the infection; and 2 will push antibiotics in her brain. She will have to have IV antibiotics for awhile - not sure how long at this point or if that involves going to the hospital many times a week or not. We're just going as I said, day by day, right now. He said she'll be in the hospital at least 5 days because they are going to watch this infection closely. She will be in ICU for 24-48 hours; so no visitors for a few days. I will let you know when she feels up to visitors - (or she will!)
Thank you all so much for your prayers - they have been heard and we are so very grateful for our blessings. We are happy they can treat this infection and our daughter is not in a life threatening position. She will get through the pain of recovery; and it's all worth it to get rid of that puss in her head!!! Thank you all for everything you send our way, love, text, emails, prayers, and countless offers of help. I do call when I need something - just ask my neighbor who had to drop everything when I forgot a ride for Nate....
I will try to post everyday..... love you all so much ! Even the ones I don't know!!! We are so blessed!
They sent at least 4 samples of the tissue to the lab during surgery. The white stuff on the scan is indeed radiation necrosis. He did find some tumor cells in the tissues he sent in; but they were DYING; not alive and doing anything - so yea for radiation, chemo, and all this junk Tara has gone through; it appears to have worked! Do you have ANY idea how many prayers I have offered praying that those treatments will work inside my daughter's head??? I still pray those cells don't ever come back. We will try alternative treatments once Tara is finished with her chemo schedule to counter attack those cells for the future.
The infection: Dr. Smith said it was good we operated today; even waiting until the end of the week would not have been good. All your specific prayers for the BONE have been heard - her bone was not infected; so that is really good because now they don't have to introduce a foreign substance into her head such as a titanium something that resembles bone. That means she doesn't have to wear a helmet; live without a bone; etc. But, the infection was in two places - it was underneath her bone plate - which explains why she had no pain or fever and he found it in two seperate spots; so Dr. Smith reiterated again how wonderful it was that the operation was sooner rather than later. The infection is very serious; but Dr. Smith has seen this before and has had much success treating it. I guess that's the bad news - that the infection is in two spots. (Sorry, italics again and Nate's not here to remind me how to turn them off - he's playing his last basketball game of the season with no fans.... he'll probably score 20 points since we're not there!) Tara will be treated with a "drain and feed" (I think those are the words) system. She will have FOUR catheters in her head - it may be scary to see how her head looks for awhile! 2 catheters will drain the infection; and 2 will push antibiotics in her brain. She will have to have IV antibiotics for awhile - not sure how long at this point or if that involves going to the hospital many times a week or not. We're just going as I said, day by day, right now. He said she'll be in the hospital at least 5 days because they are going to watch this infection closely. She will be in ICU for 24-48 hours; so no visitors for a few days. I will let you know when she feels up to visitors - (or she will!)
Thank you all so much for your prayers - they have been heard and we are so very grateful for our blessings. We are happy they can treat this infection and our daughter is not in a life threatening position. She will get through the pain of recovery; and it's all worth it to get rid of that puss in her head!!! Thank you all for everything you send our way, love, text, emails, prayers, and countless offers of help. I do call when I need something - just ask my neighbor who had to drop everything when I forgot a ride for Nate....
I will try to post everyday..... love you all so much ! Even the ones I don't know!!! We are so blessed!
She's in surgery
This is Becky. I am relegated the task of updating you all on surgery. Tara also asked me to update facebook every few hours - not sure I'll tackle that task.
First of all, Tara makes me laugh. She never reads her posts to proof them after she writes them; that is usually me that does that ( if it gets done). Last post "super fiscal" infection - ha, ha, I needed a laugh right now; and that got one. I'm sure she meant "superficial".
Just because Dr. Shapiro said that about infection doesn't mean we are scared about it - he also said it very well could be a superficial infection - that's what it looks like - but once again; they will know for sure when Dr. Smith opens her up.
Her departure time through those double doors was 11:45. Her "asleep" time was probably 11:46. She left all smiles; while I was fighting back tears and trying to get my heart from hurting. This time I know what's ahead - well, maybe, I know. I know some of it. Don't know if she'll be wearing yet another device (helmet) or all of what's ahead; but I know some. This brain tumor road isn't short and isn't pleasant; but we survive one day at a time with all of your prayers building us up. I keep remembering what Tara said about "being in the Savior's hands." She slept "like a rock" last night (according to Josh and herself) and didn't seem at all scared or worried this morning. She's just ready to take this on. What a brave girl she is. She'll always be my little girl and I don't like to see little girls go through those double doors.
Dr. Smith hates decadron. That made he and Tara instant friends for sure! He said he'll only put her on it for 2 or 3 days - some of you may remember her intense hatred for this drug which she finally got off one week after her wedding. Decadron is a steroid used for brain swelling; very effective for the swelling; but the side effects are yucky. We met Dr. Smith Sunday (Kris Smith) and we were very impressed with him.
One positive thing - Scott has been emailing Dr. Berger (original surgeon from UCSF). He feels that it is very unlikely that tumor has come back so soon; he thinks it is likely scar tissue or that necrosis; but agrees that if there is fluid coming out of her head and they are worried about infection; it's a good reason to go ahead with surgery. I think Dr. Berger has a soft spot in his heart for Tara; but then, who wouldn't?? I like to hear that he thinks there is no tumor in there..... I don't ever want to hear the words "tumor re-growth". I like "radiation necrosis" much better.
Surgery should take 4 hours. I will write more later. Surely appreciate all your prayers, love, and concern. Tara has been reading the blog lots lately while in the hospital... it's therapeutic for her. Love you all!
First of all, Tara makes me laugh. She never reads her posts to proof them after she writes them; that is usually me that does that ( if it gets done). Last post "super fiscal" infection - ha, ha, I needed a laugh right now; and that got one. I'm sure she meant "superficial".
Just because Dr. Shapiro said that about infection doesn't mean we are scared about it - he also said it very well could be a superficial infection - that's what it looks like - but once again; they will know for sure when Dr. Smith opens her up.
Her departure time through those double doors was 11:45. Her "asleep" time was probably 11:46. She left all smiles; while I was fighting back tears and trying to get my heart from hurting. This time I know what's ahead - well, maybe, I know. I know some of it. Don't know if she'll be wearing yet another device (helmet) or all of what's ahead; but I know some. This brain tumor road isn't short and isn't pleasant; but we survive one day at a time with all of your prayers building us up. I keep remembering what Tara said about "being in the Savior's hands." She slept "like a rock" last night (according to Josh and herself) and didn't seem at all scared or worried this morning. She's just ready to take this on. What a brave girl she is. She'll always be my little girl and I don't like to see little girls go through those double doors.
Dr. Smith hates decadron. That made he and Tara instant friends for sure! He said he'll only put her on it for 2 or 3 days - some of you may remember her intense hatred for this drug which she finally got off one week after her wedding. Decadron is a steroid used for brain swelling; very effective for the swelling; but the side effects are yucky. We met Dr. Smith Sunday (Kris Smith) and we were very impressed with him.
One positive thing - Scott has been emailing Dr. Berger (original surgeon from UCSF). He feels that it is very unlikely that tumor has come back so soon; he thinks it is likely scar tissue or that necrosis; but agrees that if there is fluid coming out of her head and they are worried about infection; it's a good reason to go ahead with surgery. I think Dr. Berger has a soft spot in his heart for Tara; but then, who wouldn't?? I like to hear that he thinks there is no tumor in there..... I don't ever want to hear the words "tumor re-growth". I like "radiation necrosis" much better.
Surgery should take 4 hours. I will write more later. Surely appreciate all your prayers, love, and concern. Tara has been reading the blog lots lately while in the hospital... it's therapeutic for her. Love you all!
Monday, February 14, 2011
Surgery Tomorrow
Okay so we have the final word on the schedule for tomorrow.
Functional MRI at 7:00am
Surgery at 10:00 am
Okay here is what they have said and if I repeat myself...I am sorry.
1. super fiscal infection = clean it out
2. infection of the bone = remove the bone for a while and then onto a helmet...like babies wear. (I can just decorate it)
3. infection of the brain = clean it out and possibly could be more of a problem than the tumor itself.
Whatever they find they will go down and get that little piece of "something" and we will find what it is.
Sorry this short and not very clear but I will try to write more later tonight
Happy V day all!
Keep the prayers rolling.
Bring on the staples
Functional MRI at 7:00am
Surgery at 10:00 am
Okay here is what they have said and if I repeat myself...I am sorry.
1. super fiscal infection = clean it out
2. infection of the bone = remove the bone for a while and then onto a helmet...like babies wear. (I can just decorate it)
3. infection of the brain = clean it out and possibly could be more of a problem than the tumor itself.
Whatever they find they will go down and get that little piece of "something" and we will find what it is.
Sorry this short and not very clear but I will try to write more later tonight
Happy V day all!
Keep the prayers rolling.
Bring on the staples
Shapiro stepped in...
just talked to shapiro...he is afraid it could be an infection of the brain and not the bone...he said that potentially it could be worse than dealing with the tumor....ewww keep praying
We just won't know until they go in there...
We just won't know until they go in there...
Good Morning!
The title started with Good Morning Arizona but then I remembered all of you who do not live in AZ! So let me start again.
Good Morning Arizona,Utah,Texas,Massachusetts, Pennsylvania, New York, Iowa, Georgia, Indiana, Minnesota, Germany, and last but definitely not least...South Africa! This is Tara Bodrero reporting from room 41 floor 6 of the St. Joe's Hospital.
Ah that feels better...It feels better to include all (please let me know if you are not included).
I woke up peachy as ever this morning. Nurse came in today to check my vitals again thinking I could possible be in shock yesterday and not knowing what was going on. No ma'am I can fool I lie detector and I do know what is going on. Everything was normal and shows that I could still pass a lie detector test. I am going to try to become more aware of what will be happening by sneaking into a few surgeries today. Terri said that i may be able to watch from a window they have...I may get to watch Dr. Smith who is my surgeon. I have watched a few youtube videos but I am sure that the real thing will most likely be more interesting. Yes I am aware of what is going on. I corrected my dad yesterday when he said that they would have to take a knife to my head again..."Dad, I am about 99% sure they will have to use a saw of some sort...not a puny knife!" So I would prefer to say that I am going under the saw...not the puny knife! Real surgeons use saws! :)
I would like to say that I am patiently waiting for my breakfast to get here, unfortunantly that is not the case...it takes them forever to get here and my food is always cold. I am waiting very impatiently and constantly watching the clock.I am hoping that blogging will take my mind off food. Being the brain surgery pro that I am, I know that when I wake up I will not want to eat anything but rather drink apple juice. My jaw muscle that has finally started to heal, will once again be battered and cut apart. Eating will be hard and I will lose weight so I am gaining right now. Man it is wonderful to be a girl who is trying to gain weight...hopfully it does not bite me in the rear later! :) Yes, I call myself a pro. I know how stinky I will after and how to deal with it. I am grateful this time that my hair will be easier to brush and that they won't have to cut my long locks off again! Ahh there is good to previous trials! I know about the contact situation so I brought my glasses and slippers are in the bag! Hopefully this time will be better...practice makes perfect. I am praying that I get this perfect this time so I don't need more practice.
I have to tell you all about my comical mother...for those of you who don't know her...I am extremely sorry and you should do whatever you can to get to know her! She is awesome. Yesterday she rolled in with two suitcases...the smaller being the one that contained her clothes and necessities. I am sure a few of you can guess what was in the bigger, heavier of the two. Half her sewing room. If you need mending of any sort we have a full on sewing machine and every color of thread...we got the works down here and may have to set up in the waiting room so we have enough room. Life just wouldn't be the same without my wonderful momma! All sarcasm set aside, she really is the greatest and I love her.
So who knows what today will bring. My first Valentines Day! Well my first birthday married wasn't exciting enough with radiation and chemo so we decided to vamp up this holiday!
Hopefully surgery is tomorrow and we can bust out of here sooner. Life is great and if you need specific things to pray for we are praying for the bone. We are praying that it does not have infection and that we can keep the bone that I already have. Also, for that little spot...that it may not be cancer regrowth but rather scar tissue. Peace and love is always in there along with a guided surgeon who will be able to save my left side. (yes, this is at risk again and the brain mapping test today will help them avoid damaging it)
Have a wonderful morning! It's warm in AZ! :) haha.. I feel bad for those of you in the snow...I am just counting my blessings! :)
Tara
Good Morning Arizona,Utah,Texas,Massachusetts, Pennsylvania, New York, Iowa, Georgia, Indiana, Minnesota, Germany, and last but definitely not least...South Africa! This is Tara Bodrero reporting from room 41 floor 6 of the St. Joe's Hospital.
Ah that feels better...It feels better to include all (please let me know if you are not included).
I woke up peachy as ever this morning. Nurse came in today to check my vitals again thinking I could possible be in shock yesterday and not knowing what was going on. No ma'am I can fool I lie detector and I do know what is going on. Everything was normal and shows that I could still pass a lie detector test. I am going to try to become more aware of what will be happening by sneaking into a few surgeries today. Terri said that i may be able to watch from a window they have...I may get to watch Dr. Smith who is my surgeon. I have watched a few youtube videos but I am sure that the real thing will most likely be more interesting. Yes I am aware of what is going on. I corrected my dad yesterday when he said that they would have to take a knife to my head again..."Dad, I am about 99% sure they will have to use a saw of some sort...not a puny knife!" So I would prefer to say that I am going under the saw...not the puny knife! Real surgeons use saws! :)
I would like to say that I am patiently waiting for my breakfast to get here, unfortunantly that is not the case...it takes them forever to get here and my food is always cold. I am waiting very impatiently and constantly watching the clock.I am hoping that blogging will take my mind off food. Being the brain surgery pro that I am, I know that when I wake up I will not want to eat anything but rather drink apple juice. My jaw muscle that has finally started to heal, will once again be battered and cut apart. Eating will be hard and I will lose weight so I am gaining right now. Man it is wonderful to be a girl who is trying to gain weight...hopfully it does not bite me in the rear later! :) Yes, I call myself a pro. I know how stinky I will after and how to deal with it. I am grateful this time that my hair will be easier to brush and that they won't have to cut my long locks off again! Ahh there is good to previous trials! I know about the contact situation so I brought my glasses and slippers are in the bag! Hopefully this time will be better...practice makes perfect. I am praying that I get this perfect this time so I don't need more practice.
I have to tell you all about my comical mother...for those of you who don't know her...I am extremely sorry and you should do whatever you can to get to know her! She is awesome. Yesterday she rolled in with two suitcases...the smaller being the one that contained her clothes and necessities. I am sure a few of you can guess what was in the bigger, heavier of the two. Half her sewing room. If you need mending of any sort we have a full on sewing machine and every color of thread...we got the works down here and may have to set up in the waiting room so we have enough room. Life just wouldn't be the same without my wonderful momma! All sarcasm set aside, she really is the greatest and I love her.
So who knows what today will bring. My first Valentines Day! Well my first birthday married wasn't exciting enough with radiation and chemo so we decided to vamp up this holiday!
Hopefully surgery is tomorrow and we can bust out of here sooner. Life is great and if you need specific things to pray for we are praying for the bone. We are praying that it does not have infection and that we can keep the bone that I already have. Also, for that little spot...that it may not be cancer regrowth but rather scar tissue. Peace and love is always in there along with a guided surgeon who will be able to save my left side. (yes, this is at risk again and the brain mapping test today will help them avoid damaging it)
Have a wonderful morning! It's warm in AZ! :) haha.. I feel bad for those of you in the snow...I am just counting my blessings! :)
Tara
Sunday, February 13, 2011
Brain Surgery: Take Two (Practically a Pro)
We recently spoke to Doctor Smith. He is a brain surgeon, hopefully my surgeon. It has been confirmed that I will need surgery ASAP. Tomorrow starts testing and then we see from there. Dr. Smith is thinking Tuesday or Wednesday hopefully. Our only road block is insurance, well maybe it is a huge road block! :) They said that there are ways to work around it especially if I stay here. The goal is to call it an emergency (which I guess it is) so insurance will cover it. So the process starts tomorrow morning.
Here is how it is all started. We have been mentioning the fluid lately. The fluid has been acting up on scans and now has pushed its way out to affect me physically. Yesterday I woke up and felt my head in bed. I freaked out thinking it was blood. I can be a crazy sleeper and I thought I had maybe hit it. Josh looked at it and saw this fluid that was coming out of the hole. We rushed to the ER only to wait around for hours and hours and hours! :) Finally, we were admitted to hospital. The nurses love me here. My pain is always at a 0 and I keep walking around and stay happy. They love the board that I have drawn all over and are thrilled that I am a low maintenance patient. It is how I help others...by not needing help! They actually walked into the hospital and asked who was the patient. I was the one with the bracelet so I had to lay in the bed...:) I have a few new colorful bracelets to add to my collection now! Okay back to the surgery.
The fluid acted up and they took an MRI. Everyone has looked at it and the Doctor thinks that it could be an infection of the bone. They said that 99% of the people who have part of their bone removed for a while and then inserted again are fine and they react fine. 1% don't. We all know that I am a special girl and that I do not follow the statistics, in ALL circumstances! That is what he thinks it is. It could be a fluid infection but I do not have a fever...they have checked like 20 times! The other thing that they may check is a unknown spot. They think it is either regrowth or scar tissue. If it is regrowth they will insert little chemo wafers and if it is scar tissue then we will have prayers of thanks and leave it alone! Either way, we will take care of it. If my skull is infected then they will replace it with titanium and we know my body does well with that because I already have plates in there. I don't think anyone could react to titanium. Honestly , it is a scary thing but on the other hand...what if it is just allowing us to catch something early? Either way, I see it as a good thing. I cannot say that I am excited but I can say that I am calm. In fact, they just took my blood pressure and the nurse was extremely surprised. She said that if I could keep my pressure this calm and relaxed I could pass a lie detector! Great...can that go on my resume?! She knew that I had just had the bad news and could not believe my nerves. I say this just to assure you that I am not freaking out and that I will be okay. I am in good hands and now, if Smith is my surgeon, I will have the priesthood in my room! I consider myself extremely lucky. I exercised the past two days so I could get fit and ready for this place and the nurse just gave me bail! :) Well kinda! I am allowed to leave the floor and walk all I want around the hospital...I just can't go home or leave the premise. How many people have that right? I am lucky and have forgotten many things but, I will have plenty of time to write tomorrow and so expect updates. Thanks for your continued prayers. If anyone can make it through brain surgery take two...I can! I am so glad I had the experience earlier this week about how the devil can try to get you at weak points. I know that I can be strong if I stay close to the Savior. There I will stay forever.
Love,
Me
A complete piece of work!
If you would like to read more facts without sarcasm I have added what they send to the ward below...:)
Tara was admitted to the emergency room Saturday because of fluid coming out of her skull at her surgical incision site. She may have an infection, but does not have a fever.
Here is how it is all started. We have been mentioning the fluid lately. The fluid has been acting up on scans and now has pushed its way out to affect me physically. Yesterday I woke up and felt my head in bed. I freaked out thinking it was blood. I can be a crazy sleeper and I thought I had maybe hit it. Josh looked at it and saw this fluid that was coming out of the hole. We rushed to the ER only to wait around for hours and hours and hours! :) Finally, we were admitted to hospital. The nurses love me here. My pain is always at a 0 and I keep walking around and stay happy. They love the board that I have drawn all over and are thrilled that I am a low maintenance patient. It is how I help others...by not needing help! They actually walked into the hospital and asked who was the patient. I was the one with the bracelet so I had to lay in the bed...:) I have a few new colorful bracelets to add to my collection now! Okay back to the surgery.
The fluid acted up and they took an MRI. Everyone has looked at it and the Doctor thinks that it could be an infection of the bone. They said that 99% of the people who have part of their bone removed for a while and then inserted again are fine and they react fine. 1% don't. We all know that I am a special girl and that I do not follow the statistics, in ALL circumstances! That is what he thinks it is. It could be a fluid infection but I do not have a fever...they have checked like 20 times! The other thing that they may check is a unknown spot. They think it is either regrowth or scar tissue. If it is regrowth they will insert little chemo wafers and if it is scar tissue then we will have prayers of thanks and leave it alone! Either way, we will take care of it. If my skull is infected then they will replace it with titanium and we know my body does well with that because I already have plates in there. I don't think anyone could react to titanium. Honestly , it is a scary thing but on the other hand...what if it is just allowing us to catch something early? Either way, I see it as a good thing. I cannot say that I am excited but I can say that I am calm. In fact, they just took my blood pressure and the nurse was extremely surprised. She said that if I could keep my pressure this calm and relaxed I could pass a lie detector! Great...can that go on my resume?! She knew that I had just had the bad news and could not believe my nerves. I say this just to assure you that I am not freaking out and that I will be okay. I am in good hands and now, if Smith is my surgeon, I will have the priesthood in my room! I consider myself extremely lucky. I exercised the past two days so I could get fit and ready for this place and the nurse just gave me bail! :) Well kinda! I am allowed to leave the floor and walk all I want around the hospital...I just can't go home or leave the premise. How many people have that right? I am lucky and have forgotten many things but, I will have plenty of time to write tomorrow and so expect updates. Thanks for your continued prayers. If anyone can make it through brain surgery take two...I can! I am so glad I had the experience earlier this week about how the devil can try to get you at weak points. I know that I can be strong if I stay close to the Savior. There I will stay forever.
Love,
Me
A complete piece of work!
If you would like to read more facts without sarcasm I have added what they send to the ward below...:)
Tara was admitted to the emergency room Saturday because of fluid coming out of her skull at her surgical incision site. She may have an infection, but does not have a fever.
She met with the neurosurgeon today, and they have decided to go ahead with a follow-up surgery. He said that there are two reasons he wants to do surgery: It could be tumor re-growth or necrosis (dead tissue) from radiation. The findings on the scan show there is fluid in her brain and some enhancements (growth) but they are unable to tell exactly what the enhancements are from the scans. They will not know until they get in there which it will be. The fluid leakage has caused them to need to move on this so they can remove it early if it is tumor re-growth.
Surgery will happen very soon. Tara will stay admitted to the hospital until surgery but just for observation and testing. She feels fine and is planning on working on some projects with Becky while they pass the time. She is able to blog and read her e-mail and deeply appreciates your communications, comments on her blog and uplifting spirits. Right now they have no need for meals, only our prayers.
The Schlappis and Bodreros want everyone to know how much they appreciate everyone's prayers and support. They have been sustained and lifted through this trial because of those who have exercised their faith on their behalf.
We got news
Just got done talking with the surgeon. I will have details in a bit. Letting family know first and working out the details. If you want to get a hold of me, email/comments is the best way. My phone is overflowing already. It is a good thing...there are so many people who care. Thank you so much and please pray that my skull will not have an infection and that the "thing" in there will not be cancer but scar tissue.
Love
Me
Here again
Yesterday I made my monthly visit to the Emergency Room. You know it is sad when the ER nurses know you and say, “Hey you have been here before” and when your transport person knows who you are. Making friends at the ER is not really a good thing. Yesterday morning I woke up and I had a hole in my head. Josh said it looked like someone punctured me with a non-mechanical pencil. The fluid yesterday morning was wet and sticky. At first I thought I had blood on my head but then josh looked and right on my scar, there was a hole. We headed straight to the ER after Terri told us that it could be an infection and we needed to get it checked on ASAP. So we sat in the ER from 9 yesterday morning until 11 yesterday night when they finally decided to admit me. I am currently sitting here waiting for my surgeon to come look at my head. The fluid has increased but it keeps drying before they can take a culture. I have not let them put an iv in my. I have assured that it is not necessary! :) My nurses find my comments on the white board comical and do agree…I am stubborn! I figured it was only fair to give them a heads up that I was a piece of work. My nurse came in to give me pain meds this morning and I about told her that my pain was an agonized 9 so I could get me so morphine but then she saw my silly picture next to the zero pain scale that I had drawn. Covers blown…the nurses know I am not in pain… No morphine this trip! :) So back to Josh and I’s magical Valentines date last night. We set up House on Josh’s computer and snuggled in our huge:) ER room! We were lucky we fit. The nurses found it comical that we were sitting in the hospital watching House! :) The funniest was the sergeant my mom called her the “Nurse Nazi” she freaked out about how many people were in the room. Mom tried to hide from her but she kept finding her hiding behind the curtain. She actually sent security after her! Another nurse said that it was fine and told us when the crazy nurse left. Her shift ended at 7 but come 8:30 she was still there! So Josh and I got to have a romantic time together and then we had a show at the end of the night. There was a lady in there that was so hopped up on drugs. She was going crazy and freaking out at everyone. I wish I had a video for you. Everyone just got up and kinda watched/laughed at her. I guess she was in the ER New Years Eve and the nurse said that she had enough alcohol in her to kill most people. Her boyfriend actually brought her in because she was so high. It was the best Valentines weekend ever!
So now I am sitting here waiting for the surgeon to get here. I don’t have a fever but the fluid is increasing and he( Dr. Smith, my AZ Surgeon) is coming to see me. I have seen his nurse a few times and they are not quite sure what is going on yet. There may be a problem with my skull letting fluids out. It may be spinal fluid or a protein build up. We will know more when the surgeon gets here hopefully.
Well I will post after the doc comes. Wish me luck!
So now I am sitting here waiting for the surgeon to get here. I don’t have a fever but the fluid is increasing and he( Dr. Smith, my AZ Surgeon) is coming to see me. I have seen his nurse a few times and they are not quite sure what is going on yet. There may be a problem with my skull letting fluids out. It may be spinal fluid or a protein build up. We will know more when the surgeon gets here hopefully.
Well I will post after the doc comes. Wish me luck!
Wednesday, February 9, 2011
Dear Blog
My head hurts and I am awfully nervous about my scan next week. They come much faster than I could have ever guessed they would. I tell myself deep breaths, it will all be fine but then my stomach gets that “not chemo” feeling and my head starts going crazy. I am starting to loathe these mind games I play with myself but can’t seem to stop them. This guilt of not being able to do everything a wife (by the definition I grew up with) is supposed to do never leaves my mind and of course, Josh does everything in his power to destroy it. Then I get sad because of what I am doing to him. He does so much for me and I tell myself that he does not deserve this. I even go as far as wondering why I let myself marry him like this. I call myself selfish for pulling him into this and then walk around the house only to find dirty clothes, beds un-made and dishes in the sink and it all sinks deeper in my heart. I look in the mirror and don’t see the girl he fell in love with. I see a sad heart in the eyes and then I feel the pain in my arm where my vein was burst. Then I look on my chest and see the scar and bulge of my port. I can fell the port running up my chest into my neck. My clothes are beginning to drown me and often he has to eat dinner alone, CJ’s night, night, after night. I get sad watching him do homework. I feel so useless sometimes. I feel like I am forcing him into a profession just because I need insurance. I can’t watch him anymore so I go watch food network and am once again reminded of the fact that I do not cook dinners for us and usually Josh gets breakfast ready. I felt like this for over two weeks. Constantly finding what was wrong with me, constantly feeling bad for what I have done to other people (Josh being the main man). I think it was Saturday night when once again, Josh became my hero. The guilt had won another battle and I was left in tears, waiting for the medicine to force me to sleep, hoping that the next day could be better. I had quiet tears in the dark so I figured I would get through this one alone, and let the tired, hard-working man, get some rest. Unfortunately/fortunately, Josh felt my silent tears and knew something was wrong. He asked me to pray for comfort and I told him I couldn’t. Not only was I having guilt with what I was doing to Josh but also, what I was doing to my Heavenly Father. I had medicine stronger than Chemo and I wasn’t taking it. I was letting days go by without scriptures study and without prayers that really meant something. My faith was dead. “Faith, without works, is dead.” I was not living my testimony by word and action. I could say that I had a testimony of the scriptures and the peace they bring but I could not read them. They were always too far away and I was too tried or sick. Kneeling on the ground meant that I had to face the cold again and get out of bed. I think that the devil hid my scriptures a few times just so I couldn’t find them. I was letting myself go. I was using my agency and chose not to take the medicine that can heal me. What I didn’t realize was that when I was going without scriptures and prayers, I was allowing the devil in. I knocked my own defense walls down and welcomed him in. The devil got to me. He did a really go job. He made me feel like I could not go to my Heavenly Father in prayer. The reason I told Josh that I couldn’t was because I wondered why I could ask for something when I was not giving. I was not doing my part so why should I expect him to do his? It is like getting paid for not doing anything. There was no way I could get help. I wanted help so badly. I told myself that I would start doing the little things and I would get back on track and then ask for help. I felt like I could not ask for forgiveness until after I had repented. I figured that tonight, I will sleep with this awful pain in my soul. Josh obviously knew better and helped me once again realize the atonement and mercy of Christ. It took a while but he convinced me that I could pray and that I could ask, the Lord just needs me to ask. I wanted him to ask so badly, thinking he was more worthy of a blessing. He knew better and refused kindly. After a few minutes I finally did what I should have down weeks ago. I told the devil and his evil spirits to leave. I prayed for Christ’s love to come back. The devil had to leave and Christ’s love was able to feel me with hope and happiness. I peacefully fell asleep that night holding my sweet Joshua’s hand. I am so glad I get to keep him forever. I opened my eyes to see my beautiful Book of Mormon sharing my pillow with me. Josh wanted to help me remember to do the small things! After I read, I looked in the mirror and saw Tara, a girl who could rock any hairstyle (even if it looked freakishly like Kramer from Seinfeld )! Then I saw my port and remember all the pain that it saves me when having infusion, I ran my fingers across my neck where it sticks out and felt the joy of modern medicine that has helped me so much already. I realized that the profession Josh was headed in was one that will not only help me and my medical needs but also has the potential to save other lives. I analyzed my veins and straightened my arm all the way out with little pain and was grateful for the good blood that still runs through my veins. I looked at my eyes, the ones who were swollen with fear and pain and saw my dark brown eyes that my mother loves, my happy eyes. I put on my jeans and was glad that they were a size too big. I realized that even though I was dropping weight, I was dropping it and still keeping my blood counts and protein levels up…horrid way to slim down, but it is working! I walked around the house and saw dishes in the sink and stuff on the floor and then remembered that I wasn’t perfect! My sick feeling reconfirmed that the chemo was still in my body, fighting for me! Why would I loathe one of my strongest armies? All feelings of guilt, doubt, and sadness were gone. I prayed for love throughout the day and I did everything I could to build back up those Satan defense walls that I had destroyed. I tried to use my agency for good. Today, I am a much happier person.
People say that the devil attacks you at your weakest point. I may sound arrogant but they also say that he tries to ruin the best people. I don’t want to say that I am the best but I will say that I have become extremely close to the Lord and I think that really started to bug the devil. So he fought me. I really never want to feel like that again. I know that I can go at any time and I have known that my whole life but at that moment, I felt like I could not. The devil became so much more real to me and it scares me to think that he is working just as hard on other people. It makes me so sad to know that other people are feeling the way that I felt, out of control. It does give me hope and happiness to know that I have a Savior who will forgive me 70 times 7 and who will never cease to show me love when I ask. I know now how important my works are. Faith alone won’t do it for me. I need my works.
Scan comes up next week. I know I am in good hands. I have to tell that fear to take a hike! I am on the Lord’s side now and forever.
I am a daughter of God
Becky, by the way...
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