If conversations about bowel movements gross you out, you may want to stop reading this entry. I wont go into details, I've never been that kind of person who poops and tells. HA!
Well, I never mentioned that one of the reasons I haven't been writing so often is because I've been in a lot of pain. First it was the pain from the sinuses in my face. But recently, I have been having really bad pains when I inhale deeply. It is under my breasts around the rib cage area and wraps around to the back. Sometimes it goes down the side from chest to hip (again rib cage area). I have no idea what is causing the pain but the only thing helping was Tylenol codeine.
Tylenol codeine can be your best friend and worst enemy. It makes you drowsy, dizzy, constipated, and can cause you problems breathing. I haven't taken my inhalers really since I've been home (April 19). For one, I don't hear any wheezing, my lungs feel fine, and my family and friends are convinced that my medication for asthma's played a role in my getting cancer. Don't ask, I'm not sure how to explain...and there is really no proof to say it did or it didn't. Also, since I have been in California, I started taking Advair and recently heard some commercials that are not sitting well with me so I stopped taking it cold turkey.
Okay! My point! I thought maybe the Tylenol codeine was in fact making my breathing suffer or something. My husband explained to me that as an opiate, what it does is really relaxes you so your breathing is less per minute. So it's not that it does something to your breathing it just slows it down. So really that can't be the reason for the pain.
My husband decided after I was up for an hour crying my eyes out because the pain was so bad and I couldn't sleep any which way, to do some research. He read that the pain can be caused by heartburn, it can be caused by gas, and it can be caused by a blockage in your intestines...ie. constipation.
Well. I noticed that the food I have does cause a lot of gas and burping. Maybe because of all the vitamins and nutrients in my liquid food?! Anyway. When I started taking the Tylenol codeine for all the pain, I noticed the gas had stopped. So it could be that.
Also, I realized I was having bad heartburn lately and realized also I hadn't been drinking as much water in between meals as usual so it could be that too.
And lastly. I hadn't gone to the bathroom for 1-2 weeks ( I can't remember) since I started taking the Tylenol codeine as well.
My Occupational Therapist came to see me on Friday and I told her what was going on. She was very concerned and said I had to go to the hospital (urgent care) right away. She said that my intestines could pop, and to be bluntly honest, you can die. This was the icing on my cake! I asked her what she thought they would do? She said probably an enema. I was so angry. I am usually very private about what you do behind the closed bathroom door. It is gross and not something you share...in my opinion. However, now I had to have someone else see and do something to my bum...not a happy girl!
My alternative...not good either! I didn't want my intestines to rupture.
So I waited it out and then found out that the urgent care wasn't open until later in the evening anyway. I stopped taking the Tylenol codeine and just took regular Tylenol and everything seemed to go okay. That night when I went to bed, my husband said to me, if you don't go to the bathroom in the morning, we have to go to the hospital. I was really upset because the next day was Relay for Life and started at 9 am. I would miss everything if I went to the hospital.
Sure enough, that morning when I woke up...needless to say, I didn't go to the hospital! Yeay! What a relief. The pain also seemed to go away for a while, and my sides didn't hurt so bad. Last night they were hurting me though so I'm still not 100% sure what the issue really is.
Moral of the story, it really isn't good to hold it in! I didn't really realize my intestines could just pop if they don't get to do what they are suppose to do. But it obviously makes sense way. If you have problems, or symptoms like I had, you may want to get checked out and make sure you are okay.
Sunday, May 22, 2011
Swallow Test #2
I had another swallow test done. While I am progressing, there still is a part that is not fully healed. (Maybe if I get a copy of the DVD I can show you what I am talking about.) Less liquid is pooling in this area--hence the progression--but there is still some liquid there.
What does this mean?
Another 2 weeks of waiting and healing until my third swallow test. Yeah, I'm disappointed. I always am because I set high expectations of myself. But truth be told, I was a little relieved. My tongue is still very much swollen in the middle and I can't possibly imagine trying to eat on my own right now. By eat I mean soup, water, apple juice, Ensure. It takes quite a few swallows to get the water down and I'm sure it has something to do with the fact that my tongue is still swollen and therefore not moving as naturally as it should. Remember when you go to the dentist and they numb you? When you try to drink the water dribbles out of the side of your mouth...it's something like that only my lips aren't numb my tongue is!
Hopefully though, at the next swallow test, I will be healed and be approved to start drinking and eating food with my tube still in. I know you must think, isn't that harder? Point is, I have to be able to get enough calories down on my own since the tube wont be there to do it for me if I cant. Strange, I've grown attached to this thing. It feeds me food every 4 hours. It hydrates me with water every 6 hours. And medicine of any kind is prescribed to me in liquid form which not only goes down faster in the tube but also works faster. Some of you know, I can't swallow pills anyway!
Also on this visit, I saw my plastic surgeon for a follow up. It's been 6 weeks since surgery #2 and I had my feeding tube in (nasal gastric tube) and they are suppose to get removed every month.
What does this mean? What do you think?
I had the pleasure of being awake while they removed the old one to put a new one it! Fun stuff! So they took a smaller tube and shoved it into my left nostril and down into my stomach. They made sure it was in there and then proceeded to remove the old tube. Not only did it seem like forever, the tube just kept coming and coming, but I could taste it. And when I saw the tube out of my nose, the bottom was GREEN. Like algae. It was completely awful. I had no medicine, nothing to drug me up so I wouldn't remember, see it, taste it etc. I was fully awake. Remember the bottom of the tube has been sitting in my stomach bile for 6 weeks! And when the tube comes out the only way out is back through the nostril it went into. But don't forget, it has to pass the back of your throat and your tongue on the way up and out. Alright I'm done grossing you all out.
Lastly, the old tube, since it was put in at surgery, was stitched into my nose...like from one side of the nostril to the other so it would not get pulled out or slide out accidentally. When they went to clip the stitches out (with tubes in both nostrils) I just couldn't help it any longer. I was in complete tears; it hurt like hell. Of all the things I've been through, removing stitches still makes me cringe the most.
I went down to x-rays to make sure the tube was in fact where it was suppose to be and then got the approval to go home. Another long day at the hospital and we did miss 30 minutes of American Idol that day. Thank God for DVR it was recorded :)
There is a light at the end of the tunnel!
This tube is SOOO much thinner. It is really flexible not stiff. It doesn't hurt me or my nose at all when it is clipped to the back of my hair. (I'll have to show you a picture. That's where I keep it so it doesn't get caught on anything. Everyone said it's the first time they've seen someone do that. What can I say? I'm an original.) Food goes down the same, a little slower since the tube is narrower but it doesn't change anything. My face doesn't hurt like it did before which means the tube WAS causing all the pain. They did put me on antibiotics to treat my sinus infection that was caused by the tube. And this tube is just taped to my nose so no more stitches. It's an improvement...let's go with that!
What does this mean?
Another 2 weeks of waiting and healing until my third swallow test. Yeah, I'm disappointed. I always am because I set high expectations of myself. But truth be told, I was a little relieved. My tongue is still very much swollen in the middle and I can't possibly imagine trying to eat on my own right now. By eat I mean soup, water, apple juice, Ensure. It takes quite a few swallows to get the water down and I'm sure it has something to do with the fact that my tongue is still swollen and therefore not moving as naturally as it should. Remember when you go to the dentist and they numb you? When you try to drink the water dribbles out of the side of your mouth...it's something like that only my lips aren't numb my tongue is!
Hopefully though, at the next swallow test, I will be healed and be approved to start drinking and eating food with my tube still in. I know you must think, isn't that harder? Point is, I have to be able to get enough calories down on my own since the tube wont be there to do it for me if I cant. Strange, I've grown attached to this thing. It feeds me food every 4 hours. It hydrates me with water every 6 hours. And medicine of any kind is prescribed to me in liquid form which not only goes down faster in the tube but also works faster. Some of you know, I can't swallow pills anyway!
Also on this visit, I saw my plastic surgeon for a follow up. It's been 6 weeks since surgery #2 and I had my feeding tube in (nasal gastric tube) and they are suppose to get removed every month.
What does this mean? What do you think?
I had the pleasure of being awake while they removed the old one to put a new one it! Fun stuff! So they took a smaller tube and shoved it into my left nostril and down into my stomach. They made sure it was in there and then proceeded to remove the old tube. Not only did it seem like forever, the tube just kept coming and coming, but I could taste it. And when I saw the tube out of my nose, the bottom was GREEN. Like algae. It was completely awful. I had no medicine, nothing to drug me up so I wouldn't remember, see it, taste it etc. I was fully awake. Remember the bottom of the tube has been sitting in my stomach bile for 6 weeks! And when the tube comes out the only way out is back through the nostril it went into. But don't forget, it has to pass the back of your throat and your tongue on the way up and out. Alright I'm done grossing you all out.
Lastly, the old tube, since it was put in at surgery, was stitched into my nose...like from one side of the nostril to the other so it would not get pulled out or slide out accidentally. When they went to clip the stitches out (with tubes in both nostrils) I just couldn't help it any longer. I was in complete tears; it hurt like hell. Of all the things I've been through, removing stitches still makes me cringe the most.
I went down to x-rays to make sure the tube was in fact where it was suppose to be and then got the approval to go home. Another long day at the hospital and we did miss 30 minutes of American Idol that day. Thank God for DVR it was recorded :)
There is a light at the end of the tunnel!
This tube is SOOO much thinner. It is really flexible not stiff. It doesn't hurt me or my nose at all when it is clipped to the back of my hair. (I'll have to show you a picture. That's where I keep it so it doesn't get caught on anything. Everyone said it's the first time they've seen someone do that. What can I say? I'm an original.) Food goes down the same, a little slower since the tube is narrower but it doesn't change anything. My face doesn't hurt like it did before which means the tube WAS causing all the pain. They did put me on antibiotics to treat my sinus infection that was caused by the tube. And this tube is just taped to my nose so no more stitches. It's an improvement...let's go with that!
Friday, May 6, 2011
I had a Dream...
That I ate a crispy fried battered shrimp and a slice of watermelon. Everyone was mad at me, but it went right down! I wish...
Swallow Test
We were at the Kaiser hospital in West LA from 1:45 until 6:30 yesterday! Almost missed American Idol! lol
We did the swallow test first. The technician was Ben and he was really nice. Explained everything. On a poster in the hallway was his picture and under it, it said Speech Therapist so I figured if he says something in regards to my speech etc. he's probably right. My husband took a picture, of me just before the test.
He put a sheet on me in case he spilt food on me when he fed me and a washcloth in case I wanted to wipe my face. That big yellow circle is a camera that recorded me like an x-ray machine.
So they had me drink apple juice, water, and apple sauce like we thought. He didn't do the banana or graham cracker I saw on the counter thank God. I know I wouldn't be able to do that right now.
Everything went down fine, it took a few swallows but it went down. They were suppose to be making a DVD of it but it didn't work. My husband got to see everything and said it looked good. There was one spot that leaked a bit but it was in the neck. The tongue area is all healed. So the plastic surgeon wants me to wait another 2 weeks to see if this part of the flap/throat heals before she starts me on food.
I decided that the tube is here to save my life, make sure I get the nutrition etc. so I'm not going to complain anymore about it. Ben said before he can tell the plastic surgeon he thinks the tube can be removed, he has to be convinced that I can swallow enough nutrition on my own. So, I guess until the swelling in the tongue goes down, and neck/throat, the tube isn't so bad. I've gone this long, what's 2 more weeks? The plastic surgeon said we'd celebrate when it came out!
So, because the DVD didn't record I had to do the test twice. The plastic surgeon watched the second time but also got a DVD of it. Pretty crazy to see the food being swallowed. You see my heart, brain, spine, etc. like an x-ray.
Speaking of x-rays, since I have been coughing, the plastic surgeon thought I should have an x-ray done of my lungs to make sure nothing is suspicious: infection, pneumonia, etc. She and I don't think I have that but just to be certain.
I told her my concerns lately about the cough, and having a fever all yesterday, she said anything over 101.5 we need to call her. I didn't hit that high. She looked in my mouth, neck, etc. and said she saw no signs of infection. The fever could be caused by the flap or the throat. My right ear has been throbbing a bit but it could be from my teeth. They are itchy and want to be brushed and I don't have that approval yet. I've been grinding them lately because of it which is why my ear could be bugging me. She cleaned in my mouth, it bled a bit but she took a lot of the white stuff out which was nice of her. It was bugging me. She said everything looks the way it's suppose to. I told her about coughing up phlegm and she said it's fine, it's okay to see some blood too as long as it stops. So all my concerns were addressed.
Instead of seeing her on the 12th, I'm going to see her on the 19th and do a second swallow test then. I'm allowed ice chips still but not water. Hopefully the tube comes out then. It's looking gross.
The tech Ben said that for someone who has little mobility of her tongue (still swollen) my speech was great. He was very positive. I think he was even willing to say to take the tube out today!
Another bonus, my arm is allowed to get wet now. It doesn't have to be in a bandage anymore. Makes me a little apprehensive but I can wrap it for sleep or when I go out. She laughed at me because she said whenever the bandage comes off, I just stare at it, like I'm mesmerized. She said to my husband he might need to pull me out of the shower because I'll be staring at it. I can't help it, it's so foreign to me.
We did the swallow test first. The technician was Ben and he was really nice. Explained everything. On a poster in the hallway was his picture and under it, it said Speech Therapist so I figured if he says something in regards to my speech etc. he's probably right. My husband took a picture, of me just before the test.
So they had me drink apple juice, water, and apple sauce like we thought. He didn't do the banana or graham cracker I saw on the counter thank God. I know I wouldn't be able to do that right now.
Everything went down fine, it took a few swallows but it went down. They were suppose to be making a DVD of it but it didn't work. My husband got to see everything and said it looked good. There was one spot that leaked a bit but it was in the neck. The tongue area is all healed. So the plastic surgeon wants me to wait another 2 weeks to see if this part of the flap/throat heals before she starts me on food.
I decided that the tube is here to save my life, make sure I get the nutrition etc. so I'm not going to complain anymore about it. Ben said before he can tell the plastic surgeon he thinks the tube can be removed, he has to be convinced that I can swallow enough nutrition on my own. So, I guess until the swelling in the tongue goes down, and neck/throat, the tube isn't so bad. I've gone this long, what's 2 more weeks? The plastic surgeon said we'd celebrate when it came out!
So, because the DVD didn't record I had to do the test twice. The plastic surgeon watched the second time but also got a DVD of it. Pretty crazy to see the food being swallowed. You see my heart, brain, spine, etc. like an x-ray.
Speaking of x-rays, since I have been coughing, the plastic surgeon thought I should have an x-ray done of my lungs to make sure nothing is suspicious: infection, pneumonia, etc. She and I don't think I have that but just to be certain.
I told her my concerns lately about the cough, and having a fever all yesterday, she said anything over 101.5 we need to call her. I didn't hit that high. She looked in my mouth, neck, etc. and said she saw no signs of infection. The fever could be caused by the flap or the throat. My right ear has been throbbing a bit but it could be from my teeth. They are itchy and want to be brushed and I don't have that approval yet. I've been grinding them lately because of it which is why my ear could be bugging me. She cleaned in my mouth, it bled a bit but she took a lot of the white stuff out which was nice of her. It was bugging me. She said everything looks the way it's suppose to. I told her about coughing up phlegm and she said it's fine, it's okay to see some blood too as long as it stops. So all my concerns were addressed.
Instead of seeing her on the 12th, I'm going to see her on the 19th and do a second swallow test then. I'm allowed ice chips still but not water. Hopefully the tube comes out then. It's looking gross.
The tech Ben said that for someone who has little mobility of her tongue (still swollen) my speech was great. He was very positive. I think he was even willing to say to take the tube out today!
Another bonus, my arm is allowed to get wet now. It doesn't have to be in a bandage anymore. Makes me a little apprehensive but I can wrap it for sleep or when I go out. She laughed at me because she said whenever the bandage comes off, I just stare at it, like I'm mesmerized. She said to my husband he might need to pull me out of the shower because I'll be staring at it. I can't help it, it's so foreign to me.
Tuesday, May 3, 2011
18 Days Left...
Hey readers! I have a huge favor to ask! There are 18 days left until the Relay for Life event takes place on May 21st! I'm about $300.00 shy of $2000.00! What an accomplishment for me, my team, and everyone who contributed. Obviously, don't donate if you have already...but if you haven't I would be so appreciative if you would help me reach my goal. Every little bit helps! xo
To donate to me: Click Here
To donate to our team: Click Here
To visit the Relay for Life Website: Click Here
Thank You so Much!
To donate to me: Click Here
To donate to our team: Click Here
To visit the Relay for Life Website: Click Here
Thank You so Much!
I Want My Mom
The other day while in the shower, I got shampoo in my eyes. Okay! I'm 27, this stuff happens...but I cried like a 5 year old and it took a lot to calm me down. Why did I respond this way? Ever since I found out I had cancer I have become more aware of my body...I'm so aware that sometimes when asked, "what do you feel?" I have no idea how to answer! I started to notice a new trend...anxiety attacks.
I never use to be this overly sensitive but now it seems everything gets to me and I don't know how to deal with it. I apologize to my husband all the time for freaking out. I really wish I didn't. I even cried to him one day that I wanted my mom...what 27 year old does that?!
As you may know, my parents are home now. They were with me for 50 days! God bless them. While I could tell you almost what happened on each of those 50 days and it would take a while, it went by with a blink of an eye. I was in the hospital collectively about 18 of those days. I honestly had no idea how I was going to let them go. In fact, when they left we hugged quickly and then I buried my face in my husband's shirt and cried as they drove away...I can never actually watch them leave.
I realized something about myself this week. When my parents, siblings, relatives and friends are around I become...well, needy! I feel sorry for myself, I ask them to help me more, I pout about not being able to join in on the fun of EATING what they are eating. Okay, maybe I was a little more dependent on them because it was my first 2 weeks home from major surgery. But once they left, I started to become a little more like me again. I cooked dinner the other night for my husband (don't get too excited it was a frozen pasta dish), I get dressed completely by myself now, and I learned how to feed myself (by tube) so my husband could start to go back to work. I'm still very much dependent on him but I'm pushing the bar up a notch each day and that's something to be proud about. It made me happy to hear my home nurse say to me that he was surprised to see my tracheostomy hole was closed. I told him it has been for about 3 days now. He said he thought I was a fast healer! Lets hope the inside is healing as fast as the outside.
This Thursday I take a swallow test. It's to see where the liquids go in my mouth. Hopefully, they are going down the right way. Keep in mind, aside from crushed ice (also known as ice chips) I haven't swallowed anything since dinner (soup) on April 6th. I hope everything is healing inside and there are no leaks anywhere...the real reason I want this so badly is because if the swallow test goes well, the feeding tube gets to come out!! Keep your fingers crossed!!
I never use to be this overly sensitive but now it seems everything gets to me and I don't know how to deal with it. I apologize to my husband all the time for freaking out. I really wish I didn't. I even cried to him one day that I wanted my mom...what 27 year old does that?!
As you may know, my parents are home now. They were with me for 50 days! God bless them. While I could tell you almost what happened on each of those 50 days and it would take a while, it went by with a blink of an eye. I was in the hospital collectively about 18 of those days. I honestly had no idea how I was going to let them go. In fact, when they left we hugged quickly and then I buried my face in my husband's shirt and cried as they drove away...I can never actually watch them leave.
I realized something about myself this week. When my parents, siblings, relatives and friends are around I become...well, needy! I feel sorry for myself, I ask them to help me more, I pout about not being able to join in on the fun of EATING what they are eating. Okay, maybe I was a little more dependent on them because it was my first 2 weeks home from major surgery. But once they left, I started to become a little more like me again. I cooked dinner the other night for my husband (don't get too excited it was a frozen pasta dish), I get dressed completely by myself now, and I learned how to feed myself (by tube) so my husband could start to go back to work. I'm still very much dependent on him but I'm pushing the bar up a notch each day and that's something to be proud about. It made me happy to hear my home nurse say to me that he was surprised to see my tracheostomy hole was closed. I told him it has been for about 3 days now. He said he thought I was a fast healer! Lets hope the inside is healing as fast as the outside.
This Thursday I take a swallow test. It's to see where the liquids go in my mouth. Hopefully, they are going down the right way. Keep in mind, aside from crushed ice (also known as ice chips) I haven't swallowed anything since dinner (soup) on April 6th. I hope everything is healing inside and there are no leaks anywhere...the real reason I want this so badly is because if the swallow test goes well, the feeding tube gets to come out!! Keep your fingers crossed!!
Sunday, May 1, 2011
Thelma & Louise
People always say...I always say, everything happens for a reason. Sometimes I truly believe it. Like what happened this month.
I have this friend named Kim. We met in high school and hit it off immediately. She's like my sister Christina but with freckles! We had a moment at the end of high school and didn't speak for some time. Luckily for facebook [insert laugh here] we were reconnected. We discussed what drove us apart and became more open with one another than before!
We planned this exciting trip to San Francisco with some of my family. We were going to go to Vegas to pick up my aunt and uncle and then drive up to San Fran for a few days. We even discussed being like Thelma and Louise and driving to Arizona's Grand Canyon just the two of us. Usually, I have maps printed, hotels temporarily booked, an itinerary all planned but for some reason I didn't do that for this trip. In case you haven't figured it out, the trip was planned for April 20th-30th. I was released from the hospital on April 19th. Needless to say the trip was cancelled. I will always feel guilty but I know it's not my fault.
Kim kept her flight and came out anyways. Her first time to California and this is how we are going to spend it ?! It was an emotional reunion (even though we had seen each other in February when I snuck home) and again I felt awful not being really mobile, tired all the time, home bound for 'feedings'... it just was not how I saw it. But in the midst of seeing this one facet, the prism changed.
Here I was, with a friend I wasn't 100% sure was back to her old-high school-self just yet and met someone even better instead! Kim didn't hesitate to look at my wounds under the dressings. She learned how to feed me by tube so my husband could have a 'break' and go to work. She got on my case if I didn't do my mouth stretches and she comforted me when I cried for no reason. The person I knew over 10 years ago was back in one sense but this person I spent the last 10 days with was someone else.
She didn't make me feel bad for cancelled plans. She didn't complain when I slept in. She didn't offer herself to me and then sit on the sidelines. She went full speed ahead. She was my friend. She was a great friend. I was sad to see her go. But today, I'm feeling lucky. How can God bless someone with so many wonderful people in their life?
I love you Kim! Shout outs to you my friend!
Sandra Bullock's Star/ Hollywood
At the Grove
I have this friend named Kim. We met in high school and hit it off immediately. She's like my sister Christina but with freckles! We had a moment at the end of high school and didn't speak for some time. Luckily for facebook [insert laugh here] we were reconnected. We discussed what drove us apart and became more open with one another than before!
We planned this exciting trip to San Francisco with some of my family. We were going to go to Vegas to pick up my aunt and uncle and then drive up to San Fran for a few days. We even discussed being like Thelma and Louise and driving to Arizona's Grand Canyon just the two of us. Usually, I have maps printed, hotels temporarily booked, an itinerary all planned but for some reason I didn't do that for this trip. In case you haven't figured it out, the trip was planned for April 20th-30th. I was released from the hospital on April 19th. Needless to say the trip was cancelled. I will always feel guilty but I know it's not my fault.
Kim kept her flight and came out anyways. Her first time to California and this is how we are going to spend it ?! It was an emotional reunion (even though we had seen each other in February when I snuck home) and again I felt awful not being really mobile, tired all the time, home bound for 'feedings'... it just was not how I saw it. But in the midst of seeing this one facet, the prism changed.
Here I was, with a friend I wasn't 100% sure was back to her old-high school-self just yet and met someone even better instead! Kim didn't hesitate to look at my wounds under the dressings. She learned how to feed me by tube so my husband could have a 'break' and go to work. She got on my case if I didn't do my mouth stretches and she comforted me when I cried for no reason. The person I knew over 10 years ago was back in one sense but this person I spent the last 10 days with was someone else.
She didn't make me feel bad for cancelled plans. She didn't complain when I slept in. She didn't offer herself to me and then sit on the sidelines. She went full speed ahead. She was my friend. She was a great friend. I was sad to see her go. But today, I'm feeling lucky. How can God bless someone with so many wonderful people in their life?
I love you Kim! Shout outs to you my friend!
Sandra Bullock's Star/ HollywoodValencia Town Center Mall
At the GroveSanta Monica Beach
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