Wednesday, July 30, 2008
Monday, July 28, 2008
Zephaniah 3:17: "The Lord your God is with you, he is mighty to save. He will take great delight in you, he will quiet you with His love, he will rejoice over you with singing."
I read a book once (the Sister Chicks series) and a verse that kept coming back to one of the ladies in the book was Psalm 32:7 from The Message translation.
"God's my island hideaway, keeps danger far from the shore, throws garlands of hosannas around my neck."
Oh that I could be on at an island hideaway. Wouldn't that be fun? And, just the thought of getting off the plane in Hawaii and having someone throw garlands of beautiful orchids around my neck just makes me want to pack my suitcase, but reality check. I'm still here in Arkadelphia, planning New Student Retreat and working on finishing up recruiting our class. But, how amazing that God brings that to us, that simply by resting in His presence, we are there, quited with His love like the waters on the rocks and much like the elder Hawaiian women, He sings over us. Like really. A song of blessing? A song of healing? Maybe a song of rejoicing? Maybe a song of celebration? (that's what I'll be singing on Wed!) A song of thanksgiving? Oh, that He would sing over me. What a thought.
The raspy smoker voice is back. I shouldn't have sung yesterday in Praise Team, but it was so fun and I felt so good yesterday morning and could talk so normal. Thank you Lord for a voice to praise you.
You know, this voice thing was a huge concern coming into this radiation. I thought because of where I'm being radiated that it might affect it. I actually asked a lady at the beginning if it would mess up my vocal chords. She didn't give me a super huge resounding "no", but just told me that I would need to take care of myself. Yeah right. Hey lady, I make my money running my mouth!!! Hello.
So, today I found out that the sores in the back of my mouth are not from the mouth trays last week, they are radiation sores. When the doctor called them that today he said it like it is no big deal. I'm glad he thinks that. I've never been one much to obsess about oral health. I mean I think I take pretty good care of my teeth...but "sores". Those are the things they talk to you about in health that dirty people get. It's a good thing I'm single. I knew there was a reason for everything.
You know, I was telling Lisa today on the way home, that I cannot imagine what other side effects people who go through this longer have to deal with. They said I shouldn't have much since I was just having 17 treatments, but I cannot imagine. Most of the time the big side effects don't kick in until 6 weeks. That would be 14 more treatments than what I have...wowzers! Maybe some skin irritation. I really haven't had a problem with that. That you Jesus.
They did give me some medicine and the pharmacist today called it a miracle drug, so I'm waiting for it to happen.
Ok, so I said I wasn't going to talk about those on here, but I did. I just couldn't hold back. Sorry.
Sunday, July 27, 2008
My throat is feeling much better. I didn't have one cough drop yesterday and today I felt good enough that I sang in the praise team. I might pay for it for a couple days, but it was so worth it.
This morning's service was amazing. And, I'm so excited that we are having a church fellowship tonight...guess what's on the menu, homemade ice cream and watermelon. Welcome to my world!!!
Wednesday, July 23, 2008
You see, I have these fluoride trays that I have to use to help the enamel on my teeth do what it needs to do since the salivary gland is not producing as it should (yeah I did just say all that and not retype it to say the right thing a different way...I'm cool like that). If you have ever had whitening trays or any other device in this family that you put some form of liquid/paste in and then squish up over your teeth, you know that if the edges are not cut properly, they can cut your gums or mash on them and make them swell and make them hurt. Well, that happened to me this week. I still have all four wisdom teeth in my BIG MOUTH (no surprise there) so, that has been a bit of an irritation in the back. You know like when you stab your gum with a chip consuming the appetizer that most Mexican food restaurants serve. Yeah and then it swells and it is hard to brush your teeth and it feels weird...yeah, that's what's going on back there. Then, in the front, the mouth guard cut my gum, so there is like a spot where it is trying to heal.
Yeah, last night I put my mouth guards in like I'm supposed to and the minty fresh taste of the fluoride paste got in my cut. We are not talking "salt in a wound" kind of pain, we are talking FIRE! Not Hot Tamale fire, or 20 jalapenos on one nacho fire, not Hot buffalo wing sauce at Buffalo Wild Wings (If you even able to get that far). We are talking the kind where you want to take your gums out of your mouth and drowned them in the coldest water you can find. Yeah, it was not fun.
I had already decided no matter what they told me today, I was not going to use them until the cut healed. Thank goodness, the nurse today agreed. No more fluoride trays for a couple days.
Now, back to throat. My new medicine is kinda helping. The problem comes when it wears off, so I went today with a set of questions. You see about 9:00 pm, all the pains start mixing together...the burning cut, the sore throat, the hungry stomach and the fatigue...not a good mixture and I'm a whiny baby when I get tired...good thing I've been alone. So, the note pad came out last night when I got home:
How often can I use the numbing medicine?
Can I do something else between?
Can I use anbesol or chloraseptic spray?
I thought milk shakes and yogurt would be a good thing, but they are killing my throat? So, is cold not good?
Can I wait a few days to use my fluoride trays?
How long will this pain last after I'm finished with radiation?
Help it hurts! (i really did write that down...)
Here are some things I found out...
1. I need to wait longer after I take the medicine to eat, like 5-10 minutes so it has time to numb my throat.
2. gargling the medicine might help
3. No chloraseptic spray or commercial mouthwashes. They have a content of alcohol in them that they do not want me to have that will react weird with the radiation.
3. Stuff at room temperature would probably be better
4. Wait until the cut heals to use trays (Hallelujah)
5. get the trays cut so they fit
6. The thing with radiation the makes it work so well is that one treatment builds on the previous treatments, so just like my symptoms increase, they will gradually decrease over the coming weeks.
7. try the new things I learned today and if they don't work, I can ask the Doctor more questions tomorrow (this is the good thing about going everyday)
8. eat bland soft food...yeah, this is where she got me
You see, I'm an eater. I like nice foods and I like flavorful foods. Maybe it is because I'm obsessed with the food channel, I like nice restaurants, or more likely because my mom is a good cook and I know what good food looks and tastes like. You see, I can read a recipe and tell you what a dish will taste like and if it is something I would like to eat. (side note, this makes eating at a new restaurant difficult because I want to read every description on the menu..yeah, I'm annoying).
So, eating bland foods without flavor is not going well. Here's what I said to her, "Can you give me some ideas, I don't even know what kinds of foods fall in that category". I mean really could I be any more of a SNOB! Here's the list:
mac and cheese..ok
creamy mashed potatoes..calories, I like it
creamy soups..warm not hot
juices...apple or grape...funny, the two kinds I don't like
puddings...really, I can make a meal off this!!!
soft ice cream
pureed veggies...yeah about that, I don't do mushy
gravies...yeah, when I decided to not be a fat kid, I put these to the side, not a gravy fan
sauces...ok, I'm liking her...if you know me, everything I cook always has a sauce on it, so this might work...except I cant swallow the things that sauces cover...so that could be weird.
So, Lisa and I made a grocery list on the way home and I'm headed to Wal-mart. Here's your homework...any suggestions on good soft foods that I might enjoy eating? Oh yeah, Popsicles were on the list too.
***update, you ask for honestly so that is why I give you all the details. This is part of my process and I know that (and, I can see the light at the end of the tunnel. Next Wed and radiation is over). I just write to share my experience, not for huge sympathy..although it is nice :). Just kidding. I do appreciate you reading and continuing to come back. It is a huge complement and it means so much that you care**
Monday, July 21, 2008
Speaking of, the moment of esophogitis (sp?) has kicked in. Over the weekend, my throat got really sore. Yesterday was probably the worst. I don't really know how to describe the pain to you besides the worst sore throat you've had. I took a bite of a biscuit last night and about died. It wasn't like it got caught and I was about to choke, it just hurt so bad. I could feel it stuck. I think I might have bruised my esophagus. This morning when I woke up my throat was pretty sore. Not too abnormal since it was really dry. But, it was bad. It hurts to swallow my saliva. I know that sounds weird, but it does. I bought yogurt last night to have for breakfast thinking that it would go down like ice cream and be good.
Boy, was I wrong. That's when I realized that I think I might have bruised my throat. It hurt so bad. I made my way through it and like so many things, it got easier with each bite. I have sucked on Halls drops all day, and that seems to keep things pretty manageable.
I did mention it to my doctor today and he gave me a prescription for XYLOLINE. Its a compound that the pharmacist makes. It comes in a huge bottle, but looks a lot like pediatric liquid medications. It doesn't taste bad, which is nice. It has Lidocane and Benadryl and something else in it that numbs my throat and makes eating easier.
I did loose 5 pounds this past week and that is not good. I think it's good, but the doctor does not want me loosing any weight. Part of the radiation treatment is based on my weight and significant changes in it can affect the treatment.
You know, today is really the first time I've changed what I eat. I think the thing that has made the difference is I'm only drinking water (except for the occasional sweet tea...I can still do that!) and all of the foods I'm eating are soft. So, I guess I need to make some mashed potatoes with heavy cream and lots of full fat cheese. Who knew!
Today started our NABEP (National Association of Baptist Enrollment Professionals) conference. 100 of our friends showed up today from schools all over the South for a three day conference that my staff is hosting with OKBU. We are excited about a few days of networking, professional development and the royal star treatment. It's been a long day and I'm headed to the house. Thanks so much for your prayers. They mean so much to me and I an grateful for everyone of them. I am inspired by your faithfulness.
My love and a couple pics from the weekend.
Thursday, July 17, 2008
My staff has been great, they rotated taking me up M-W and my friend Donna is taking me today to meet Kate. I'm so excited Kate is here (she's my friend who used to work at Ouachita and about a year ago, moved back home to OK. She was my gal pal that I did everything with, so I've been missing her). We are going to play in LR tonight and she will take me to my apt in the morning.
I probably wont write any more during the weekend. It's Miss Arkansas weekend. We went up last night and Lauren looked amazing. It was swimsuit and fitness night. Tonight her prelim is evening gown and onstage interview and then tomorrow night is talent. Saturday is the big day. We are so proud of her and her hard work and can't wait for the results!!!
Sunday, July 13, 2008
But, I am tired at the end of the day. A friend who has been through this said it is like being hit with an atomic bomb, everyday and while it is not as explosive, you do feel like you have been hit by a Mack truck. It's amazing that something like that, that doesn't take more than 3-4 minutes can take so much out of you. But, it is nothing like the tired I felt during chemo.
REST is my new medicine and I'm not very good at that.
I clocked out miles this week, but didn't look at it before I came inside, so I will have to update you on that later. But, we did have a fun week. I'm so glad mom and Res were here. I know I always talk about how much they come and mess up and then have to repair, but when I came home on Thursday night from work, they had proven otherwise. The do know how to clean up!!! They had cleaned and put away everything. I think the vacuum cleaner and Lysol wipes came out! I reminded them that we can do that everyday...it didnt go over well. (please do not confuse them for slobs...here's the deal...when you are a person who lives in an apartment for one...it is hard to add more people to the mix)
We also proved this week that I am awful, can I say AWFUL (we talked this morning in Sunday School about what 70x7 means....you could insert AWFUL an infinite number of times here and it would still not be enough!) at Disney Scene It. I have some great friends, including my sister and mother who are not shy to remind me of this. But, here's my theory. I have a limited amount of space upstairs (and by that, I mean in my brain). So, I have to be selective about what I keep there, so knowing the name of every character of every Disney movie, or exactly what kind of creature they were, or exactly what they were or were not wearing, or who was their original voice, or what year it was written in and then digitally reformatted, or what song played after a certain word was spoken, is not something that I have time to store away. I honestly cannot remember being a kid who was "addicted" or super interested in Disney movies. Yes, I'm a fan and I know they are safe, but really....So, all things considered, I am not the person you want on your team for a trivia game. There are just so many things that I can be good at...We could write a paragraph about those as well.
So, week one is over. And another one is in front of us. We'll see what happens next.
Tuesday, July 8, 2008
I went in and got suited up in my gown. While that story and all the awkward weirdness is not the most appropriate story for the www, let me just say that "doctor office gowns" are funny. They are awkward and anyone who has ever had to wear one knows exactly what I mean. They cover up the "indecency" and yet they just create more in the process. So, there is your lesson part one.
On your first appointment, they take you in the Simulation Room. I assume this room is meant to do exactly that. You lay on the table, they put your mask on...which is not nearly as big a deal as it was last time since I knew what it looked like and that I could in fact, "Just breathe like normal".
As a side note, I think that is really a funny phrase. Every time you go in for a scan or anything like that, they say..."Just breathe like normal". It is not normal for me to be laying on my back, with a plastic mesh mask strapping me to the table. Then, you lay on a table that is not as wide as your body with your elbows bent and after about 2 minutes, they begin to become dead weight. So, your supposed to stay still, relax, and just breathe like normal, but your gown is pulled down to your belly button, two women you don't know have just had a marker fight all over your chest, you are strapped down to a 2x4 with a plastic mesh mask and your elbows are pulling down, and you are tensing your shoulders trying to keep them from falling off the table. So, "just breathe like normal"...doesn't really make sense.
That makes it sound a lot worse than it really was, but this is the mental battle that you have to overcome when you are laying flat on your back, staring at the ceiling. Lucky for me, I had a second chance. You know its funny when you are laying flat on your back, you have only one direction to look, and that's up. So, the first time in the simulation room, I started thinking about what I was laying there doing and I had this out of body experience.
I laid there as my mind was racing, thinking about what I was doing, not in a pitty party way, but more of a "no stinkin way this is happening" way. Any way, I could tell that lump that starts forming in my throat that makes me bite my cheek, right before I start getting up set, was finding its place. And because I knew what was next and I knew that if I started crying, I could not catch my tears so, I decided that I needed to stop. So, I told myself...STOP! You're a big girl, you cant change any of this and crying or getting upset is not going to fix it...so stop. Think about something else. So, I did. I know there has to be something at work I can think through, so I started on that and before I knew it, it was over.
Back to the "gown" room to wait for my name to be called to go back to the radiation room. Once you get back there, everything goes pretty quick. They get you on the table, get you all lined up and then you start.
If you have ever had an MRI or a CT scan, the room is much like that. You lay on the bed and you are rolled into a big donut type thing. Then the radiation rolls around on that. It does radiation from the top, then from the bottom. There is a beep that you hear when it is radiating so you know to be super still and then, its done.
When I say that I got a "do-over" or second chance, I mean that when I went into the radiation room and got all marked up and strapped in, I was laying there staring at the ceiling before they put the mask on and there are these filters over the florescent lights that are scenes. The are flowers or leaves...its nice that they covered that detail. But, this time when I closed my eyes after the mask was put on, I thought, you know I'm laying here on this table facing the heavens and I haven't even thought to spend this time doing the only thing that can help me and that is pray. You know as I did that, the time went by so quickly. And, I'm looking forward again to my personal time tomorrow. Funny how it takes you laying flat on your back, strapped in with no where else to look but up!
The ladies who are the technicians are really nice and gentle in the way that they treat you and handle you. So, that makes things even better. My appointments will be at 8:40 most days unless I have to reschedule for other appointments.
Tomorrow is a 2:00 day. I have an appointment with my oncologist tomorrow at 2:00 as well. It will be a juggling act to get it all in, but I am super grateful that my doctors have been compliant with everything.
and, there are more that you can't see!
Monday, July 7, 2008
we can't wait for her to be on the Ouachita stage!!
(much to the chagrin of my friends, I rediscovered a childhood favorite...
The road trip books with the invisible ink pens...I'm obsessed)
Our Fourth of July lunch...
Cinnamon Strawberry Nachos
(the nacho part was baked cinnamon/sugar tortillas)
I love creative outlets!
Tomorrow is day one of radiation. I'll let you know how it goes. I'm expecting only good things...
oh and my mom and sis have both gone to bed and here I am wired. Why was I super tired at 1:00 today and now...I'm wound up? This just doesn't make sense. grrr...I mean really, they played in Arkadelphia all day...who does that? And, its not like the first time they have done it...I'm going to start using this story when our Ouachita kids say there is nothing to do. I know better.
So, I've stalked everyone I can on facebook, checked all the blogs that I normally read, traced through a couple new ones and caught up on email...that's enough to make anyone tired...I see a Tylenol PM in my immediate future!
Wednesday, July 2, 2008
The lady came and got me and took me back to get in my robe. Now, I will go ahead and admit that I will probably add more details/ personal info to the coming posts than any of you will want to read or hear, but it is part of my process, and me laughing at it is like therapy.
When you go back, they give you a robe and tell you to just get ready. You get to put your stuff in a locker to keep it safe. Well, the lady hands me the robe and says to get ready. These robe are pretty confusing...they have 3 arm holes..yeah, go figure. If you know anything about me, you know it doesn't take much to confuse me. So, that was an interesting little puzzle.
I knew that I obviously needed to take my shirt and bra off for the markings and wasn't sure about the other, so I even took my pants off because I had on a belt with a metal buckle and I know that you cant have metal in there. Well, the main purpose of a belt is to hold up a pair of pants. While the majority of the time a belt is worn for "accessory" purposes, that was not the case today. Those pants are too big. Now, the logical thing would be to buy new pants if the ones you have are too big, but I like those pants and I cant find any that fit me (or used to fit me), like those, so I keep wearing them with my super useful accessory...a belt!
Anyway. Since I knew I had to take the belt off, and that my pants would fall down without the belt, I just went ahead and shed them as well. Of course as soon as I walk out with pants in hand, the lady says, "Oh, you didn't have to take those off". Well, now ya tell me! They should do a little more of the spell it out method. I know they were trying to not make me feel stupid, but I am, so I need it spelled out. Here is what you take off.....and here is what you can leave on.
So, no surprise, but I'm now the resident skank...the girl who is super willing to just take it all off for the cause!
So, you parade back to the CT scan room. I'm just making small talk the whole time to break the awkward silence. Moments like that are like those awkward moments on a date when neither person has anything to say because they are both trying to take in everything around them and think, very methodically, about the next statement or move. Yeah, there are a lot of these awkward moments in scan world and since I don't handle them very well, I often find myself telling stories or making statements that I'm sure the technician doesn't care a thing about...but they are nice enough to make me think they are listening.
So, yeah, there were about 20 minutes worth of those today. It is always very quiet and most people going through this are not handling it like I am, so I always have to find the fine line between being cheerful and respectful of the people around me.
So, you put all your stuff in a locker and then get this key on a bracelet that you get to carry with you...its a very creative system!
Then, you go back and lay down on the table and get ready to do the markings. They put a mask on you and before they can put it on you, it has to "cook". Now, when I think of cook, I think of cookies, cakes, casseroles, not masks, but whatever. I think they are going for the warming process that makes the material the mask is made out of malleable to conform to your face. I assume that this will be a mask that I will wear each time to help hold my face in place.
So, the 5 minutes of cooking are up and the mask is ready. I need to insert here that when I hear the word mask, I think of Halloween or a white plastic form. So, that is what I'm thinking when she says you will have a mask. Or, even that thing that you put your face in, at the eye doctor that holds your face in place while they poof a burst of air in your eye. So, I'm ready for that. Then, when she mentions that she is making it hot so it will fit my face, I'm then thinking it has a gel side on the back that molds to your face and then it can sit there. Or, I'm thinking about a project we did one time at a Disciple now when we talked about the spiritual masks that we wear. We covered our faces with Vaseline and then dipped strips of gauze in Plaster of Paris and made a form of our face. After a while it dried and we were able to peel it off our face. It was a really cool project, but, it made a mold of our face. I also thought about the process of how they make a whitening tray and thought maybe they were going to take a "negative" mold of my face and then make a "mask" that would fit me for when I come back next week and do the radiation. Any of these options were something that I was familiar with. But, none of them were actually the option that happened.
The lady said ok, I'm ready and then I saw her coming my direction with something and I knew it was the "mask". So, I closed my eyes so whatever it was did not get in them or mess with my contacts. When I did that, it meant that I did not see what they were putting on my face. You see I had tilted my head all the way back, so my chin was up and my neck was fully exposed. When I did that, she put this "mask" over my face and it literally (or atleast this is what it sounded and felt like) strapped me to the table. At first I was fine. She said it would have holes in it and I would be able to breathe like normal. Again, I was thinking, like most masks, that it had two air holes in the nose and since it felt like something over my mouth, that I did not need to move my lips or breathe out of them.
It was warm, so imagine, if you have ever had this done, the feeling of steaming towels being stretched across your face. You have a hole to breathe out of and you have to lay still so the towels form to your face. (It wasn't torture or anything, I'm just trying to paint a picture). So, kinda like a facial! Then, after she put it on there, she formed the bottom around my chin and held it for a minute so it could "dry". Then, she got a cool towel and rubbed it around the edges. She apologized for it being cool, but actually, it felt really good and like I said, almost like I think a facial would feel. Then, she let the rest of it "cool" while she went ahead and did the markings. Somewhere while she was doing the scan, I had to swallow. I was kinda scared that I would mess something up, but I went ahead and did it. When I did, the mask started slowly peeling away from my face. I thought I had messed something up. And then slowly, all the parts of it started peeling away. I quickly realized that it was just cooling and that this was normal, but there was an internal moment of panic.
There was also an internal moment of panic when I realized that my face was strapped down to the table. I thought it was a good thing that I'm not super claustrophobic, but this could be the moment where I become. Just think about the "mask" that Spiderman, Superman, or Daredevil wears. Yeah, then think about strapping you to a table so your head does not move...yeah, that was me.
I have a bulls eye in the middle of my upper chest just at the top of my breast and I have a mark on each arm and on my sides. The arm and sides are measurements to help line me up on the table and the one on my chest if for radiation. As I understand it since the mask comes down over my face and upper neck, those radiation markings are on the mask.
As one of my friends said today, that is a huge answer to prayer that I do not have to walk around with these purple markings on my face. I'm already staring to get funny looks. The arm markings are on the side of my bicep and visible with just about any shirt I wear. Since it is July and I live in the south, I don't really see me wearing 3/4 length sleeves or long sleeves very often, so I'm ready for the funny looks and I already had to explain myself once today.
I'm getting good at that. I try to use the "lymphoma" or "chemo" or "radiation" or "treatment" words instead of "cancer". They think when you say "I have cancer" that you have just mentioned the serving of a death sentence. It's not quite as morbid when you use the other words. And, while I like the shock value, I realize that most people are not as comfortable with it as I am.
So, that was today. It was fun. Nothing (too) embarrassing and nothing sticking me or invasive. So, that's all with CARTI until next Tuesday at 10:30. Mom and Resa came today for a week or so. So, we'll play for a few days and then it is down to business.